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        Supporter's Corner >> Supporter's Corner >> Tell us something about your SUFFERER
        
(Message started by: Ree on Sep 16^th, 2003, 1:06pm)

Title: Tell us something about your SUFFERER
Post by Ree on Sep 16^th, 2003, 1:06pm

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We all know each other but some of us have been here so long we forget detail. Can everyone add something about their sufferer. First name, eposodic or chronic, how long, treatments ? What works? Maybe we can help some of the newer people, as well as refresh some of the old information.

I'll start this~~ My name is Ree, my husband Dave is a sufferer of Eposodic Cluster Headache. We have been together for 15 years. Dave has been suffering since his mid 20s he says so, about 20 years. Before we started dating he didnt know what was wrong with him. After several docs took a look at him and several trips to the ER where docs would think he was just looking for drugs. Thinking I finally found a guy that loved me and he was going to die of some weird brain ailment, I finally found a physician that knew his stuff. He then sent us to a great Neurologist in Wellesley Massachusetts Dr L. Dana Dewitt. She has tried many treatments in the course of time that Dave has been her patient. More recently (past 2 cycles) Neurontin as a preventative and it seems to keep the attacks tollerable til peak of the cycle. His most recent cycle started on July 1st and is hopefully over. He has been pain free 6 days. Dave also had some great results with 02 this cycle and found that if he treated the shadow that comes after an attack he has longer pain free periods in between. I am interested in mentoring if any new supporters need an ear a shoulder or I should say eyes to write to...ree16angel@aol.com I also suffer from Chronic Migraine (not the same but still pain without the years of remission in between) thanks Ree oh I should also add in case your wondering Dave doesnt type so I have been his fingers on this board for the past 3 + years...

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Title: Re: Tell us something about your SUFFERER
Post by Margi on Sep 16^th, 2003, 2:27pm

Great idea, Ree

Our story is pretty much the same as yours. My husband, Mike, is an episodic sufferer too - untreated, undiagnosed and unmedicated (other than for SINUS infections that some idiot doctor kept throwing at us ::))until we found this site 4 years ago (thank you DJ!!). In that time, we've learned about oxygen, water water water, and, Mike's last cycle: prednisone burst, verapamil and lithium. Mike's last cycle was his longest ever, and we can't help but think that the meds prolonged things. He's at an age now where his remissions are longer though, blessedly, but the cycles seem to be more brutal too. I guess you don't get nuthin for nuthin, huh?

I'll never forget seeing that first cluster attack, though....scared the crap outta me. I wanted to call 911, I was sure he was having an aneurysm or something, but he knew better. It wasn't until 2002 that we finally found a doctor (the chief neurologist, in fact, at our Foothills Hospital here in Calgary) who actually knew what he was talking about. After a few heated emails and a VERY sorry receptionist, Dr. Becker, took us in within hours and had Mike on the pred burst (nasty stuff, that). I don't think THAT receptionist will ever try to put a clusterhead in cycle on their ONE YEAR waiting list again. We supporters have to have sharp teeth to survive.

OK, next? Mrs. Jackie? you got your ears on? Tell us about Blake. Line forms to the left here....

thanks for doing this, Ree - it really might help a new supporter landing here.

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Sep 16^th, 2003, 4:59pm

Wow.....where to start. It's a long story :P

Blake started having clusters before I knew him. He had the first cycle about 15 or 16 years ago. It started in Oct., lasted 1 month and was gone for a year. The next year it came back and lasted 6 weeks and was gone for another year. The next year it came back for 3 months and was gone again. The 4th year it came back and never left. By this time I knew Blake but we weren't an 'item'. He was in my office one day after a doctors appointment and telling me about the "migraines" the new neuro was treating him for. I asked him to describe it to me and he did. His description didn't sound like any migraine I had ever had and at that time I was a migraine sufferer. Later I pulled my copy of Mayo's family medical book and started reading......there it was.....CLUSTER Headaches and he fit the description to a tee!!!!! I called him and told him what he had...or at least what I thought he had. I'm sorry to say that I was right. He changed doctors and the new doctor started to treat him the best he knew how. Time goes on and Blake and I become an "item". I start going to the doctor with him and ask for a referral since we weren't getting anywhere. We are sent to Diamond Headache Clinic in Chicago (now that's another story... >:() The doctor said he was chronic as he had not been pain free for over a year.... Blake was hospitalized for 2 weeks and hooked up to IV's 24 hours a day. It did NO good. He was put on Verapamil, Lithium and several other drugs which I don't remember. They did tell us that oxygen was good but didn't inform us of the correct way to use it. We came home from Chicago with high hopes but were soon disappointed as nothing they did seemed to make a difference....Blake was still chronic with very few pain free days. We tried ANYTHING that we could think of...ANYTHING that anyone suggested. LOL...we even tried the magnet treatment...Blake went around for weeks with a magnet taped to his temple and slept on a magnetic pillow... :-[

OK...we got married a few months after the Chicago trip and floundered around for several years. Then one night about 3 1/2 years ago I was ready to take Blake to the hospital....which I had never done before. I didn't know what to do anymore. He was being beat to death with 10 to 12 Kips 10's a day and this had been going on for weeks. I was desperate and had no place to turn. He 'got easy' for a few minutes so I turned on the computer and did a search on cluster headaches....praying that I would find something new. Guess what I found :D I noticed there was a chatroom on this ch.com site. I thought what the hell....I'm going in (never been in a chatroom in my life... :P) I was greeted by Kip, Navygunner, Paco and some guy named Jonny... ;) They asked how they could help so I told them what was going on. I was told to ice down Blake's 02....put the line in ice water. It worked....the 02 started working again that very night. They asked that I stay on and let them know how it was working. I stayed on with those wonderful guys for a long time. They saved Blakes life that night and mine too. Bless their hearts. I sure miss Guns, Kip and Paco...that Jonny guy is still around...We've made wonderful friends here and we'll never leave this place even if Blake goes into remission tomorrow. You all are stuck with us forever!!!

Well....that's about it. We've tried meds. and more meds. Blake was on prednisone for almost 4 years but got off of it finally. He's now on Topomax and we may be having good luck with it....kinda early to tell.

I just want to say one more thing. Cluster Headaches SUCK. They try to steal your life, your happiness, your dignity and even your money. Blake and I made a promise to each other long ago. We will fight these together. When the pain free times come we won't let fear of the next attack steal our good times....we won't let CH be the center of our lives....we won't be ruled by the demon. We will fight the son of a bitch and kick his ass every time he rears his ugly talons. We won't be beat!!!!!! Blake is still chronic but we deal.

Whew.....that's about it...

Jackie 8)

Maybe I'll tell you about "the pain of a supporter" on another day... :)

Title: Re: Tell us something about your SUFFERER
Post by Miss_Deleny on Sep 16^th, 2003, 7:01pm

Hmm, well, lets see ....
I'm April .. I don't have CH but was once a migraine sufferer, so I know about them. Christopher (Prense) is my fiance' and has Chronic CH.

He had been having HA's for about 8 years prier to me meeting him. We met on the internet through a RP game we used to play. There were times that he would have to log off the game because of his HA's but all I knew of them at that time were that they were REALLY bad ones. I thought they were like the migraines that I used to get, you know the ones that you end up at the hospital because your pain is so bad that you lose your eye site. He didn't know exactly what they were at that time either .. just knew that they hurt like hell!

After about a year, I came to NM from FL to meet him in person. Two months after going back home, I moved out here to live with him and have been here since.

About a week or two after moving here, I started "seeing" him when he had his HA's. They were not and are not as bad as some of the people explain how theirs are but bad enough that it would break my heart seeing him in such pain. We tried everything that we could think of to ease the pain. Me thinking they were migraines, tried all the "migraine" cures and nothing seemed to help. He had been to doctors about the HA's before but still didnt know what was causing them. After a couple months of this, I finally told him he needed to find out what in the hell was going on. so he set up an appointment with the doc on base.

When he came home from the doctors, he told me that these HA's were called "Cluster Headaches". OMG! I thought is was a disease or something. He was given Verapamil as a preventive and Maxalt as an abortive. They didnt seem to do much other than knock his butt out after taken the Maxalt. Didn't get rid of the pain though. After a month or so, he went back complaining of the way he was feeling with the meds and they just raised the dosage. He tried the new dosage for a while and then said screw it and took himself off of them.

He seemed to be PF for a while after that and we thought that was the end of it .. he was cured!

Wishful thinking on our part because after a few weeks, they came back with a vengance! That is when he pushed the military docs into getting him a referal to a nero in town. It took a couple of months but he finally got the referal and about that same time is when he found this site. What a blessing!

This "nero" was a quack! Christopher went in there and told the nero what meds he had tried and what the results were. What did the nero do? He put him BACK on the verapamil at higher dosage than he was originally on. Christopher being the "laid back" person that he is, went along with the doc thinking that this guy must know what he is doing. After a while, he went back and told the doc that this was not working and the doc raised the dosage again. Again, after taking the meds for a while, Christopher went back again and told the doc the meds were not working so the doc put him on Topamax for a preventive but wouldnt give him anything for an abortive.

This is really when we were both reading about the different types of meds and the way they should be administered.

The doc had him taking the topamax and raising the dosage every week to the point that he was taking 300mg by the time he reached his 3rd week. The side effects were REALLY getting to us both! I was about to the point of paying a visit to that "nero" and giving him more than a piece of my mind! I started reading about Topamax and how it should be taken. I pointed out to Christopher that according to the information that I had read, he should not be taking 300mg until he had been on it for no less than 6 weeks. And that most of the patients that took it for CH found relief at a much lower dosage than that. Even at the high dosage that Christopher was on, it was not doing anything except putting him to sleep. That is when he fired his nero and got another referal to a HA specialist in a different town.
He was taken off of the topamax.

After 6 weeks of nothing, he saw a PA at a different military base and was put on Verapamil at 360mg as a preventive and imitrax injections for abortive. Waiting on the O2.

His appointment to his "new" nero is on Oct 30th.

Well, I guess that about explains him and his CH troubles to this point ... stay tuned for more information to come!

~April~

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 16^th, 2003, 8:12pm

This thread is off to a wonderful start what great supporters we have here. I like you Jackie thought I would find something different or a cure when I came onto the internet for the first time... I was shocked and relieved and sadened to find CH.com... Shocked because it was great, relieved because we weren't alone and sad to know that there were so many poor people out there suffering... love you guys ... lets try to get more supporters to post in this thread. thanks Ree

Title: Re: Tell us something about your SUFFERER
Post by Darleen on Sep 17^th, 2003, 8:08am

This a fabulous idea so here goes....

My name is Darleen and my husband John suffers with clusters. I started going out with him in 1986 and he had them back then. For the first few years, we didn't know what they were until he was finally diagnosed. He has tried several meds such as Sansert, imitrex and Margi's water treatment. He normally takes Tylenol #4 with codeine to kill the pain. He is episodic and normally has them approximately every 2 years or so normally in the summer. He started a new job in January of this year and wouldn't you know it - bang - clusters hit for almost 8 weeks this time. It was really horrible with the new job and no sick time but we managed as we always do. Like Margi said his remission times seem to be getting longer but he is getting harder and longer each time.

I found this site back in 2000 (I think) and I remember thinking OMG there are other people out there like us. Although John doesn't post, I always tell him what's been going on with the site and OUCH as well and we sure hope to make it to a convention to meet other who suffer with these headaches as well.

I had a change to meet Bonnie this summer and it was like we knew each other forever. It was great!!

D :)

Title: Re: Tell us something about your SUFFERER
Post by Margi on Sep 17^th, 2003, 8:40am

Wow. I've seen a lot of posts here at ch.com in the 4 years (minus 2 weeks) that I've been here, but Jackie - I gotta tell ya - YOUR post really rocked me. :'(

I have SO much respect for you supporters of chronic clusterheads. I honestly don't know how you do it. Jackie, you just take everything in stride and nothing phases you. You truly are the strongest woman I know, lady. In the years I've known you, I have NEVER heard you complain or whine about the pain you have. And I KNOW you have lots, gal. :'(

To read the part about Blake getting hit 10 - 12 times a day and getting NO break for all these years.....it just blows me away at how you both manage to "deal", as you say. Mike will peak like that, but....his cycles END and we both get a break.

You and Blake continue to be in my prayers, Jackie, and here's hoping the Topomax is the magic bullet you've been searching for.

And, yes, please DO write about supporters' pain. In my eyes, you're the expert on that subject and it would probably be very cathartic for you.

love and hugs,
Margi

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 17^th, 2003, 12:24pm

Attitude is everything and Jackie has the best attitude...I really could learn alot from you Jacks...

Darleen thanks for posting, and April thanks for the backgound we can learn so much from each other here. ree

Title: Re: Tell us something about your SUFFERER
Post by BonnieW on Sep 17^th, 2003, 6:09pm

The stories are all so much alike. Warren and I were married very young, and so I have been with him since the very beginning of his Cluster Headaches. We didn't know what was wrong with him for so many years, just kept going to the doctor and trying drugs and different therapies. One day I found an article in a newspaper where a doctor would answer questions that people sent in - and there was our answer!! It was so obvious to me that that was what Warren was suffering with. I cut out the article and back he went to the doctor with it. He did see a neurologist here in town finally, but he was worthless. We even drove over to Vancouver Island once to visit a retired chiropractor who was supposed to have some miracle cure for cluster headaches!! He had Warren lay flat on his back and then he put his two fingers under his neck in some postion (that I was supposed to learn and then do when Warren was having an attack!!) Anyhow, after 20 years of pain and frustration, Warren had his worst cycle ever in March-April 2000 and I was at my wits end. That is when I went to the internet and typed in cluster headaches. I found this site and WOW! We went to Las Vegas that year and since then have discovered oxygen and DHE - and also found an excellent neurologist who lives 500 miles away, but knows what he is dealing with. We are much more in control during the cycles, they actually are getting worse and longer as he gets older, but, thank goodness the breaks in between are longer too. I have said before that the worst sound in my life is waking up to Warren moaning beside me in bed, and just knowing that he is getting hit, and we are in for a fight. I cannot imagine how you that are married to chronics deal with it, but I guess it is just something you have to do right? My heart goes out to all of you....

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 17^th, 2003, 7:02pm

Bonnie girl I am so glad to know you... thanks for posting and love to Warren too... ree

Title: Re: Tell us something about your SUFFERER
Post by Woobie on Sep 19^th, 2003, 6:11am

Wow - I dont even know where to begin...

Ramon and I have been together for about 18 years. We have two girls, 13 and 9. (who fight like crazy).

Ramon (Cerberus) has had these HA for atleast 5- 6 years that we can remember.. so I've been with him from the start too.

He was only properly diagnosed with them last year (Finally!!!!) Usually, 2 cycles a year...They were always in Sept/October.. and in March/April.. and alway diagnosed as sinus infections. Or inflammed nerves in the sinus. That was in Iowa - misdiagnosed for 5/6 years.

I am ashamed to admit it.. but based on what the Dr's had always said.. "sinus infections".. and having HAD numerous sinus infections.. I always thought Ramon was faking the pain.. or, I guess, exaggerating it.. and I was - quite frankly - annoyed by it all.

Then, we moved to Illinois, got a new Dr. Then his next cycle hit. We assumed it was a sinus infection again.. went to the dr. Ramon told the Dr. "It's the same pain as all the other sinus infections I get every year." So the Dr. gave him antibiotics.. without question.

But it got worse, and worse...so..Went to the ER a couple times in that cycle last year, and they said "it's JUST a sinus infection.. you have the antibiotics already in your system...." and - of course, labeled him a "drug seeker" (again - but now he's a drug seeker in 2 states), but gave him demerol anyway....

So, the next day I made an "emergency appt" with our family Dr. Ramon got slammed with one in the Dr office.. and our Dr. took one look at him.. looked at his eye and his nose, and said "Let me try something, I think it's clusters".

He brought out the O2, and I threw a FIT. "what the hell is oxygen gonna do.. they gave him demerol last night in the ER and it didn't do anything". I was pissed!! HA HA HA.. but in 10 minutes, he was sitting up smiling. Saying "WTF? That's IT? OXYGEN??"

We left his office with a script for imitrex (pills, tho) and indocine (which didn't work) and verapamil.

Then we came home frome the DR and IMMEDIATEly turned on the computer, typed cluster headaches into GOOGLE, and been here ever since.

Once I read a couple things ... I was in tears... crocodile tears. I felt sooooooooo bad for doubting his pain all those years.. and being annoyed, and pissed off by it. I couldn't believe that I didn't believe they were as bad as they were. Every time he missed work because he was too tired from being up all night with a headache.. i was mad. And MAN - did I feel like pond scum. I still do. I will never forgive myself for not believing him.

Margi and Jackie and Jonny helped me with getting the O2 - (what a mess I was.. eh?) So, with everyone's help here, we got thru that cycle.

We decided to buy our first house and move during the time his next cycle was gonna hit.. and it worked.. staying stressed kept the beast at bay.. (atleast I like to think it was all the stress that did it.)

He is about to enter the sept/oct cycle, and I think - from being here for the past year, that we both know enough to get him thru this cycle. We already have ammo.. the O2 tanks are filled and waiting, and the imitrex is stockpiled ;) Got a "battle plan" this time.

I feel lucky that I found this site. I have called the Dr on a couple of things, and I'm sure most of you have too.. because of this site, and the people here.

Ramon kinda likes it here too!

Tina :-*

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Sep 19^th, 2003, 9:56am

Wow.....
These are some stories for sure!!!

Thanks for the idea, Ree.......'ya done good, honey'

I see a few differences in the stories but no significant differences....it's all kinda the same deal.

There is one BIG thing that stands out and that is the willingness in all of you to fight like hell for your clusterhead....for all clusterheads. Bless your hearts... :-*

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by Margi on Sep 19^th, 2003, 10:13am

Amen, Jackie - great posts, Bonnie and Woobie (and welcome back, girl :-*)

Interesting to note here too - most of us in this thread have been with our sufferers about the same length of time (except Bonnie and Warren who, I think,married each other when they were TWELVE! :))

Mike and I got together in 1986, same as Darleen and John, so 17 years now for us all. Jackie and Blake, Ree and Dave and Tina and Ramon - all about the same length of time. Was there a shift in the universe when we supporters all found these guys, or what? :o

I just have one question......WHEN do we finally get our medals, ladies?

p.s. Bonnie, girl, I felt what you said about hating to hear those signs in the night. :'( Or to see that look come over their faces as the smiles leave their eyes and they get set to do battle. It's the most helpless feeling in the world for a supporter.

Title: Re: Tell us something about your SUFFERER
Post by cathy on Sep 19^th, 2003, 12:21pm

Hi Cathy here....Wes has suffered with Episodic clusterheadaches since 1997 he went four years with only over the counter medication which as most know have absolutely no effect whatsoever after countless visits to the Doctors and in the end paying to see a neurologist we got a diagnosis and he was given Imigran/Imitrex which for wes worked most of the time.

We have been together 11 years and have 4 children, his clusters have brought us closer together, but before his diagnosis it nearly split us up, he got sick of seeing doctors, sick of taking different meds....which didn't work, he suffered re-bound headaches for sure from the paracetamol which he took like sweets and sick of me nagging him to stop taking the meds which weren't helping, I got sick of not being able to go out, sick of not getting any sleep and sick of him having headaches all the time...at least now things are under control now, but the pain of watching someone you love going through this tears you apart.

Wes's clusters have got worse as each cycle has hit, usually April and Sept/Oct....thanks to this site which I came across after finally getting him a diagnosis in November 2002 I have found friends and support which I thank everyone for.

Unfortunatley in February Wes had a heart attack this is still being treated and looks like a by-pass is on the menu....however since the heart attack he has only been hit a couple of times but has been shadowing heavily recently and his cycle is imminent if it stays true to form, due to the heart problems meds are not an option for him so he has the O2 at the ready!!

This is one of the most devasting conditions I think anyone has to deal with and my heart goes out to anyone who has to support of deal with these.

Wishing you all PF times and prayers.

Cathy

Title: Re: Tell us something about your SUFFERER
Post by BonnieW on Sep 19^th, 2003, 2:44pm

Margi,

And aren't they lucky they found us??!!!

Title: Re: Tell us something about your SUFFERER
Post by Margi on Sep 19^th, 2003, 2:54pm

LOL Bonnie, yer damn right!!

or as DJ would say........."F**in' eh", they are! ;)

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 19^th, 2003, 9:53pm

Every story the same yet each with its own twist. Wes has to suffer without Meds that has to be so hard... Tonight Dave got hit again after we thought his cycle was just about up.He got hit last night and tonight same time...I felt so bad with him sitting there saying what did I do? What did I do? I simply made him his tea got him his meds and promised it would end. Jackie can't do that for Blake. I don't know how you do it Jackie. You are so brave. Woobie thank God Ramon has you. Woobie Bonnie Margi Darlene Jacks Cathy April Cootie and many many more~~we all belong to the same army and thats why we have to stick together. I am touched by all of the words I read here today. Testimony to the pain we witness every day. love ya lots Ree
ps Im off to hunt Cootie and some of the others down to tell their stories.

Title: Re: Tell us something about your SUFFERER
Post by cootie on Sep 20^th, 2003, 1:17am

Ha-ha-ha.....the hunt for cootie is over Ree.......I'm here ! Ain't been here in ages......I get so caught up 'on the other side' here I guess and don't git any work done. Amazes me jus how 'similar' alot of the stories are......b-4 I came here I NEVER ever met or talked to anyone with CH or any knowledge of it. No one can really get the 'concept' of what goes on in a ch'rs life unless they have lived it.....they don't have a clue.......almost impossible to explain so they even get an idea of what goes on. Almost like havein a deep dark secret. Oh....I'm Pam by the way.......husband is Brad who has had this crap for about 20 yrs. We been married close to 30 yrs if you can believe that.......seems crazy....time flies ! First year of ch we had no idea what the heck was goin in....as usual we fear'd the dreaded brain tumor theory.......didn't know what ta do. He started out pretty much chronic.....had em every day but they went like clockwork at 6:00 am and 6:00 pm for a long time.....problem was him gettin em rite b-4 he left for work for the long drive then noisey presses at work and instruct the guys there jobs and calculate paper sizes ect. No meds that first year or so......he ate asprin and over the counter pain meds like candy thinkin they'd work if he took em early nuff. Thought he was maybe allergic ta sumthin or had severe sinus.....geeze. They fineally went away........so we tried ta forgit it wardin it off as sumthin odd and jus glad it was over. SUPRISE........they came back in 3 years and he tried ta fight em off on his own till I got him to my doc. Brad wouldn't go to the doc.....typical guy so I made him....we were gettin into hassles over it and had a 4 yr old that was hard to handle. Doc of course prescribed anitbiotics and sinus and cold meds or sugested over the counter ones also. They never went away so he went back and ended up with tranquillizers which he wouldn't take anyhow for a stress condition they thought....he works around big presses and not cool ta be groggy or dopey or out of it around them ! So back to the doc ......he got so MAD and impossible ta be around when under attack......not pleasant at all! He'd git hit while out or everywhere......I tarted to resent puttin up with it cuz I had NO idea what he was feeling and he wasn't gettin any pain relief and life got tougher.....neither one of us UNDERSTOOD what was happening. I was stuck home with a baby and looked forward to weekends out....he'd get hit and want to go home soon after we'd get sumwhere ! Fineally the next trip back the doc mention'd CH......he must of done sum reasearch "FINEALLY" !!!! He recommended a neuro.......got an apt and got on a better track with what was going on !!! Got on verapimil and imitrex pills.....he also did bio feedback. Cycles seem'd ta run about 2 months or bit less every 3 years. Now he goes to my doctor an internalist.....the neuro demanded he visit regular once to twice a year wether in or out of cycle to get treatment....and it was expensive and hassle goin all that way out there takeing off work.....he didn't want to go anymore when out of cycle and didn't want reminded I guess you could say ! When his next cycle hit the neuro's office "had no mercy" for him......said they had a 3 month wait and would not fit him in earlier cuz of him not following there PLAN. Wanted me to come in and give them about $ 150.00 cash or credit card to hold him an apt in the next 3 months.......huh......sounded like a real racket !! So I checked with a new doc I'd been goin to in our area that actually knew a little about ch...and he had enuff interest he researched it more and was up on treatments and meds......he did us good. Rite now Brad's outa cycle....last one was a bit strange and didn't follow much of a pattern for hits......had shadows more then usual and longer then usual but cycle lasted bout 7 weeks. Have to fight insurence for more then 9 pills a month but doc does that for us. We actually have a new doc now this past year cuz ours left for an out of state job but recommended this new doc that has done a good job picking up where he left off. Sumtimes when I try to explain these ha's to freinds and family I get too caught up in the description and frustrate myself cuz I know they aren't gettin the total picture. It's been a strange life with ch........have watched Brad's face evolve into a monster.......he doesn't want anyone around when gettin hit and gets extremly testy so I lay out meds and water or whatever and turn down the tv and close curtains and go git busy elsewhere. He doesn't want babied or pamper'd or even talked to.....so it's the best way. We went to our first convention this yer in NY........wow........it's as hard to explain as explainin ch to a stranger........but this was a wonderful unexplainable expierience in NY ! Ya'll gotta go. Pam that is up too late for all I have to do tomarrow

Love to you all !!!!

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 20^th, 2003, 7:57am

Hey thanks Pammy Dave says careful or you'll get Cooties on ya........... love ya lots lady Ree

ps we got to get together!!!!!!

Title: Re: Tell us something about your SUFFERER
Post by Linda_Howell on Sep 23^rd, 2003, 1:15am

hope you don't mind if an outsider(am I?) bumps this wonderful thread to the top.

bump bump bump....nope. That's my head against the garage door again.

LindaH

Title: Re: Tell us something about your SUFFERER
Post by Margi on Sep 23^rd, 2003, 1:23pm

Thanks for the bump, Linda.

You? An outsider? Not in this lifetime, darlin. ;)

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Sep 24^th, 2003, 12:52pm

on 09/23/03 at 01:15:31, Linda_Howell wrote:

outsider(am I?)

Outsider......I think NOT, Missy. When you're not suffering you're supporting....hell, when you're suffering you're still supporting!!

Now I'm wondering.....does that make you a 'suffering supporter' or a 'supporting sufferer'... ???

Hugs,
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by judyw on Sep 25^th, 2003, 10:47am

This is a wonderful thread and I would like to throw my two cents in here...and say thanks for all the support you have given and still give to your loved ones, and, especially for the support you spread around to the rest of us in the CH family...I agree with LindaH, to the top of the pile you should stay... ;D

Title: Re: Tell us something about your SUFFERER
Post by Tim_w on Sep 26^th, 2003, 3:02pm

All I can say is with out our suporters ! most of us may not be here today! ;D Thanks to you all :-*
Pain Free wishs around the room TimW

Title: Re: Tell us something about your SUFFERER
Post by taraann on Sep 27^th, 2003, 1:25am

I Love you guys!!! :-*

(just wanted to let you all know you are appreciated)

Title: Re: Tell us something about your SUFFERER
Post by Chia on Sep 28^th, 2003, 1:35pm

Wow...what a trip I just went on reading everyones posts.... :o...Amazing! I will try to give you all some insight as to what I have been going thru. Charlie & I met back in 1993 (I am his 3rd wife "yes I said third!!" and he is my 2nd husband) we got married in july of 1995. Charlie used to get the severe headaches with his 2nd wife but thought they were sinus problems, he even went as far as proping up his bed to try & relieve some of his pain, but back then they were not as severe as when he started with the "Dance" around 4 years ago..To be honest with you I too thought that it was a real joke when he would go thru an episode. It would happen usually around July and they would last for about 2 weeks. (That was then!) We went to the Doctor and just like everyone else he was put on sinus Meds, or allergy medication, We thought he was allergic to mold so we cleaned EVERYTHING in the house!. Last year he was given Zertec & Tylenol #4 and well we thought it was helping but he kept complaining that his nose was burning and the HA would not subside. I remember sitting in a resturant on my Wedding anniversary and the food was just placed on the table and Charlie jumped up and ran to the car while I was left to package the meal and pay the check. When I got outside to the car there he sat "Holding his head, crying with the air conditioner blowing in his face rocking back & forth" I looked at him in fear, I thought he was going to die! I nic-named him "IGORE" because everytime he would go into an attack this is what he looked like...We would go to the Doctor and I would say its "IGORE" time and the Doctor would know exactly what I meant. This year the HA started in Aug, he went for the 1st 2 weeks with the allergy meds & Tylenol #4 and they kept getting worse & worse ...He kept taking showers, sometimes as much as 5 a night,He couldn't smell anything (I couldn't use ANY body sprays at all!) He would get sick,He would take the beast for a walk and I would panic because I didn't know what was happening or where he was, The room had to be DARK, No Music... No T.V.Then came the Ice Packs...We tried the Heating Pad Then finally we went to the Doctor and he mentioned CH. I came home typed in CH and came to this web site....OMG!!! :o, ???, ::),He took the test and IT"S HIM!!! for the past 3 days Charlie & I have been plugged into the Computer trying to gather as much information as we can...He is so scared now because his headaches now have a "NAME" and what does the future hold? Does it get even worse? We are going to the Doctor tomorrow to try & get the 02 (It seems to be helping everyone else so maybe it'll help him too) Wish me luck (and a good nights sleep wouldn't hurt either!).... Chia

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Sep 28^th, 2003, 1:55pm

Thanks for sharing your story with us and welcome to the group. If you all need help or have questions just give us a yell.....there is usually someone on the boards 24/7.
You're doing the right thing. Education yourselves....that is your best bet when dealing with the doctors, insurance companies, employers, etc.

Sorry you have then need to be here but since you do it's the best place to be.....

Hugs,
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by Ree on Sep 29^th, 2003, 7:40pm

Welcome Chia this is great we are hearing from some new people... We are a great group of supporters and would love to hear more from you... Keep your chin up and know that you arent alone...love to you Ree

Title: Re: Tell us something about your SUFFERER
Post by ClstrHeadSupport on Oct 23^rd, 2003, 4:18pm

My name is Sara, my fiancee's name is Stephen. He is a sufferer of Episodic Cluster Headaches. We have been together for almost two years ( I know that's not long compared to most of you but I plan to be with him the rest of my life) he is the most beautiful, kind, sensative, funny, loving person I have ever met. As far as I'm concerned he's the last person on earth that deserves this pain. (I am so much more deserving then he is.) He has had these headaches since he was about ten years old, he's been to a thousand doctors and tried just as many different medications. He's been treated like a drugie (even made to show the inside of his arms once to prove he had no needle marks) He's had every test any doctor could think of, and even though he's been diagnosed with CH and was perscribed Stadol by one of the top specialists in the state he still has a hard time refiling his medication. Just recently his doctor told him there was nothing he could do for him and refered him to a pain management clinic. Standford. I guess it's supposed to be one of the best there is, we'll see.

This man is everything to me and I will stand by him for as long as he'll let me, and even those days when he won't. It hurts so bad inside to see him in pain. Being a mother it's only natural to be Dr. Mom, to kiss "boo-boo's" and make everything all right. It's so hard to sit there knowing there's nothing I can do, and even when I can there's always the chance it's going to make his pain ten times worse. However unlike what I have heard most of you say my fiancee likes me to be close to him when he gets an attack. Sometimes he'll push his head into my lap, anything to be touching someone he knows is there that understands I guess. His ex used to yell at him, telling him that he got them on purpose and that it was only when she had made plans for them. Maybe that's why he doesn't push me away. There are some days when he'll get an attack, and when he gets them sometimes the only thing that helps, even though it's only a little, is cold air from our wall air conditioner. Some days I'll sit there with him, icicles forming from my nose, after his head ache wears off he gets really cold. I'll bring over a comforter and he'll hold me so tightly, so much like a child grasping for comfort. I'll hold him until he passes out from the exahaustion an attack brings.
Well, that's a short version of my story. I hope that tells everyone a little more about me and my fiancee then some of you may already have known.

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Oct 23^rd, 2003, 4:36pm

Oh Sara....your story has touched my heart. You, dear lady, sound like a wonderful supporter. I've never met you but I must tell you how very proud I am of you.

My Blake likes for me to be right with him during an attack too. I think he feels safer that way.

If you were here I'd give you a big hug.... :)

Bless your heart....
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by Margi on Oct 23^rd, 2003, 4:37pm

Awesome post, Sara - I especially like the part about the icicles hanging from your nose. :) Those chills they get once the attack has passed ... you really nailed it. Gotta have that blankie handy.

You should teach a class in Supporting 101. Sounds like you're doing everything VERY well. You really touched me with this one.

Again, welcome to the family.

p.s. to Jackie - you and I were posting the same thoughts at the same time. That's just freakin SCARY [smiley=eek.gif]

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Oct 23^rd, 2003, 4:49pm

Margi...let's just say the 'great minds run together'.... ;;D
Oh...and we're right on with this one too.... Sara is a dandy.... :)

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by ClstrHeadSupport on Oct 24^th, 2003, 3:13pm

Aww...thanks guys. Gosh, it feels so good to talk about it. Like a huge bolder is being lifted off my chest. Sometimes just talking about it or writing about helps so much. I guess that's why this site was made. I try to keep a jornal, that helps, but it's nice to talk and actually get advice and a response from someone that just doesn't have sympathy but actually understands what I'm saying.

Thanks for making me feel so welcome.

Title: Re: Tell us something about your SUFFERER
Post by lapowers on Nov 1^st, 2003, 8:48pm

My name is Laurie and my husband is Terry. He is 46 and we have been married 23yrs. We have a daugther, Taryn she is 14. We live in Redwood City, CA. Terry has chronic CH. He woke up 13 yrs ago with a headache followed by a sinus infection. He took several antibiotics for 3 wks. The ENT doc said she need to do surgery to prevent a brain abcess. She assured him that he would wake up and feel better in a day or so. Boy don't we wish that happened. He woke up and told me that he was going to jump out the 2nd story window because that would feel better than the pain. They hooked him up to a morphine pump. No relief. The called in the pain specialist who I thought would tell me he had a brain tumor. He told us that he had somekind of headache disorder. Next stop the nerologist. After talking to my husband and following the pattern of the headaches he told him it was CH. The first six mo he was eposodic. They treated him with various drug combo's, oxygen etc. No relief. He became chronic, every day all day. The next 6yrs were filled with alot of trial and error.Next stop, Pain Clinic. The doc was great, willing to try anything and everything. Tried every drug available them some, nerve blocks, IV lidocaine etc.... no relief. He sent him to Scripps clinic in San Diego to the top doc who was preforming surgery to inject the nerve that causes the pain and kill it. After hearing that it could possibly make you worse , my husband wasn't willing to take the chance. Good Choice. Next stop neorsurgeon who recm'd a nerve decompression and said he would only preform it if he was able to get a doc from Stanford that had preformed 100"s of them. After 6 hrs of surgery and not waking up for two days, he had some temp relief. The Ch's returned so the doc went back in to see if the teflon pillow they had placed had moved. They found that part of his nerve was wrapped around an artery. When they came out the assured me that this was it and his pain would end.

I am going to send the next chapter of this journey in another post. So much has been done it will take a few posts to cover it all. I apologize for being long winded, but the sad part is this is what we have been faced with the past 13 yrs.

Title: Re: Tell us something about your SUFFERER
Post by lapowers on Nov 1^st, 2003, 10:06pm

I'm back withthe next leg of our journey. They sent us to Canada to Imitrex before it was FDA approved here. The doctor there said it was worth a try but didn't think it would be the answer. Terry hated the thought of giving him self injections but its amazing what lenghts you will go to to get relief.Two weeks worth of meds for $1500 and no relief.
The pain doc decided to try a last ditch effort and place a stimulator that is used for neck, back and arm pain.
Terry had 6mo of 100% pain relief. They left it in for a few more monthes to see if they could get more relief, but no luck. The doc recm'd since he had 6mo relief with something that he didn't think would work it was worht giving thought to going to Germany where they were doing stimulators for head pain. After months of trying to get in touch with the doc there and finding the right time to call with the 9hr time diff we got the info we needed. Now our only problem was paying for it. It's not FDA approved so no ins. coverage. We had an angel working for us and we didn't know it. A good friend went to our pastor and he asked a few people for help. He presented us with a fifty thousand dollar check and said there are people who are willing to help you get your life back.
Mar 97 we made the trip. The scariest thing I have ever done in my life. We don't speak the language, don't know the doc, dont'even know where we are going.

To be cont....

Title: Re: Tell us something about your SUFFERER
Post by lapowers on Nov 1^st, 2003, 10:38pm

cont.....
We had to stay in Munich for five wks. It was so hard to leave our daughter. We meet the doctor after along day of wandering around the hospital. you had to go from place to place to get blood work EKG etc.... The hospital was a huge teaching hospital. It was 3 times bigger than Stanford. He said OK we will do it in the morning, no explanation on anything. I told him we are from Calif and before we let anyone cut into our heads we get 2,3,4,5,6,7,8 opinions and need some explanation. He looked at me like I was crazy and told me not to worry. Boy I think I heard that somewhere before! The placed it temporarily to see how it would work. At first Terry didn't feel the stimulation in the right area and was sure it was a failure. Doc came in next day and said we will take you back in and adjust it. They got it right where it was needed and for the next few weeks I saw my the guy I married return. He began eating, laughing opening up the shades to let light in our hotel room. By the time 5 wks was up he was 100% pain free and one happy guy. When we returned home my daughter said to me mommy, daddy is weird he is dancing around the house playing loud music with all the shades up!!! I said no honey thats the daddy you have never had the pleasure of knowing. He remained pain free for 1-1/2 yrs. We had to find a way for him to go again because he knew it would help him. It took us awhile to get it all together. He went back to Germany in Aug 01 to have it adjusted again. They found scar tissue around the electrode, fixed that and placed another one (he has 2 now) to reach all the pain areas. He remained pain free for a few months.

Title: Re: Tell us something about your SUFFERER
Post by Margi on Nov 3^rd, 2003, 10:36am

Wow ::) I have NEVER heard of so much surgery for clusters!!

Title: Re: Tell us something about your SUFFERER
Post by lapowers on Nov 3^rd, 2003, 11:08pm

Unfortunately everything was a trial to relieve the constant pain. At the time he was unable to work, eat or just function on a daily basis. He lost about 40 pds at one point. Fortunately his docs never stop looking for an answer. It is what finally got us to Germany. I can tell you the neurostimulator implant changed his life. Now we are just looking for someone here in the states to be able to do the adjustments needed. Thanks to this great site, I had people respond and give me names of docs they know preforming the procedure here. Terry's doctor called one of them at the Mayo Clinic in Arizona so now I will call and get all the info to see if they will look at him. I am so happy I stumbled here and found all of you. Laurie

Title: Re: Tell us something about your SUFFERER
Post by Annette_Emond on Nov 4^th, 2003, 10:16pm

I first met Dave on-line, while doing research for another non-profit I was trying to help set up. I was living in Surrey, BC at the time. I had just moved there, started my old job in a new office, bought a house, and was considering getting a puppy. Then one night in July of 1998, over the cyber waves came a message from a guy who was researching the same areas for the same reasons- to help fight for children’s rights against abuse world wide. To make a long story short, our daily chats began to be interjected with more personal information and questions. Along about October of that year we decided that we were both interested in meeting in person. Well that was that! Once we actually did meet, we both fell in love at approximately the speed of light. By December, I was listing my house for sale and gathering all the necessary documentation for immigration to the USA. I came down on a visit for a few days in February, and that was the first time I saw Dave in cycle. He really hadn’t said much about the headaches before that time, and I probably wouldn’t have given it a second thought anyway- after all- I knew what headaches were.. as long as I had taken birth control I suffered from excruciating Migraines.. so… I understood. YEAH RIGHT- It took until April to sell the house, and then a few more weeks to get everything together to come to the US for 6 months on a visitor’s visa before I had to return to complete the immigration process. From Feb. until April I was going nuts!! He was being treated by a Neuro at the time who gave out whatever pill was flying on all the flags left by the drug reps that week. Didn’t seem to pay any attention to prescribing info saying certain ones should never be taken in combination- Days would go by with no word from Dave, I would finally call and he would have NO IDEA- “I just talked to you yesterday” or “didn’t you call me earlier today?” He was off work 3 months and thought it was maybe a couple of weeks. Anyway we got through that, and I sold the house and came down for 6 months on a visitor’s visa before we had to finalize the immigration. By the time I had to leave for Canada again in January, he was just going into the “shadows” preceding his cycle. I couldn’t stand to leave him, but I had to go back if I wanted to come back permanently. Fortunately the immigration thing went smoothly and quickly, and I was back at the end of February, with him in full blown cycle. We had to be married within 90 days of my entering the country, and even a tiny wedding takes work and planning. We made it through that too, and on our wedding day I watched him from the corners of my eyes all day as he shadowed and was hit- fortunately not real high, but enough to cause me pain and to cast that little cloud on our happy day. That was April 2000. Up until that time he was episodic from January thru April. Then in 2001- after having gotten through the dreaded November and December as they began to rob him of his sleep patterns- his cycle hit right on schedule --- and it has never stopped. Dave lives every day with 8 or 10 attacks. From January to April, and also now in September to mid October, his cycle escalates in frequency and severity of attacks. Some days I would think “ This is NOT what I signed up for! I want my life back! Where is that man I fell in love with? “ For crying out loud, much of the time he can’t even sleep lying down in the bed beside me.
But, this is what I signed up for… in sickness and in health… for better or worse… I love this man with all my heart. I could not imagine my life without him. He makes my heart happy! Even in the worst of times he can still manage to be thoughtful, caring and kind. He suffers every day more than any human should ever have to deal with. The least I can do is to try to make things easier for him while he is hurting, and hope for a brighter day ahead…… to be continued

Title: Re: Tell us something about your SUFFERER
Post by Annette_Emond on Nov 4^th, 2003, 10:18pm

continued..
Many of you may not know that Dave is presently completely disabled with a second mysterious disorder. He was hit very hard and fast with a cluster attack on August 26 of this year. It took even him by surprise, and he lost his balance in the office chair and landed on his butt on the floor. 2 hours later he had a strange “nerve” pain in his left arm. Over the course of the next 5 days that pain spread throughout his entire body, and in the ensuing weeks he became more and more unable to walk or use his fine motor skills. I see him sit at the computer when he can and take over an hour to type a simple paragraph. If any of you have seen some of his lengthy posts on the boards, know that they took him hours and hours to complete. I could have typed the same thing in five minutes if he would dictate it for me… but he believes in the personal touch. Part of supporting is to let. I have to stand back and watch him struggle to do things I could accomplish in seconds. I have to stand back and let him suffer through these headaches ( God I wish they could come up with another name) and this other difficulty, to be there if he needs me but to let him do what he can himself. I have to not hover. I have to put myself and my needs on the back burner a lot, but hey… nothing better than a good pot of soup that has been simmering for awhile. ;) Always remember through the bad times, When it’s good it’s great, and when it’s bad, you always have the good to look forward to again. God Bless you all… hold on .. you got yourself a ride on the roller coaster of love.
Annette Emond

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Nov 4^th, 2003, 10:45pm

8)
Wow Annette......great post !

You must be a great supporter. Dave is so lucky to have you.

Sending lotz of prayers to you and Dave....and lotz of pf vibes.

Thanks for sharing your story......

Jean

Title: Re: Tell us something about your SUFFERER
Post by Mastifflvr28 on Nov 5^th, 2003, 1:23am

Wow Annette,
I had NO idea you and Dave have only been married 3 years! I woulda guessed at least 20!

Your support is amazing...and even more amazing now with the NEW afflictions.

Keep on truckin, take care, both of you,
Love ya,
Mast

Title: Re: Tell us something about your SUFFERER
Post by Ree on Nov 5^th, 2003, 8:53am

Annette...You are the most dedicated supporter. and because of your post I am touched by any of Daves posts... We all love him here so much... You just hang in there. Your relationship is a true gift. You both were so lucky to find each other... God Bless you both Ree

Title: Re: Tell us something about your SUFFERER
Post by Margi on Nov 5^th, 2003, 10:29am

Annette, you truly are a star among us. I remember the time when you two were getting married, how excited Dave was about you :) I remember his posts on the old board about this lovely Canadian lady he had met online and we were all very happy for you both.

Having sat across the table from you in Vancouver (on Dave's birthday too!) I could see the depth of the love you have for each other. You two face life with quiet grace and determination - we could all take lessons from you both. God really HAS blessed you and it really shows! :) He's also given you both some pretty big challenges - but that's because He knows you can handle them together.

Keep up the great work, Annette - I loved your words "you have to let" - that really touched me. For a "newbie" supporter, lady - you've quickly become an expert. You've mastered techniques that it's taken the rest of us a lifetime to learn.

And, to Ree - thanks again for putting this post up. What a great idea! I'm going to try to stick it up here at the top, so it doesn't get buried.

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Nov 5^th, 2003, 6:22pm

Annette,
Bless your sweet, sweet heart. I do believe you are one very special gal. My heart goes out to you and your love, Dave. We are all praying for relief and answers for you all. Please know that we are all in your corner and are willing to do anything we can to help....even if it's just lending an ear.

Love to you and Dave....
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by lioness on Nov 5^th, 2003, 10:20pm

All I can say is.......WOW.........I have not been with my sufferer long, but hope to be with him the rest of our lives. He is a great guy wonderful and caring and does not deserve this pain. I just hope I can be as much support to him as all of you are to your sufferers.
Bless you all for the things you do for the sufferers in your lives. You are all truly angels.

Title: Re: Tell us something about your SUFFERER
Post by A_Clusterhead on Nov 8^th, 2003, 2:55am

:'(
My sufferer does not have CH, my sufferer lives with one who does. This is a two way street, but we both have to travel in the same direction. There are many off ramps along the way, but my sufferer has chosen not to take them. I could easily understand if they finally pulled off, as I can be quite a challenge many times over. Although we are in the same lane, heading the same direction, there are times I can speed off alone, leaving my sufferer behind, lonely and looking for where I might have gone. I’m usually found up the road a ways with a flat tire, but have no jack. My sufferer always has that jack, and with a lot of work, can get me back on the road again. They are tired from looking for me, they are frustrated that I left them behind, they are exhausted from having to work hard at fixing my problem. For a while, I try to treat my sufferer as best I can, to consider their needs and drive behind them, always in the rear view mirror. But, as time goes by, so does the distance, my foot eases off the gas until my sufferer is again out of site. During this time I am lost, lost in my own self pity or denial, hoping if I let the gas off enough, the engine will fail and all will end. After some time of slowly coasting along, I see my sufferer, waiting for me at the side of the road. As I go by, not paying too much attention, I feel that harsh bump from behind, it may take many bumps to push me on, all the time denting the bumper deeper and deeper of my sufferer. How much can they take before the bumper falls off and there is nothing left to push with? How many repair shops must they pass where they could have time off to fix their own problems?
Finally, we both run out of gas, we meet at the filling station, it is time to talk, it is time for my sufferer to vent their frustrations as well as time for me to listen and understand. We come to agreement, we will drive along together never letting these things happen again. But, the road is long, and we soon learn that it is one huge circle, never ending.
The routes I take begin again, and my sufferer has to go through the same frustrations as before. Why do this over and over again? Are they using better gas? No. Do they have better tires? No. Are the vehicles is better shape? No. It has nothing to do with any of these things.
It takes love, compassion, endurance and faith, more than we can comprehend. While I’m out driving on my own little road, thinking my vehicle is more damaged than anyone else’s could possibly be, when I use all my mirrors, I can see a far more damaged vehicle behind me, one that deserves much more attention than mine.
My sufferer is my supporter and does not suffer from CH, but from my lack of ability to abandon my beat up vehicle, fix theirs, and ride in the same vehicle together, where we could fix it together until it shines like new and we could take the next off ramp together away from the circle and ride into the future on a straight road sharing everything along the way. I can only ask forgiveness, and try and try until it is reality.

(To all you fine supporters of us Clusterheads, no words could convey how much we appreciate your endless efforts to keep us going. The role of the supporter is vastly underrated and should never be so. I hope myself and other fellow Clusterheads can try our best to remember that there is more than one suffering with our CH.
Thank you for being there, we love you all.) :)

Title: Re: Tell us something about your SUFFERER
Post by Margi on Nov 8^th, 2003, 2:52pm

This is a very cool post. Thank you for your kind words, A_Clusterhead.

Title: Re: Tell us something about your SUFFERER
Post by jrmom on Nov 9^th, 2003, 1:40pm

My little sufferer is 25 and has had to deal with CH for 15 years already. At this time she is in an episode that has lasted over 3 weeks. She has had some luck the last couple of years, with episodes being shorter, and less of them, however, now it seems she is back in the cycle again. I don't think it matters how much experience a supporter has, or how times you go thru the drill, when your loved one is suffering it just rips you up.
Since it appears as if we can't fix it or abort it with steroids, it's time for me to leave my home in the Southwest and head to the West Coast.
My clusterer becomes so isolated during these episodes, she won't allow friends to help out. She has been unable to even go to the pharmacy, store or do anything for that matter.
We tried to wait it out, in hopes it would end, but now my gut says it's time to go and just be there.
Do any other supporters find theirselves in this position?
Where their loved one closes everyone out, except for close family members?
Thanks for letting me air our frustrations, am leaving in the morning. JRMOM

Title: Re: Tell us something about your SUFFERER
Post by Margi on Nov 9^th, 2003, 4:51pm

Absolutely, JRMom, we've all seen our sufferers shut almost everyone out. We can't put ourselves in their place but we can try to understand where they're coming from. The sleep deprivation. The levels of pain that no being should ever have to feel. The fear of the next attack. It's got to be totally overwhelming and all consuming for them.

Hopefully, she's using oxygen as an abortive and has tried the Dramamine to get her through the night (it's availble without prescription)? Imitrex? Verapamil? There are weapons we can fight this with, just no magic bullets yet.

Go to her and just hold her. That's what she needs most of all, from you - your understanding and love. I've got a pretty good feeling that you're very good at that ;). We all get frustrated, just hopefully not AT our sufferers, but rather at the clusters themselves.

Safe journey, Mom - please tell her to check in here too. It will do her the world of good to find others who have felt her pain.

Title: Re: Tell us something about your SUFFERER
Post by HannahFroukje on Nov 16^th, 2003, 2:12am

HI!

Here's a Dutch newbied, not a sufferer but a supporter, I posted something on the general forum, but then I saw this section. Will not repeat myself on all stuff I wrote on general, but just a few details here.

Hubby is the one who "has them". Unfortunately, he is "blessed" [smiley=huh.gif] with a severe form of episodical cluster headaches, when I look at the kip scale on this site, I would say 9-10's all the time, and 6-8 each day when he's on his peak. [smiley=headbanger.gif]

You may shoot me, but I'm a person who says [smiley=sayno.gif] [smiley=sayno.gif] [smiley=sayno.gif] DARN, there SHOULD be something we can do about this. He had already tried all medicine in the book, only imitrex works for him.

When someday I visited my own doctor for something minor, he said to me: "Girl you look like hell, what's up?" and I told him my boyfriend (he's got another doc) has cluster headaches. He said [smiley=arg.gif] that's not good. He asked me just a couple of questions and said here, have him try this, and he handed me a little sachet with a few white crumbs in 'em, homeopathic stuff. So I said: "Oh , okay, couldn't hurt could it". So I went home, hubby was in a sort of coma after his last attack and I could not wake him up to take these tiny globules. So I just slipped them into his mouth and left for work.

The whole day I didn't hear a thing of him and worried sick what he was doing, usually he calls me after each attack, so I SHOULD here something every 3 hours, but nothing this time. I even tried to phone him, he didn't pick up the phone. I went home early .... to discover him still SOUND ASLEEP. I was going like [smiley=JAW_DROP.gif] how's this possible? He slept for 13 hours in a row. The next night he got only one mild attack, we slept through the rest of the night too. I called my doctor to ask about these homeopathic stuff and if I could give it again. He said go ahead and gave me some more. It helped ONCE more, again he slept for a long time. Then it obviously stopped working , called back, doc said that unfortunately this is often the case, that remedies work, but not long.

But HEY, it DID work! I was so baffled that I thought, this is something I want to know more about, and signed up for a school that would teach me more about regular medicine, but also about homeopathy and herbs and stuff. I've been trying to get hubby to a good homeopath that would treat him, but always remedies worked only temporarily and eventually they gave up on him. Then I went on myself, trying to solve the mystery, because I'm the one "on top of it all", so I can watch him closely and see what a remedie does. Sometimes we had succes, and we get a few really quiet days, sometimes it does nothing. I strongly feel as if I should continue researching this and TRYING to find the answer to why remedies only work temporarily. On that subject I've made some progress too. I've been reading my books for nights in a row, staying awake because I WANT to find the key to this question!!!!!!! I HAVE To! I WANT to be able to help more CH-patients in the future, if only one, it would be worth it.

Now where we are now. Hubby and I are in week 6 of his cycle. The last three days have been really good, because I found the next remedy that worked for him. Unfortunately yesterday and tonight it became clear to us that this remedy as so many other is NOT the one key to unlock all mysteries, because it's gradually coming back, last few attacks were 4 hours apart so it's only a matter of time that he will be on 3 hours apart again :(. I spent all evening reading yesterday evening, and came up with a possible next remedy, he took that one hour ago.

We learnt to deal with hopes and fears a lot better by now, and learnt to take these few days without any attacks as a pleasant gift, and learnt to deal with the fact that then the attacks are coming back. Hubby just takes what I hand him, he's the perfect guinea pig [smiley=bigguns.gif] (well I should mention that I do thorough research on remedies before I give it to him, and I'm extremely carefull in what I pick, I don't want to run the risk of making things worse!). He's very much in favour of natural medicines, because in his case they grant him a few moments of rest with no side effects and his body can clean up a bit from too much imitrex!!!

If there would be anyone among you who is really into herbs and homeopathics, I would just love to get into personal contact with you and exchange ideas and views we could all benefit from, perhaps not NOW, but in the future.

I really hope that someday, I will have this mystery unraffled, well, homeopathically spoken that is, and I will be able to help out SOME CH-patients. This time has not come yet, but I hope it will! Therefore I'm doing my thesis on CH, and I'm busy developing a questionnaire, which is based on the questions a homeopathic doc will ask you when you go there for help. This together with other questions based on having CH.

Keep up the good work supporters! They NEED us, we have to try to make life easier on them.

Title: Re: Tell us something about your SUFFERER
Post by Tiannia on Nov 26^th, 2003, 4:19pm

I wish that my husband would come here and talk to you all. I think that it would do him a lot of good to be able to talk about what we have had to deal with since mine started in July. With 2 little kids at home and both of us working full time, I wish I could find a way to make these things go away. I know that mine are not constanantly as heavy as many of the ones who get hit on the board, but I also know that he hates not being able to help. And that it makes him angry as well. I know that I have closed off at times during these damn things, because I hoped that I could ease the stress on him and the kids if they did not have to "deal" with me, but I think that that just made it worse. At this point, I have had 12 days PF since July. But I am not really being treated at this time either, as my insurance changed and I have to "show" the DR that I get hit everyday.

Hannah, I have been trying herbal remidie to try and at least lessen my HA's each day so that I can continue to work. (My luck to start a new job and my first HA's were in July, I still dont have sick time). It has helped a little, but there are some things that I think might work better and I can not get a hold of the herbs to make it. So anytime you want to brainstorm, I am open.

Tiannia

Title: Re: Tell us something about your SUFFERER
Post by AlanG on Dec 1^st, 2003, 4:45pm

Hi All, Im a cluster sufferer but my wife isnt. we just recently broke up and I think that the breakup had something to do with me being crabby, not being able to sleep at night, sleeping in a chair to stay up right, so i wasnt sleeping with her. My life feels really messed up by this medical problem and i dont know how to approach her to get her involved with you folks. I know alot of our problems have come because of the way this CH has affected me in more ways than just pain. Could someone please take some time to contact her and get some info to her about what its like to live with someone who has CH. I think if someone does she might be able to see the reasons why we have problems in the family. her email address is mgeisdorf@yahoo.com my email address is alangeisdorf@yahoo.com.
Thanks in advance for anyone helping out. AlanG..new member

Title: Re: Tell us something about your SUFFERER
Post by Margi on Dec 1^st, 2003, 5:14pm

Hi Alan, I'm VERY sorry to hear about you and your wife.

I know this is none of my business, but as a supporter.....I'd rather hear the info from my husband, than from a complete stranger. Don't you think your wife would feel the same?

Why not just e-mail her the link to this website, and also to our Family Services Team (the link is at the bottom of my post here.) There is a "panic" button at the Family Services Team that will put her in touch with other supporters via email if she does want to talk about this. Not one among us would mind talking to her, I guarantee you that, but it may ruffle her feathers a little if we approach her blindsided like this.

Just my opinion....and you know what they say about opinions. ::)

Title: Re: Tell us something about your SUFFERER
Post by AlanG on Dec 1^st, 2003, 5:19pm

Thanks margi, maybe your right , Im new here and didnt know about the family support thing, I will try that route and send her a link to this site. Thanks Much, and thanks much again for supporting us and not turning your backs on us. we really do need understanding people who look out for us as at time we are so immersed in pain our world stops.

Title: Re: Tell us something about your SUFFERER
Post by Margi on Dec 1^st, 2003, 5:26pm

good deal, Alan, and ...just so you know? If YOU ever need a shoulder, there is always someone around here.

It's commendable that you've asked for support for your wife - VERY commendable - but I want you to remember, it's available to you, too. OK?

Title: Re: Tell us something about your SUFFERER
Post by Ree on Dec 1^st, 2003, 7:27pm

Ditto from me too Alan... sorry for your troubles... you can maybe give your wife a few addresses to contact if she would like Im at Ree16angel@aol.com... she is welcome to write to me. Good luck and God Bless... ree

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Dec 2^nd, 2003, 1:00am

Such a shame......CH affects more than just the sufferer. :'(

I am sure that the supporter's that post here are of a very small percentage of actual supporter's that exist world wide. The larger percentage have no knowledge of this site.

However, the supporter's we have here are the most dedicated folks I have ever known. But it takes some knowledge and understanding of CH, in order to be able to give this great support to their sufferer.

I am a sufferer/supporter. Currently I am pf.....but choose to support those I can. I have had the pain....and I have had the support. Therefore, I KNOW what the pain is like, and I KNOW what a toll it takes on family. Understanding is of great importance. Without the understanding, it is difficult to give the much needed support that a sufferer needs.

This thread, started by Ree, is full of real honest emotions that supporter's feel for their sufferer. This thread alone should give a real insight to someone who has difficulty supporting.

As you know, Ch affects each of us sufferer's differently. We are all individuals, and the same things don't work for all of us. So, certainly, it is understandable, that it would be the same for our supporter's. They support according to what the needs are for their sufferer. Therefore, the support, while being given out of love for their sufferer, is also a bit different. Without the knowledge and understanding of CH, this becomes a difficult task.

Jean

Title: Re: Tell us something about your SUFFERER
Post by DONNY on Dec 17^th, 2003, 1:32pm

So happy I found this site. My husband Donny 39, has suffered with CH for 25 yrs. We have been married for 10 yrs. They have gotten worse every year since we have been together.

I am very angry >:( with the Neuro's that we have seen. No help don't know what they are looking at and won't look at anything we print for them. We went to see a new one yesturday she gave him imitrex and steroids told him to keep taking the lithium and oxygen also up'ed his elavil to 50mg a night. Any idea what the steroids are for? Seeing as she was to busy to explain.

We were told that they may oneday just go away, do they? Do they get worse and then go away or just stop suddenly? Do the meds prolong the cycle?

Any answers?

Lori

Title: Re: Tell us something about your SUFFERER
Post by Paigelle on Dec 17^th, 2003, 2:00pm

on 12/17/03 at 13:32:01, DONNY wrote:

Lori, the steroids are prednisone and sometimes will break a cycle of headaches. The first time I took steroids, it broke my cycle and I didn't have another cycle for 2 years. This time I took the steroids and the day after I finished my last pill, the headaches were back.

From my understanding, sometimes the headaches just disappear. I usually have a cycle every one to two years. Always in November though. So there is hope that it will stop, but there is also a chance that it will be back. But you can't think like that. Good luck to you and Donny.

Title: Re: Tell us something about your SUFFERER
Post by DONNY on Dec 18^th, 2003, 2:50pm

Thany you. I don't have alot of time to check e-mail. normally only while I'm at work.

The dr only gave him enough for 5 days. Do you think that they will come back? He only had to very mild maybe a 2 or 3 this morning. Said he still feels pressure behind that eye.

I did finally get Donny to sit down and read about the shrooms and we may try this for his next cycle. From what we read it's best to start as a preventative.

Lori

Title: Re: Tell us something about your SUFFERER
Post by daughterDL on Dec 19^th, 2003, 10:30am

My name is Amber, daughter of Donny and Lori. I am 20 years old. I have never really seen him get a really bad headache, but the other night I overheard. It broke my heart!! :-[ He is such a loving and wonderful person. But I am sooooo happy they have found a site where people actually know what he's talking about.

Title: Re: Tell us something about your SUFFERER
Post by rivergirl on Dec 23^rd, 2003, 12:55am

on 09/16/03 at 13:06:45, Ree wrote:

Title: Re: Tell us something about your SUFFERER
Post by rivergirl on Dec 23^rd, 2003, 1:11am

Hi My name is Vicky and My husband is Clint, he has gone ten days with what we now know is cluster headaches. We have had one night of no headaches and after nine days, I feel so helpless. This has just started we have been to ER twice and finally got an appt with his primary. What a joke. I tried to tell them what i have read on this subjest and they refuse to listen to me. WHile my poor husband of 3 years is suffering and theres nothing for me to do. He was back in the Er today and they gave him a shot of toradol and a stronger presciption on fiorcet. Which he his chewing because by the time the pill works the headache is gone.

I tried to tell them to give him somthing inhalant to take care of the pain and they refused. So I guess we will see what happens tomorrow at his doc appt. :'( We have tried heating pads, and tennis balls but i don't have the strenght to push hard enough. if anyone can give me some advice i would so appriciate it. As you can see it is after midnight and iI don't want to go to bed and wake him.

We are tired and exhausted and want this to go away. ahis father died at 48 with a brain anurism and we thought history had repeated itself so we have had a cat scan and all was clear. can these headaches lead to strokes or anurisms. I thank you for listening and I know I sound paniced and I am.

Thank You agin and will read everything that comes my way.

Than kyou dee for answering my e-mail and letting me vent. I was so scared.

Vicky Kratz

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Dec 23^rd, 2003, 5:45am

Hi Vicky and welcome to the board.
I too am married to a clusterhead.
My best advice is to read all you can (buttons on the left) before the doctor appointment.
Most clusterheads need a preventative medication and an abortive medication. Many take verapamil and sometimes combine it with lithium. There are many but those two seem to be the most common. Oxygen therapy and Imitrex are the abortatives of choice by many. There are others too...like Zomig and Maxalt.
Pain killers/narcotics are of little use....some say NO good at all for cluster headaches. We have found narcotics to be useless.

Ch hurts like all hell but is not terminal and does not lead to any other terminal conditions (that is the current information)

Good luck and let us know how you do with the doctor.

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by WKU_lady on Dec 23^rd, 2003, 9:38pm

Well, this is a first for me. I've never been in a chat room, if this is what you call it?! My husband of 18 years has had cluster headaches for at least three years. He is a chronic sufferer. We frequent the emergency rooms at least 2-3 nights a week. He gets 125 of Demerol and 75 of Phenergan every time. He has gotten to where now he tells the docs what will work. They sometimes won't give it and look at him like a "druggie". He has lost his job, is on disability. We owe out our butts for medical bills and still have no cure or anything that helps except the shots in the ER. He has been to the Diamond Headache Clinic in Chicago, two weeks to be exact, with no relief. I'm at my witts end, don't know what to do with him or myself. Please, I'm desperate, I'm going nuts here and I'm sure my husband is too. I'm worried now that he is hooked to the drugs because even when his headaches are not as severe as some of the others, he still goes to the ER. He has tried just about everything. Where does a person go from here? I'm not sure how much longer I can hang on. I know that some of you sufferers are thinking I am a cold-hearted bitch but after a while, it takes it toll on a marriage and family. Anybody else out there going through what I am? If so, please, let's talk. I need some advise, reassurance, or something.

Title: Re: Tell us something about your SUFFERER
Post by BlueMeanie on Dec 23^rd, 2003, 10:26pm

WKU lady,

You mention nothing about any of the drugs your husband gets to stop cluster headaches except O2. Is he doing it right ? Check the Oxygen info to the left. ALL the drugs you mentions DO NOT stop cluster headaches.

Any narcotic drugs just either knock you out so you don't feel the pain or just make you high so you don't care about the pain.

There are very few, if any, people here that have CLUSTER HEADACHES that take narcotic drugs you describe.

Has your husband tried IMITREX, & Amerge to abort a CH ? There are about a dozen preventive meds to help keep them from coming too. Spend a bunch of time reading all the info you can.

Good Luck ! Sending PF vibes.

Title: Re: Tell us something about your SUFFERER
Post by CLivingston on Dec 31^st, 2003, 10:10pm

Hi, my name is Cherie(42) and DH is Tom(50). We've been married 17 years and he has suffered with cluster migraines for most of our marriage.

Tom has cycles of clusters, usually 4-6 times per year lasting 7-10 days each, with up to 6 migraines per day. Initially, we followed the same route that many of you have by going to our family Dr. His only solution was to administer narcotic shots that DH hated because they would only knock him out of his head, not get rid of the pain. This treatment lasted for almost a year, culminating in our Dr. refusing to give him any more shots because he suspected Tom was just a junkie >:(

I was heartbroken when my family Dr. of 20 + years said those words to us ... if only he knew the excruciating pain associated with DH's HA's! Ultimately, his statement freed us from his mistreatment
and misunderstanding of Tom's HA's and we felt we needed to search elsewhere.

I don't remember how or who referred us to Tom's neuro and I wish I did so that I could thank them from the bottom of my heart.

We made the first appointment and upon meeting the doc we knew we were in the right place. He took my 6'7", 250, somewhat shaggy looking (longish hair and long full beard) master carpenter SERIOUSLY when Tom told him of the unbearable pain. He finally gave us a name to call the evil monster - "cluster headaches". The Doc told us that there were many treatment plans we may have to try before finding the right combination and he was right. We (I keep saying "we" because we're in the together!) ran through a relatively short list of meds before we found what we believed to be the perfect combination - Sansert as a preventative and Imitrex or Zomig as an abortive. He used this combo for several years, and although many migraines "broke through" the preventative Sansert, he was able to stop them with Zomig or Imitrex tablets.

God forbid - for some reason we found we were unable to get Sansert anymore and the frantic search was on once again. That's when Verapamil entered the picture and it worked for months ~ until THIS cluster Tom is currently in. My prayer is that his Doc will either up his Verapamil dosage or have another trick in his magic bag.

The current cycle has been brutal. When DH gets a headache, sometimes he, as he describes it, "hears the train coming". Other times, the headaches just appear full force with no warning. The pain in reflected in the deepness of his wrinkles around his beautiful eyes. All I have to do is see "the face" and my heart starts fluttering, my soul starts aching for him, and I know there is little I can do but be handy with the meds, help him in and out of the multiple cold/hot shower combos, and try to pry him off the cold tile in the bathroom and back into the bed.

We have one small, slim ray of hope - Tom's older brother stopped having the migraines around age 50, and Tom turned 50 two weeks ago. Our most fervent prayers are that Toms will begin to fade away also.

We are very fortunate in the Tom is self employed and determines his own hours; therefore the HA's effect only his pay for days missed, not his livelyhood. On the flip side of that golden coin is the tarnished silver side of our health insurance - purchased privately and with a $2500 deductible annually - very little help in paying for these very expensive medications. Just in the last two days we've spent $300 on imitrex injections, and will likely top $1500 before this cycle is over. Does anyone have any suggestions on how to get his medications cheaper? We're fortunate that the Doc's office gives us some samples, but honestly DH runs through those in a matter of days.

Thanks for slogging your way all the way to the end. I'm so grateful to have found this board and look forward to coming back often.

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Dec 31^st, 2003, 10:58pm

Hi Cherie,
Welcome to the board!

Did you read any of the info in the links on the left of this page? One is "imitrex tip". Some sufferers swear by that info. You should read that one for sure.

There is tons of info here on this site. You will not find a better group of support folks anywhere!

Sorry that your hubby suffers with these terrible ha's.

I am a sufferer/supporter. I have been pf 113 days, due to a Prednisone taper. However, I certainly can vouch to the fact that CH is the worst pain I have ever endured.

Read all you can here......and read the posts. You can go the the regular message board, and read those posts and learn alot from what has been posted.

Hope your hubby finds the relief he needs. Feel free to come here anytime. Usually someone here 24/7.

PF vibes and best wishes to you and your hubby...

Jean

p.s. I see you are from Baton Rouge....we have some great folks here from Louisiana. Sufferers and supporters.

Title: Re: Tell us something about your SUFFERER
Post by boomboom on Jan 2^nd, 2004, 6:29pm

Hi, this is boom boom. I am married to toader who has developed cluster headaches just recently. His started for the first time this December and they have hit him hard. We were lucky to get in the headache clinic 3 weeks into his cycle and get him on meds. Unfortunately, I don't think the meds have done much for him, he has just gotten worse. Of course, I don't know maybe they have made it better than it otherwise would have been! He is now in the sixth week and finally this week he was able to get some sleep at night and his attacks are more tolerable and mostly stop by oxygen. He has had only one imitrex shot this week, so I think he has started to get better. I am assuming the headaches increase in the intensity and frequency as the cycle goes on and start to get better as the peak is over. Is that a good assumption? He is such a gentle soul and it hurts me deeply to see him suffer so much. The moments that he has been pain free, he has been playing with our nine year old and working so hard to be in good spirits. I see this as a total life changing experience for all of us. At the moment all I pray for is this cluster to end soon:)

Title: Re: Tell us something about your SUFFERER
Post by CLivingston on Jan 2^nd, 2004, 7:14pm

Thanks for the warm welcome TxBassLady - you aren't by any chance on Toledo Bend are you? We sold our camp on the LA side a few years back and sure do miss it!

boomboom - the onset of Cluster HA's has been a life altering event for our family. Tom tries his best to not let them interfere with life but most times that is just not possible. Our children have learned that at any given time their dad may be stricken and that it's not within his control, nor his fault. We've learned to adjust accordingly, appreciating the events that aren't marred by clusters all the more.

Unfortunately, one of our daughters suffers with regular migraine headaches, so she is extra compassionate when her dad has them and that helps them both.

FWIW, Tom is now taking a steriod for 5 days to interrupt the cycle and it is working - PRAISE! PF for two whole days now.

Title: ;)Re: Tell us something about your SUFFERER
Post by KarenT on Jan 2^nd, 2004, 7:41pm

Hi, I'm Karen. Haven't been here in a while but here goes. (Big, Deep breath........)

My hubby, William, has suffered with episodic CH since he was 16 years old (he's 38 now). His father and brother suffered similar headaches but have never been diagnosed. He wasn't diagnosed until his early 20's, but before then, he says he was convinced he had a brain tumor. We've been married for almost 9 years now and I did not find out about the CH until 4 or 5 years ago. He hid it very well. He cycles about every other year but has managed to miss the last cycle. I have no idea what's up there- but I'm not complaining! ;)

As some of you know, I'm an RN (I just quit my job in the ER 'cause I got tired of trying to make a difference and nobody else giving a darn-but enough about me), but I knew absolutely NOTHING about CH til I got here. Gosh, it's been so long, I can't remember how long it really has been.

William's last cycle was, I guess, 3-4 years ago and we were at our wits end not knowing what to do. His doc called him in an outpatient shot for Nubain and Phenergan and 15 minutes later he got another of Stadol and Compazine. Now mind you, he's standing in the hallway of the ER banging his head on the wall and the people I worked with looked at him like he was insane. When we left, he was drunk with a headache.

The next night, the CH returned worse than ever. I got in touch with his doc and the next morning she got him a referral to a neuro in Nashville,TN. This guy gave William a Medrol dosepack ( low dose prednisone) and Verapamil. That worked for 3 days. Then one night William sat straight up in the bed and said "Did you hear that?" He swore it sounded like someone had hit a gong over his head. That was a Friday.

That is what brought me here. I was scared he was gonna kill himself (and he was a police officer at the time so he had the means) and came here pleading for help.

On Saturday, I called the on call neuro, Dr Alfred Callahan, in Nashville. This man talked to me for over an hour. He got William on Prednisone 80mg for 5 days, then 60mg for 5days, 40mg for 5, 20mg for 5 and finally 10mg for 5 days. He increased the Verapamil to 240mg daily and told me to buy some over the counter Zantac and Tums. The Tums were to replace the calcium lost and the zantac to prevent ulcers from the prednisone. He laughed about the medrol dosepack and said it was only good for rashes and poison ivy/oak. I asked him if CH was his specialty. He said, "No, but I grew up watching my father have them." I couldn't believe our luck. A doctor who knew exactly what we were going through.

We, and I stress WE, have been painfree since the end of that treatment. Thank God and the miracles of science.

Knowing all these folks with CH were here on this website was one thing for William, but the get- together in Nashville really blew him away. For the first time in his life he knew he was truly not alone. We met Dave and Leesa, Jayne, Jonny and several other people. I was sick and couldn't hear a thing anyone said but the look on my husband's face said it all.

And in the words of one of my favorite Southerners (real or otherwise-LOL)--- "and that's all I have to say about that." :D

Okay, Leesa. Your next. I'm calling you out girl. Don't make me drive the 2 miles to kick your hiney!! You know I love ya! ::)

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Jan 3^rd, 2004, 1:45am

Cherie,

Just so happens I actually live in Texas, but I do have a lakehouse on Toledo Bend. On the Louisiana side, about 13 mi north of the dam, in the Chetwood Subdivision.

Bought it in 1995.........

Were you guys close to there????

Jean

Title: Re: Tell us something about your SUFFERER
Post by anniebrook on Jan 6^th, 2004, 1:25am

Hi my name is Annie and I am new here. My husband Dave is a clusterhead. His HAs started about 14 years ago before I knew him. They were very sporadic at first from what he says but in the last 4 years (we've been married for 3) they have gotten progressively worse.
He too was misdiagnosed over and over with sinus problems. I found this site while searching about headaches a little over a year ago and we finally were able to go to the doctor and say "This is what he has. This is the treatment that we want to try." And the dr. was great and worked with us. Dave currently alternates between Imitrex 20mg nasal spray and Migranal nasal spray as abortives. The Migranal seems to be the most effective but makes him a little drowsy so he only takes them at night. We have also found that O2 works like a charm but haven't been able to get him any since his doctor left town and his new doctor hasn't seen him yet. Until Feb of '03 he was eposodic but after a car accident in Feb he has become "almost" chronic. I say almost because sometimes he goes a week PF and then other times it's 4-6 Kip 10's a day. Right now it's one a day (about an eight) BUT we are trying something new that seems to be working so we're keeping our fingers crossed. What we discovered last week has us hopeful and maybe it can bring some hope to others too. Dave's brother and father are diabetic but Dave and his sister are hypoglycemic. We have found that anytime his blood sugar level drops, it throws him into a CH. If he's able to drink a little OJ and then do about 10 minutes of aerobic exercise (like running in place) and then just relax, the HA stops and disappears with no drugs! He's eating several small meals a day now and snacking before bedtime and today he was PF for the first time in months.

We both realize that we may never get rid of these monsters entirely and at this point he says he'd be happy to just go back to being eposodic. At least then we knew to stock pile meds and be ready cause it was coming. We're not going to stop trying to find a "cure" tho.

God bless all of you who support a clusterhead. I know what a hard road it is to travel and even tho I haven't posted here before, I've been reading and know you are some incredible people who have given me and Dave hope and strength when you didn't even know it.

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Jan 6^th, 2004, 2:29am

Hi Annie,

If you have been reading here on the board for a while, then you already know what it's all about.........

HOPE.........for a cure

STRENGTH.....to endure

I am a CH sufferer/supporter......I am currently 119 days PF (due to Prednisone taper). However, very recently, while at a meet & greet, I had the unfortunate opportunity of seeing a fellow CH'er get "hit". It was truly a heartbreaking experience for me. Even though I have suffered the pain of CH.......I was NOT aware of the impact the ha's have on those who witness the pain and suffering. It really opened my eyes to the full impact Ch has on our lives........whether we are the sufferer......or the supporter, definitely CH alters our existence!

This site holds a very special place in my heart. The sufferers and supporters here are the greatest folks in the world.

They will help you thru the bad times, and support you, even when they, themselves, are suffering. So much love and caring......

Please hang in there for Dave. There's nothing better for a CH sufferer, than a great supporter. I know it takes alot of love and patience. But surely, you will be rewarded tenfold .

My best wishes to you and Dave.......and hopes for lots of PFDAN's.......

Jean

Title: Re: Tell us something about your SUFFERER
Post by Margi on Jan 6^th, 2004, 9:59am

Hi Annie, welcome.

Two things I wanted to say about your post. You say he's almost 'chronic' but then he gets a few days break.... the definition of chronic is more than 12 months in cycle without anymore than 2 weeks of unmedicated pain freedom. If he's only been in cycle for a few weeks/months, then he's still episodic. Hopefully that break he's getting is signalling the end of a cycle?

Also, you say he feels he's aborting attacks with orange juice then aerobic exercise? I'd say if he responds to oxygen as an abortive that it's the exercise that's killing the attack and not the juice. I guess you never know, but it makes more sense to think that getting his blood moving and oxygenated is helping him. Just my two cents' worth. I'd sure push to get him a 'script for O2 and not accept that the doctor is making you wait until February. Print out the oxygen info from the buttons to the left, here, and take it to a doctor (even if you have to go to emergency to do it) and don't leave without a prescription. Supporters have to have sharp teeth sometimes!!

Hang in there and.....everyone.....please feel free to start new threads here. You don't have to limit yourselves to this one post (even though it is an awesome icebreaker, thank you Ree!)

Title: Re: Tell us something about your SUFFERER
Post by anniebrook on Jan 6^th, 2004, 11:49pm

Margi,

Thank you and everyone for the welcome.
So far it's been 11 months with very few PFDs but he hadn't been getting hit but once or twice a day til recently. That's why I say almost chronic. I pray he is still eposodic and this will end soon.

Also, I know the exercise helps alot but he tried that without the OJ and his BSL stayed really low and the HA didn't subside until his blood sugar was brought back up. That's why I know it's the combination that is working for him. Unfortunately tonight he wasn't able to get anything sweet in time and he got hit. Luckily he said it was only a four or five this time.

Once again, bless us all!

Title: Re: Tell us something about your SUFFERER
Post by Paigelle on Jan 8^th, 2004, 9:33am

Annie, I am so sorry your husband is having such a time with CH. Let him know he can have all the support he needs here and they we are happy to support the supporters too.

Title: Re: Tell us something about your SUFFERER
Post by Leesa on Jan 9^th, 2004, 11:33am

Well now that Ive been called out..........LMAO here goes.
Dave is my better half and has suffered since 92. Ive been his supporter now for 3 yrs. Its been a roller coaster ride to say the least. Not one I would wish on another living soul. Well yea I would just 1 Kip 10 on a few folks. So they know the true meaning of pure pain! ;)
The first time I saw Dave get hit with a Kip 10 was when we met in Nashville for the very first time. We met Jayne, Jonny (that I already knew from the HOT lanta convention of 01) and was able to meet Karen, "slick" Willie, and several other Chers. When Dave got hit at Jayne's place he didnt want me anywhere near him. Jayne gave him her O2 mask and got the ice and the Trex. I couldnt understand why at the time he didnt want me to see him, or get any where near him. All I wanted to do was help. I had never felt so damn helpless before in my life. Seeing him dealing with the beast and not being able to help in some way even if it was small was killing me! All I could do was stand back and let it happen. He walked, paced, banged his head and rocked. I wanted so much to take the pain from him and make it all go away. But I knew I could'nt. Not being able to help made it even harder and made my heart ache in a way I never knew. He was afraid if I saw him like that, that it would scare me and I would leave and never return. Boy was he mistaken! :P I consider my self a pretty tough cookie and handle damn near anything so this was NOT going to scare me off! Dave has the typical left eye swelling and tearing up, runny nose and all that stuff. He's lucky in some ways he never has been woken up in the middle of the night from the beast. OH hell I just jinxed my self here. *knocking on wood* ;)
Dave and I have made many trips to the ER an he's been treated like a "druggie".I've gotten so mad that Ive called nurses all kinds of nice 4 letter words as well as a few docs. Hehehee ;;D While in PA visiting his parents, a trip to the ER was made. *snicker* the nurse got his BP and all that good stuff and sent us to a room. While there Dave was banging is head off the wall. The nurse had the balls to say to him, while he's having a Kip 10 "now thats really going to help". I came unglued! I grabbed her by her coller and told her, "you get a doc in here NOW or I am going to hurt you" Needless to say the doc was there in just a second. Hehehehe ;;D I never told that dumb b*tch that I was sorry either cuz I wasnt!!
The only real help that Dave has really gotten was from his doc in CT. This doc is AWSOME. Dave also suffers from Meeegraines as Jonny would say LOL. The doc treated both of these "head aches" as 2 seperate beings (as they should be) The doc was of great help in getting Dave the true help he needed.
Ive watched Dave over the last 3 yrs. bang his head so hard that he had bruises from the head banging. Since we've been together there have been many times that our entire family has been put on hold due to the beast. Its really sad when your loved ones have to suffer from such pain and there is not a damn thing you can do but get the ice, O2, Trex and sit back and watch. You have NO control or "quality" of life cuz the beast says other wise!
Now thats my story and Im stickin to it, Leesa ;;D

PS: Karen ya dont have to make the 2 mile trip to whip my ass now so there!! :P :P

Title: ;;DRe: Tell us something about your SUFFERER
Post by KarenT on Jan 9^th, 2004, 1:51pm

Ah geez, Leesa!

I had forgotten about Dave getting hit at Jayne's. Remember him and William pacing up and down the sidewalk? That was before he finally gave in and tried the O2. Has it really been that long ago?

Wow, time has really flown. But I can't remember if I was having fun. LOL ;;D

Title: Re: Tell us something about your SUFFERER
Post by Leesa on Jan 9^th, 2004, 3:21pm

Yep I rem. all that like it was yes. Yep Will stuck right with him the whole time to keep in "up" so he wouldnt give in! I think they walked for at least a mile that day. Then Dave FINALLY gave in and used the O2 the hard head! Whoda thunk a CHer with a hard head go figure! LMAO Yea Karen its been that long. Geessshhh I feel old!! LMAO
As for you having fun, NOT due to your cold but we had a good laugh over the bean dip and Piper thats for sure! Rem. that? ROTFLMAO and the look on Will's face was priceless!!!!

Title: Re: Tell us something about your SUFFERER
Post by robbie on Jan 10^th, 2004, 10:11pm

hi...
my name is robbie. i found this website today. ilive with my father.hehas been feeling ill for about six weeks now. it started with a sinus infection and the onset of a herendous headache and eye pain. he told me that it will make him sit stright up in bed from a dead sleep. he paces the floorholding his eye as if he is tring to boor his fingers into his skull around his right eye. :-[ the doctors said the sinus presure may have bruised the muscle behind his eye, causeing it force the eyes to look oppisite of each other. but they realy do not know. they have done x-ray's, mri's and bloodwork. every thing seems normal. he has seen his family physician, talked to his heart doctor, and seen an eye doctor. the other day the pain got so bad he had my youger sister take him to the er. there they ran more blood work, normal. one of the doctors there suggested thet he may have "cluster headaches" niether of us knew what they were talking about. so taday i searched the web. and here i am. please if anyone can give me so more insight to this nightmare let me know
thanks
robbie :-[

Title: Re: Tell us something about your SUFFERER
Post by Ree on Jan 11^th, 2004, 7:24am

Hi Robbie and welcome, check your email... and keep reading this site this is the place that you need to be if your dad does have Clusters. Good luck and God Bless love to you Ree

Title: Re: Tell us something about your SUFFERER
Post by WSH2CMFRT on Jan 21^st, 2004, 12:59pm

Hi everyone,

This is my first posting to this board. :-/
My boyfriend Jack is the one with the CH's. We've been together for about 3 years and we've been living together for about 1 year. He's had the headaches well before I met him. He's 31 years old and I believe they started in his early 20's. He has episodic CH's.

He's in a cluster right now and it kills me to see him in so much pain. It's the most helpless feeling in the world knowing I can't do ANYTHING to comfort him. He's having about 3 or 4 a day and waking up in the middle of the night with them. It's been over a week without a good night's sleep.

He's on Oxygen therapy. It seems to ease it for a while but it never really gets rid of it and he's back on the oxygen tank within another hour.

Is there anything I can do? Anything at all? I want to rub his back or something while he's on the oxygen tank but it seems like he doesn't want to be touched when he has a headache.

I have another question too... can he die from this? Has anyone ever died from this? Is there a point where I may have to take him to the ER? I want to be prepared in case anything should happen and want to know what signs to look for if there is any.... [smiley=huh.gif]

I appreciate this website and thank anyone who may be able to answer my questions :)

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Jan 21^st, 2004, 1:48pm

Hi WSH and welcome to the board.
I'm married to a clusterhead. Yes, it is terrible to feel so helpless but there may be some things you can do for him after the attack is over....like maybe a cold drink.
Talk to him about what he wants or needs. Communication is very important between a sufferer and supporter.
Is he on any other medications...either abortives or prevents.?
To answer your one question...No, clusters are not terminal......they are the worst pain know to man/woman but they are not terminal and are said to not lead to any other condition. At least that's what we've been told by different doctors.
As to going to the ER...most clusterheads will tell you that it is a useless trip. The attacks are usually over before they get the attention needed. We have never been to the ER....

Good luck and keep us posted. If we can help just ask.

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by WSH2CMFRT on Jan 21^st, 2004, 3:48pm

Thank you Jack, it feels good to here that. It amazes me that no one knows exactly what causes it or how to cure it. Do you know of any medical facilities out there doing extensive research on this? If so, do they publish updates somewhere I can read them?

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Jan 21^st, 2004, 6:48pm

WSH,
Dr. Peter Goadsby of the UK is the leading researcher on CH. You should be able to find articles on his research by doing a search on Google. He has also published a book.
Also...have you been to the OUCH site (button on the left)? There is a library there.

Jackie 8)

Title: Re: Tell us something about your SUFFERER
Post by WSH2CMFRT on Jan 22^nd, 2004, 8:36am

Jackie,

Thank you very much for the info. I'll check it out! ::)

Title: Re: Tell us something about your SUFFERER
Post by lindafus on Jan 26^th, 2004, 1:57pm

[/b][b][i][/i]Wow where do I begin? Well here goes this is my story with my husband David. We will be married for five years in April of this year. When I first met David I knew nothing of these headaches until we moved in with one another. I still can recall the first headache he got, I saw this man of my dreams laying there in a fetal postion almost in tears telling me his head is hurting. I saw veins popping out on his left side of his head I was so shocked actualy it scared me. I have been a Counselor for over 13 years, and at the time he was under alot of stress so of course my couseling kicked in and I felt it may be due to stress (wow was I unaware), so I attempted to make his life a little stress free. Then the next one happen and the next and then, well you get the point. I felt useless I couldn't help this man that I loved. Then finally relief he went for 6 months without one. Then the "devil" came back to our home. David and I would argue so much he was getting to be hateful with me, destroying things, and at times he would speak of suicide. Here I was a Counselor trying to treat him (I know, I know big mistake) but I was willing to try anything at this point. Dave would go out drinking to ease the pain, leaveing me at home alone for 8-10 hrs at a time only to come home drunk and soon afterwards the "devil" was there as well. Well finally he stopped the madness of drinking and I was so proud. The headaches started getting to where they came daily, then within hours of one another. It got so insane I couldn't help, what could I do? I loved on him gave hot rags for his head I felt to blame. I would watch him lay in the cold floor rocking himself, beating his head on things, saying he wished he was dead over and over. Then about 8 months ago I got depressed I blamed me for not being able to come up with an answer, I couldn'at stand seeing him in pain, I became cold towards him and became very very fustrated when his "devil" came it was every few hours. :( On January 2, 2004 David move out and I moved in with my daughter. I find myself more miserable without him than with him. I miss him. We are talking now that the anger has died down and we both are hopeing to work through this nightmare. David found this site and he is positive about it. This is the reason I am here now. Well, this is my story and I am here for anyone that needs the support.

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Jan 26^th, 2004, 6:31pm

Hi Lindafus....Welcome to the site.

I'm married to a clusterhead. He's been chronic for 10 or 11 years (we've lost track of the wheres and whens)

As you have seen and experienced, CH not only effects one physically but mentally too.....both the sufferer and the supporter. The suffer feels many emotions...depression, guilt, anger, etc. The supporters feels helplessness, despair. inadequacy, etc.

I have found that over the years all these things are more manageable. As you both learn more about the affliction the more you will understand all that is involved...then perhaps you can both deal a bit better. It's tough and takes hard work on both your parts. It's very important to understand that it's no ones fault.

Now a few questions.....has David been to see a good doctor or neuro who knows about clusters? Is he on any prevent. meds. Does he have abortive meds.? Does he now understand that alcohol is a huge trigger for most sufferers?

As pitiful and horrid as CH is there are things that can be done to make life better. My advice is to study everything you can...here and on the OUCH site. Encourage David to do the same. Understanding and educating yourself is key to dealing with this. Maybe you all can communicate better as you learn more. This site is full of people who will help you both.

Good luck....I'm hoping things work for you all.

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by lindafus on Jan 26^th, 2004, 11:44pm

Jackie

Thanks hun for the support, to answer your questions I just recently asked Dave to go to the neuro Dr. He has to do alot of his medical through the VA which they are not willing to help too much because of the cost. We did however Finally got them to start him on Imitrex (which he has obtained Imitrex from private Dr's. Dave has had these most of his life.

Title: Re: Tell us something about your SUFFERER
Post by helpless23 on Feb 11^th, 2004, 7:13am

Thank GOD I found you guys! The supporters!!!!!

Hi, my name is Toni and I have been with my CH guy for only almost 5 years now.
My sweetheart started having them since he was 20 years old - so I'm not sure whether he's chronic or episodic - I'm not familiar with all the terms.

He too was diagnosed with Sinus Infections, Migraine Headaches, TMJ - even had ALL his top teeth pulled out to try and stop the pain. Cortisone injections in his face. The poor dear has been through the mill and back, just like all of your Significant others have.

He started drinking and that seemed to take the CH's away for a couple of days. Needless to say, a couple of beers went to a couple of quarts of Vodka and he became an alcoholic. He also was in a very bad marriage at the time (we thought it was his ex wife for the longest time!). He went to AA, stopped drinking, 3 weeks after he stopped, the headaches went away and wouldn't rear it's ugly head again for 7 years.

November of 2003, they started coming back. He never told me until they started becoming daily at the end of December 2003. He's had them everyday since then.

Found a neuro who actually KNEW of the term CH and prescribed an MRI and Frova at first. She said before she put him on any serious meds for treatment, she wanted to rule out anything serious. MRI came back normal (thank God), Frova ran out, went to get a refill and the Ins. Co. wouldn't do it. (Check my post under the meds section) I called the Dr. with NO patience left. When the frova ran out, he started getting them 3-5 times a day, anywhere from 2-4 hours at a time. Literally, no sleep at all. Like I said, I called the Dr., left her 3 messages, she never returned my phone calls. When she finally called, I exploded and told her that she HAS TO HELP HIM NOW! She immediately got him in the office on a Friday and gave him a 7 day Prednisone pack, a TON of free samples of Frova and Indomethacin. He started it on 2.6.03 and was pain free up until last night.

We weren't sure what was working, but now we know. It's the Prednisone. He had to take his first does of the Imitrex Spray last night and it took way too long to work.

I try to tell my family about his headaches, but they are from the old school days and really don't understand the seriousness of what he goes through, so that really leaves no one to talk to. Not only about his horrible pain, but that I can't even do anything about it when it hits.

Dr. will NOT prescribe O2 for him because we have 4 children, 3 small, one teenager and just refuses to do it. Her ignorance came out and said "When you get a CH - go to the ER to get Oxygen". I told her "Whats the point Dr. By the time he goes to the ER and waits for God knows how long, the headache will be gone." So I'm at a point now, that I don't know what to do.

He has one more pill left of the Prednisone and a HUGE bottle of Indomethacin with some of the Imitrex Spray.

The way it hits - is unbelieveable to me. The smile just shuts right off of his face and he gets red and you can tell that he's going through something that you really can never fully understand unless you've gone through it yourself.

You all know what I mean.

In any case, I'm doing my best, as I know you all are, and it's great that this place exists for the sufferers and the supporters. It gets so hard sometimes to watch the person you love suffer while you just sit back feeling helpless - hence my screen name.

Thanks for sharing all of your stories and thanks for making the post about it. I want to learn all I can from this board.

Much love,
Toni

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Feb 11^th, 2004, 5:26pm

Hi Toni...
Welcome to the supporters board.

You, Sweetie, sound like a wonderful supporter.

Just one thing......don't forget to take a bit of time for yourself when you can. Margi's 'bubble bath' works.. :)

I don't understand the reasoning behind no 02 for your hubby...she think the kids are gonna huff it... ::)
She really needs to rethink this as 02 is the #l abortive for CH.

I'm sure you're reading all the information here and on OUCH. Education is power.

Keep us posted and let us know if we can help...

Love & Hugs,
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by krock23 on Feb 11^th, 2004, 7:15pm

on 02/11/04 at 17:26:32, Jackie wrote:

Hi Jackie,

I'm posting under my husbands screen name because my 14 year old son has found EBAY and it is in use. :-)

About the time for myself...I have sooo much, and he has taken such great care of me through everything I have gone through, it's my time to give back ya know?

As I said, I don't feel like I'm giving anything back because there's nothing I can do to stop the beast, but
I am here for him (supporter). :-)

Ken has taken such great care of me.

Besides I have all day alone to do all that great stuff! I can dedicate myself to him when he needs me.

As for the O2, Dr. called today and told him that she's not going to put him on a long term Prednisone LIKE SHE SAID she would, and she is afraid that the O2 will explode with the kids in the house. She insists that he go to the ER when he has an attack. I've already told her that it was pointless because by the time we get there and get some O2 (or even seen for that matter), the CH will be gone. She's stupid and FIRED as of tomorrow! I will do the deed and find someone else who KNOWS how to treat him instead of making him her guiney pig so SHE can learn what we already know thanks to you guys and this board! Wish me luck ! With any luck, I'll be back on MY screen name tomorrow when my son is at school! :-)

I love him so much!
(mind you, this is Toni on Ken's name! :-))

I love it here though.
Thanks for the warm welcomes!

Much love,
Toni

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Feb 12^th, 2004, 2:09am

on 02/11/04 at 19:15:23, krock23 wrote:

About the time for myself...I have sooo much, and he has taken such great care of me through everything I have gone through, it's my time to give back ya know?

As I said, I don't feel like I'm giving anything back because there's nothing I can do to stop the beast, but
I am here for him (supporter). :-)

Toni,

What you are feeling is normal.

And......you're right. There is nothing you can do to stop the beast.

The support comes naturally.....out of love. That is what you are giving back. The support is as important as the right medications. There are many sufferers here on this board who have noone in their life to support them. They have us......but I am sure it is not the same as having a wife or husband to support them.

I am a sufferer/supporter. I have seen CH from both sides. When I was in a cycle, this board came to my rescue. I have been pf close to 4 months, now. However, I have been with other sufferers when they got "hit". It is a heart wrenching experience. I felt somewhat guilty because I am pf......and yet, people I have come to love and care for were getting hit.

The way I deal with that is to give all the support I can. These people know that I love them and they know that I care. They need the support and understanding, but they don't ask for it very often. Most of them will continue suffering......continue posting....and continue to support others they feel have it worse than themselves.

You are doing exactly what is needed. You are there, and giving support to someone you love, who is in pain.
Don't ever sell yourself short. I know you can't see it...but the support you give is worth more than anything you can ever imagine.

Sending you and Ken lots of love and tons of pf vibes !

If you ever need anything.........we're here.

Jean

Title: Re: Tell us something about your SUFFERER
Post by Margi on Feb 12^th, 2004, 10:42am

Lovely post, Jean. :)

I sure didn't mean to offend you by my comment on another post about only those that live with clusterheads truly understand what it means to be a supporter. I was more talking about the whole sh'bang of living the daily complications that this condition brings to a relationship. It's not just the attacks that a supporter has to helplessly endure, it's all the other stuff too.

I think probably only other clusterheads can give each other absolute and Been There Done That support. That's where the non-afflicted supporters stumble because we've never felt that pain and have to rely on our sufferers to guide us through it all. And there are times when the sufferers don't have the capacity to guide. It's a tough row to hoe, that's for sure.

I just wanted to make sure I hadn't hurt your feelings by what I said, Jean - it's a tough thing to describe, the supporters' dilemma. It's deep and wide.

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Feb 12^th, 2004, 11:34am

Margi,

No, you have never hurt my feelings.

Guess if you posted something that you thought offended me.......I must have missed it. LOL

I guess I get absorbed in the original post......and am not always aware of things said in the responses.

CH suffering and supporting is very deep and wide. I hate to think of myself being lucky to have experienced both sides.........but I will say that experiencing both sides has made a major impact on my life.

CH breaks my heart.......but this site and the folks that contribute to it, make it so much better. And the opportunity to meet and love another sufferer or supporter............well that's just icing on the cake.

Thank you for all that you do. It does make a difference.

Hats off to you great supporters,

Jean

Title: Re: Tell us something about your SUFFERER
Post by bird_at_the_back on Feb 12^th, 2004, 11:35pm

Hi I am new on here just found this post, haven't yet read it all but here's my story.

I met Pete 14 yrs ago and shortly after we went out for the day at around lunch time he tells me he's got a headache but not that it's a cluster attack... He tells me that about a week later. So we go home and I think nothing of it, Iget a bit miffed when I don't see him or hear from him. So he tells me but I don't understand it. Anyway his bout ends and things get back to normal, till the next yr when it happens again, this time he allows me to see the full horror. Little did I know that this was nothing compared to pure hell he goes through these days. I discovered the OUCH site about 5yrs ago but never joined then just read topics and tried to get info for him. I kept pushing him to get O2 prescribed, eventually he mentioned it to his GP. His CH was diagnosed by his previous (well informed) GP 16yrs ago but the new one was not prepared to accept this and refered him to a neurologist who diagnosed it for a second time. After several unsuccessful attempts to get O2 properly scripted he is finally going to get it later today.

Title: Re: Tell us something about your SUFFERER
Post by TxBasslady on Feb 13^th, 2004, 3:17pm

Hi NYRenee,
Welcome to the board.

CH, unfortunately, alters a person's life, lifestyle, attitude, and overall personality.

Depression and anger are common. Misdiagnosis is also a given for most CH sufferers. Stress comes from the excruciating pain, and the things I listed above.

The most important thing is a possible correct diagnosis.

There is a cluster quiz located in the links on the left. If William does not come to this site, then you could possibly check out those links and get some idea as to if his symptoms are related. We are not doctors...but with many years of combined symptoms and shared information, one could possibly get some idea if he indeed suffers from clusters.

You also need to understand that migraines and clusters are 2 very different things. Migraines, while painful, are very unlike the feeling of a CH. CH has been referred to as "suicide" headaches for years.

Education is the key to understanding CH. Hence, the purpose of this web site.

Arm yourself with information found here. Print out what you think is pertinent for a correct diagnosis for William. Go with him (when you can) to the doc, and ask him/her to consider whatever meds William may need to get some relief.

As far as doing the things you used to do, socially, more than likely, is not gonna happen till a correct diagnosis and proper meds are given.

It takes alot of love...........and patience and understanding to cope with CH.

I sincerely hope that William can get the proper help he needs. Understand that Williams story ......and yours has been told hundred's of times on this board. Don't feel like you are all alone in this. This web site and this board has been a virtual lifesaver for many of us. It gives all of us a place to come and say what we need to. The support here is phenomenal.

Pray for patience.....and understanding and most of all, a proper diagnosis for the man you love. If you give up, then he will.

You sound as though you are sincere in your feelings and frustrations. The best support a sufferer can receive is support given out of love.

We are always here.....and always willing to help if we can.

Please stay in touch.....let us know how things are going for both of you.

My prayers go out to you, Renee......and pf vibes for William. Let us know if we can help.

Jean

Title: Re: Tell us something about your SUFFERER
Post by cowboy72567 on Mar 17^th, 2004, 2:42am

my husband is too young to die. i can't understand the pain or the things he says during an attack. we live in a very rural area in arkansas and the doctors aren't even trying anymore. so am i suppose to give up as well? he about has. the attacks no longer come in spells of every 2-3 months it's every week for three days straight. usually on wednesday at around 8 p.m. and continous until friday until around 9 a.m. where is there any relief?? why us??? whyy myy kids???

i don't mean to whine everyone here knows how i feel. but how do i deal with it all?

Title: Re: Tell us something about your SUFFERER
Post by Margi on Mar 17^th, 2004, 9:47am

Hi Cowboy - no you're NOT supposed to give up and neither is he. Clusters are not fatal, but they can steal your quality of life - that's for sure!! If you've had a doctor give up on you, then you need to give up on that doctor. Find another one. Or, if that's impossible, read everything you can about the "natural" treatments and keep fighting!

HAS your hubby been diagnosed to have clusters? You mention continuous pain - that's not typical of clusters, there are pain free breaks between the attacks. So, first, you need to know what you're dealing with. Take the cluster quiz on the left here. If it does come out positive, is there any way you can get him to try oxygen as an abortive? Know any welders that would let you try their oxygen tank? Could you get him to a firehouse to try their oxygen?

Hang in there, Cowboy - there is always just one more thing to try - never give up!!

Hugs
Margi

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Mar 17^th, 2004, 11:27am

Hi Cowboy,
Margi has given you some great advice....she always does.
Study the information here and on the OUCH site....buttons on the left. Knowledge is power when fighting this malady.

Clusters are terrible but they won't kill hubby and they can be managed. Hang in there and keep us posted...we'll do anything we can to help you all.

Hugs,
Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by Jamey_Coyle on Apr 4^th, 2004, 1:34pm

Hi,
I'm new here! I live in Central Arkansas with my parents and siblings. My mom has suffered from what we now think are cluster headaches since October. We looked at information for cluster headaches in our health book, and mom has all the symptoms. I looked today, on the internet for more information and found this site.

When mom has what we call her "spells," she has said that the left side of her face starts to hurt, and then she kind of sinks gracefully to the floor. I remember a few days ago, I walked into the office of our house to answer the phone, and she was slumped over the computer keyboard. Honestly, this scares me every time it happens. She gets extremely hot and sweaty, and she goes completely pale. She also has problems communicating. Her speech is very slurred. I know when her color comes back and her speech is improving that she is getting better.

Sometimes, mom can bounce right back from one of these and be fine, but others have left her bedridden for a few hours. She had one early this morning, and she hasn't been able to get out of bed since. She's not very old, and this is very scary for me. I take care of her most of the time because my Dad is on the road for work alot, and I'm the oldest, so mom kind of likes to have me around. She wants me to be constantly around her every day in case she has an attack. She had three or four in one day, a few weeks ago. She has a fear of having an attack while driving, and a week or so ago, she started to have one in the car. Unfortunately, we were on a crowded interstate, and there was no place to pull over.

We have talked to a doctor friend of ours in Ilinois, but he is at a loss as to what this could be. I would like to talk to other people here who care for people and have to watch them go through this. I almost wish it could be me going through it, but then I know Mom would wish it was her.

Thanks for letting me tell a little bit of our story.
Sincerely,
Jamey

Title: Re: Tell us something about your SUFFERER
Post by Margi on Apr 4^th, 2004, 3:21pm

Hi Jamey - so sorry your Mom is having a rough time. It's so scary for children (of any age) to see their parents in pain. You sound like a strong person to be able to take care of your mom and your siblings. Good for you.

What do you mean she 'slumps to the floor'? Is she fainting? Does she lose consciousness for awhile? Taking to her bed really isn't characteristic of clusters, neither is fainting. Can your mom take the quiz on the left, here? It sure sounds to me like you need to get the doctor to give her some tests and a firm diagnosis. Please let us know, ok? Pain of any kind is a signal that something is wrong somewhere. Please suggest that your mom push her doc for some answers, ok?

Hugs to you, Jamey.

Title: Re: Tell us something about your SUFFERER
Post by Jamey_Coyle on Apr 4^th, 2004, 5:57pm

Hi,
My mom took the cluster quiz. It's a pretty safe bet that she does have cluster headaches. She also wanted to take the 30 question quiz. That told her that she had a sinus headache. She looked at the cluster traits, and she has all of those. She also looked at the Kip scale, and she saw herself in some of those ranges also. We even recounted some of the headaches she had had at the different levels.

There is a doctor who goes to our church. I think we're going to ask him about this and see if he can recommend a neurologist for mom.

We're not hypochondriacs. We're pretty convinced that this is the problem. We don't know why she falls, but maybe that is something else. She doesn't fall all the time, though. When she was driving, she didn't slump over. She just kept driving and hoping it would pass. She did turn the air conditioner on though. She about froze us all out. ;)

We do know that she gets the numbness, and gets extremely hot and then cold and then hot again. I guess with this kind of thing, everyone is different. She has the slurred speech, and on the Kip scale, level ten was depression and suicidal. She definately has had that.

But, like I said, we are going to get another doctor's opinion. We hate to go with things undiagnosed. I have had a health problem of my own that has gone undiagnosed and everytime it flares up, we don't know why it is happening. Doctors don't know what the probelm is, and that's the same thing that has happened with the doctor in Illinois. He doesn't know why this is happening. He got mom on some blood pressure medicine, but that really hasn't helped too much.

Sincerely,
Jamey

Title: Re: Tell us something about your SUFFERER
Post by Jamey_Coyle on Apr 4^th, 2004, 6:29pm

Hi,
Mom and I were talking a few minutes ago, and she said I have been mistaken. When she feels an attack coming on, she lays down, or sits down because she doesn't want to fall down. The intensity of the headache is too much. After she has sat down or laid down for a little while, she starts to feel better and can resume life. She said she never loses consciousness, though. She just hurts so bad on the left side of her face that she has to sit down or lay down.
Sincerely,
Jamey

Title: Re: Tell us something about your SUFFERER
Post by Donna H. on Apr 5^th, 2004, 8:04am

Hi Jamey:

Sorry that you and your mom are going thru this.

Like others before me have posted, it's time to look for a new doc....pronto. If he hasn't run tests (CAT scan, X-rays, maybe an MRI, to mention a few) then he isn't doing what he should be doing.

Does she have blurred vision along with that slurred speach, or any numbness of the body on the opposite side of the headache?

Almost all cluster sufferers go through these tests routinly just to rule out something else first. It's the smart thing to do as so many maladies mimic each other and can go mis-diagnosed.

Good luck with finding a new doc. Your mom doesn't have to settle for less then she needs. She should read what is here, get informed, and then take the initiative to insist on proper care.

You sound like a wonderful person to be so attentive to, and caring for your mother.

Bless you both,
Donna H

Title: Re: Tell us something about your SUFFERER
Post by breathe on Apr 5^th, 2004, 1:23pm

I'm new to this so be gentle with me! My husband Jim has been told that he may have cluster headaches. What I've read on this message board and all of the other research that I've done convinces me that he does have them. Jim has finally stopped drinking!!! After me telling him that it is not good for him and his headaches! Now I hope to get him on the right meds. He takes vicodin, but they truly do not take away they pain. Butarbitol (sp?) helps but also does not take away they pain. I now understand about "shadow" headaches. But does Chinese food hurt. Or food with a lot of sodium? I could go on with questions so I will stop here. Any suggestions will help. Thanks Jackie a care taker with heart

Title: Re: Tell us something about your SUFFERER
Post by HypnoticFreddy on Apr 5^th, 2004, 1:57pm

Please....read the links to the left. Very informative. Take the quiz. Read the Cluster Traits. Read the info.

You will be surprised how much information you can learn from these links. Then go to the OUCH Website. Print out the documents. Take this to your doctor, if you can.

Butalbital is a barbituate and is not really useful for cluster headaches. Vicodin is an opiate and is also not usually useful for cluster headaches. See the medical info. It will take you a few hours and you will become educated.

Just some advice

-Scott

Title: Re: Tell us something about your SUFFERER
Post by Margi on Apr 5^th, 2004, 2:43pm

Hi Jackie,
Scott's given you some really good advice about narcs for treating clusters. They don't work! They just mask the pain and addict the user. Get your hubby to a cluster knowledgeable neuro and fast. Get him to try oxygen as an abortive and see if he's a good candidate for imitrex (it's a med that can't be used by folks with heart probs), and maybe verapamil.

And, yes, the MSG in Chinese food can act as a "trigger" for some folks. My husband can't tolerate it (MSG) when he's in cycle.

Title: Re: Tell us something about your SUFFERER
Post by Jumjum15 on Apr 8^th, 2004, 8:18pm

My husband will probably never believe that beer is related to his headaches, and honestly, since he gets them almost every day, it doesn't seem to matter if he drank or not. I would love an excuse for him to stop drinking, though, but that will never happen.
I also worry that drinking almost every day on top of taking tylenol every day will destroy his liver, but I'm guessing he won't change his habits (not to mention the smoking and the awful eating habits) until something puts him in the hospital.
I've given up trying to convince him to take better care of himself, even if it just means being an overall healthier person willhelp him deal with the ha better. He thinks because he's a normal weight, that means he's healthy.
I'm sorry, I'm just really bummed out about this. The life insurance people put him in a really high-risk category, and we're still waiting for our copy of the test results. I'm sure that instead of changing his habits, he'll just try to have a fat-free and berr/tylenol free week (before they draw blood) and then go right back to trashing his body....
Sorry to be such a downer.

Oh, and we found out today that it's a boy!

-Ella

Title: Re: Tell us something about your SUFFERER
Post by sandramac on Apr 12^th, 2004, 7:03pm

hi guys!!!!

I'm Sandra from Scotland, usually post over the pond on the uk site, but thought i would pop in and say hello!!

My story is similar to all you guys in here, hubby had a horendous headache a few months ago, the docs here thought it was a severe sinus infection, gave him some anti biotics and went away, 2 days later he still wasn't any better, doc came back out and decided to send him to hospital, doc there said it could be clusters

Andy and i are still pretty new to all this, and the uk folks have been great, and i hope maybe to get some support from you guys too( goodness knows we need it too!!)

from the way his attacks are occuring i reckon he is chronic, though still waiting for a neuro appt to come through

that's my story so far

take care you guys

sandra

Title: Re: Tell us something about your SUFFERER
Post by minnie on Apr 20^th, 2004, 3:57pm

HI guys sorry it's taken this long to post but here goes.I want to tell you about my best friend,love of my life father of my children and of course wonderful husband well, we'll just call him Billy J. :).I'm feeling sentimental today because of some anniversaries 9 years ago tommorrow Billy and I had our first date [smiley=heart.gif].8 years ago today we said our I dos in front of family and friends [smiley=inlove.gif] [smiley=hammer.gif]. (Billy's been whining abot it every since ;;D) Back then it was just the three of us Billy,Felicia( now 12 his daughter from first marriage) and me.Since then we've added April (7) and Beth (5).MY how time flies.
Now a brief history of his battle with the beast.his first cluster that he can trace back happened about 1987.
his nose was broke but thats not what really hurt him his REAL PAIN was in the exact area of his clustersnow.1993 was his next cycle.treated as an acute sinus infection [smiley=mad.gif]which he suppsedly had every 1-2 years .He went into cycle ? January 13th of 2003 and now is chronic :'(. HE found a great neuro.who works With him on treatments for both Clusters and miagraines. He can't take Triptans because of other medical problems so he aborts with O2 .His preventative is Verapamil.
Billy had the great oppurtnity to meet many of you at last years convention and this year we're hoping we can both go [smiley=sayyes.gif] .This sight & the family we have made here have been a Godsend.I don't post much but I always check in here and the ouch site.I laugh,cry, pray and send vibes as needed.Thank You DJ
for putting this all together so we have the info and support needed to fight the beast.I'm gonna sign off now just wanted to keep this thread going (thanks for starting it Ree). Billy's at work so going to spend time with the kids but I'm sending out hugs and vibes to all supporters and sufferers may we all see the demise of the beast so you all can be pain free................
Minnie
(sorry this so long )

Title: Re: Tell us something about your SUFFERER
Post by bubbarube on Apr 29^th, 2004, 12:52am

Hello everyone! I found this site a couple of weeks ago Im still learning all the sites to look at and read. There is so much valuable information here, just alot of reading!! For someone who needs glasses gets tricking reading after awhile but Its worth it! My husband is the one with clusters, diagnosed 20 years ago. He has been to many Dr's. and on lots of meds. O2 never worked for him. We did the E.R. one time about 6 years ago on X-mas-evening. it was his 8th CH of the day and he was so exhausted he could barely hold his head up to bang it on the wall. And like I read from another supporter the ER has no idea what to do. The nurse had the nerve to tell my husband to slow his breathing down she said he was just making the pain worse and was going to hyper ventilate. Well needless to say after going through these damn things for 14 years, at that point he told her a few choice 4 letter words. Then the DR. ask me if he was a drug addict or drunk as he looked so bad. Thats when all hell broke loose! I ask if he even knew what the a CH was! His response was NO didnt know what they were! And he was quickly told {imagine me pulling your balls out through your ass} thats close to the pain Ron had felt for the 8th time that day and each CH that day was at least 1 to 2 hours long!! So Dr. gave him a shot told me it would kick his butt and he would sleep the rest of the night. Left hosp. got home slept 1 1/2 hrs. and bamn going for number 9. I have learned over the years better to keep quiet not ask ?'s let him talk or yell or beg or cuss and you just say what he needs to hear. We do alot of wet washcloths and I put them in the freezer and just let them get to the barely frozen stage and he puts it on his temple, when it cools off put it back in freezer and get a new one this works a little. I think it keeps his mind busy holding it in place, more than it taking the pain away but worth a try. Sorry so long didnt mean to rattle on. If I can be of help to anyone Im here. And I just want to give a big {THANKS} to all that post it really does help! Even us veteran supporters!!

Title: Re: Tell us something about your SUFFERER
Post by kim on May 20^th, 2004, 8:06pm

my hubby randy also has clusters along with migraines at the same time, his dr has tryed everthing from varpimill to o2 no help , randy is starting a new cycle now the last one lasted for 3months with no breaks thanks to the migraines, when we first seen his dr we were told that very few people have both ch and migraines at the same time .randy cant stand light,sound,moving or being touched when they hit, no smell of anykind, i've heard about the ch dance randy has said in the past that thats how he has felt but with the migraines he can't do the rocking and all with out making the pain and upset tummy worse. me iam at wits ends its hard to explain to a 6 year old that they have to stay quite for months on end its hard for a adult to also.sometimes i feel helpless becouse i cant help

Title: Re: Tell us something about your SUFFERER
Post by Woobie on May 21^st, 2004, 2:34am

Kim - please check your private messages.
(look at the top right hand corner.....)

Hugz to you, Kim..... We know how you feel......... stick around and read, read, and then read some more!!!

What other medications has your husband tried?

Maybe you should post in the Getting to Know You section - you'll get more responses there... but I'm glad you made it here...

Nice to meet you,
TIna

Title: Re: Tell us something about your SUFFERER
Post by kim on May 23^rd, 2004, 5:33pm

Tina,
thanks for the reply.i will post all meds when i list them all (i have a dresser drower full ) sorryfor the misspelling.

Title: Re: Tell us something about your SUFFERER
Post by Ree on May 23^rd, 2004, 7:59pm

Wow I cant believe all the posts since I first posted this thread..8 months ago... amazing... I'm sorry I havent been in here much these days to support... been searching for a little support for me. Sorry that sounds like a whine... I was accused of whining recently and boy will I ever be looking out for that side of me... I hate to be accused of that.........
All of the wonderful supporters here, there are too many to name. I am so proud of each and everyone of you and blessed to share your company.
I have noticed some new supporters here and I wish I could address all of you. ( or remember what I have read) All I can say is keep up the good work. Some of the sufferers written about here are my good friends and I feel relief in knowing that they have such caring loving support in their lives. To the other new supporters looking for love and support and not understandint this condition, please start a new thread so that you won't be lost in this long one. We want to know you and help you with strategies as well as better medicines to try. Each of our sufferers are different and tell a different tale. Those that I have met personally have different remissions if at all... some are chronic, some eposodic. We are all looking for the same thing for ourselves and our families. Help, support.......A CURE. God bless us all... Its not easy to ask for help for yourself. I will never accuse anyone of whining. Love to you all Ree

Title: Re: Tell us something about your SUFFERER
Post by NAB on May 26^th, 2004, 2:52pm

My husband has been diagnosed with clusters and we just can not seem to find the medicine that will get him out of the cycle. We have tried Prednisone and now are on Lithium. It is soo depressing! I try not to let him know how I feel since I know that he himself feels soo bad. Doe sanyone have any suggestions for doctors that specialize in Clusters that are from Illinois?? Also any medicine that has worked?? And finally how are you supporters surviving?? I feel like I have reached my wits end. I am stubborn and refuse to go to the doctor for any depression medicine to help me deal with it.

Thanks for listening!

Title: Re: Tell us something about your SUFFERER
Post by firebrix on May 27^th, 2004, 1:53am

Welcome NAB!

Sorry you had to find CH.com, but glad you did. There's a mine of information here. Look around the site, read, search and ask as many questions here as you wish.

I cannot help you with neuros in Illinois, but I am sure someone can - just look in again later and someone from the USA will have replied.

You don't mention whether or not your husband has tried oxygen. This is a safe and inexpensive treatment option used with great success by many on this site and there is a link to the best info you could get on the left hand side of your screen. Check it out and also read Roxy's post about O2 on the General Posts page. It is important to use a non-rebreather mask.

It IS depressing. No doubt about that! We all get bogged down in it at times, but read some of the posts from other supporters, remember that all we can do is what our partners WANT us to do, and do the best you can. Also take time out for yourself occasionally. Fill the bath up like Margi suggests, light the candle, pour in the bath oil, slip in, do absolutely NOTHING but lie there and indulge in nothingness a while. Supporters need to be strong and must gather their energy from time to time.

My husband and I worked out a plan of attack for when he gets hit. He told me what he needed, and I try to get it together for him. If he wants to be left alone, I leave him alone; if he wants company, I'm there in a heartbeat. I remind myself that no matter how bad my day seems, his is a helluva lot worse!

Let me know if I can help you in any way. So many people here helped me when CH first entered our lives and I have learned from them. These people are half a world away yet help is just an IM away. Amazing. Reassuring, and Oh so helpful.

happier days to you NAB
firebrix

Title: Re: Tell us something about your SUFFERER
Post by NAB on May 27^th, 2004, 9:08am

Hi Firebrix:

Thanks for your reply. He is taking oxygen however it only seems to work for everyother headache.
I try to take time for myself however whenver I come home and he is having a bad day I feel like I need to be there. I know that there is nothing that I can do but it just makes me feel better however it makes me feel bad also!!

Title: Re: Tell us something about your SUFFERER
Post by seannap on Jul 19^th, 2004, 5:48am

Hope I am not intruding, but I just want to say to all you supporters that you are true angels.

Many of us sufferers would not be of this earth today were it not for you to keep us going: lending a gentle hand; a knowing look; a smile of encouragement... and a kick in the butt when we get havin a pitty party.

Sometimes, when I get an attack... I am not sure which hurts more - my head or the look of total helplessness in my loved ones face. It is not only the "sufferer" that is the sufferer. We all see it, and it is not taken for granted.

Thank you.

Title: Re: Tell us something about your SUFFERER
Post by Ree on Jul 19^th, 2004, 11:56am

Thanks Sean-nap... Compliment taken and greatly appreciated... We have met wonderful people here and are quite thankful ourselves to be in such good company... Love to you and Pain free cozy nights to you too... Ree

Title: Re: Tell us something about your SUFFERER
Post by roosterred on Jul 30^th, 2004, 10:01am

Hi, my boyfriend Rick has this thing they call cluster headaches, I call it madness!!! We have been together 3 years and the first time I seen him in the throes of one of these I really thought he was losing his mind. He started to cry and bang his head and rock back and forth. My first thoughts, " he is nuts " was all I could think of. Well they went away for about a year when a er doc told him to take Claritan-D. Well they are back and in full force I might add. Nothing seems to help him. I came across this site, thank you and I went out and got him Melatonin 3mg. This is his 2nd day of using this and he finally got about 4 hours straight sleep. He still gets the demon during the day 2, 3 times a day, but at least for now he can sleep some peacefully for the first time in a long time. He has suffered for about 17 years now. My question is why can*t these doctors help him?
Thanks for the advice and understanding. No one deserves this torture and god willing a cure can be found for all who suffers from the demon.

Carla :)

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Jul 30^th, 2004, 6:43pm

Hi Carla......welcome to the boards.

There is help out there. I would suggest that you read and then read more. Check out all the buttons on the left. There is a lot of very good information on the OUCH site (another button on the left). Educating yourself will help you help your boyfriend and is your best line of defense when fighting the beast.

It's a sad thing but many doctors have no idea about cluster headaches and some that know haven't a clue on how to treat them.....so you've got to learn and then find a good doctor to work with your boyfriend. You can be a big help in this area.

I've been married to a chronic for years....you can have a life and things are manageable. It does take some work though.

Good Luck to you and please keep us posted on how you all are doing.

Jackie

Title: Re: Tell us something about your SUFFERER
Post by synergy2120 on Aug 6^th, 2004, 9:57am

:P Hello everbody,

Im a newbie to the site and i come on here for me and my partner marc.

My partner Marc used to suffer from episodic CH but now, 3 years later, he has been diagnosed with Chronic CH. He gets between 3-6 attacks a day.
He is on verapamil which doesnt seem to do anything but whenever he tries to lower the dose the beast attacks stronger. He has just been started on Dothepin to try and help with the depression side and we have O2 as it can help once in a blue moon!

Me and marc have been together for 2 years and have a little girl called Emma who is 6 months old and loves her daddy very much.

Marc struggles everyday to keep going and being honest i struggle a lot to keep him going. i love marc so much and as you all understand it is heartbreaking to see them in so much pain and to feel so helpless.

We are going to see Dr Goadsby soon in London to see if he can start marc on new meds.

I would just like to add a hugh thankyou for setting up this website as i think i would go insane without it [smiley=laugh.gif]

Title: Re: Tell us something about your SUFFERER
Post by Jackie on Aug 7^th, 2004, 3:45pm

Hi synergy......welcome!

Please keep us posted. Seeing Dr. Goadsby is great. Hope you all get some relief soon.

Jacks 8)

Title: Re: Tell us something about your SUFFERER
Post by Teri_K on Aug 9^th, 2004, 8:40pm

i know it has taken me a while to get on here and say hi..........so hi....i met some of you at convention. and it was great to meet you.
My name is teri..........I am Steve's/KOPs supporter. When we met he told me about his headaches, and i thought ok so he gets bad headaches, he tried to explain and i said ok, he asked me to come to this site and read about his headaches. i did and that opened my eyes. i guess i can't say that i totally understand what he goes through, but i know i will be there for him when he needs it. i just hope that i can be as good a supporter as you all seem to be to your sufferers.

Teri

Title: Re: Tell us something about your SUFFERER
Post by donjonrn61 on Aug 13^th, 2004, 11:35am

My name is Donna and my husband, Phil, has been suffering with episodic clusters since his early twenties...twenty years now. He is in the midst of his longest round right now, having lasted about 6 weeks at this time. They have been hitting him a few hours after he goes to sleep, but yesterday he had 5 in 10 hours.

He was started on Verapamil about two weeks ago and thought it was making the attacks less vicious until yesterday. He uses O2 during the attacks and was started on three days of Axert once a day yesterday.

He said when he started in with them twenty years ago he had a CT to make sure this wasn't all caused by a tumor or something. They put him on beta blockers, narcotics, and Cafergot back then, but nothing worked. He says the attacks used to be so painful but short in duration that there was no point in taking the narcotics. Now, if he doesn't get on the oxygen right away, the attacks can last for up to two hours.

He works nights at the hospital and is also a student. We have 7 children between us, the youngest being a 16 year old migraine sufferer, and four grandchildren. We've been married 8 years and he's a wonderful husband.

We've spent most of our marriage trying to get help for my hemiplegic migraines, which proved to be quite an uphill battle. Finally I'm off disability and back to work, and now he's suffering.

I post on a migraine site and was glad to find this site specific to clusters. I've already learned a few things that might ease his struggle, like icing the O2 line. We'll give it a try.

Thanks for this site and starting this thread. I'll check in here often. - Donna

Title: Re: Tell us something about your SUFFERER
Post by Woobie on Jan 26^th, 2005, 2:41am

bump
i like this thread.... ;;D

Title: Re: Tell us something about your SUFFERER
Post by WifeofCHSuffer on Jan 27^th, 2005, 1:06pm

I am the wife of a CH suffer. My husband Tim got a bad cycle last March that freaked myself and our then 3 year old son out. I took him to a clinc thinking it was a bad sinus infection due to the symptoms. My husband was basically patted on the head, given antibiotics and sent home. On the way home he was pounding his fee in the floor holding his head and crying uncontrollably. Thank God my parents live 6 blocks from us and we were able to drop him off over there. I would not want him to see daddy in pain. The next day things were not better, Tim went to his regular doc and told them what happened, the doc knew about CH and told him that is what he had and in one week he was in to see the Neuro. He was on predisone, topomax, veraphmil, relpax, and a few others plus O2. We are not sure what did work but the pred, topomax and verap stopped the cycle finally. O2 did not help because he was prescribed the nasal. Just found out the other day that was not the right way for it to be administered.

I have become Tim’s advocate, he forgets to ask questions and ask the what ifs about everything so I go with him to the appointments now, I think it is because of the Topomax (dope a max) he is on that he can’t think clearly. He is suppose to go in on 2/16 for a follow up and I will be attending. After being on the site for a few days I have a million questions for the Neuro. I like the guy he seems to be very good and has taken the time to help us understand what is going on and what to expect. Tim is a chronic CH and migraine suffer. It sucks!

Tim hates the fact that these headaches are in our life and feels awful that I have to take care of him and our son and be pregnant at the same time. Personally I can’t care, we have a challenge and we will work through it together. He feels bad that we can not have sex because he has found that while in a cycle physical activity makes his headaches worse. Again could not care less I would rather him be pain free than have sex. We have been together for 17 years and married for 10.

I notice when the pain is building he is very short with everyone and everything. I try and get him to take his abortive Relpax but he only wants that when it is really bad, the rebound headaches he says are worse. So he tries and stick it out for a while. I think he is crazy but whatever works.

I worry that these headaches are doing a great deal of damage to his body, his heart, brain and circulatory system. I am not sure if I am needlessly worrying about something but it can not be good for the body at all. So it is on my list of questions to ask the Neuro in a few weeks.

That is our story and we are hoping like heck that these headaches will not affect our son or our unborn baby either. He does not want anyone else to suffer through these.

Cathy

Title: Re: Tell us something about your SUFFERER
Post by Margi on Jan 27^th, 2005, 1:12pm

he's not chronic, Cathy, not if the pain went away after the meds last March.

It sounds like he's in his second cycle.

Title: Re: Tell us something about your SUFFERER
Post by WifeofCHSuffer on Jan 27^th, 2005, 3:45pm

He has not been strictly pain free for any length of time, he went from CH to migraines and has not stopped. He only has a few days sometimes weeks where he is painfree.

Title: Re: Tell us something about your SUFFERER
Post by Frank_W on Mar 3^rd, 2005, 10:54am

Hello, everyone. Your stories have made me cry... My wife will not come here and post, so I will tell you about her, instead. I hope that this is okay....

We've been married for thirteen years, and I've had episodic CH for eight. I do my best to hide them from her, but she knows, and when I'm getting hit, I see the pain in her eyes... She wants so badly to help, to do something, anything, to take away this pain.

In the middle of the night, when I'm getting hit, I'll slip out of bed as quietly as I can, but she always awakens and asks, "You're getting hit, aren't you?" And as I'm making my way across the room, so I can go out to the living room, I say, "Yeah, baby. It's okay... Go back to sleep."

Most of the time, after the hit is finished, I crawl back into bed to find that she's been lying awake and waiting, and her voice is husky from crying. In an ironic twist, I find that I want to take away HER pain!

I find myself trying to hide it from her when I'm being hit...

Probably the worst one was on our 12th anniversary. We had booked a reservation at a really nice Italian restaurant and had just placed our order when I felt a CH coming on. At that point, I still had no idea what these things were, and stumbled out of the restaurant, and began going from one business in the plaza, to another, to see if someone could give me an aspirin. (Not that it helped at all, but the half hour I spent walking around gave the headache time to finally fade away) Anniversary ruined... CH just breaks my heart, breaks her heart... Even as much as we try to keep it marginalized and avoid letting it take over our lives.

I've spent this morning reading this thread.... I've been weepy and misty-eyed with reading your stories... Your courage, your love, your sheer guts and dedication... I am overcome. I am simply overcome, and I am crying for all of you... Thank you. Thank you. Thank you...

Title: Re: Tell us something about your SUFFERER
Post by thesufferer on Mar 14^th, 2005, 9:48pm

Of all the messages I read there is one constant word! Pain!!! We all tried different remedies and here is what I do. It is not always effective but at times it helps me control myself without losing control.

1. Cold water on my head periodocally

2. A towel on top of my head and rub my wet hair back and forth.

3. A nice dark place!

4. A vaporizer to breath in while doing the above!

5. To be by myself!

My name is Curtis and I have been suffering from cluster headaches since 1982 and was diagnosed with the problem in 1996. Nothin is easy and hopefully one day a cure will be found. My best treatment is Imitrex Injections. I know the pain but keep rocking on!!!

Title: Re: Tell us something about your SUFFERER
Post by Zephrah on Apr 12^th, 2005, 1:25pm

:) Hello Everyone! i'm a new supporter and I thought i'd post to this thread. I've lived with Celtspirit for a couple of months now and he has been going thru a cycle for about the past month. This is a new experience for me but i'm up to the challenge. (What doesn't kill us makes us stronger, right?!?) At first when he started the new cycle I didn't know he was having them because he would be very quiet at night. He's now on his 3rd round of prednisone, which makes him short tempered at full dosage but he gets relief until the dosage drops again. I'm fortunate that i'm not working right now and can help him deal with this, along with the other variables that we all have in our lives. I've been doing some online research trying to concentrate on the arteries and nerves that are affected, since just about every sufferer seems to get some relief from applying pressure to arteries or nerves. I know that the research is in its infancy, most of it seems to involve relieving the pain instead of preventing it. Please let me know if you have any input. Thanks! [smiley=twocents.gif]

Title: Re: Tell us something about your SUFFERER
Post by Margi on Apr 12^th, 2005, 1:39pm

Hi Zephera,
Well, research really isn't in its infancy anymore, thanks to doctors like Goadsby, etc. and these websites. There is tons of information out there now about clusters.

As to applying artery/vein pressure, please be very careful with that method of aborting attacks. Unless you're professionally trained in that area, it can be very dangerous and can cause a sufferer to lose consciousness.

Oxygen is a wonderful abortive, and there are many chemical meds out there that do the same thing. Natural treatments include shrooms, kudzu, water, ice - all things to try if your sufferer is otherwise med-free. Not great to try if he is on meds though.

Prednisone, while it may be effective to break a cycle, is horrible stuff. My husband did it once and never again. He is currently using the lithium pulsing method and it worked well for the first two months of his cycle. We are nearing the end of month four here and he's having some pretty serious breakthroughs now. Thank God for oxygen and imitrex!

Hang in there - read everything you can and educate yourself. Check out the OUCH website and visit the library there - amazing compilation of information right there at your fingertips!!

Title: Re: Tell us something about your SUFFERER
Post by E-Double on Apr 12^th, 2005, 1:45pm

Welcome and wishing you BOTH relief!!!

I sure as hell don't know what WE would do without you supporters....For that I personally thank you and all the other "angels" out there!!!

Here is a great resource to know like the back of your hand

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!! Print it out and give it to doctor to memorize!!!

Demand Oxygen for your house and for travel (can get different size tanks) read and print this out!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

If he does have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 5-6 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many side-effects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes to both of you, good luck, stay as positive as you can and thanks once again!!!!

Eric

Title: Re: Tell us something about your SUFFERER
Post by Zephrah on Apr 12^th, 2005, 2:18pm

:) Hello again! thank you for the replies. He uses Imitrex (injections) whenever they become intolerable because he can't stand the rebounds from it, he already uses the imitrex tip from the home page, I asked him about that yesterday. He has prescriptions for a bunch of other stuff (covera)but his first course of treatment is an ice pack on his head, 200mg ibuprofen x5 and an Actifed. We just got the O2 tank in today and I can't wait to see if it helps him out. They must have reached a peak yesterday, they had shifted to an irregular schedule and were occuring during the day so that got him home from work at 9:30 am yesterday. Today seems much better for him. I'd estimate hes having between 5-10 headaches per day, varying in severity, but the shadows linger. I know he got some sleep last nightand he seems to be doing well today, so again, i'm hoping that yesterday was a peak to the cycle. He had been prescribed lithium a long time ago and hates the stuff. I had asked him about melatonin long ago when he first told me about his headaches because they seem on coincide with seasonal and daily sunlight changes. He had been using shrooms as a preventative and we both just recently heard about Kudzu. He hadn't been keeping up on any research for a while, I know it can get depressing and seem hopeless, so I try to keep informed myself, which in turn motivates him. Thank you for the links and all the help you give to everyone here! We both hope to meet some of you at the convention this year! [smiley=hug.gif]

Title: Re: Tell us something about your SUFFERER
Post by Dianne too on Apr 28^th, 2005, 6:32pm

Hi! And thank you to all for being here on this site.
I am a newcomer and have just experienced my first day of caring for Michael (my partner/lover/whatever you want to call him) while he went through seven Kip 10s in a row.
We have been together for more than a year, but he has been in remission, so I only knew to hear him talk about the CHs. But he's been in a cycle for about a month now, and I went online right away and found this site.
The information I have learned here has helped, especially since I am the kind of person who always wants to DO something. I learned here that there is nothing I can do, except be there and make sure the meds are close by. I've also learned to make him drink as much water as possible . . . we'll see.
Anyway, yesterday was terrifying . . . I know I don't have to describe how it feels to see the person you love more than anything screaming in pain and knowing you can't do anything about it.
Today (knock wood) has been tolerable so far . . .
Thanks again for all the good information and for being there are 2 a.m. on the laptop!
Dianne

Title: Re: Tell us something about your SUFFERER
Post by Margi on Apr 28^th, 2005, 8:18pm

seven Kip 10's?
in a row?

are you sure this is cluster you're dealing with and not CPH? Same/similar pain, much shorter duration.

How long is each attack lasting?

What meds or abortive methods is he using?

Title: Re: Tell us something about your SUFFERER
Post by Dianne too on Apr 29^th, 2005, 8:43am

Margi:
Thanks for your concern! I immediately went to look up CPH but no, they are clusters.
The first one hit at 5:30 a.m. The second came at 2:30 p.m. and ramped to a 10 almost immediately. The third one came at 5:30 p.m. and then they came every two hours.
Michael finally passed out from exhaustion and woke yesterday with perhaps a 3 or 4, which dulled over the course of the day.
He uses Imitrex nasal spray and shots, which work, but seem to take forever . . . the spray usually takes 18-24 minutes to work and the shots take 7-11 minutes to work. By the end of the brutal cycle on Wednesday, I think he had taken more than 60 mgs of Imitrex in less than 24 hours. God only knows what that did to the severity of the headaches.
Thanks for giving me a place to talk about this!
Dianne

Title: Re: Tell us something about your SUFFERER
Post by lionsound on Apr 29^th, 2005, 9:41am

Hi Dianne,

Quote:

I think he had taken more than 60 mgs of Imitrex in less than 24 hours. God only knows what that did to the severity of the headaches.

God only knows what that could to to HIM, let alone the HA's. Dianne....I could be totally wrong here, but that sounds like way too much imitrex to me. Is Michael currently seeing a neurologist? You might want to check with his doc about that. It very well could also be causing rebounds at this point and be physically dangerous to him if he has other physical conditions.

PLEASE get this checked out. And remember not to mix different types of triptans(imitrex,zomig, maxalt. frova, etc) within 24 hours of each other

You are a fabulous supporter and Michael is very fortunate to have you!

Title: Re: Tell us something about your SUFFERER
Post by Margi on Apr 29^th, 2005, 9:53am

Lionsound's exactly right here, Dianne - that's VERY dangerous to be taking that much Imitrex! NO MORE than two sprays OR shots a day! Imitrex is a vasoconstrictor, meaning it slows down or shuts down blood flow. There is a story of a guy here who took 6 imitrex in a day (I'm not sure what format) and he ended up in ER because he had shut down the blood flow to his stomach.

Not only that, it honestly DOES cause more attacks. Not rebounds, just increases the frequency. My husband (also a Michael) has learned this the hard way. That could very well be why your Michael got so many hits in one day.

Please please PLEASE see about getting him some oxygen! Not only is it a much safer abortive, very effective, but it will also force him to stay calmer while he sits there and breathes it. Please read up on it and see if you can somehow get him some a.s.a.p.

Imitrex is SO hard on the cardiovascular system, Dianne - please talk to him about the overuse of it?

So sorry to hear you're both battling the beast - hang in there, you're not alone with it.

Hugs,
Margi

Title: Re: Tell us something about your SUFFERER
Post by Linda_Howell on Apr 29^th, 2005, 10:29am

Dianne,

I've just got to add my warning here as well. If for no other reason than to push home to you how dangerous this is.

60 milligrams of Imitrex is unacceptable levels for even a Sumo wrestler. Please get him to listen (when he's not having an attack) and explain this to him.

Linda

Title: Re: Tell us something about your SUFFERER
Post by Dianne too on Apr 29^th, 2005, 2:41pm

Thank you all so much for your concern! I know it's too much and (knock wood) he hasn't had a headache now for almost 36 hours. Instead, he's running 101 fever and is just miserable. Does it never end?
As long as I am writing . . . we're moving in less than three weeks, we're about to spend a rainy weekend in a one-bedroom apartment stuffed with boxes, two toddlers (boys) and three wet, extra-large, shedding dogs. Not to mention a very sick Michael.
We're going to try the suggestion of opening the Imitrex and injecting a half or a third of it each time manually and see how that works.
Thanks again all of you . . . did I mention Michael has no insurance and we paying for all the doctors and the drugs out-of-pocket?
Dianne

Title: Re: Tell us something about your SUFFERER
Post by lionsound on Apr 29^th, 2005, 3:21pm

Dianne, If you don't have insurance you might be able to get O2 from a welder's shop ...will cost you much less than all that trex he shouldn't be taking.

If he's that sick, could you take him to a clinic or something?...the HA/sick combo may need to be looked at if it's not normal for him. It may not be wise to pile trex on top of the sick.

I'm sorry you and Michael are having such a rought time of it.

be well,
lionsound

Title: Re: Tell us something about your SUFFERER
Post by estelle19 on May 27^th, 2005, 1:22am

Hi,

It's my first post here so let me just introduce myself... I'm Estelle, and my father suffers from c.h... He's 50 and he's been a sufferer since the age of 19... I think the longest it went away was 5 years, but when it came back, it hit him much harder...
In the past 4 years it's gotten a lot worst; Ive moved out over time, but I still go crazy everytime I'm there and he's walking around bashing his head on the walls, and everytime I'm left asking myself how he does it; how he's still here after all these years of chaos and pain.
Lately he's been taking a lot of Imitrex, which calms him down, but it just always seems to come back no matter what...
any way, I'm really glad I found this site.. like many of you have already mentioned, I'm glad to know I'm not alone in this situation!!!

good vibes to everyone ;) ,
Estelle

Title: Re: Tell us something about your SUFFERER
Post by nani on May 29^th, 2005, 11:09am

Hi Estelle, welcome and thank you for being a supporter for your dad. I'm a sufferer, too and we all appreciate good supporters. Have you mentioned this site to him? He may get some very helpful info here. As for you, be sure to take care of yourself, OK? hugs, nani

Title: Re: Tell us something about your SUFFERER
Post by Margi on May 31^st, 2005, 10:43am

Hi Estelle,
Being a supporter is so hard, isn't it? My husband is a sufferer and it's hard enough to deal with the helpless feeling, but seeing your parent - your protector - go through this must be awful. :(
You say your dad is taking a lot of imitrex....how much? Too much is very bad for him. Has he tried oxygen? It's a good abortive, too, and much easier on the body.
I see you're from Montreal - we have a Canadian cluster site now and quite a few sufferers in your area. We have a message board just like this one, so please feel free to check us out at http:/www.clusterheadaches.ca and please also invite your dad. It really helps them to know that they're not alone with this pain. We can probably also recommend a good doctor for him in Montreal.
Hang in there, Estelle - you're not alone with your pain either, ok?
Hugs
Margi

Title: Re: Tell us something about your SUFFERER
Post by ttlovesjrt on Jun 10^th, 2005, 10:54am

My husband John is episodic and has had CH since he was 16, he is now 31. He recalls getting them back then and people telling him it was his braces or that he needed glasses when he told them that it was 'eye pain.' He gets them about every 2 to 3 years, usually in August/Sept., but this year he has started early, end of May. He did not know what they were for a while until a fellow worker on a job noticed the way he looked when he has his HA, and being a sufferer himself, was able to ask John what his symptoms were and told him about CH. So while he has never been "officially diagnosed" by a dr., we have no doubt that this is what he suffers from as they are textbook to what everyone has described.

I feel very helpless, as many of you do. :-/ I am afraid to touch him when he is going through one as there is nothing I can do that doesn't seem annoying. If there was something, I would do it.

He is very reluctant to take drugs, which I don't blame them as it does not seem that these work for people. We've been reading a lot about the O2 therapy and are interested in that, but when we called our family dr. he said that O2 is very expensive and will not likely be covered by insurance as it is not a routine treatment for CH. Does this sound right? Where are all the people on the site getting it then? He gave me a number for a neurologist and I am getting ready to call. I just don't want to deal with pill pushers or anyone who would deam what he goes through as a "migrane" or an "allergy" or a "sinus problem." How far from the truth!

He seems to be having the worst of the cycle this week, so hopefully they're on their way out, but we would like to find something.

Thank you for all your inputs. They are very helpful. Just to know that other people understand and don't try to minimize the pain.

I would appreciate any feedback. Thanks again! ;)

tt

Title: Re: Tell us something about your SUFFERER
Post by nani on Jun 11^th, 2005, 10:01am

Welcome, TT and thanks for being a supporter to your husband. We sufferers always appreciate good supporters. I hope you've been reading the site and getting lots of info. Look at the oxygen info link on the left. Print it and bring it to you dr. If you Google Cluster Headaches, you'll find that many sites recommend oxygen. Prescriptions are not the only way to get it. Also, look on the Medications board. You'll find info on conventional preventative and abortive meds and on alternative treatments as well. Ask questions on any of the boards...someone will come along and answer. Good luck to both of you. Keep us posted! ~nani

Title: Re: Tell us something about your SUFFERER
Post by estelle19 on Jun 20^th, 2005, 7:43am

nani: thanks! ... hmm unfortunately my father has no computer but I have mentioned to him this site briefly...

margi: thanks for the support also! ... yeah my father has tried oxygen and it didn't really work out for him. He's aware that too much Imitrex is not good, but there's nothing I can do to stop him-you know? Now that spring is over, things are a little better...
Also, thanks for the link to the Canadian website! I'm gonna go check it out right now =)

take care people! =)

Title: Re: Tell us something about your SUFFERER
Post by Belka on Jun 25^th, 2005, 8:49am

My name is Shandra, and after finding this website in desperation on Sunday when my husband scared me to death with the worst attack I've ever seen, we believe my husband David is an episodic sufferer. My husband started getting attacks his senior year in high school and usually has 1-2 clusters a year that last about 6-8 weeks each time. He has had 3 episodes since I have been with him, but we never knew what caused them. It was 2 years since his last episode. Every doctor he has gone to has thought it was "all in his head", "stress", "sinusitis", or "migraines". I think some thought he was a drug addict, too, because he would tell him the medication prescribed didn't work ,and he wanted something else or something stronger. Nothing would ever get resolved, and by then, the episode was over. I didn't think it was migraines because I get migraines and too many things were not adding up. David was beginning to think he was crazy and that he'd never find a doctor that would figure out what was wrong, and I was beginning to think it was just stress. After reading the descriptions on this sight, it described his symptoms to a "T". We just told his family doctor on Monday to refer us to a headache specialist because we believe he has cluster headaches, so he refered us to a neurologist named Elliot Michel in Tarentum, PA. I feel like we are finally getting somewhere. He's been really depressed lately, but I think this new information has given him hope and a new outlook. At least we have some idea of what we are working with now. Hopefully, this neurologist will be able to give him something to take that will help. The anticipation of getting another headache ruins any time he doesn't have a cluster headache when he's in his cycle. It's been 23 days so far, and he has to wait another 2 weeks before seeing the neurologist. The bad part is I think he is peaking right now. This board has been a God-send. David is currently having an attack right now, and he usually wants to be left alone. I think he gets embarrassed when he's in this state. He screams and hits things and thrashes around, and he doesn't want our 2 1/2 year old daughter to see him like that. Generally, I don't think he likes me to see it either. This board has quickly turned into my outlet. It's my way of coping. I worry about him and I get scared. I know there is nothing I can do, and that is the most frustrating part. It is hard to watch someone you love go through this. It's nice to know I'm not alone.

Title: Re: Tell us something about your SUFFERER
Post by nani on Jun 25^th, 2005, 1:06pm

Hi Shandra, welcome. Sorry you had to find us.
Thank you for being a supporter to your husband. We sufferers really appreciate our supporters. :)

You'll find a lot of info and support here. While you're waiting for his appointment, I suggest you read, read, and read some more. Have David keep a headache diary. Include info such as time of day, intensity, duration, and possible triggers. Read the oxygen info link on the left. Oxygen has been very helpful to many of us.

I'm one of those people that needs to be left alone when I'm getting hit. It's nothing personal, just my way of coping. I'm sure David's suffering has had a huge impact on all of you. It's the nature of this beast. A good suggestion I've heard for little ones is to have a special box of toys or activities that come out only during hits. It gives the child something else to focus on. I am raising my grandkids and the 9 year old copes by drawing pictures of it.

Be sure to find a way to take care of yourself through all of this. You deserve to pamper yourself now and then, so be sure to find a way to do so.

Have David come here and learn. We're pretty good supporters, too. This place literally saved a few of our lives. I've put some links here, for both of you to look at. Take care and keep us posted, OK? Sending pain free wishes to your house, nani

Medications:
http://www.brightok.net/~mnjday/chtherapy.pdf

A great online resource written by one of our members, Floridian:
http://med-owl.com/clusterheadaches/tiki-index.php?page=HomePage&PHPSESSID=a125ff345b0f1e7667a44b971494f6b8

Title: Re: Tell us something about your SUFFERER
Post by fat___pam on Jun 29^th, 2005, 7:12pm

Hi, my name is Crystal and I am a supporter to my bf Dave(mr_fixit, incase he does post someday). He is 39 and is an episodic sufferer (once went 4 years with no HA!). Dave has 3 daughters, 15,15 and 17. The twins live with us. We have lived together about a year and a half. The first 13 months were a breeze! A few heaches a week, they would peek, a few pain free days here and there, and then June happened. I knew that he had HAs when we first met and they had been very light until recently (if clusters can be light, maybe he has had shadows all along??) Last three weeks they have been getting a lot worse. He had an 8 today and even threw up, which he hasn't done since we have been together. A 7 last night and scattered 4-5s each day, all at the same time of day each day but different levels of pain. (He isn't complaining one bit either, he knows it can be a LOT worse) He has previously tried a host of drugs and O2 as well. Nothing has worked up to this point. We have 2 neurology appointments within the next few months, I might make a post on that, long story. I am a school teacher so I am off for the summer and I have a LOT of spare time while Dave is at work and while he is fighting it out on our bed. I take care of "research and scheduling" he takes care of relaxing and trying not to scare me too badly. This site has been wonderful I have been reading for hours a day the past few days. He is taking Kudzu right now, it doesn't seem to be helping yet, but we aren't giving up.. its been 5 days. He is ready to try any alternative at this point. I think we will ask the neuro primarily about imatrex injections and verapimil. I might even beg him to try 02 again because so many people get relief from it. Right now we are both scared, August is the worst time of year. He calculated that he has 100 more headaches before he gets to go to the neuro. (oh, add to his responsibilities CALCULATING). He borrowed a pda to track the headaches, and good news only one bad one today, skipped the ride home HA for some reason.. lets hope the 7:30 gets lost on its way. Thanks for all of the fabulous info. There are so many touching and wonderful supporters and sufferers on here. I can't count how many times I have cried reading their/your stories. One more thing.. Dave is a smart beautiful man and I love him like crazy.
Thanks
C

Title: Re: Tell us something about your SUFFERER
Post by fat___pam on Jun 29^th, 2005, 7:30pm

Frank, I just went and read your post.. YOU MADE ME CRY. Thats ok though.. we all need to cry now and then. Dave tells me not to worry, its ok, ect ect ect.. I don't think I could stop worrying if I tried. I recently went to the dentist, I have TMJ from worrying/being stressed. Not over the HA until recently, cause of teenaged kids, but anyhow.. I mentioned to the Dentist that bf had CH and that brought on a few rough nights for me recently and he actually said to me.. "DON"T WORRY ABOUT IT... THEY CAN'T KILL HIM." I was so shocked that he knew what they were I couldn't even slap him. What I wanted to say was something to the effect of "why don't you let me bang you in the head with a hammer 4 times a day... I promise, I won't kill you."
C

Title: Re: Tell us something about your SUFFERER
Post by Belka on Jul 1^st, 2005, 8:22am

Hi Nani,
Well, David seems to be on the downswing right now. He didn't have any HAs yesterday. (Of course, now that he has an appointment with the neurologist, his cycle will end. But that's ok!) Even if his cycle is ending, he is going to talk to the neurologist anyway. He has been keeping a log. I have to keep reminding him, but he's getting better. It also gives me something to look at because he's more honest about the intensity of the pain when he writes it in the log, as opposed to when I ask him how bad it was. He thinks he needs to be strong for me and doesn't want to scare me. Thanks for the information. I'll keep you updated!
Shandra

Title: Re: Tell us something about your SUFFERER
Post by Erin on Jul 13^th, 2005, 8:17am

I just have to say... I'm not a supporter (though I would be, if I needed to be)... I'm a sufferer, had clusters from the age of 20 until the age of 39, they came in cycles of 2-3 months followed by 1 to 3 years of remission for 18 years, then one brilliant doctor prescribed a beta blocker (propranolol, I believe it was) when I had just gone into a cycle... I had one or two more mild attacks in the first few days after I started the med, and then the cycle ended as abruptly as it started, much sooner than it normally would have, and I never had another attack after that... until 3 weeks ago. :( I had truly thought it was over forever, and to start having them again after so many years of no pain is like... a nightmare.

Anyway, I'm posting on this thread not to talk about me or my clusters but to say that after reading only the first few messages in this thread, I am in tears... it's funny, reading the messages from sufferers makes me nod my head and want to say "me too" but reading these messages from supporters fills me with overwhelming emotions of sadness and love for those who have suffered with us - I can only try to imagine what it's like for people on the other side of our "wall of pain" (as I call it - this pain is a great isolator) and I think anyone who stands by someone who suffers from CH has earned the title of ANGEL. God bless you all.

Erin

Title: Re: Tell us something about your SUFFERER
Post by maryc on Jul 29^th, 2005, 9:35pm

You all know Maffumatt, well if you think he is a pain on this message board you should try liveing with him. Ah he is not that bad. He has his moments. I get a little jealous of the computer sometimes, he spends an awful lot of time on it. Anyone else have this problem? He says it helps helps him concentrate on something when his head hurts. I have read alot of the letters here and see that you people have some of the same probles as we do. On top of the everyday stuff his headaches just add to everything else we have to go through.
Mary

Title: Re: Tell us something about your SUFFERER
Post by kayarr on Sep 9^th, 2005, 11:40am

Greetings,
My name is Kimberly and my husband's name is Jeff. He had already had CH for at least 7 years when I met him.
I remember our first date and I know now he had to have taken Imitrex bacause he didn't have to get up and "fix" his head. (Imitrex for him will give him 4 hours but the rebound is more nasty so he saves it for when he has to interview or wants to take me to a movie:)
We have been married for almost two years. I have never known him without CH. He is chronic. (translation: of course he has that 2:00pm headache his "safe time" is inbetween 7:30am and 10:00 am mostly...but there is no way to tell when it will hit next.)

He gets about three days off a year. We kinda look at each other and think at the end of the day....hey, the oxygen tank has not moved!!!!!!

My guy, being a reforming control freak, has decided for himself that to dwell on this thing would consume him.

He was blessed in that his first Dr. knew what it was, diagnosed it correctly and knew about oxygen. The nuero put him on verapamil and depokote right away. Up until this year he had no idea how much the verapamil helped since when he had a heart attack we had to stop it. It didn't play well with his other meds. (since not taking that it has been the worst headache year in a long time)

I have nothing but admiration for the man. He hurts terribly but maintains that love for life and a sense of humor that drew me to him in the first place. (Yes, he can have crabby moments but who doesn't) Because of his ability to cope he makes my job as supporter really easy. All I really have to do is Love him with everything I have in me to give. Simple! Oh, and pick up the slack when necessary.

*footnote*
His yearly KIP numbers seem to be in the 5-6 range. We just entered the fall headaches season (makes sense it corralates with hurricane season) and the 8 and above are here:(

Title: Re: Tell us something about your SUFFERER
Post by eisgirle on Sep 12^th, 2005, 9:29pm

I found this website and I think it is great. My fiance-soon to be husband in Sept. of 2006-Frank, suffers from CH. We thought we were doing really good because he hasn't had any since 2003 but boy were we wrong. He has had one now for 1 week and 3 days and there doesn't seem to be an end in sight. It pains me to see him when these bouts start in the wee hours of the morning. He faithfully gives himself his shots of imitrex and takes his prednisone and now they have him on epival also. Will this pain ever stop for him? >:( What causes these bouts? All he is told is he has an imbalance in his brain. The toll that it takes on myself and our daughters is horrible and he thinks he is a loser because he is missing work and can't do much because he is in a constant "stoned" stage. Thank you very much for making a website for sufferers and supporters. We have learned lots of helpful info and will keep checking back. :)-Dawn

Title: Re: Tell us something about your SUFFERER
Post by Heather75 on Oct 23^rd, 2005, 11:37pm

Hello to all that are here! And thanks to everyone who deals with all of us/CHs.

CH.com is a tough place to be, but I don't know what my sufferer or I would do without it.

I've been a CH chronic supporter for almost 3 years now.

The headaches were a gradual progression. They started out with nasty HAs (now we call them "the mini HAs" ) that were originally alleviated by cold/sinus pills and a couple of antibiotic spells kept them at bay. Those went on for almost 2 years (not part of the CH sentence).

Then one night the first CH happened. I was so scared it was a brain tumor or something deadly, but he didn't want to go to the ER. Luckily it passed and we thought everything would be okay (Little did I know that would become our future :-/ ).

Several months later, the CH became regular. We were still pretty stinking scared of what it could be.

Rex found this site and said, "I think I know what it is. I think it's a cluster headache."

Honestly, I was so scared, I still thought it was something deadly.

Soon after, we got him signed up with an HMO, went in pretending not to know what was going on (y'know the whole pre-existing condition thing) and luckily the doctor picked up on the CH right away. A blessing for sure! I know there are so many out there that spend years and decades finding out what "the beast" is...

Once we got him the health insurance, he went through a bunch of tests (to make sure there wasn't something fatal in there), then meds, and they never really did much good. Between the side effects and not eliminating the CH, it felt like we were getting nowhere really fast.

After a very scary incidence with his second time on Prednisone trying to break the CH, he swore off all meds and started doing the clusterbusters (http://www.clusterbusters.com) treatment, along with O2. Honestly, I'm glad to see him back.

It's definitely helped him. Although the HAs are not gone, life is more manageable now for the both of us. I know when he was on the meds, he was half of the person I had married. It was getting really depressing for the both of us. Not only was he in pain, but he couldn't think or be "who he is". At least now, he's back to being more of himself: crazy, goofy, joking, caring, and creative, but that's who I married. ;)

He hasn't been cured, and I keep trying to find something that will "do the trick" but, like anyone else who is reading this, no one has found it yet.

I have decided that anyone dealing with this should be called a hero. Waking up every day, knowing that it's going to happen again, dealing with this pain, whether your a sufferrer or supporter, is a hero in my books.

Wishing to beat the beast for all,
Heather

Title: Re: Tell us something about your SUFFERER
Post by ClstrHeadSupport on Oct 24^th, 2005, 9:37am

Something about my sufferer...

Simply put he's the most kind, loving, genuine person I have ever met. Which is why I'm completely baffeled as to why this pain would be given to him. Sometimes I get so frusterated thinking about the irony of this world. There are teenagers who get pregnant and throw the babies in garbage cans, yet there are women out there who are good people, women who would be GREAT mothers, and are unable to have children. I work my butt off and at times can barely make the bills, yet I know losers, who refuse to work, milk the system and live in decent homes, spend more time with their children then I can and can afford to go on trips to Disneyland. Sometimes life just makes no sense to me. But I guess that will never change.

My husband and I have been together for four years this coming November. (Just married April 30th 2005)Our story is a long one, and it would take as long to explain it all for anyone reading this to truely understand how much we mean to eachother. So to make it short and sweet he is my knight and shinning armor. My best friend, soul mate, true love...whatever you want to call it.

My husband is 26, he's been diagnosed with Cluster Headaches since he was about 18. His first memory of having one was when he was 15. He's episodic. Currently just ended a cycle. It wasn't pretty. Probably one of the worst cycles yet. They actually went away for quite sometime, now they're back. And they were worse then ever.

I found this site during his last cycle. The only relief my husband had ever had from these monsters was with Stadol NS. Which never got rid of a headache, only "took the edge off" as he puts it. Hes been to more doctors/Neuro's then I have hairs on my head. We have been to recommended doctors, highly "esteemed" doctors, all of which seem to be semi smart but none of which who actually care. At the days end it's a pain they can't feel, that someone they don't really know is having. Someone they don't love, someone they haven't had to stand by and watch in total pain...knowing there was nothing they could do. This site was a God send. I was able to take the advice of sufferers here and what medications worked for them and take that to his Neuro. (Tell me why a doctor who's getting paid an amount I've only dreamed of, has to be told what kind of medications to give his patient, by a 22 year old with only a high school diploma?) I know Cluster Headaches aren't a big time known condition but come on now! Getting paid that amount I think I could afford to do a little research. The medications I found on this site worked wonders for my husband. It was here I found the almighty Imitrex. Along with Verapamil. The combination worked wonders. His clusters were the most under control they have ever been in his entire life. Unfortunately as is the nature of this beast, it found it's way around what once worked so well. But I told him, it was here I was able to find the answers once, and I will be on here daily to find help for him again.

Thanks for listening and feel free to contact me anytime! I love you all!!

Just incase anyone's interested my personal site is http://www.myspace.com/sarasbluewings.

Title: Re: Tell us something about your SUFFERER
Post by givin2fly on Nov 24^th, 2005, 5:01am

Well. This is my first post, so "hello" :)

Been here reading for a long time, but never really had anything to say, but I figure.. I'm a supporter so here goes:

Dean and I have been together 14 years. We were best freinds long before we got involved romance-wise, but after living together forever we finally married 5 years ago. We have a 3 year old daughter. His attacks began about 5 years ago and like most of the previous posts, the Dr.s thought it was a sinus infection, eyestrain, etc..
It took a good GP to finally transfer us to a Nero, and when that Nero figured out he was out of his leage, he sent us up to UCSF. We see the CH legend Dr. Neil Raskin at UCSF in San Francisco, CA. Yes, the rumors are true, he is a bit of an a**hole, but he knows his stuff - just dont question him unles you have hard research behind your query. I did once and I cried on the way out of the hospital due to his tirade. We are trying a diffrent drug "cocktail" about every three weeks now, trying to find a solution - but nothing has worked yet.

Dean is a chronic sufferer and his attacks are daily. He's had them for about 5 years now and as per the Nero, he's as bad as it gets. Nothing has worked, and we have tried almost everything mentioned here. The only thing that showed any hope was Verapimil, but the Dr.s took him off after he landed in the hospital from cellulitus due to the side effects. The Dr. is beginning to recommend the brain surgery for Dean, but Dean is still hestiant and since the surgery has risks of it' s own the Dr. isnt pushing. yet.

His only management tools are painkillers. He takes Vicoden, NorCo, and Aptiq suckers (a break-through cancer pain drug) as well as a trip to the ER for a Morophine shot once a week on average. The pain, sleepless nights and grumpiness is what we cope with daily - and the personality changes are dramatic. It's awful. The Dean I married is a sweet, darling husband and father - and I still get to see the "real" Dean about once a week - other wise I live with a couple of the seven dwarfs (my personal joke): Dopey, grumpy, or sleepy (painkillers). Life is hell, but I'm holding on waiting for the magic prescription to take us from this nightmare.

Cynthia

Title: Re: Tell us something about your SUFFERER
Post by E-Double on Nov 24^th, 2005, 10:31am

I just want to thank you all once again for standing by us.

You are all loved so very much and greatly appreciated.

Eric

Title: Re: Tell us something about your SUFFERER
Post by zanychef on Nov 26^th, 2005, 3:41am

i'll ditto that eric ;;D ;;D

Title: Re: Tell us something about your SUFFERER
Post by Dan_The_Man_Howell on Nov 26^th, 2005, 3:26pm

Howdy,
My name is Daniel Howell. Son of Linda Howell or welch or whatever she calls herself theese days :)
My moms had CH's since 1984 (I think). I was eight years old when my parents split so I dont remember her attacks back then but as i got older and visited her each year, I became more aware of what was happening. The first time I realized how bad her pain was, was when she began to bang her head against the wall. It scared the sh$* out of me! Ther i was , probably 10 yrs. old and mommys hitting the wall w/ her head to DULL the pain! I wished there was SOMEthing I could do. All that I know is to brew a strong pot of coffee, give her 02 and maybe rubbing her neck may help. I dont live with her but luckily her new husband jim does. Now by nature I dont like him, but, she says he takes care of her and if thats true, then Im glad hes there. Knowing from experience, there really isnt anything anyone can do as a bystander but pray helplessly for it to end.
Well, thank you to those who support my mom.

Title: Re: Tell us something about your SUFFERER
Post by vig on Nov 26^th, 2005, 10:08pm

just do the best you can Dan,
I'm sure she appreciates it...
we do

Title: Re: Tell us something about your SUFFERER
Post by Dan_The_Man_Howell on Dec 3^rd, 2005, 3:44pm

Thanks vig. Is there anything else that we can do to not be so helpless?

Title: Re: Tell us something about your SUFFERER
Post by Cathi04 on Dec 3^rd, 2005, 5:29pm

Dan, you're doing it! You are here, and you are talking about one of my very favorite sufferers.....and ya know what?? She has a lot of love for you!
Thank you for posting about "our Linda".........
You're quite a man, Dan!

Cathi

Title: Re: Tell us something about your SUFFERER
Post by Dan_The_Man_Howell on Dec 7^th, 2005, 1:46pm

Thanks Cathi. She is a loving mom .aaahhwww!! Were gettin all mushi!!! lol :)