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        Cluster Headache Help and Support >> Getting to Know Ya >> WELCOME!
        
(Message started by: t_h_b on Feb 10^th, 2004, 6:35pm)

Title: WELCOME!
Post by t_h_b on Feb 10^th, 2004, 6:35pm

Welcome to all new ClusterHeads!

Words of advice borrowed from CJohnson (Curtis), another poster:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.

One way to help others (as well of yourself) in the words of yet another poster, Elaine:

I am fighting the only way I know how. I back O.U.C.H. anyway I can. Through O.U.C.H. the word WILL get out that Clusters are more than a headache. More research WILL BE done. More doctors and hospitals WILL know our needs. Insurance companies WILL know our needs. Along the way someone just may trip and fall over the cure!

There is a link to O.U.C.H. in yellow over to the left.

Title: Re: Welcome!
Post by Little Deb on Feb 10^th, 2004, 7:08pm

I shall bump this one, cause it is good......

And say hi to everyone while I am at it!!!!

Big Hugs....Little Deb ;;D

Title: Re: Welcome!
Post by fubar on Feb 10^th, 2004, 8:10pm

If I grind this to the top...

does it mean I can say me and deb are doin the bump and grind?

oh nevermind

bump

Title: Re: Welcome!
Post by BlueMeanie on Feb 10^th, 2004, 9:23pm

WELCOME TO ALL THAT FOUND THIS SITE. YOU ARE NOT ALONE ANYMORE WHILE YOUR HERE.

SENDING PF VIBES TO ALL.

Bump to THB's post. Check for Meet & Greet events. It's a wonderful thing to talk to fellow Clusterheads if you get the chance.

Title: Re: Welcome!
Post by ClusterChuck on Feb 11^th, 2004, 12:35am

To all newcomers, WELCOME ABOARD!

A few thing I would like to tell all of you. First and foremost, you need to read this link: http://www.clusterheadaches.com/history.html
That link tells the history of this site, and about our illustrious DJ. There is not a finer person on this earth!

Second, get to know the people here. There are some wonderful people here. One of the ways to get to know us better, is to go to the chat room that a sister site runs. To get there, go here: http://www.clusterheadaches.com/chat/ There is normally someone there after 10 pm east coast time. If no one is there, log on, and wait. Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.

Get to know people, as you will form close ties with people that should last to the rest of your life. Exchange phone numbers. Talk on line, and talk on the phone to them. These people can be an unbreakable life line for you, and you can be for them.

Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever. We are here to help you in any way that we can. The one thing that we ask of you, is to give your support to others, also. We are sufferers, and we are supporters. As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.

If you ever get a chance to meet another clusterhead or supporter, do so! There is no better time than meeting them in person! The bond is instantaneous! And do not let the fact that you are in cycle stop you. I have been to two of them, so far, and at both of them, I was getting hit. All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group. Everyone knew what was happening, yet no one freeked out over it. They were there if I needed them, but knew enough not to force themselves on me. You could see the love and vibes in the eyes of each and everyone of them. This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache! Deal with it! Take a couple aspirins, and you will be fine."

Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here. Many of us say, that if it was not for this site, I would be pushing up daiseys. That is not just a phrase, it is the God's honest truth. When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation! Also, thank DJ directly. He doesn't post much anymore, but he DOES read all posts.

Thank you DJ!

We are a family. Welcome to the family, and welcome to my heart.

Chuck

Modified to update to new chat room

Title: Re: WELCOME!
Post by stevegeebe on Feb 11^th, 2004, 8:02pm

Well said Chuck.

Man there's a lot of new people lately!?

Steve G

Title: Re: WELCOME!
Post by JDH on Feb 12^th, 2004, 12:35pm

Welcome home new people [smiley=hiya.gif]
Read all you can find and tell us a little about yourselves. There's a lot of good info and good people here so stick around.

on 02/11/04 at 20:02:58, stevegeebe wrote:

Man there's a lot of new people lately!?

Steve G

There sure is Steve.
I wonder if there are times of the year when we see more newbies than at other times. I'm thinking Spring and Fall.

Jim

Title: Re: WELCOME!
Post by stevegeebe on Feb 12^th, 2004, 10:15pm

Must have been a cloudy day for Punxsutawney Clusterhead.

We're in for an early spring.

Oh boy!

Steve G

Title: Re: WELCOME!
Post by Mr.YL on Mar 12^th, 2004, 12:02am

Saddled back up;
on the ship again,
no bailing
on this ship
The titanic was lost, but we got a good crew...
keepin in check, had one sent
the vents been cleared, you are all so dear
row row, toot toot.

thank you...Mr.YL

Title: Re: WELCOME!
Post by Tiannia on Mar 27^th, 2004, 12:36am

WOOT Thomas you have been stickied!!!!!!!!!!!!

Title: Re: WELCOME!
Post by Tiannia on Mar 27^th, 2004, 12:42am

on 03/26/04 at 20:56:36, xorn wrote:

mud(don't ask).

ok sorry I have to ask what is mud? ;;D

Title: Re: WELCOME! MUD
Post by xorn on Mar 27^th, 2004, 2:35am

MUD means Multi User Dimension.
It is a three dimensional world but it is all in text.
Most have fantasy themes.

So it is basically Dungeons and Dragons online.
And I've played for many years.

Title: Re: WELCOME!
Post by tlc4all on Mar 29^th, 2004, 4:12pm

Thanx Chuck!

I am honoured and will happily claim my space in your heart. Preverably deep in2 1 of the corners 2 ensure U do not lose me.

tlc2U and everybody U luv

Title: Re: WELCOME!
Post by djsdds on Mar 29^th, 2004, 10:20pm

Hi!

I guess I'm the newest member. This is the greatest website I've ever seen. When I first started getting clusters I was 19. There were no computers or web for that matter, it was 20 years ago.

I'm a dentist, and it took until I was in dental school to get a correct diagnosis. We had a chronic pain instructer who was shocked that I was a young female with clusters! I'm so special!!

So here I am now, age 38. I have 4 kids, have never had a cluster during pregnancy (no, that's not why I have 4 kids!! LOL) My youngest is 3 now. I would get a cluster after each delivery and this time I've gone over 3 years without any! I prayed to God they were over in my life until March 9th at 2am they hit again!

I'm 20 days into it now and I think it's slowing down. I was waking up every 30 min to suck O2. Last night I only woke up twice! I try to avoid meds but I'm dependent on Oxygen.

O2 works well in the beginning of the cluster, and in the last weeks. NOTHING works in the middle days or weeks. In the past I've used an Ergotamine inhaler. That's like snorting alcohol (which of course, I'd do if it worked). I tried the Imitex inhaler this time which just made me sick!! So instead, I screamed, paced, cried, rocked like a crazy person and when it seemed to be coming down, I prayed the O2 would work next time!

This is like living in Hell!!

Title: Re: WELCOME!
Post by HypnoticFreddy on Apr 1^st, 2004, 7:36pm

Hi my name is Scott and I sometimes feel like a new member, although I really first visited this site when I was diagnosed in the summer of 1999. The summer of complete utter Hell.

This site was of utmost importance than and still. I have not been proud of some of my postings lately, but I am past that.

I have spent more time reading lately, rather than posting, but feel it's ok to post now :D

I also would like to know who DJ is, and if he/she is the creator of this website? If so, thanks. This site was my portal (especially in '99) into the world of CHs, and what they were, how they were treated, and of course the message boards where you realize other people have the same exact oddball condition.

Thanks to the creator of this website, whoever you are.

-Freddy (Scott)

Title: Re: WELCOME!
Post by Superpain on Apr 2^nd, 2004, 12:54am

Yes. DJ is the almighty creator. HE has posted in your other thread... Go say hi.

Title: Re: WELCOME!
Post by bubbarube on Apr 6^th, 2004, 3:12pm

Hello Everyone, I am brand new to this site! I just stumbled onto it! My husband has had CH's for 20 of our 26 years of marriage. We have raised 2 kids. The youngest being 16. Both kids have always been so terrified during one of their Dads CH. My husband like all of you that I read about have tried many, many drugs. None of which didnt work, till about 7 years ago and we found a Dr. about 5 hours from our home and he put him on a drug called [sansert]. Maybe someone has heard of this, if so let me know. He only takes it during a cycle, it has been 2 weeks now and they seem to be getting better. Not as severe, but as often 1 to 2 a day. I know I myself do not have the Ch's but wish it was me instead of him. It is so hard to watch cannot imagine being the one in the horrible pain. Please if any one has any new things to offer or just a word of encouragement let me know. Desperate in a small town!!!

Title: Re: WELCOME!
Post by FZfan on Apr 6^th, 2004, 5:08pm

Hi bubbarube and welcome. Sorry you had a need to find this site, but glad you did. Like many of us, you "stumbled" onto it not realizing it has been around for awhile.

There is a supporters corner here you might check out. After 20 years, I would think you would be pretty good at support.

I have no experience with sansert, but it sounds like a preventative. Your husband should also seek out a good abortive. If you've done a little reading around here, especially in the "getting to know you" board you've seen a lot of references to Oxygen. You didn't mention whether this was something your husband had tried or not. It's not necessarily a new thing to offer, but it is something that seems to get overlooked, or used incorrectly. In my case, I had been using it incorrectly until I found this site. There is an oxygen info button to your left. Definitely check this out. Breathing high flow rate o2 with a non-rebreather mask at the onset of a cluster attack is very effective at aborting the attack for many of us. If it's not something your husband is currently doing, do it! It certainly can't hurt. I know in my case I was only getting some relief with o2 until I started using it correctly. I couldn't believe the difference.

There are many other ideas/strategy's available here. With the help of a good doctor, I'm confident you can find something here that works for your husband. Grab all the info you can here and share it with your doctor. No one thing seems to exist that works for everyone, which is one of the things that makes it so frustrating to treat.

If you can get him to, have your husband read up on this site. I'm willing to bet he will be absolutely amazed at what he reads and will several times utter the phrase, "my god, that's me!"

Good luck to you folks, after 20 years of battle I'm sure you have some interesting war stories. Don't hesitate to post them. Even the bad ones.

Glen

Title: Re: WELCOME!
Post by bubbarube on Apr 6^th, 2004, 9:39pm

Fzfan, Thanks for the response. Not sure if Im doing this right or not? Yes, we have many HORROR stories! Yes my husband has tried o2. But I wiil check out the o2 info, as he may have been doing it wrong! He has been on so many drugs, as a matter of fact the Dr. we had before the one we have now he had him on so many drugs at the same time, when we switched DR.'s we took the bag of drugs with us and I remember taking them out of the bag and Dr. asking ok which ones are you currently taking and when my husband told him all of them, he said {MY GOD MAN WHATS HE TRYING TO DO KILL YA!} I will try to find the supporters corner you referred to as I would like to help anyone that I can and have the mutual support myself, as it is so hard to watch the one you love. more than life itself in such horrible pain. It is so nice to have some one that knows what your talking about! So glad I found this very informative and friendly site. We personally dont know any one that suffers with the beast! All our friends and family try to understand but they have no clue. I almost get mad when people say yes I know what hes going through as I have severe sinus headaches, or its just a headache whats the problem? You have to witness one or worse yet suffer through one. Again THANKS for all the info! Going to check out oxygen info hope to learn something!

Title: Re: WELCOME!
Post by Neslodine on Apr 16^th, 2004, 3:01pm

Hey. Myt name is Holden and I liev in Maine. Way up in Caribou. I am 28 years old. I have had clusters fore a long time I think. But I want to help. what can I do to help out? Do I need to give any moiney? I do not have much money.

Title: Re: WELCOME!
Post by Little Deb on Apr 24^th, 2004, 9:44pm

Visit the OUCH site if you haven't already. Lots of fundraisers going on....check around.

Welcome to all of the new people! So great to have you here.

Big hugs...Little Deb

Title: Re: WELCOME!
Post by eddie on Apr 30^th, 2004, 3:44am

my name is eddie im new but i will figure this message
board out one way are another i cant believe after 19
yrs i figured out what has been killing me CH but next
week i go to the neruo i went to the er the other night
i have been chronic for a long time just getting info what
was wrong so i went to the er they gave me some shots
of somthing did ct scan ask me how i felt i told them it
was ch they gave me some o2 20 min later i started to
smile for a change that seem to make me feel better
but 3 days now its coming back hard i do feel bad now
so i cant wait to get to the doc next week o2 i believe
it helped alot i cant take to much more of CH i want the
doc to understand how bad it hurts 18 to 20 yrs
of this is enough! hope he will give me imitrex&o2
but keep in mind they had to look that info up but
i tried to be as nice as i could and that has been
hard for me lately see im irish and here lately it
seemed like i hated everybody but i dont i really
love life so thanks to this site & a sweet lady &
few people emailed me i got on the road to some
relief so THANKS ET

Title: Re: WELCOME!
Post by Little Deb on Apr 30^th, 2004, 8:49am

Welcome Eddie!!

Little Deb

Title: Re: WELCOME!
Post by OneEyeBlind on May 4^th, 2004, 7:40pm

Welcome to the board Eddie, the O2 works for lots of people here ... so keep on your doc and make him give you a script for it. It's easy to use, check out the button on the left for all the info you need to use O2 properly for CH.

Wishing you pain free times.

Title: Re: WELCOME!
Post by katethecelt on May 8^th, 2004, 3:29pm

Excellent Welcome post!

I hope everyone new to clusterville reads all the replies. The advice and support are great - as usual.

If anyone needs a clusterbud, just email or send me an IM. I've been gone so long, it's the least I can do.

It feels sooooo good to be back!

Kate

Title: Re: WELCOME!
Post by cav_cav on May 27^th, 2004, 6:49am

hey peeps**thumbs up to ye all**

this is my first message on this here n actually my first message on a message board so if i screw up, i apologise.

any how little bout me, am ginger:D, 17, from glasgow scotland n am god damn sexi:P. i was diagnosed with clusters when a was 15 and at the time it was just b4 my 4year prelims exams. due to tthe clusters a missed bout a month of school, which for any rock star in the making would find cool but.........alas**ye luving it yet, thats a gr8 word:P**eh....where was i, oh yeah....alas....there was one minor:P problem, i got these headaches which were just wow. i say wow coz a had never experienced nethin like them. hehe a joked with ma self sayin at any moment an alien would burst through ma head:P. so anyway went to the doctors and at first he put me on betablockers, hehe which didnt work then bout 2 weeks later he put me on to injections which did kinda make me nervous :-X. Bur anyhow they worked.

this is a thanks from the cav-cav for the peeps who created the site, awesome

cav-cav\m/

Title: Re: WELCOME!
Post by NAB on May 27^th, 2004, 1:57pm

Hi everyone! My husband currently is suffering from CH and I was on the supporters site and it was suggested that I come onto this site and introduce myself.

I guess that my husband has been suffering from CH for well over a year. He suddenly started having bad headaches and an MRI was done that showed a Pit Tumor. They took that out and thought that everything would be fine. Well after 4 neurologists he finally found a neuro that classified his headaches as CH, however he is not really famaliar with them so he is "doing it by the book". He started that Vapermil (I think that is how you spell it and they got slighly better) also gave him o2 and that seemed to work. Then the headaches came back and they upped the Vapermil. That worked for a while and then stopped. Started him on Prednisone and that did not work and so then they started him on lithium. It has only been a few days so I am not sure if that will work.

I can say one thing as being a supporter it is hard to keep the faith. As each day goes by I seem to be losing hope which is not good for him or our family.

Anyway I am new to the site and I know that he looks at the site but I do not think he posts.

We live in Illinois and am soo glad that we discovered this site.

Hope to talk to you all soon as the agression needs to get out somehow.

Title: Re: WELCOME!
Post by byron_clusterhead on Jun 12^th, 2004, 12:51am

im glad i found this site and no now that i am not alone pfd's are not impossible never give up hope :-*

Title: Re: WELCOME!
Post by E-Double on Jun 14^th, 2004, 8:45am

Hi all,
Thank you so very much for all the responses; advice support, etc.
Knowing people are out there can put your mind at ease when you feel helpless.

Forever greatful,
Eric

Title: Re: WELCOME!
Post by EDHASFORDS on Jun 17^th, 2004, 2:52pm

Thanks, for all the welcomes! It is good to be back with you guys after so many years of reading the board but not saying anything! (Please forgive).
The reason I have decided to get involved is I want to be able to ask questions and of course get responses that are directed to me. We all have our little box's we live in. They may look like one another but each of us has something special to offer!
Anyhow thanks for allowing me back!
callie bro. :D :D

Title: Re: WELCOME!
Post by AlexC2004 on Jun 19^th, 2004, 12:39am

Haven't been back in a few years cause I been in remission. Have had a few mild attacks the last few nights and have taken to the shower. Discoverd the shower treatment a few years back, during another episode period and it works well for me while in "season" so to speak. I am hoping this season the attacks stay mild.
By mild, I mean, not vomiting this time. I've had them off and on for over 20 years. My remissions can last 2-3 years, and my season, as I call it, runs aanywhere from 30-60 days. And the last season -- ands so far, this one -- they don't seem to greatly intensify -- or maybe the water stimulation is just distracting me. Light sensitivity and sinus are still present, so I take the shower in the dark.
Glad you guys are here. I've notice that when they wake me up, they're not quite as intense, and if I stumble to the shower, and get going, I'm okay.

Does the shower treatment work for anyone else?
I just stand there, or sit, sometimes, and just keep warm water hitting the same side of my head. more or less. I have to be careful though, cause I want to fall asleep.
Takes about 15-20 minutes and then I seem to be okay.
Exhausted, but okay. I've always thought that was weird, too, getting out of a shower, more tired than when you got in.

Only with clusters...

Title: Re: WELCOME!
Post by psycofemale0403 on Jun 23^rd, 2004, 7:24pm

Hello everyone, I'm new to this site, and so thankful that I"m not crazy, and not alone! I'm definately looking forward to meeting fellow clusterheads. Thank you for being here.

Lisa :)

Title: Re: WELCOME!
Post by E-Double on Jun 23^rd, 2004, 7:50pm

You'll find tons of amazing info and tremendous support!!
Unfortunately ;).......Welcome aboard!

Eric

on 06/23/04 at 19:24:07, psycofemale0403 wrote:

Hello everyone, I'm new to this site, and so thankful that I"m not crazy, and not alone! I'm definately looking forward to meeting fellow clusterheads. Thank you for being here.

Lisa :)

Title: Re: WELCOME!
Post by Little Deb on Jun 27^th, 2004, 10:36am

Just a BUMP!

Welcome to everyone! We are glad you found us.
Keep reading, and stick around. Someone is always here 24/7. You will never be alone in pain again.

Big Hugs...............Little Deb

Title: Re: WELCOME!
Post by karenruch on Jul 15^th, 2004, 5:59pm

Hey everybody... Not new to the site ,but never posted a message before. Been a cluster headache sufferer for thirteen years now, and after no headaches for a year and a half , their back.
Just so nice to be able to read others messages... know that I'm not alone. I'm feeling a little shell shocked right now after just getting through a bought so I'll sign off.
Karen

Title: Re: WELCOME!
Post by mrbrz on Jul 20^th, 2004, 8:07am

Hi, I'm new here, but not new to the clusters, been having them for over thirty years...man, a nurse told me about this site two weeks ago...very glad to know i'm not alone with this. I won't go into detail, but there has been many i've done to find relief thru the years, until a nero.doc at the v.a. figured it out about eight years ago.thanks

Title: Re: WELCOME!
Post by roosterred on Jul 30^th, 2004, 9:27am

Hi, my name is Carla and my boyfriend of 3 years suffers from this horrible monster they call " headaches". The first year together was weird since I thought he was losing his mind when he would rock back and forth and cry like a baby. A dr. at the er told him to use claritan d. That seemed to help him for about a year and a half. About a month ago the demon came back full force to claim his sanity once again. I came across this site, thank god. We took the advice of using melatonin 3mg. Rick has had a decent night sleep so far, only on the 3rd day of trying this. I am new to this site and I am getting familiar with everything. Thanks for the insight and info. I will be visiting this site often for support if nothing else.

Thanks again for insight into a terrible hell,

Carla

Title: Re: WELCOME!
Post by judyw on Aug 1^st, 2004, 3:41pm

When I read the last posts, I realized that no one has said WELCOME on this thread lately...So consider it said...it gives a wonderful cross of new people and regular sufferers and supporters...OUCH is the organization formed to promote our cause by bringing attention to us to the medical field and research...they are doing well, money is always welcome, but joining with your support helps, spreading the word by educating your medical support, friends, and family, as well as supporting others by sharing, questions, and venting here...best thanks we can give DJ for all his talent and generosity... 143

Title: Re: WELCOME!
Post by Redneck on Aug 3^rd, 2004, 7:48pm

OK,
Where to start!
Ah! at the beginning. :)
April 1982, like a fairy tale, a long long time ago! Wierd headaches started, ate me alive. I spent 15 years taking toxic junk that didn't help. Only relief (and that may have been in my mind was Midrin {anybody remember that}) For that 15 years I had an average of 3 to 4 outbreaks a year, average time 1 to 3 months, on occasion up to 6 month at a time. Didn't find a good doctor until late 90's, he put me on verapamil and 02. Worked wonders. Have had a few major outbreaks since then, still run 3 or 4 months. Mostly just an occasionl breakthrough and lots of shadows. Keep the 02 handy and never miss the verapamil. Still live in fear, still do 02, always waiting for the next BIG ONE! Helluva way to live! Think I may have to put my wife up for saint hood ! Thats it in a nut shell.
Been There- Done That

Title: Re: WELCOME!
Post by judyw on Aug 4^th, 2004, 7:17pm

Welcome, just sorry you need to be here...How much is your Verap dosage...since that is a key...and how do you take the O2? Hope you have read all the links to the left..Stop back in anytime...Oh, and I second that nomination for Sainthood for your wife...invite her to check out the Supporters Corner...Supporters are always welcome...PPP
143

Title: Re: WELCOME!
Post by goldensky on Aug 6^th, 2004, 8:48pm

This is my first posting. I did find your site in April, a mother of one of my students gave me the address.
I cried and laughed when I reads the words of fellow sufferers. Finally someone explained the same pain I have.
I went to a new neuro in April, after 2 trips in the ambulance to hospital. He said Cluster Headaches and gave me Imitrex injections and a prescription for O2.

The attacks were less and July16 was the last one.
I now believe that the 4 episodes in the last 17 years were all Clusters and not optic neuritis or severe sinus infection.

My daily meds are Verapamil 2x day; Daypro 2x day; o2 as needed, Imitrex nasal spray and injections.

I had lots of support from my family during the last episode from JANUARY 6TH TO JULY 16TH. But they do not understand the pain and panic that comes with a cluster attack.
Thank you for having this site. I hope I can give words of support to someone.
pj

Title: Re: WELCOME!
Post by IndianaJohn on Aug 6^th, 2004, 9:03pm

Welcome pj,

So sorry that you have to be here, but this is a wonderful place with some fantastic people. You'll learn quite a bit here (I sure did).

Best Wishes

John

Title: Re: WELCOME!
Post by Redneck/Jimbo on Aug 6^th, 2004, 9:53pm

Hello all,
sorry it took so long to get back. long days at work, etc.
Judy, i ony take 360 mg of verap a day. Just got off the 02 bottle, one of the wild stress/tired related ones tried.
As to being sorry for me having to be here, nope! Shuda been here long ago, 22 years alone is enuff! Thanks all, tis good to know i ain't alone! especially when i have these idjits that come up and say "i have clusters" yeah, if frogs had wings they wudn't bump their a** when they hopped to! But good to be among people that understand! Thanks,
work runs a bit strange so i will disappear sometimes, but will check back as i can. Best to all.

Title: Re: WELCOME!
Post by Gabbahey on Aug 8^th, 2004, 10:16pm

Hi, am new to the board! Have had CH's for approx 6 years. This board, and website are woderful. Am currently about 4 wks into a cycle. Just started Zomig NS 5mg. Hoping for the best. Look forward to getting to know some of you.
Thanks
Andy
Chaska, Mn

Title: Re: WELCOME!
Post by g4z00 on Aug 9^th, 2004, 10:45pm

Count me in.. I'm trying EVERYTHING... Since it's hard to find a doctor that will give you anything besides narcotics... Currently using acupuncture, vitamin injections, Excedrin Migrain (Has caffine in it) and experimenting with many others. Has anyone tried nitrous oxide w/or w/o O2 treatments? Ordered some White Powder Gold too, will let you know how it works!

Title: Re: WELCOME!
Post by Little Deb on Aug 31^st, 2004, 5:56pm

This is such a great thread! Just have to BUMP it again!

Welcome to ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Little Deb

Title: Re: WELCOME!
Post by jewel725 on Sep 1^st, 2004, 3:07pm

I just found this site today. I have had migraine headaches since I was a teenager. I am now 44 years old. Migraines run in the family and I have also passed them on to my children. When I was younger I usually only had them around the time of my menstrual cycle then in 1995 I had a hysterectomy, they left one ovary. Almost from the very day of the surgery I began having daily "migraines". I would take my medication and I'd have relief for awhile and as soon as the meds wore off, the headache would be right back. I spent a lot of time in the ER, doctors' offices, having tests and [/i]a lot[i] of time and money at the pharmacy. Not too long ago I had a doctor tell me that it is not possible to have a migraine every day. I was really angry because it was like he was telling me that it was all in my head (no pun intended). I finally went to a new doctor and he was asking me about my headaches and he said that it sounds like I have combination migraine/cluster headaches. Does anyone else out there have the same thing? Also, does anyone have blepharospasms (eyelid twitching)? It drives me insane.
As far as pain relief goes, I got most of my relief from Stadol Nasal Spray. Can't get it anymore, so I just have to suffer through. I'd rather be addicted to it and live a fairly normal life than to miss out on all of the things that I've had to miss over the years. That's not even close to being a normal life. You can't plan anything because you have to say "Well, I have to wait and see how I feel that day". And people act as if it is a crutch. When my husband and I first got married he'd say, "Oh, you have a headache every day" or You never feel good", by the way, I have fibromyalgia too. The fibro is better, becoming more active really does help with that.
Jenny

Title: Re: WELCOME!
Post by thomas on Sep 1^st, 2004, 3:47pm

on 09/01/04 at 15:07:18, jewel725 wrote:

Also, does anyone have blepharospasms (eyelid twitching)? It drives me insane.

All the time. Yes it is annoying.

Title: Re: WELCOME!
Post by Sophie on Sep 19^th, 2004, 2:53pm

Hi, I,m new also. Age 60. Clusters started 10 years ago.
I treated them as sinus headaches until last year when
I couldn't handle it any more on a 4 month cycle and broke down and went to the Dr. He gave me triptans and they worked. I was ok until this spring and the cycle started, at the end of the 3rd month Dr. was concern about over use of triptans--so we tried innopranxl (beta bloker)--didn't work. Now I'm on my third week of Topamax which seems to work have had a couple break thrus and many wierd side effects. I know I am lucky to be getting relief but I am very anxious and concerned about long term damage from meds. I don't feel like myself---and feel housebound and antisocial--don't mean to whine--but would like to hear other opinions from Topamax users/ I'm on 100 mg.
Trying to keep this short---happy to find a place to find someunderstanding and it's not really all about me.

Title: Re: WELCOME!
Post by clarence on Sep 19^th, 2004, 4:47pm

Welcome Sophie,

Sorry you have to be here. You will find a lot of support though. As for the Topamax, I don't use it so in don't really know. You might want to use the search function to find out about this drug (the search doesn't always work for me), or post a question about it over on the medications board (in fact, I just looked and there is a thread that was started 9 September that is titled Topamax). I hope this is helpful, and poke around the site a little, or a lot. There is tons of great info, and a whole bunch of really great people. PM me if you have any questions.

Casey

Title: Re: WELCOME!
Post by Kellie on Sep 19^th, 2004, 6:47pm

This is my second round with cluster headaches. The first time I went off work on disability, this time I have an 18 month old and I have recently started a new job. How do you manage?

Title: Re: WELCOME!
Post by PerryGR on Sep 20^th, 2004, 6:33am

Hello Kellie,

I'm glad you found the board- welcome- sorry you have to be here though.

There is some great info here- read all you can and try to be proactive about your condition- but there's also tons of support. Talking to people that understand your pain can offer some great relief and it's also a way some of us manage. It is also of great importance that you find a doctor that knows how to treat clusters and build with his help a defense line against these things.

I would suggest that you start a new thread where you could share some more information about yourself ( like how long you've been in this cycle, what medication have you tried, if something had worked in the past etc) so that you'll get more responses from more experienced sufferers than myself.

Again welcome to the board,
Perry.

Title: Re: WELCOME!
Post by Bodge on Sep 26^th, 2004, 1:39pm

Hi everyone,
I was happy to read your comments on this post, Im new as of today 9/26,0n my first post I was attacked verbally by member "Johnny" and then he was defended by others for his rude and bigot comments that came from no where other than his own sexual insecurities I have to assume
since it was my very first post I felt this is def not the site for me... I was under the impression it is was a friendly site and I found myself in defense on the first sentence I posted..
Sad that a few can change the impression for many others..
an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior....

Title: Re: WELCOME!
Post by Jonny on Sep 27^th, 2004, 6:19pm

on 09/26/04 at 13:39:14, Bodge wrote:

an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior....

If you look at your thread you will see there is an apology, savior in it cause it dont happen often my friend ;;D

.....................................jonny

Title: Re: WELCOME!
Post by nancyt on Oct 5^th, 2004, 9:02pm

im sorry i guess i posted my message in the wrong place but this site seems like it will be helpfull right now im just very unsure of everything and i am scared its a horrible think to watch your loved one go thru

Title: Re: WELCOME!
Post by rvn1967 on Oct 6^th, 2004, 1:42pm

Getting to know the site and marvel at all the support and information. It's truly amazing and of considerable help. Have a friend who lost his left arm in VN and has suffered with what sounds like CH for the last 32years.
Never really understood until now. I see my MD again
this Friday morning loaded with knowledge gleened from this site. Thank you, Thank you, Thank you.

Phil

Title: Re: WELCOME!
Post by Sisyphus on Nov 16^th, 2004, 11:19pm

Seems I have found the site on the same day as a load of others. I have been up for hours (dreading going to sleep) and have just been rummaging about the site.
It is fantastic but really wierd to think that I am so happy to found loads of people who have the same pain experience as I have. It does feel like Aussie Brian said to me, welcome home, but I am seriously concerned about my work as I may end up spending too much time on this site!!!! Love to you all. jack.

Title: Re: WELCOME!
Post by writer on Nov 20^th, 2004, 8:24pm

TO "WELCOME," the woman who is trying to help her husband and asked about Sansert.

I took it for a while, and indeed it aborted the cluster attacks. However, for me the side effects were too much to keep on with it. However, of course, everyone is different, and your husband may tolerate it well.

He should know, however, that periodic blood work is necessary when taking Sansert, because it can cause fibrosis of various organs. The drug is a (very) close relative of LSD.

Sorry you and he have to be here, but welcome anyway, and many wishes for the pain to end.

Writer.

Title: Re: WELCOME!
Post by jdiggity on Nov 20^th, 2004, 8:57pm

I'm new to message boards, so I hope I'm doing this correctly.

I'm just glad to find a site where people understand what I've been going through for way too many years!

Title: Re: WELCOME!
Post by tbradley3663 on Dec 6^th, 2004, 7:18pm

Hello...Finally! After reading some of these letters from the home page, I have have found home. My name is Toby. I'm from Hickory, NC. I'm going on my 5th week of attacks. I'm exhausted.

Title: Re: WELCOME!
Post by nani on Dec 6^th, 2004, 11:11pm

Welcome Toby- sorry you're here. Look around the site and post questions...there's lots of folks to support you here. Pain free wishes...

Title: Re: WELCOME!
Post by rob on Dec 8^th, 2004, 12:10am

I've been a member since 2002.never relied much on this forum,even though I watch it intensly.But now I need help.I've been released from my position at my job for filing disality due to ch.I've been offered to stay with my company with a 2/3rd cut in pay.They didn't outright say it was because of my ch's but due to "lost time & lack of performance"Come on lets get real.I need legal advice.Is there any lawyers that you know of who can help me? I'm still under disability.But financiley I can't hang on much longer.Any help would be appreciated.
Thanks.
I wish I could find spell check on this message board.
Happy Holidays

Title: Re: WELCOME!
Post by BangYourHead on Dec 24^th, 2004, 9:53am

Hi All,

I'm new to the site , and I'm in.

As for the time of year. yes I saw my second nuero on the winter solstace. Based on my experience and readings. there is a problem with my clock....The good news is eventualy it will get reset.I would be interested in seeing the list of non cronics as a % by latitude...

Anyway..Hi All.

Title: Re: WELCOME!
Post by nani on Dec 24^th, 2004, 10:01am

Welcome, bang your head, and I'm sorry you're here. I'm glad you found us. We're a nutty bunch that really understands your pain. :)

Title: Re: WELCOME!
Post by BobG on Dec 24^th, 2004, 10:18am

Hey rob,
Maybe you can get some help from one of these sites and archives.

http://www.ssa.gov/pubs/10029.html#Part%202
SS disability benefits site.

http://clusterheadaches.com./wwwboard/messages/80406.html
Carl D (2-2-01, advice on disability benefits

http://www.migraines.org/disability/disabcdl.htm
Trip 6-30-01 document on current disability laws (from Migraine Awarness Network)

http://66.154.42.184/wwwboard/messages2/109659.html
Bob Johnson 9-4-01 ADA: job interviews and chronic illness. Your rights....

http://www.clusterheadaches.com/wwwboard/messages2/102349.html
discussion string about disability and using a lawyer

on 12/08/04 at 00:10:06, rob wrote:

I wish I could find spell check on this message board.
Happy Holidays

LOL. We all do, rob. (Wish we could find Spell Check, not that we wish you could find it)

Title: Re: WELCOME!
Post by Cece on Dec 27^th, 2004, 3:27am

Hey, WOW...glad to have found this site so far. I am a female CH sufferer...have been for about 25yrs. I had been CH free for 3 years until just a few weeks ago....just on time for christmas!!! I thought I was over this hell. Has anyone else had long absences only for the monster to return? I am sooo depressed! Is there a chat group on this site?? I really need someone to chat with..........

thanks!!

Cece

Title: Re: WELCOME!
Post by nani on Dec 27^th, 2004, 9:15am

Welcome Cece, sorry you're here. When I was episodic (oh how I miss those days) I often had very long remissions. It's terrible when you think you are finally rid of it and it returns. Look at the links to your left. On the headache links there is a mention of Elaine's support group for all types of headaches. Go there in the evening (usually after 7pm Eastern time or later) and there are usually a few clusterheads there. Use the message boards here to read and get info and also to ask questions. This is an awesome bunch of folks who are sincerely interested in helping other clusterheads. Pain free wishes to you.

Title: Re: WELCOME!
Post by Much2Much on Dec 30^th, 2004, 2:27pm

Hi Everyone,

My name is Steve and my wife is Doreen. My wife is the one with the curse of head pain.

My wife has had head pain since August this year. Originally the pain started on her right side (she describes it as pain deep within her ear). At first it came in the afternoon and got to lets say a 5. We went to an oral surgeon specializing in head pain. He gave her shots of Lidocain all the way in the back of her mouth which gave her temporary relief for a few hours.
It increased in its intensity and I admitted her to the hospital. None of the pain meds that they gave her worked, morphine. The only thing that at that time brought any relief was a shot by a dental resident in the mouth. They released her after three days and after taking MRI's catscans, X-Rays etc. of the head and brain. Everything showed negative.
A week later we were back at the hospital. Same result and this is now the 1st week in October and NO ONE has diagnosed what this damn pain is. We went to ENT's, a Pain Center who prescribed fentanyl pops and duragesic patches etc. and neurologists one of which recommended a nurosurgeon in NY who specializes in head pain and is supposidly well known (Lawrence C. Newman M.D. ,St. Luke's-Roosevelt Hospital. We saw him on 12/20/04 and within 15 to 30 minutes he said she had Cluster Headache. He prescribed a medicine Indocin which ripped up her stomach and made the pain worse and she vomitted for 36 hours ending up with Gastritis and in the hospital that night. We called back and he then said she had to take it and to take sucralfate to keep it down. That worked to keep it down but the pain within 35 mins got worse. The latest script was for Verapamil -120mg. Well this was taken this past Tuesday and 4 hrs later her head pain exploded to a level which left her screaming.
If this is Cluster it has to be a mutant form of it or something else or both. I think from what I have read the next form of treatment should be the Oxygen. I did get a prescrition for Imitrex spay but I'm hearing that it should be monitored while taking it....I don't know anymore. Help us with any thoughts you may have if you can guys!!!
Thanks in advance for any help you can give.

Steve (Sorry to be so longwinded)

Title: Re: WELCOME!
Post by nani on Dec 30^th, 2004, 2:39pm

Welcome, Steve and so sorry you had to find us. The Indocin will not likely help CH, but it can be used to rule out Chronic Paroxysmal Hemicrania, which presents like CH. Oxygen is probably her best bet. The verapamil dose is kind of low, talk to her doc about increasing it and maybe adding lithium. Verap and lithium together have helped many of us. They both take awhile to get to the proper levels in our systems. If your wife does not have heart problems, I would get the Imitrex filled and she can use it to abort the really bad headaches while she waits for the verap combo to kick in. She needs to take it the moment she feels a bad one coming on. I find a cold pack helps me, too. Oxygen has to be 100% and breathed through a non-rebreather mask. Call her dr and ask for a prescription for it. Look around the boards here and look at the OUCH site (link at left) Feel free to ask us any other questions you may have. Have her come here too. This is an awesome bunch who will offer her much support. Good luck and pain free wishes to her.

Title: Re: WELCOME!
Post by mykemyke on Dec 30^th, 2004, 8:29pm

Hello everyone this is my first time on this site and I am and happy that i found people that crawl on the floor and yell Like i do (a way to go!) On a more serious note I just came back from seeing my neurologist and he prescribed predisone, have that worked for anyone, i know i haven't had a bad one since i took them, maybe they do work, I not going to jump up and down yet, then i might be dissappointed. I need some feed back and for each one of you that are a clustie- God got your back. Keep prayer. write me someone!

Myke Myke -Philadelphia

Title: Re: WELCOME!
Post by Kris_in_SJ on Dec 30^th, 2004, 8:39pm

Hi Myke,

Welcome, but so sorry you had to find us.

Prednisone can be a true miracle-worker, especially for those of us who are episodic sufferers. Generally though, it only knocks out the HA's for a short while. It's usually prescribed along with a preventative med like Verapamil (in fairly high doses). By the time you're weaning off the Prednisone, the prevent is kicking in - that's the theory anyway. It works for me, but I still have the fairly regular head-banger that requires Imitrex injections (a true miracle).

Take a look at this link. It was a God send to me and my doc. Best wishes and keep posting!

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Kris

Title: Re: WELCOME!
Post by kitlulu on Jan 5^th, 2005, 10:33pm

Hi everybody!

Been checking out the site since last week - learned so much about my 'problem' - signed the guestbook- was surprised and moved when one of you wrote to me.
Today, I finally cruised this message board and learned so much about you!!
Although I don't feel very social right now - 'strong threatening shadows' when I thought it was over - it's a relief to know that you great people are here!
I sure hope I can make somebody else feel this way someday.

Kitlulu (Kathy)

Title: Re: WELCOME!
Post by nani on Jan 5^th, 2005, 11:08pm

Welcome, Kathy. I'm glad you found us, sorry you had to. Stick around, learn a lot, ask questions...join in when you feel up to it...pain free wishes to you. nani

Title: Re: WELCOME!
Post by nuknfutts on Jan 23^rd, 2005, 6:40pm

Hi, i'm 39 and female from WV and new here, my CH's just started this past week. ( I think they are CH's) At first, it really freaked me out, after the 3rd CH hit, I thought i was having an aneurysm, after extensive research, i'm hoping it is CH. I've had five espisodes in the last two days, and dreading the next one. I tried to explain to my husband what the pain was like, but i couldn't put it into words. Just that it hits out of nowhere. My "episodes" only last 10 to 25 minutes, always over my right eye. I'm nausous and I can actually feel it throbbing if i place my hand over the area. Does this sound like CH?

Title: Re: WELCOME!
Post by Grandma_Sweet_Boy on Jan 23^rd, 2005, 8:29pm

Hi there - sorry you have to be here but you will at least get some helpful information. Check out all the links to the left, please be sure to do the cluster quiz - that will help you to determine whether this is CH or not. There's a lot of information there - print out what you think is pertinent and perhaps go over it with your physician.

I always hesitate to tell people what I think they have - I'd rather know you've sought medical attention.

Hope your find some answers soon.

Carol

Title: Re: WELCOME!
Post by Night_Zombie on Jan 27^th, 2005, 10:49am

;) hi, havent a clue what Im doing never been on anything like this before. Its now time I stop crying and get to know other people who are putting up with same things, and have a laugh along the way.

Title: Re: WELCOME!
Post by nani on Jan 27^th, 2005, 10:57am

Welcome, NZ...and sorry you had to find us. Now that you've found us, look around the site and the boards here. You'll find lots of info and understanding. Pain free wishes to you...nani

Title: Re: WELCOME!
Post by Frank_W on Feb 4^th, 2005, 2:45pm

Just wanted to give this message a good healthy BUMP and welcome the newcomers.

Use the links, print out the various pieces of information, educate your physician if you have to, and most of all, know that you don't have to suffer this agony alone anymore.

Welcome. Although I'm sorry that ANY of us have reason to be here, I'm glad that you've found the single most informative place in the world on this hell known as cluster headaches.

My best to you, and wishes for days full of life and laughter, and nights of serene, peaceful rest.

-Frank

Title: Re: WELCOME!
Post by Kalach on Feb 17^th, 2005, 8:53am

I am new to the board but a long time CH sufferer. I have not had a bad cycle for at least 4 years, but they seem to be back. Have there been any new medications on the market lately? I am using imitrex spray 5mg because thats what we have for my wife' migraines. I used to take the cafrigot supps as a profalaxis.
Kalach

Title: Re: WELCOME!
Post by nani on Feb 17^th, 2005, 8:58am

Hi Kalach...welcome. You have found the place with a lot of info on meds and treatments. Look around the boards here and gather as much info as you can. Oxygen (see oxygen info link at left) is a very effective abortive treatment for many of us. There are preventative meds we use as well. Print out any info you find helpful and take it to your next dr visit. Pain free wishes, nani

Title: Re: WELCOME!
Post by Biggiestyle on Feb 17^th, 2005, 6:34pm

Some Msg boards have a way of "pinning" the thread. This way it always stays on the top. This seems like a thread that should always be up there.

Garrett

Title: Re: WELCOME!
Post by Kalach on Feb 19^th, 2005, 12:44pm

Has anyone tried Botox injections for relief of CH. My wife had relief from Migraines.
Kalach

Title: Re: WELCOME!
Post by nani on Feb 19^th, 2005, 2:23pm

There is a thread on this subject on the Medications board. Along with a lot of other treatment info. PF wishes, nani

Title: Re: WELCOME!
Post by cairnterrier on Feb 21^st, 2005, 1:24am

Looks like last post was ten days ago....Well, I'm new here, have been in remission for almost five years and last week the shadows began showing up. I've had cluster since the age of 20 and am now 57. In the mid-seventies I wanted to set up a support group in New York but none of the neurologists I talked with would ever identify to me, or share the identity of, or even act as a middleman for, any of their other patients who had cluster, in an effort to get us communicating. There was no way to connect with anyone who had this condition. I am glad to see that the internet and some perservering individuals have finally made this a reality, it has been needed for so long. The misunderstanding from non-sufferers that goes with cluster is perhaps second only to the mindless pain generation in its demoralizing effect upon the sufferer. I don't take any medications. I use ice packs and pacing during the strongest attacks. I used to include coffee but I stopped caffeine years ago for other reasons. I know this regimen sounds impossible but it has worked for me for many years in shortening the duration of each attack. Once had a Johns Hopkins man tell me the headaches wouldnt kill me but the medications would. I've seen literally dozens of neurologists over the years but I could not overcome my revulsion to drugs to try any of the therapies they offered. However this past week I have been saddened to see that most medical discussions on the internet are still citing the same medications which were being used ten and fifteen years ago. There really is a lack of awareness and funding regarding this terrible affliction. Guess it just isn't widespread enough or glamorous enough or politically useful enough for big bucks to get behind it. I still get the "deal with it" spiel from my wife of 20 years, who herself is a diabetic. Ironically, I have attended many seminars on her illness so that I would be more in tune with her needs and what was going on with her illness, and have noted how much improved she is mentally about it because she gets so much support and acknowledgment from her doctor and all who are around her. Diabetes gets so much publicity, imagine what that kind of clout would do for cluster? I think the word among specialists is that there will be a cure for diabetes in a few years. Fantastic what sustained effort and funding can do. Not trying to feel sorry for myself---but in my fifty-seven years I have never met a single soul, male or female, who suffered from cluster. So forgive me if I am initially skeptical about this website.... Hope to hear from some of you soon....

Title: Re: WELCOME!
Post by LeLimey on Feb 21^st, 2005, 4:33am

Hello cairn terrier!
Nice to meet you but I'm sorry you have to be here.
Have you considered trying O2? Thats not a drug but for me it is literally a life saver. I couldn't believe the difference it made for me.
You are right.. there is little or no info and most doctors seem to have never even heard of CH.. thats why this website IS such a help. I'm no longer alone.. I have others who understand EXACTLY what is going on and believe me.. it makes an incredible difference!
There are meet and greets organised through out the year (see the meetings board a bit further down the main "menu"!) and there is a big convention in Dallas in July. Hopefully its not going to be too long until you meet your first clusterhead!
Let us know how you are getting on.. Have a look at the Oxygen Info on the left.. you never know it could just be your "silver bullet" :)

And you're not alone anymore
Helen

Title: Re: WELCOME!
Post by cairnterrier on Feb 22^nd, 2005, 12:06am

Thank you, Helen, for your welcome. I hope it's okay to address you by name here. It does make a difference to know you can talk to others who know firsthand what we go through. For many years I kept daily diaries and full descriptions of every attack, in the hopes of determining some pattern at work. While there were some patterns, they didn't add up to much.

Actually I did try 02 for awhile. While I was still living in New York. Probably not for long enough though, because I did not notice any difference in the attacks before vs. after. I am glad you found something that helps you. And I too am sorry to have to meet anyone under these kinds of circumstances.

It's interesting to note that New York and the state where I now reside (and have for 20 years) both have the highest number of CH members. Now what does that mean??

Title: Re: WELCOME!
Post by LeLimey on Feb 22^nd, 2005, 4:12am

It means birds of a feather flock together! [smiley=laugh.gif]

When you tried the O2 did you try it at around 12-15 LPM and use a non rebreather mask? I only ask because if you don't have the right set up its just not going to be as effective. When I first started with it I took a bit of getting used to it and then BINGO! perfect!

Oh and its fine to call me Helen.. call me anything you like except for shortarse.. I'm not too keen on that one! [smiley=laugh.gif]

Title: Re: WELCOME!
Post by kralicke on Feb 28^th, 2005, 10:24pm

i wish i could determine how to use this site. i picked you because you were under "wellcome". i have been jumping around the site and have picked up a few tips. i have been a clusterhead since around 1997. i have had four cycles of 4 to 6 weeks each, 2 to 6 clusters a day. i consider myself lucky to be able to go 2 to 3 years with pain free. i am also lucky that i get relief from oxygen. i suffered through the first cycle without getting a dx from several doctors. my optometrist saw the horner's syndrome and lead to the dx. i learned of oxygen on the internet. my aches last for one hour so it is difficult to determine if oral medication help. does this demon ever stop returning?!!

Title: Re: WELCOME!
Post by LeLimey on Mar 1^st, 2005, 4:47am

Hi Kralicke its nice to meet you although I'm sorry it is here.
I'm not going to say you are "lucky" to get short cycles or to have them well spaced.. pain is pain how ever and whenever you get it.
You have O2 which is good as thats my "drug" of choice, imitrex injections are fast working, usually about five-10 minutes but there is alot of thought that these prolong cycles. Have a look at the meds available. Have a look at the kudzu and psilcybin threads on the meds board, both have been of very great interest to me.
There is a great wealth of information here so grab what you need. Don't be afraid to ask further questions and let us know how you are getting on.
Wishing you success in finding what will work for you
PFDANS
Helen

Title: Re: WELCOME!
Post by Dancin with the Demon on Mar 3^rd, 2005, 5:33pm

so this is home. so be it!! i consider the rath of the Demon a curse,for myself!! a 15yr marraige GONE!! The ability to function without retribution from a Demon ,bent on getting me to live only in my house. GONE!! Who`s only sole purpose is to make sure that He arrises everytime i find a new Female friend, only to chase her off. And who can blame her/them, No Women will knowingly allow herself to be the rearguard or a bystander as She watches Me, Hop and Pop with the Demon himself.
Believe it or not I`m not angry, i just see it as a form of Anti-Terrorism, to take the Beast ON,HEAD ON. For he is the Terrorist and i am the Operator, Never Quitting,Never letting him win,ever again.
I have my Gear, my Daily pills, my OxY, and my Thermo-Nuclear Device (Imitrix-injectable) and i have 8yrs Combat Experience.
My Deadliest Weapon , MY MIND and WILL !!
But most importently, I WILL NOT FAIL !!
I will bring Democracy back to my head, and The
Terrorist, WILL FALL !!

This is the needed attitude of the suffer. I spent 3yrs in my house never leaveing, NEVER AGAIN !! Yes things are rough most of the time,I`m diagnost as a Chronic Suffer, and by the lack of releif i`ve gott`n , i`d say the Nurologist got that one, Right ON.
But this is my attitude ,as taught to me by a Special Friend. I`ve Won the Battles and I will WIN the WAR !!

And i sincerely Hope anyone that reads this, See`s the Humor i`m using, but also GETS THE MESSAGE.

DO NOT QUIT !! It is a Terrorist, and YOU will Prevail !

Title: Re: WELCOME!
Post by xmas1225us on Mar 5^th, 2005, 4:00pm

Hello all: I just joined this web site and now I feel a little better knowing that i am not the only person living with this, what do you guys call it." The Beast", well its back again and being a stay at homedad of two young girls 2 yrs and 9 mths, the lack of sleep is killing me, i hope i can bring this topic up to my Dr. He informend i have nasel polyps and i thought that was causing all this pain, but after reading all this info, i belive i fall in this catagory. I am happy this site is here and will be a regular visitor here. stya safe all, bye. [smiley=laugh.gif]

Title: Re: WELCOME!
Post by Iggy on Mar 10^th, 2005, 5:19pm

good day everyone I hope. I have just found this wonderful site. See I am a sufferer also. I am episodic and currently waiting for my little friend to arrive. It`s been a little over a year now. I know I should be grateful for this time off but I also know what is coming.I am truly grateful for finding you all here. I like to think I will never get them again but I know the truth,the beast will return. So to all of us suffering now I say a prayer and to all those waiting like me try not to dwell to much on the beast for he will return. Try to just live ONE DAY AT A TIME.
Iggy

Title: Re: WELCOME!
Post by LeLimey on Mar 10^th, 2005, 5:55pm

Hello Iggy, nice to meet you, have a good look around, I'm usre you will find tons of stuff that will interest you and be of use to you!
What abortives and preventatives are you using (or rather do you use when you are in cycle?) If you haven't found them of much use so far then keep reading you WILL find something that will help you!
Tell us a bit more about yourself and ask any questions you need to
Welcome!
Helen

Title: Re: WELCOME!
Post by ruff on Mar 12^th, 2005, 7:29am

I feel I should say hi to the welcome wagon.
I asked a few questions about Prednisone and got lots of answers and advise, the best I found is:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.

I would like to thank E-Double and Gator for their links and comments, also the great DJ for creating this site.

I have a Dr. appointment this Monday and because of this site I'll be going with loads of information.

If your new to this site, in my opinion this is the best place to be if you suffer from CH, better than the Dr. office.

Great to be ruff'n it out with all of you. :)

Title: Re: WELCOME!
Post by curtp336 on Mar 14^th, 2005, 8:18pm

Hello everyone! My name is Curt. I am very new to this site and so far I like the info I read and know that I am not alone out there. I've been suffering from CH since 1982 when I was stationed in Panama. I was diognosed with CH in 1996 and through out that time I thought it was just me with severe sinus problems. I know the truth and it still hurts. I have tried different treatments and the best for me are imitrex injections. The headaches came back about a month ago with a vengence. It had been three years since my last demons and I felt very good about it. But now they are back. This site helps with my attitude about them. I feel it "Always" on my left side of my head. It normally happens at night especially when I am asleep, but lately it's been happenning during the day and affecting my job. The one word I can describe about the whole ordeal is fraustrated. For all the people who feel my pain, keep your chin up! :D

Title: Re: WELCOME!
Post by adonasetb on Mar 15^th, 2005, 3:19pm

I'm another newbie to the group.
I was headache free all my life - until my 39th birthday and that night I woke up with a pain that felt like someone had driven a red-hot spike into my left temple - I'm now 61 and that spike has gone from red-hot to white-hot and the longest I've gone without suffering from a cluster has been 1 week. I should say the longest I had ever gone before was 1 week - I've now gone almost 2 weeks without a cluster (a new record for me!!!!!) I've been scanned, doplered, wired with monitors, injected, probed, tried every medication in the books, monitored my diet, even went for the golden-needles, and my check-book emptied by the medical profession all with negative results.

Most of the clusters hit during the night but that's not always the rule - they can hit at any time and without warning. There ain't nothing like being in rush hour traffic and having the cluster suddenly hit - find the shoulder of the road, squeeze your head and wait.

Now for the real reason I'm posting - not to whine or repeat the symptoms that everyone is experiencing but to offer up what MIGHT be a preventative - This is the longest i've gone in 22 years without a cluster and so I'm hopeful that I've found something that just might work - and that is folic acid. A friend recommended it and I got a daily multi-vitamin that contains folic acid - I know, it sounds too simple - but so far, so good.

To everyone, I'd like to say thanks for being here - support and knowing we're not alone is wonderful.

Adonaset

Title: Re: WELCOME!
Post by pubgirl on Mar 15^th, 2005, 6:00pm

Adonaset

I'm glad you found us, and glad you have found something that works for you. I don't think it is any miraculous silver bullet though, I took folic acid before trying to get pregnant and it had no effect on my headaches at all (had a lovely healthy baby though! ;;D)

Wendy

Title: Re: WELCOME!
Post by adonasetb on Mar 16^th, 2005, 9:23pm

another day without the cluster - so something is working.

no clusters and no pregancy so far lol - thank you for the welcome.

adonaset

Title: Re: WELCOME!
Post by orso on Mar 27^th, 2005, 4:21pm

I'm new to the board been dealing with the beast since 1988 only thing that will stop the pain is narcotics. Of course they raise the slobber and drool factor also. I've tried numerous scripts and O2 therapy nothing seems to work. I'm fairly accomplished in the martial arts and the mind control/relaxation therapy seems to help some but it take total concentration and the headaches destroy that. I had a series of MRI's EEG's and CT scans in 1988' that ruled out everything but Clusters and that's when the Neuroguy diagnosed them but lately the really severe ones have been accompanied by short periods of, not really unconsciousness, but just not totally with it, til the headache subsides and I'm back to normal and able to regain my feet and surroundings. My wife has stolen and hidden my drivers license and I'm scheduled for another round of the same tests again next week I guess it's okay to be scared. They hurt worse than being shot, and least you know somebody's trying to do that and you can shoot back.

Title: Re: WELCOME!
Post by nani on Mar 28^th, 2005, 9:04am

Sorry you're having such a hard time orso. I'm surprised that narcotics stop the pain for you. Have you been diagnosed with CH? If so and you can't find relief with CH drugs, try this...

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Read through all the threads even though some are long. Many of us have found kudzu helpful. Pay special attention to possible drug interactions.
Good luck and pain free wishes to you, nani

Title: Hello All
Post by Judge_Smails on Mar 28^th, 2005, 11:21am

Just found the site and what a relief it is. I'm 34 and if you can believe it I've been getting CH's since I was 4 years old. I just started another cycle and found out that they no longer make the medication that I had been taking for the past 10 years (Sansert). I'm getting by with Imitrex and have a Dr appointment tomorrow to try to find a new preventative medication. Just glad to know that there are other people out there that know what I'm going through.

Title: Re: WELCOME!
Post by LeLimey on Mar 28^th, 2005, 11:28am

Hello judgie!
If you get time before your dr's appt, read read read! There is so much stuff here you will be able to discuss with him to get whats right for you. In particular look at the O2 info and also the kudzu threads.
Let us know how you get on okay?!
Helen

Title: Re: Hello All
Post by Sean_C on Mar 28^th, 2005, 11:55am

on 03/28/05 at 11:21:29, Judge_Smails wrote:

I had luck with Sancert too.

Sean.........................

Title: Re: WELCOME!
Post by Judge_Smails on Mar 28^th, 2005, 2:32pm

Thanks, I'm going to run to the health store after work to pick up some kudzu - even if it helps a little bit that's better than nothing!

Title: Re: WELCOME!
Post by Redd715 on Mar 28^th, 2005, 8:46pm

Ummmm

There is another avenue you may want to read up on as well

www.clusterbusters.com

It's always up to the person, but the anicdotal evidence of effectiveness is at least worth the read.

Harvard Medical is very interested in this information as well.

Title: Re: WELCOME!
Post by Judge_Smails on Mar 29^th, 2005, 2:42pm

Well, picked up some kudzu yesterday so we'll see if that helps. Also had a Dr's appointment today and got a perscription for Prednisone and O2 so with any luck that will help me ride out this cycle. Thanks for all of the info!

Title: Re: WELCOME!
Post by LeLimey on Mar 29^th, 2005, 2:48pm

Youre welcome, There is a kudzu survey going on.. will you enter your results after your first week please? Have you got anything to take AFTER the pred? That is usually used as a taper while you are building up on something else such as verapamil for instance. On its own the danger is the CH will come right back when you taper off. O2 is fantastic. Love it to bits. Have you got the non rebreather mask to go with it? Thats essential or it won't work for you. Let us know how you get on again please!
Regards
Helen

Title: Re: WELCOME!
Post by Judge_Smails on Mar 29^th, 2005, 3:43pm

I guess I'm lucky, my cycle only lasts for 4-5 weeks (3-4 CH per day), then disappears for 1.5/2 years. So I'm a week into the cycle and the Dr said the Pred was 3 weeks worth, so if all goes well I should just about make it to the end - that's if the Pred works.

It's so hard going to a new med, it's the whole trial and error thing, and in the meantime you're suffering. I've been trying Topamax for the past 4 days and it hasn't been helping so hopefully the Pred will do the trick.

I'll be more than happy to add to the kudzu survey, although I'm not sure if the kudzu or the Pred will be effecting my symptoms.

Title: Re: WELCOME!
Post by vig on Mar 29^th, 2005, 8:08pm

and there ARE pharmacists that will still make Sansert, but you have to look hard.

Title: Re: WELCOME!
Post by keith on Apr 5^th, 2005, 3:53pm

Well, just registered, so hello friends and fellow suffers. It is good to be talking (typing) even if noone is hearing. Just to know there are so many out there who can understand. I guess there is nothing like CH to bring home the truth that misery loves company. Here is my short history:

Started having CH about 12 years ago. I just sweated it out and did not really get properlly diagnosed for about 4 years. I finally got referred to a neruologist who positively identified me. I was relieved and then shocked to hear him say, "we know how to label it - we know the symptoms, but we don't really know what causes it, what it is, or how to cure it." I did not think there was such a thing in the modern medical world except rate diseases. It is still strange to think they understand so little about the cause of CH and so little about the cure, though I have learned much from this site about possible treatments. I am (please, God) just coming out of a cycle I think and I owe some peace to this site. I read and tried the www one week into my cycle and it seems to have worked (I have a bottle of water right beside me now to make sure I am OK). It was difficult being by the bathroom all the time for two days, but a small price to pay compared to meeting the Demon.

Question: anyone know how long I should keep drinking the water? I still have a few shadows, but seem to be mostly free. I am, of course, afraid to stop and have CH come back suddenly.

Question: I am struck reading the site about the wide use of 02 as an abortive. I had not heard of that, nor had any doctors mentioned it to me. What is the easiest way to get a set-up. I would certainly like to have one handy when the Demon comes again.

Guess I will stop now. This is probably a lot for anyone to read. I am curious about how this group investigates potential causes or atributes that we may have in common that could lead to more understanding. For example, for many years I thought that the CH might be related to a head injury I sustained about 1 year before they began. I noticed that in the medical description of the site this connection has been explored but was not conclusive. How many of us have had such injuries?

Title: Re: WELCOME!
Post by nani on Apr 5^th, 2005, 7:53pm

Welcome keith and I'm sorry you're here. You'll find oxygen info over there on the left. Print it and take it to your doctor. I don't know about WWW, never tried it. Look around the site here and gather info about other treatments also. There is one "study" that some of us are involved in that is proving to be rather promising. Here is a link to some threads about it. Read them all... there's a lot of info and it sometimes gets silly, but it's worth reading. Good luck and pain free wishes to you,
nani
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Title: Re: WELCOME!
Post by keith on Apr 8^th, 2005, 4:57pm

Thanks for the welcome Nani. I thought I was coming out of the cycle, but just had a KIP 9+ yesterday. Now I have started the Predisone and gotten some Imitrex injection medicine to abort if (when) the beast comes tonight. Still hoping I am over the worse....

Title: Re: WELCOME!
Post by samsara on Apr 9^th, 2005, 1:12pm

Hello everyone...

I was diagnosed with clusters over a year ago after suffering for years. I won't go into the long story of getting to a diagnosis, but after I was diagnosed I did a ton of research and found this forum, joined but never posted. I was perscribed prednisone to break the cycle I was in at the time I was diagnosed, and verapimil to keep the beast away, but dropped it all immediately when I found http://www.clusterbusters.com/ as I am a huge advocate of treating the body with natures medicines. And I have a funny little story about that, but I will share it another time.

I always found my headaches to be annoying, and sometimes even distressing but I have never had a debilitating one. I always wondered if I was just lucky, had a high pain tolerance or if so many others were just whiners. (no offense intended)

Well, yesterday I had the mother of all clusters and I can say I have a new found respect for all of you.

Historically my clusters have followed the typical pattern... one around noon, and then if that one is bad I will start having them at about 8am and 8pm like clockwork. I don't know what happened yesterday, but I woke up with a shadow and had a (for me) full blown cluster by ten am... very annoying and distracting. Well, it never started abating, and by noon I was in a whole new territory. At one I realized this was far worse than my previous most painful experience of childbirth. By 1:30 I was beyond myself, and my husband came to the rescue with .3g.... my pain dropped from a 9-10 to a 6-7 by 2:40, and then by 3:30 it was completely gone. I cried I was so relieved, and I could not believe how simply wonderful it felt to feel nothing at all.

Anyway, I have never posted here but I felt that after that experience I needed to share with you all my respect, understanding and comraderie. I am almost moved to tears now just thinking about yesterday, and I am counting my blessings that the earth has given those of us who choose such a wonderful treatment option.

To whoever started this forum... thank you, thank you, thank you!!

Title: Re: WELCOME!
Post by nani on Apr 9^th, 2005, 2:49pm

Hi samsara (my granddaughter's name's are Samantha and Sara :) )
DJ started this site and we are all very grateful to him for that. I'm sorry you're having a bad time. My CH has been kind of erratic like yours. Also a long story.
You have found a place with tons of info and support. Take advantage of it. :) Pain free wishes, nani

Title: Re: WELCOME!
Post by samsara on Apr 9^th, 2005, 5:28pm

Thank you nani..

one thing I have thought of today... is there a place where people post their histories/stories? I would be interested to read about others with this disorder.

Title: Re: WELCOME!
Post by nani on Apr 9^th, 2005, 5:42pm

You know, that sounds like a great thread to start on the General board. There is the getting to know you board, but not everyone posts there first. There really isn't anywhere else (except some of the guest book posts) specifically for our stories. Why don't you start one? :)

Title: Re: WELCOME!
Post by samsara on Apr 9^th, 2005, 7:24pm

I think I will do just that.. altho it may have to wait until tomorrow since I will be babysitting my three nephews in about 20 minutes... add that to my two and a neighbor friend hanging out and I have my hands full!

Title: Re: WELCOME!
Post by steviejp on Apr 19^th, 2005, 6:17pm

Thanks for a great site !

Have suffered from what I have discovered (thanks to this site) to be the cluster headaches for around 15 years. It was so much of a relief to find what I had been suffering with.

Have been treated for various things, including sinus problems for years. As you can guess, with no luck ...

Soon as I found this site I printed out the the basic symtoms, made an appointment with Doc's, and presented him with the evidence, and he prescribed imigran injections, which work great.

Many thanks to all who make this site such a great reference for myself and fellow sufferers ...

I just wondered if if these headaches can be linked to any neck or upper spinal injury, as I have suffered more and more attacks since having such an injury, and the treatment of this injury mainly after physio on the affected area ?

Again many thanks, and keep up the good work !!!

Title: Re: WELCOME!
Post by da_massa on Apr 25^th, 2005, 5:09pm

da_massa out of Austin, TX-

yep, what they say is true, everything down here is bigger and I guess the headaches are no exception. I've "dealt" with this horror and have been successful until recently... seems like that's a story a lot of people are familiar with. It almost seems like the headaches are changing on me. At first they were the typical 90 minute helll on earth, but now the residual pain is lasting for hours and hours after the intense part. I thought I had a grip on these, or at least as much as one can, but it seems to slowly be taking over my life. I'm actually considering quitting my job as it is physical in nature and these headaches just leave me worthless. Has anybody experienced prolonged throbbing pain after the attacks? What can be done for them? I've tried valium and it doesn't seem to do anything. Is it possible to suffer from both cluster and regular migraines at once?

I wish this could be more positive being my first post but its been tough just hanging in here as of late.

Title: Re: WELCOME!
Post by Katya_moonchild on May 4^th, 2005, 6:34pm

Hello, everyone! My dad asked me to look at this site because he's been having these headaches for about a year now. He says that everything that is talked about here fits him to a T. I just wanted to say Thanks for all the great info and I hope he can get some better help now that he has more of an idea what this is. Before he started getting these headaches a year ago, he had rarely, if ever, even had a little stress headache. I have dealt with Migraines since I was about 16 and my youngest son gets them and can't go to school sometimes. My sister gets them too, but Dad's are the worst. He has the highest frequency and by far the worst pain. He is a double above the knee amputee as well, so walking and such isn't really an option for him, but I have gone over there and watched him pull himself from his bed to his chair and back and moaning and crying and shoving his palm into his eye. It's horrible and I really hope that by using the information he has found on this site and showing it to his doctor he can find some relief.

*huggles*

Kikat

Title: Re: WELCOME!
Post by BobG on May 7^th, 2005, 9:24am

Hello Katya_moonchild.....interesting name.

*huggles* back to you for coming here for your father. Read all you can and print the best of it.

Can you get your father to come and introduce himself?

Title: Re: WELCOME!
Post by Larry on May 8^th, 2005, 5:59am

Hi Everyone,

I am in week 3 of an attack. Things are not going well at all. The doc prescribed verapamil and RELPAX. I have had these for 30 years and they never get easier to accept. I got the above meds at week 5 of a cycle last fall and it seemed to zap them away,,, but now,,,,the verapamil is not doing anything that I can tell and I had to quit taking the RELPAX because it was causing my moderate to severe chest pains. I am 47 yo and am HAPPY to have found you all. It is about 3:00 AM here in AZ and last nite was the first nite without the RELPAX. My headache has been bouncing between a 4 and a 6,,,, and at times going to 8 or 9. I am so very tired of this. I just don't have the fight in me anymore. I normally only have a bout in the fall and on the left side. This one is on the right side and the attacks are sudden and acute. Thanks for listening to me. The most succesful things I do are relaxation,,, oxygen and ice.
Larry

Title: Re: WELCOME!
Post by dis on May 10^th, 2005, 8:52pm

Hi, I am in the middle of a ch episode...have been pain free for five years. Just saw a neurologist who tried to persuade me that my headaches weren't cluster headaches. Help. I need a good doctor in the Boston area. Does anyone have a suggestion?

Title: Re: WELCOME!
Post by alchemy on May 11^th, 2005, 6:04am

I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ?

Title: Re: WELCOME!
Post by LeLimey on May 11^th, 2005, 9:14am

Hi Larry what dose of verap are you on? there are alot of us here who take it and we are all on different doses.. you might need to talk to your doc about increasing. Check out the other meds available and read up on the o2 info to discuss that with your doc too. Personally I can't recommend it enough, its a life saver.
Let us know how you are getting on though and please please please ask as many questions as you like. There is a wealth of info here so use it!
Take care
Helen

Title: Re: WELCOME!
Post by LeLimey on May 11^th, 2005, 9:16am

on 05/10/05 at 20:52:15, dis wrote:

Hi Dis, nice to meet you and I'm sorry you are in pain. Take the cluster quiz on the left. There ARE other conditions which are very similar to CH but thankfully have meds which work better so you never know.. you might be lucky. Some like CPH are rarer than CH and so tend to get misdiagnosed as CH as they are so similar. Its worth doing. Read, read and read and print off anything that will help. I know Don recommended a doc for you on your other thread.
The rule is though that you have to let us know how you are getting on okay?!
PFDANS
Helen

Title: Re: WELCOME!
Post by LeLimey on May 11^th, 2005, 9:21am

on 05/11/05 at 06:04:25, alchemy wrote:

Hi alchemy nice to meet you even if it IS here!
a surgeon? yikes.. that sounds a bit extreme but obviously I don't know your full history. Maybe you could tell us a bit more about yourself and the other meds, threapies you have tried? Have you tried o2? I personally swear by it. Have a look at all the other info here and print off whatever you feel would be helpful to discuss with your doc. Its important you do that cos of potential reactions etc obviously.
Just remember, we all know exactly how you feel, we've all felt that desperation and the relief I felt when I found this site.. well I'm sure you know ;)
Vent anytime, ask all the questions you want and be welcome,
I hope you get some PF time soon. I'm looking forward to hearing more from you
Regards
Helen

edited 'cos I can't spell and I talk too much!

Title: Re: WELCOME!
Post by markca on May 12^th, 2005, 6:13pm

Well, cool... There is comfort knowing there are others out there. Just joined. First post. Allow me to introduce myself. I'm 37 and have had CH for as long as I can remember. If I had to guess, it probably started late elementary/middle school. Only got properly diagnosed about 7 years ago. It's amazing how little doctors know about this.

I'm in the middle of a cluster. After reading through the site I realize I'm lucky. I will go about 18 months between clusters. It's been 2 years since the last one. They start off slow- CH- 5 days- CH- 4 days- CH-3 days, etc. Then every day. Then they taper off. Total time about 6-8 weeks with 3-4 weeks of bad, daily CH's. Used to be at the exact same time- I could set my watch by them. This time it's different. They're not at the same time and while I used to get no more than 1/day, I've had 2/day a few times.

Pain is unbearable, but short. Total time around 60 minutes. But completely debilitating. Always right side. I honestly don't know why there aren't more people who off themselves. I have truly been tempted during really bad CH's. I feel for you chronic sufferers out there.

Imitrex helps, but only within a very short window. If I don't take it as soon as I feel it coming on, I may as well not take it at all. Haven't tried injection (didn't know there was such a thing 'til I read about it here.) I have the 100mg tabs. Imitrex will take a 10 to an 8 or so. Will still get breakthrough 10's from time to time.

My secretary says, "yeah, I get migraines too." "No, it's not a migraine," I say. Nobody understands how bad the pain is. I read where CH's can be 100 times more painful than migraines. Yup, that's about right. You never read about a migraine sufferer trying to stick their thumb through their temple.

Wife is very supportive. I have a very high pain threshhold. I once played two innings of baseball with a broken tibia, then drove a stick-shift home. Sure, my leg hurt like hell, and I couldn't put weight on it, but I had no idea it was broken til I couldn't walk the next morning and finally went to the doctor.

Wife has seen that and then me writhing on the ground crying, moaning, praying, asking why me (I thought I was the only one who did that), trying to push my thumb through my temple thinking that will make it go away, seeing my face totally disfigured because the right eye is shut and droops and waters so profusely that I swear it has exploded. She then figures the pain must be pretty bad.

I can't touch alcohol while I'm going through this. Red wine is death. And I love red wine. I got a CH after a few sips of red wine one time that was so bad, just the thought of red wine when I know I could have a CH makes me sick. I can normally have a single, vodka drink after a CH, but abstaining this time because I'm having more than 1/day.

Long post, I know, but it's very cathartic to be able to write this knowing that there is a community that truly understands.

Thanks for listening.

Title: Re: WELCOME!
Post by LeLimey on May 12^th, 2005, 6:38pm

Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by. One thing we all learn fairly early on is that works for one of us will not work for another which makes CH a pretty tricky little blighter! Have a good look around and read up as much as you can. There are some fantastic treatments available and some alternative type treatments which alot of people have had alot of success with. I'd strongly recommend you discuss any options with your doctor. None of us are doctors and we don't know your medical history so you do need to discuss combinations with your doc.
I'd recommend O2 as an abortive highly. It works fantastically for me and I swear by it (and while taking it but thats another story!)
Get your wife to come and have a look around too. We have a fantastic section especially for supporters to get some support from and to learn more from but she IS welcome on every part of the board.. we all know how much we need our supporters and I'm very glad you have one.
Take care, let us know how you are getting on (that bit is obligatory ;) and remember, you aren't alone okay?!
Regards
Helen

Title: Re: WELCOME!
Post by alchemy on May 13^th, 2005, 5:57am

Thanks for the kind words. I've had clusters about six years now. at first they treated with lithium and pain pills I can't remember the names of. I moved from Phoenix to Maine and the nueros up here have tried verapomil I'm taking about 960 mg a day nuerontin, imitrex injections stadol oxy's nothing will break the cycle. I can't sleep can't work and obviously can't spell sorry about the grammar. my memory is gone. I get lost in my own neighborhood. trying to hang in, but it gets harder everyday. tried suicide in nov. obviouysly didn't work

Title: Re: WELCOME!
Post by markca on May 16^th, 2005, 6:44am

[quote author=LeLimey link=board=knowya;num=1076441006;start=125#128 date=05/12/05 at 18:38:23]Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by.........

Thanks for the words. The imitrex nasal didn't seem to do much for me. I'll see if I can try the O2. I'm also really wanting to try the injections.

The Beast has not visited in a little over 24 hours, so I believe I'm on the downside now. We'll see...

I sent my wife the link to this site and she's lurked around a bit. It has helped her understand a bit.

Thanks again!

Title: Re: WELCOME!
Post by LeLimey on May 16^th, 2005, 8:37am

Hi again Mark, I'm pleased to see you are ready to try new treatments and I really, really hope your cycle is on the end now too. The imitrex injections will be a great help to you and as for the o2.. well.. I'm really pleased you are going to give it a go as I can't praise it enough.
Hello Mrs Mark! Its nice to meet you too. Come along and say hello, we don't bite even if we seem like a bunch of nutters!
Take care of yourselfs, PFDANS and don't forget to keep us updated okay?!
Best wishes
Helen

Title: Re: WELCOME!
Post by Jillian00 on May 17^th, 2005, 2:27am

:-/

Hello everyone,

I'm sure glad I discovered this website--thought I was suffering alone for what has seemed an eternity!

I am a 26-year-old female with a history of migraine headaches, but this January when I had my first episode of cluster headaches I discovered what REAL pain is!

Reading some of these posts gives me real hope for overcoming this Madness--

When I read messages from some of you who have suffered for 20 years i am in total awe!! I have been diagnosed by 2 family practice md's a neurologist and and internal medicine doctor--I have tried SO many medications and really have found no relief. I am now taking narcotic medication and feel extremely guilty because i am only masking my pain--I feel like I am not strong enough to handle it--I am waiting to see a different neurologist but must wait 2 months to get in. I am going to see my family doc tomorrow I am worried that he will not refill my narcotic medicine--my worry is not that I will not have narcotics but that I will not be able to handle the pain. I am right in the middle of a cycle. Any ideas on how to cope with pain?

Title: Re: WELCOME!
Post by LeLimey on May 17^th, 2005, 3:29am

Hi Jillian, I'm sorry you are suffering - we know how it feels :'(
Narcotics are not the best way to go for CH. From what I understand of others expereiences they might at best mask the pain but they won't get rid of it and its just left there lurking waiting to come back. Have a look on the meds board for recent posts on this.. there are quite a few!
Read up on what is here for better CH meds. You want to be looking at abortives and preventatives. Abortives work on individual hits and prevents on the cycle.
As a "for instance" I'm taking verapamil as a prevent and using o2 (which I can't recommend enough!!) for an abortive. Imitrex injections are a good abortive too but they aren't suitable for everyone. One thing you will learn about this beastie is that no two people get it in the same way and so no two people take the same combo/dosage of meds. Its a bit of trial and error but I know you will find your silver bullet!
Check out the kudzu thread as well under the meds and therapies board. ALOT of people have been having outstanding success with that and also psilocybin and LSA seeds. I would strongly urge you to discuss any of these with your doctors as they know your full medical history and we don't. None of us here are doctors.. but we are knowledgable about this buggering affliction and we do care and we WILL help and support you!
Ask all the questions you want, there is always someone around. Oh and it is COMPULSORY that you come back and let us know how you get on okay?!
PFDANS (pain free days and nights)
Helen

Title: Re: WELCOME!
Post by Gavilan on May 18^th, 2005, 9:34pm

Hello fellow suffers,

I have had head aches for all my life and they have probably been cluster head aches. It has been refreshing to find others with the same symptoms. Mine are behind my left eye, although for the last two years or so, I have had them behind my right eye too. I have not found a trigger or a good preventative treatment. The neurologist had me taking Inderol but I found that it made no difference. It had the side effect of lowering my heart rate to below 40! For treatment, I find that the same medication does not work every time. At the moment I am taking Relpax, but it knocks me out terribly. Last night I had a 7+ episode and I did not get relief for several hours after taking the medication.

My episodes seem to be occuring weekly. Very often I will wake up with a 2, and it will go away as I shower.

I also suffer from depression and I cannot help wondering if the demons are linked. I am intrigued to find out if anyone else shares this.

I also happen to be a devoted Christian so if there are fellow suffers who share my faith, I would be glad to hear from them too.

Title: Re: WELCOME!
Post by Margi on May 19^th, 2005, 9:36am

Hi Gavilan,
Sorry to hear you're on a bumpy ride right now. A couple of things you say in your post make me wonder if you've got an accurate diagnosis of cluster, though. You say they're hitting weekly? And that they are lasting for hours and hours? I'm wondering if you're maybe having migraine as opposed to cluster. Those two attributes really are more indicative of migraines, which also suck really bad (I'm a migrainer, my hubby is a clusterhead).
I see you're in Delta - we also have a Canadian cluster headache website and we have a lot of sufferers in your area. One of them might be able to direct you to a cluster knowledgeable neuro that can help you make a plan for pain management. Please feel free to come on over and introduce yourself!!

http://www.clusterheadaches.ca

We have a message board just like this one as well:

http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl

Depression and headaches are quite often companions - you're sure not alone with that. Both cluster and migraine are semi-manageable with different treatment plans, but there is no cure for either yet. That's why these support groups are so vital to everyone's survival.

Hang in there, friend - my prayers are with you. ;)
Margi

Title: Re: WELCOME!
Post by allnight9 on May 21^st, 2005, 10:59am

Hey, I think God lead me to this site, I have been battlin the beast since I was 18, now 42. I just started up after 18-20 months pain free, nothing like that 1 am wake-up call and a shot of imitrex. I found lots of new ideas here. Keep up the fight

Title: Re: WELCOME!
Post by LeLimey on May 21^st, 2005, 11:59am

Hello allnight and welcome! I'm sorry you have to be here but I'm very glad you have found us. Tell us a bit more about yourself and your cycles.. how long they last, do you use any prevents etc? There is loads of advice here which you can read up on and my personal recommendation to you is that you consider O2.. its been a lifesaver for me and I love it. Have a good old read, ask all the questions you want and (this is VERY important!!) Let us know how you are doing okay?
Take care
PFDANS
Helen

Title: Re: WELCOME!
Post by allnight9 on May 21^st, 2005, 8:59pm

Thanks for the welcome, I have 3-4 CH a day at the peak of my cycle with what I call 2-3 transient headaches (small ones I can handle without meds). Then I end up with about 2-3 real screamers that take me to the ER for a shot of Demirol or something that knocks me out cold. I have used O2 but my Dr. is unwilling to prescribe it and I not sure how else to get it. I've been to 4-6 nuerologists I don't remember the number. 2 retired, 2 could not do anything for me and 1 thought I was an addict. Althought I do use Fiorinal with codiene for my daytime ch's and it works well enough after 30-45 minutes. I have had only 1 CH today and I am hoping that my cycle is over, its been almost 2 months. pray for me as I will for everyone that suffers from the beast. Keep up the fight and never ever let it beat you...Phil

Title: Re: WELCOME!
Post by pattik on May 21^st, 2005, 11:24pm

Welcome to Clusterville, Allnight. There is a great deal to learn on this site, and you should research the O2 info (link on the left side of the page). Many members of this board use O2 very successfully, and there is good information which you can print out and take to your doctors in order to get the rx you need. It is also important to use the correct LPM and the non-rebreather mask. Stick around and keep posting, because there are many headache gurus here who can give you a lot of help regarding meds as well as the proper use of the O2. Here is one very good link that can help get you started with info--one good source to print out. http://www.brightok.net/~mnjday/chtherapy.pdf
Good luck with your research and stick around to let us know how things go. PFDANS to you. Pat

Title: Re: WELCOME!
Post by Colin Castle on May 24^th, 2005, 9:04pm

Hey everyone,

I'm 30 years old and I've been getting episodic cluster headaches since I was approx 21. My episodes generally last approx 3-4 weeks. I get maybe 2-3 attacks during the day (kip 3,4,5) and 1-2 attacks at night after falling asleep (kip 7,8,9). I fear the nighttime attacks so much that I try to avoid sleeping, and when I do sleep I try and do it sitting up in bed. As you all probably know, it doesn't work.

My father also suffers from this monster, though since he hit his mid-fifties he's only gotten it once. Still, he's been a great source for me to talk to as he has 30+ years of experience with this under his belt.

I generally get my episodes at the start of the second week of November. One thing that worries me is that over the last couple of years it's been jumping around quite a bit. A few of years ago, I had my episode in August. The year after I had it in November as per norm. Then last year I had nothing at all. I personally think I missed it because of the stress of planning my wedding. Anyway, This year is the first time I've gotten it in May. This is worse than the anticipation of November because now I never know when I'm gonna get hit and if I'm going to start getting them more than once a year as I do now. My dad can't remember this happening to him.

Speaking of my dad. I remember as a little boy, waking up and seeing my dad sitting on the edge of the couch in the dark holding his head and rocking back and forth. It's kinda traumatic for little kids, or it was for me anyways.

One really frustrating aspect of cluster headaches is the fact that there are very few physical symptoms other than my really red, watery, and droopy right eye. For the amount of pain that I'm feeling, I should have something more pronounced, like an alien head popping out or something, just so people will really understand what I'm going through.

For treatment, I have the following:

1. Hot showers (I don't know why, but it sometimes aborts kip 2,3 and 4's)

2. Long walks (for the kip 7,8,9's and generally at night time thank god, because I look like i'm drunk)

3. Rocking back/forth in dark, holding area near right eye and making misc noises (when they get bad)

4. Music. (In conjunction with walking, or rocking back/forth)

5. Every year there is a different "tripan" that my doctor want me to try... none work, not even those fast acting under the tongue things... though to be fair, none of the above I've mentioned really does anything for a kip 7+

6. There is another medication my doctor prescribes to assist in reducing the frequency of my attacks, I've not used it this year because I don't really think it works.

7. I've been reading about Kudzu and Meltonin on the message boards so I went out today and bought some of each. I figure I'll take x2 tablets of Kudzu (nature's way) three times a day as recommended on the bottle and 2-3 tablets of Melatonin (wisdom of nature) 30-45 minutes before going to bed. I really hope this helps me.

A couple of things I DON'T do that I've seen some people post about are:

1. Bang my head or hit myself.

2. Consider suicide.

I'll assume that the reason I've not considered the above is because my cycles tend not to last more than a month. It may be different if I were suffering for month's on end or if I were chronic.

Has anyone else gotten really superstitious about thier headaches? For example, if I see any mention of an episodic switching over to chronic in any message board, I immediately blur my eyes and skip down the page. Also, when I'm not in cycle I try not to think about it at all, for fear of bringing it back. It's silly but I can't help it.

I'm sure there is more to say, but I feel like I'm going to get one in a minute... Can I get an episode from staring at the screen too long?..

Thank you for this site,

bye.

Title: Re: WELCOME!
Post by AGILLIAM3 on May 25^th, 2005, 2:30pm

HELLO I AM NEW TO THE SITE AND MY CH ARE A LITTLE DIFFERENT. I GET HEADACHES THAT LAST AT THE MOST 45 SECONDS BUT THE COME AND GO ALMOST EVERY 2 MINS. THEY WAKE ME UP AT NIGHT, MY NOSE AND EYES RUN, I FEEL AS IF I AM ON THE VERG OF AN ANNYREISUM. I HAVE HAD THESE HEADACHES FOR ALMOST 4 YEARS AND IT AFFECTS MY WORK, PERSONAL LIFE EVERYTHING I DO I CANT EVEN DRIVE BECAUSE MY SIGHT LEAVES ME WHEN I AN HAVING THE HEADACHES. WHAT I JUST CANNOT UNDERSTAND IS THAT EVERYONE ON THIS SIGHT HAS HEADACHES THAT LAST FOR ABOUT 30 MINS OR SO MY HEADACHES LIKE I SAID LAST 30 - 45 SECONDS EVERY 2 MINS. ALL DAY. I CANNOT FIGURE OUT WHY. I HAVE TRIED EVERYTHING AS A REMEDY EXCEPT INJECTIONS AND O2 ANY SUGGESTIONS?

Title: Re: WELCOME!
Post by thomas on May 25^th, 2005, 6:17pm

on 05/25/05 at 14:30:08, AGILLIAM3 wrote:

Sounds like CPH or SUNCT. Have you tried indomethicine?

Title: Re: WELCOME!
Post by Jonny on May 25^th, 2005, 6:20pm

on 05/25/05 at 18:17:49, thomas wrote:

Sounds like CPH or SUNCT. Have you tried indomethicine?

Ditto....do a google search on what Thomas posted.

Title: Re: WELCOME!
Post by E-Double on May 25^th, 2005, 11:49pm

SUNCT:
http://www.ninds.nih.gov/disorders/sunct/sunct.htm#What_is

Title: Re: WELCOME!
Post by brainpain101 on May 26^th, 2005, 3:30am

Hi, brand new to this site. Just trying to post my first message. Spent the last six hours trying to learn about my beast and ended up here after 4 hours of research. I am positive that my condition is connected to the trigeminal nerve. I believe I am currently a chronic cluster headache sufferer of 5 years. I was just a come again gone again cluster sufferer for the 7 years before that. The only symptom that I have never had is that leaky sinus problem. Otherwise, it all sounds extremely similar to what I experience. So if anybody is out there, HI.

Title: Re: WELCOME!
Post by Rickf on May 26^th, 2005, 8:08pm

Hello everyone. Sorry to see that there are so many people that go through clusters. I've been dancing with the beast for 29 years worth of episodes. Woke me up 3 times last night. I'm going to spend some time going through this website and see what I can find or if I can help anyone. As much as I hate to see so many going through these it should at last be good to be able to talk to people who really understand.

Title: Re: WELCOME!
Post by Kim Y. on May 27^th, 2005, 7:19pm

Rickf

Welcome, sorry that you had to seek us out and are a sufferer yourself, but very glad you found us.

This place is loaded with information. I still consider my self new even after a month and a half just cause I am still learning a lot.

Be a sponge and soak it up.
PF wishes......Kim

Title: Re: WELCOME!
Post by Kim Y. on May 27^th, 2005, 7:25pm

Brainpain101

Welcome to the family.

You don't have to have all the symptoms to be considered a CHer but you end up having a majority.

Take a look at the left for meds and treatments and take it to your doctor. Get what you need. Arm yourself and knock the beast out.

We all are here for you. Ask anything you want someone is sure to be able to help and that goes for all newbees.

PF wishes.......
Kim

Title: Re: WELCOME!
Post by marlinsfan on May 30^th, 2005, 5:56pm

I'm new too. Signed up this morning, after reading all night.

I thought I had migraines, but now I know better. I guess I'm luck I'm not chronic. I thought my condition was about as horrible as it gets, so I can't imagine going through this stuff all year long. I was PF for 2 years, and 6 weeks ago started a new bout.

I hope to learn and share, and pray that someone somewhere finds a cure to save us all.

I live in Hollywood, FLA. If anyone knows a good neuro, please let me know. Mine retired 3 years ago, and the new one assigned to me just continued what the old one was doing. I'm going to see him tomorrow, coincidentally, and plan to talk to him about CH.

GOOD DAYS AND PEACEFUL NIGHTS TO EVERYONE.
Jose
;;D

Title: Re: WELCOME!
Post by cazman on Jun 4^th, 2005, 10:58am

welcome here and im sorry you are here cause we all know what brought you here and its not a nice thing but for the day i found this site was the day thing started to get better, as they say knowing is half the battle , for me i went years not knowing what i did to deserve such a horrible punishment, i thought all kinds of scary things , is it a tumor, do i have brain cancer, did i do to many drugs when i was younger,did i get this from a bad bang to my head, hell mabey im possesd , .
i cant even count how many times i sat in the er at the hospital in tears begging to be knocked out, while everyone kept saying im over reacting , its just a headache it will go away, ect ect.
today thanks to a click of my mouse on a link on a news web site i foung this site ,when i read the discription of a ch i started to cry and this feeling of relief came over me and for the first time after years a sheer hell i know what it is , i know its workable , im not dying from some strange brain disorder , and single most important thing IM NOT ALONE, today im still a ch head , but i have an arsonal of things to battle this evil heartless beast, and i can help others with what ive learned , in the last yuear ive met two other people that have this and didnt know what it was today they know and we share and talk on the phone when things get bad.
welcome to everyone that is just getting stay aroung the people here my be the only true people youll meet that truly understand what it means to live in hell and they will help you anyway they can to teach you how to fight back and get some sorta piece of mind hang in there and just know your not alone god bless you all and my you have a pf day

Title: Re: WELCOME!
Post by carolyn05 on Jun 24^th, 2005, 7:20am

hi all hows your heads,mine is bad just injected imigran again brilliant stuff,i usually get 3 a day,they came back may 16 without warning.still anouther 2 to go today oh well. keep your chins up there is light at the end of the tunnel i hope cu later carolyn05

Title: Re: WELCOME!
Post by LeLimey on Jun 24^th, 2005, 9:18am

Hi Carolyn nice to meet you!
Did I read that right? Are you using 3 imigran injections a day? The maximum recommended dose is two. I know how easy and tempting it is to go overboard though :'( Have you ever tried O2? It is a brilliant abortive and works really quickly.. and no side effects either! Are you on any preventatives such as verapamil either? Take a look at OUCH UK.. specifically under the Treatments button at CD Oxygen and ask your doctor about it. I promise you it will make things alot better for you! You could also give the OUCH UK helpline a ring. Its manned by sufferers (ansaphone, leave your details and they will call you back)
Let us know how you are doing okay?!
Take care
Helen
OUCH UK website
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

OUCH UK helpline no 0161 2721702

Title: Re: WELCOME!
Post by paul_pero on Jun 30^th, 2005, 7:18am

Hi to all

This site has brought about the first pain relief I have had for these headaches in 14 years. All the doctors I saw could not help. They gave me all sorts of stuff. I found this site, got info on oxygen, and after going to a couple of doctors finally got the script for O2. Have used it successfully 4 times so far in 2 days. I have never felt so empowered and happy. I know I will keep on getting the HAs, but now I can at least fight them.

The guys here are so helping and caring. If you are new to this site I suggest you read and read and print up the info that is available and go to your doctor and demand Oxygen.

Paul

Title: Re: WELCOME!
Post by hughb on Aug 11^th, 2005, 1:45pm

Hi, all...

New to the board. Unhappily, headaches have returned after a 5-year hiatus. During that hiatus, I took verapamil 240 mg SR every day, and exercised regularly. Perhaps this kept them away (I used to get 1-2 month cycles every 6 months or so). Now I've increased verap to 480 mg/day. I don't think its abortive effects have kicked in yet.

Last cycle I did acupuncture and don't think it did any good.

This cycle I'm using injectible Imitrex for the first time. It's a godsend. Headaches disappear within 1-2 minutes after shooting myself up. Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to. I'd prefer not to.

When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?

This board is great because most people I know don't know a thing about this strange malady. Thanks for running it.

Hugh

Title: Re: WELCOME!
Post by seasonalboomer on Aug 11^th, 2005, 2:13pm

on 08/11/05 at 13:45:12, hughb wrote:

When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?

Hugh

In the past I've been able to narrow it down to activity with prolonged increase in heart rate, over 35 minutes in length when in cycle. Tends to take me a lot of nerve to get out running when in cycle to test further. This time of year, I think that changes somewhat to include exercise of any type that gets you up to that point of feeling red-hot flushed in the face. Simple answer, yes I do. Some others however find exercise helps them abort. Go figure, that's CH for you.

Scott

Title: Re: WELCOME!
Post by jcmquix on Aug 11^th, 2005, 3:02pm

on 08/11/05 at 13:45:12, hughb wrote:

This cycle I'm using injectible Imitrex for the first time. It's a godsend. Headaches disappear within 1-2 minutes after shooting myself up. Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to. I'd prefer not to.

Hi Hugh..

Nice to meet you, sorry it has to be here, but glad you found us, Welcome aboard....

Have you looked at the TREX inj tip to the left... and the other tips there... They are all pretty good.

Be careful with how much TREX you do take in a 24hr period... The tip might help you cut down that 24hr amount, I can abort a HA with 1/3 of 1 shot..

I use the O2 to abort about 90% of my HA's now, but everyone is different...

Wishing You Pain Free Days & Nights
Charlie

Title: Re: WELCOME!
Post by Sandy_C on Aug 11^th, 2005, 4:32pm

on 08/11/05 at 13:45:12, hughb wrote:

Hi, all...

When I was headache-free, I would run 6 miles a few times a week. When the HAs first came back a few weeks ago, it was always at the end of a run. Needless to say, I have stopped the 6-mile runs. I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on. Weird. Does anyone else experience this?

Welcome Hugh. Sorry you have to be here but glad you found us. I've been episodic since 1999, with one cycle every year but not all cycles were really bad ones(which is lucky compared to others on this board). It never made any difference during my earlier cycles whether I exercised or not - until this last one. Just getting to the point of sweating and I would get hit -big time. But I also found out that just sitting down to watch a little TV after dinner in the evening, I would also get hit - big time. So, I had to keep busy and active all day (and most nights) without ever really getting enough exercise to get my body heated up, and without being able to relax even just a little at night. Wierdest cycle I have ever had! Can't explain it - just the beast doing his darndest to keep me off balance.
:-/ Hang here. There is a wealth of knowledge and experience with the people on this board. Sending you vibes and hugs [smiley=hug.gif] for PFDAN.

PS without the exercise, I've also gained a pound or two

Sandy :(

Title: Re: WELCOME!
Post by Jasmyn on Aug 14^th, 2005, 1:15am

Hi to all the new people and the old!

This is the best site in the world for everyone around the world with CH and CH families.

ALL FOR ONE AND ONE FOR ALL!

Against the BEAST we ALL stand TALL!

PFDAN's to everyone! [smiley=wave.gif]

Title: ... Re: WELCOME!
Post by JimV on Aug 16^th, 2005, 3:37pm

Hi all, New here, will post more later but wanted to introduce myself. I get headaches about 2-3 times a month, Dr. say's they are clusters... I use Imitrex when I get them... This looks like a very supportive group... can't wait to read more but since I'm at work I better get back to work b4 they catch me ;)

Jim in Phoenix

Title: Re: WELCOME!
Post by E-Double on Aug 16^th, 2005, 4:21pm

Welcome Jim,

Head pain sucks like no other!!
There is plenty to learn here so please do so. There are a few HA that present themselves similar to CH but differ in location, duration and sometimes intensity.
You mentioned 2-3 per month. Do you mean MAJOR BAD ONES and the rest are under contol with preventative meds or really 2-3?
I ask this because Most of us are lucky to get that per day for a certain amount of time if episodic and for those of us who are chronic may get that daily without break for yrs.
I am not a doctor yet here you will find over a milenia worth of CLUSTER and other HA expertise that can help.

Take the cluster quiz located on the menu and see what comes up.
MAny go yrs. misdiagnosed or undiagnosed as something other than Cluster and there are several people we have met that get diagnosed with CH but do not have.

We just want to guide you regardless.

So take the quiz and ceck in again!

Warmest wishes,

Eric

Title: Re: WELCOME!
Post by JimV on Aug 16^th, 2005, 5:27pm

TY Eric,
Well, I've had 2 different Docs tell me 2 different things. One said I have Migraines, the other said they sound more like Clusters?? I go through cycles, sometimes I get 2-3 headaches every day (usually in the afternoon) sometimes I can live thru these without taking imitrex (usually take Excedrin or Naproxen sodium followed by Tylenol followed by another dose of Naproxen), they are what I call low-grade headaches... they don't go away but they don't become unbearable during these periods. at other times, they become unbearable and I can usually tell when they are going to get to that point. When they get bad (if the naproxen/tylenol/naproxen doesn't help) I then take Imitrex. They don't go away on imitrex, I just weather them out so to speak. I guess I'd say it this way; I rarely go thru a day without headaches but I only have the bad ones a couple of times a month. My headaches are always behind my eyes and I always get a bad one when cloudy weather rolls in which is one of the reasons the one doc says they are clusters. So, let me know what you think? Thanks again for the welcome and warm wishes!

Title: Re: WELCOME!
Post by E-Double on Aug 16^th, 2005, 5:34pm

It sounds like it could be a number of different HA types.

If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:

http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf

We are definitely a rare breed and I sure as hell hope it is not what you have.
Pain sucks regardless!!

Title: Re: WELCOME!
Post by Baked on Sep 30^th, 2005, 9:00pm

Hello all,

You guys are all awsome and great people. You all have made my life and my wifes a little easier to deal with.

Big Hugs

PS

any conventions or get togethers planned?

Title: Re: WELCOME!
Post by niteowl on Oct 1^st, 2005, 1:36am

Hello to you all. My name is Scott, 35 years young. I am new to this site, but all to familiar with the monster. Been fighting them since I was 18. Sitting here late on Friday night, afraid to lay the head on the pillow. I figure I get them when I'm awake, but much worse at sleep hours. Anyway I guess you all know that, which is a relief, because that way I don't have to explain it to you like I do to everyone else. (they probably think I am a faker or a whiner) So just a little info for you all. Married, two boys 5 & 8, work as a Case Manager for the department of corrections. ( lately I'm the case, due to the cycle starting again) But I'll quit rambling on about that. I look forward to getting to know you and I amhere to help or listen if I can. Talk to you soon.

Title: Re: WELCOME!
Post by nani on Oct 1^st, 2005, 10:53am

Welcome Baked and niteowl. Sorry you had to find us, but this site has tons of info and support to offer. Read all you can, and ask questions.
Baked, there is a meetings board on the index, look there for local gatherings. There is also our bif OUCH convention every summer. Next years will be held in Milwaukee.
Pain free wishes, nani

Title: Re: WELCOME!
Post by Kim_for_Todd on Oct 13^th, 2005, 6:12pm

Hi! I'm Kim and my hubby Todd has suffered from ch for 14 yrs. We are both so grateful to find your website and all of the info on clusters! I've been reading EVERYTHING on here for five days now. Thanks to this site, I went with Todd today to the doctor's office and was armed with printouts. He now has oxygen and new meds. I wrote quite a bit about it on the top ch thread under "O2 question" topic.

Thanks to your site, Todd's parents, my family, and some of our friends now know more about ch and have a small glimpse of what he's going through. No one, other than myself, has ever seen him during an attack.

We've been married for over 16 yrs, have a 14 yr old son and an 11 yr old daughter. Todd is an adult probabtion officer and I'm a teacher.

Thanks again for all of the info and the support!

Kim

Title: Re: WELCOME!
Post by LeLimey on Oct 14^th, 2005, 3:22am

Hi Kim, what a lovely story! I'm so pleased you were able to arm yourselves with info to get better meds for Todd.
O2 sometimes takes a while to get a handle on, don't be afraid to ask for tips on how to use it if you don't feel you are getting the best results okay? The mask is the key issue and you need a non rebreather mask (the one with a resevoir bag) at least.
Let us know how you are both getting on okay?
Regards
Helen

Title: Re: WELCOME!
Post by alchemy on Oct 14^th, 2005, 5:04am

hi kim nice letter glad the info you found here helped, the people here are great and they're support is wonderful. keep posting and let us know how you're making out.

Title: Re: WELCOME!
Post by ngd on Oct 19^th, 2005, 2:48pm

Hello all, my name is Neal. I wanted to introduce myself, say thanks for the info, and chime in on my CH experiences.

I began having CH nine years ago at age 21. And have experienced roughly 4 cycles since then. Presently I am enduring a quite intense battle that prompted me to seek out more information on this beast!

My main medication is Maxalt. It does the job if taken before my HA starts, but that doesn't help me much at night. I spoke to a Nuerologist friend of mine who says that the Maxalt may not even be helping me at all. Who knows...My own father is a Internist, and even he claims no cure at this point!

Anyhow, I had a legitimate KIP 9 last night and made it, I am sure they'll get worse, but it is true "misery loves company"

Thanks all!

Title: Re: WELCOME!
Post by Sandy_C on Oct 19^th, 2005, 3:41pm

Hi, Neal. Welcome to our funny farm. Sorry you have to be here, but glad you found us. This website has probably the most in-depth, comprehensive information on CH than anywhere else in the world. Be sure to read everything you can here because there is so much information that will be helpful to you. Start with the buttons on the left. Take the cluster quiz, check out the Kudzu threads under medications, ask questions. There is no such thing as a dumb question on this site, believe me! I've asked just about all of them.

If you are getting hit at night, try a little cocktail that seems to be helping a lot of us. 9 - 12 mg of Melatonin, plus a Benedryl. Melatonin is OTC, and can be found in the health supplement sections of your drug store (I found mine at my grocery store.)

Jump right in. Someone is here 24/7/365 so you will never be alone.

Sandy

Title: Re: WELCOME!
Post by ngd on Oct 20^th, 2005, 1:47pm

Thanks Sandy! I will try that combo!

Title: Re: WELCOME!
Post by kyt on Oct 29^th, 2005, 10:26pm

I am such a dunder head. I sent a comment and after the comment was sent I find out how to register. Okay I am a fellow sufferer for many years now...too many to count anymore. I am Kathryn but most people call me kyt. I never considered the water treatment but I do drink almost 2 gallons a day so I might float away if I drank anymore. I was on Imitrex injetions for 2 years and one day I clipped a nerve and that was enough for me. They didn't help much but instead of the pain being 200% blinding itdropped it down to about 175% blinding. Well, I am glad I found a group who suffers as well. One thing I would like to share with you is my bboss is a nit wit when it comes to these things. All she tells me is take an aspirin and get over it. Well.... I braved it all this week I actually went to work with a booger of a cluster and she actually told me her sister in law who works there too braved work with a migraine the day before. I yelled at her to look at my face..so she said I could have smeone do my run (i am a bus driver) with me riding along....oh how swell of her... well we all know the outcome i don't want to ramble

oh well once agan I am Kyt and thanks for being here

Title: Newbie!
Post by tanyae on Nov 25^th, 2005, 10:19pm

Hi everyone! What a great place. I am in the first round of CH, but going on week 5. I had no idea what was happening to me and why everynight I woke in excrutiating pain. Took a week of these before I went to the Dr. He diagnosed migraines. Then I ended up in the ER, and that Dr. said CH. When I asked my Dr. on a followup he said, "Dr's used to seperate migraines and CH, but basically they are the same. Just different symptoms!!
I have watched my husband and daughter suffer from migraines for years, but they were always able to function. I felt like such a weenie that this "migraine" was totally devistating me. Now I know!! There is a difference.
My Dr. prescribed Maxalt. Any responses to that med? I appreciate any advise. Are they going to get continually worse every bout that I have? Will they stop all of the sudden or do they start tapering off? I have 1 and sometimes 2 per night. What are the shadows that I hear people talking about?
Sorry for being so long winded, but I have alot of questions and fears.
[smiley=huh.gif]
Looking forward to getting to know all of you. Just wish it wasn't because of these CH's.

Title: Re: WELCOME!
Post by zanychef on Nov 26^th, 2005, 3:31am

hi Tanyae!!
welcome aboard ;;D sorry you had to find us but be glad as hell you did ;;D
best place for you to find out about CH
if your doc say that CH and meegranes are not seperable i would say to stick a hot poker in his eye whilst asking ' got a meegrane?'
i've never taken maxalt so cant say about effectiveness.
try getting him to prescribe oxygen with a non rebreather mask and then get yourself a clustermasx from clustermasx.com
the best thing to do now is read read read ,ask questions read some more then go to the doc armed with an armful of printouts!!
Yours
Ian

Title: Re: WELCOME!
Post by tanyae on Nov 26^th, 2005, 9:38am

Hello. I am new here. Just found the site yesterday. I am in the middle or hopefully the end of my first CH.
I am a 45 yo female, and totally confused. I had never even heard of CH, and now I don't know how to handle everything that has come my way and will be coming in the future. This is scary stuff.
I am relieved to know that the excrutiating pain is as bad as I thought. My husband and daughter both have migraines, but they are generally able to function while having one. I was beginning to feel like a weenie with these headaches of mine because they would totally take over.
My Dr. has put me on Maxalt and Tylox. Any input on those two drugs?
Will the CH bouts continue to worsen each time I have one? What does everyone mean by shadows?
What advise do you have for someone recently diagnosed?
I am afraid to go anywhere in the evening because I don't kow when they will hit. Sometimes they hit me before even going to bed, while watching TV...
Looking forward to hearing from you all.
Thanks for the great info that everyone puts out.
TanyaE [smiley=huh.gif]

Title: Re: WELCOME!
Post by BobG on Nov 26^th, 2005, 11:57am

on 11/26/05 at 09:38:35, tanyae wrote:

Hello. Hello yourself. How you doin’? I don't know how to handle everything that has come my way and will be coming in the future. One way is to read all you can at this site. There is more info on CH here than anywhere in the world. I am relieved to know that the excrutiating pain is as bad as I thought. Huh? LOL!
I was beginning to feel like a weenie with these headaches of mine because they would totally take over. You are not a weenie. You are experiencing the most painful condition known to man (and women).My Dr. has put me on Maxalt and Tylox. Any input on those two drugs? Tylox: This medication is a combination of a narcotic (oxycodone) and a non-narcotic (acetaminophen) used to relieve moderate to severe pain. Oxycodone works by binding to opioid receptors in the brain and spinal cord, and acetaminophen decreases the formation of prostaglandins, therefore relieving pain. Warning, Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Also, if used for an extended period of time, do not suddenly stop using this drug without your doctor's approval. For most CH sufferers pain killers do not help and may make things worse.
Maxalt: aka Rizatriptan is used to treat migraines. It helps to relieve headaches, pain and other symptoms of migraines, including sensitivity to light/sound, nausea, and vomiting. Prompt treatment allows you to get back to your normal routine and may decrease your need for other pain medications. Rizatriptan does not prevent future migraines or reduce how often you may get a headache. Rizatriptan belongs to a group of drugs called triptans. It affects a certain natural chemical (serotonin) that constricts blood vessels in the brain. It may also block other pain pathways in the brain. Warning: DO NOT take Maxalt if you are taking Imitrex or any other triptan. Will the CH bouts continue to worsen each time I have one? Not necessarily but maybe yes. What does everyone mean by shadows? That is a feeling you get behind your eye or maybe a tender spot in the temple. It’s a very minor CH attack. Irritating as heck but not real pain, yet. It’s just the devil letting you know that she is not through with you.What advise do you have for someone recently diagnosed? Read this site. Learn all you can.I am afraid to go anywhere in the evening because I don't kow when they will hit. Take your Maxalt with you. And try to get a small tank of oxygen you can carry in your car. Or, try to get Imitrex injectors (if you can tolorate it). It can stop an attack in just a few minutes, quicker than the Maxalt pills. Sometimes they hit me before even going to bed, while watching TV... That’s something many of us try to avoid by staying active and/or stressed. “Stay stressed. Never relax. Never sleep. Ever.”

Title: Re: WELCOME!
Post by tanyae on Nov 26^th, 2005, 10:07pm

Thanks Bob for the write back. Scar stuff we're dealing with here.
I will keep reading, and reading like you suggest.
Looking forward to getting to know more of you.

Title: Re: WELCOME!
Post by Jasmyn on Dec 21^st, 2005, 1:37pm

HI Tanyae and welcome.

I am sorry that you have CH but the best way to deal with it is to know it. Like Bob said read and read more.

Nobody can promise that it will become less severe but know this...

You will never be alone with this, we are here.
You are not a weenie, you must be strong to handle this and you will get stronger every time and when you wanna give up, we are here, we understand and we fight this battle with you.
It will be tough on your family and your normal life but you will find ways to work around it and cope and always remember we are here.
You are now part of our family and we are here for each other.
We, including you, are survivors, never forget.
Try to get your hubby to join the supporter group, he and you will benefit from knowing how to deal with CH and both get the support you'll need.

And like Bob said stay stressed, it is the best, relaxation is not for us CHers.

Jas

Title: Re: WELCOME!
Post by TarHeel_Todd on Jan 22^nd, 2006, 12:35pm

Hi,

I am new the site! I am 32 and have had attacks since college. I have been lucky and NOT had an attack in 3 years. That all ended about a week ago. I thought I was feeling better. I was wrong. I am having a bad morning. An attack at 1:15 am and an other at 7:30 am. 2 Imitrex injections later and my head is dancing around another one.

My doc has me on the Imitrex (Thank God) and Midrin. All while waiting for the Verapamil to build up.

Any tips to help with the anxiety? I am also afraid I could become chronic.

I am sooo glad you are here!

Thank you

Title: Re: WELCOME!
Post by chewy on Jan 22^nd, 2006, 1:05pm

PF for 3 years.

In cycle for 1 week.

In my years here on Ch.com you are the winner of the "Farthest Thing From Chronic" award.

Title: Re: WELCOME!
Post by TarHeel_Todd on Jan 22^nd, 2006, 3:43pm

I am feeling much better than earlier today. I have been doing a lot of reading on this site today. Thanks again, to all the postings and information.

Title: Re: Welcome!
Post by getty6438 on Feb 19^th, 2006, 1:18am

on 02/11/04 at 00:35:00, ClusterChuck wrote:

To all newcomers, WELCOME ABOARD!

A few thing I would like to tell all of you. First and foremost, you need to read this link: http://www.clusterheadaches.com/history.html
That link tells the history of this site, and about our illustrious DJ. There is not a finer person on this earth!

Second, get to know the people here. There are some wonderful people here. One of the ways to get to know us better, is to go to the chat room that a sister site runs. To get there, go here: http://headachesupportgroups.com/echat45/public/index.html There is normally someone there after 10 pm east coast time. If no one is there, log on, and wait. Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.

Get to know people, as you will form close ties with people that should last to the rest of your life. Exchange phone numbers. Talk on line, and talk on the phone to them. These people can be an unbreakable life line for you, and you can be for them.

Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever. We are here to help you in any way that we can. The one thing that we ask of you, is to give your support to others, also. We are sufferers, and we are supporters. As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.

If you ever get a chance to meet another clusterhead or supporter, do so! There is no better time than meeting them in person! The bond is instantaneous! And do not let the fact that you are in cycle stop you. I have been to two of them, so far, and at both of them, I was getting hit. All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group. Everyone knew what was happening, yet no one freeked out over it. They were there if I needed them, but knew enough not to force themselves on me. You could see the love and vibes in the eyes of each and everyone of them. This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache! Deal with it! Take a couple aspirins, and you will be fine."

Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here. Many of us say, that if it was not for this site, I would be pushing up daiseys. That is not just a phrase, it is the God's honest truth. When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation! Also, thank DJ directly. He doesn't post much anymore, but he DOES read all posts.

Thank you DJ!

We are a family. Welcome to the family, and welcome to my heart.

Chuck

Title: Re: WELCOME!
Post by Jasmyn on Feb 19^th, 2006, 4:11pm

Getty, thanks for posting this one from Chuck, it stays a GREAT Welcome and still is true!

Welcome to you!

Title: Re: WELCOME! new and poor
Post by Colorado_Loki on Mar 8^th, 2006, 5:50pm

I'm new to the site. My name is Thomas. My brother turned me on to this site, because he was just diagnosed with ch. I've had ch for only a year. diagnosed first with migraines then ch, then the mri showed a cyst in the maxillary sinus cavity. However after reading symptoms of ch I'm convinced that I have ch. One of my clints insisted that she drive me to the hospital when she saw the tears running down my face. She kept telling me to lie down, and I kept stadding up. Kind of hummorous; if I wasn't on a deadline. I can not afford a neurologist that I can rely on. IC in colorado will help with a general practicioner, but not specialists, and I'm still paying off the $900.00 for the guy to read the #@%@ MRI. I've gone back to school too get a better job with benifits, but with this episode hitting the first 4 weeks of the class. She (the teacher) just posted extra credit, bt it is not avialable to anyone who has missed more then 2 class periods. I'm still getting a high C, but figure to get into the school that I want to I need a B or higher. Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)
WOW I was just going to write a short note about myself, I guess I needed to vent alittle. Thanks for listening. [smiley=confused2.gif]

Title: Re: WELCOME! new and poor
Post by Jonny on Mar 8^th, 2006, 7:21pm

on 03/08/06 at 17:50:54, Colorado_Loki wrote:

Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)

How can I say this in a nice way?

Your Doctor is a fucking idiot and knows nothing about CH pain if thats what he told you!!

Plus, your Verapamil dose is way to fucking low, talk to his ass about that!

Keep reading, you have alot of that to do if you have only been in this game for a year!

Arm yourself with Knowledge!

Title: Re: WELCOME!
Post by shenke on Mar 8^th, 2006, 8:15pm

I agree- Jonny, and nobody could have said it better!!!

This is the only place where you can get good info.

PF now for almost 1 &1/2 weeks...yea finally after 35 + days. Now, I sound like a weenie.

Thanks to everyone here!!

Sheila

Title: Re: WELCOME!
Post by Jonny on Mar 8^th, 2006, 9:12pm

on 03/08/06 at 20:15:08, shenke wrote:

PF now for almost 1 &1/2 weeks...yea finally after 35 + days.

Congrats Kid, PF talk is always welcome here....it gives folks hope.

Weenie?.........I dont think so!...Nuff said!

I hope you sleep well, its one thing we all need.

Title: Re: WELCOME!
Post by shenke on Mar 19^th, 2006, 7:41pm

Thanks Jonny- sure wish I could meet everyone someday. This place has been the greatest gift. Told my husband about the gathering - he thought I was crazy. But everyone here at this site feels like family.

Guess I was crazy for a while, just glad to be PF now. Need a break!!!

Ready for a drink too, just scared. Think I might give it a try in a few weeks...time to celebrate!!!

Sheila

Title: Re: WELCOME!
Post by ai on Mar 20^th, 2006, 12:37am

Hello all,

I am so glad that I found this board. I haven't had a CH since 1999 until last week. I woke up with the worst feeling, not only in my head but just thinking that this was beginning again. Last time it took me 6 months to get over the cycle. It was pure hell. Now 7 years later I have three children all under the age of 4 so I am really scared. The last time I had them blood pressure meds and beta blockers did not work. The only thing that did was periactin (antihistamine). I loved it because I felt better but I hated it because it made me sleep about 13 hours a day. With three kids I am really between a rock and a hard place on that one. I am so happy there is a med that helped me but I don't know if I can function taking it now.

My doctors had a hard time even figuring out what was wrong with me years ago because I am a woman and women apparently don't get them as much as men. I told them that I had done the research and I knew they were not migraines but clusters. I feel the burning starting in my head now and I am so scared to go to sleep because I know I will wake up again with one. Last night I had one at 2 a.m. that was the worst I have ever had. Childbirth for me was no where near to that in comparison. I thought I was going to die. I was screaming, rocking, banging my head. This one took 60 minutes to go away which never happened before.

So I am going to try Allegra (non-drowsy antihistamine) that I am sure won't work as good (or if at all) as the Periactin did. My doctor thought it would be more safe than falling asleep on my three kids apparently.

Anyone else had luck with Periactin or any other antihistamine (sp?). I am so glad I found you all. I am sure it will make this cycle more bearable to have people to talk to!

Title: Re: WELCOME!
Post by maffumatt on Mar 20^th, 2006, 12:55am

Hello Ai, sorry that you had to have a reason to find us but glad you did. Read all you can, there is a wealth of information here if you take the time to look it up. Start a new thread here and introduce yourself, more people will respond. They kinda get lost in these longer threads. Reading your post it looks like your Dr isn't that informed on CH. Post what you have taken before and what your takeing now so that the more experianced people here can have a look. Anti histamines have never done much for me, nothing over the counter has. Anyhow hate that you had to find us but glad you did.
Matt

Title: Re: WELCOME!
Post by nani on Mar 20^th, 2006, 12:56am

Welcome, ai. Sorry you have to be here, but I'm glad you are. There is lots of info and support here.
I've never had luck with antihistimines, and they are not a standard CH treatment. Look over on the left at the oxygen info link. It's very effective when used properly. Here is a link for standard CH treatments. Most people use a preventative and an abortive. Print these and take them to your dr. You should be able to get a prescription for oxygen and some meds as well.
http://www.ouch-us.org/medications/medications.htm
Read, read and then read some more...information is your best weapon.
pain free wishes, nani

Title: Re: WELCOME!
Post by ai on Mar 20^th, 2006, 1:17am

Thank you both so much! I want to post a new thread but I haven't figured out how to do it. I'm not used to this type of board yet I guess :) I really appreciate all the advice! I will check it all out. This site is great. I will try and post a new thread tomorrow to introduce myself. I'm about to try and get some sleep (until the monster wakes me up). Unfortunately, I feel so much pressure building in the right side of my head that I know I'll be back up again soon! Thanks again!

Title: Re: WELCOME!
Post by Cluster14747 on Mar 24^th, 2006, 12:48pm

After a 3 year absense, I am back. Remission is bliss, but the support here is incredible.

I am more frustrated than anything. Feeling like a walking science experiment of Imitrex, Topomax and Stadol.

Challenging this prick of a beast each time I feel a tingle in my nostril or a twitch of my eyelid. I'd rather fight than be drugged. Has anyone had success with O2 or water treatment ? thanks,

Title: Re: WELCOME!
Post by cluster_mom on Mar 24^th, 2006, 8:04pm

I'm not quite sure how these message board things work but its worth a try. I have been suffering from clusters for 7 years now and I'm about three months in this time around. and hoping for some relief soon!!!

Title: Re: WELCOME!
Post by Charlie on May 7^th, 2006, 1:10pm

Welcome everybody but sorry you are here because of having to deal with this horror. We all do or have done so. I've been free of it for about 15 years but I feel at home here. I don't know why the beast is afraid of me. There are some stories about an age factor. I'm 59 but for some, CH started in middle age. It drives me batty.

Anyway, these goons know of what they speak. Lots of good stuff here.

Here is something that worked for me most of the time. It ain't easy but it's worth the effort:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Greetings from Spain
Post by DGJ on May 31^st, 2006, 3:50pm

Hi people

First of all, excuse me for my awful English.

My name is Daniel and I'm suffering CH since 2001. I'm male, 38 years old and got what I call myself the "standard" CH (mean, 20-30 days cicles once a year -usualy December, but this year... MAY!!!, grrrr-, waking up 2 hours after going to bed with the headeache, oneside insane pain, left eye burning, etc.). I must confess I smoke (and too much) and the only known trigger is alcohol when the beast is working. I'm also diabetic. Well. That's just the start. I wanted to introduce myself. Hope to keep on touch.

Thanks

Daniel

Title: Re: WELCOME!
Post by sandie99 on Aug 1^st, 2006, 10:48am

Daniel,

Welcome! :)
You'll find lots of information about ch right here at this site. And lots of people who know what you're going through. We come from around the world and we're here to help when you need advices/vent.

Best wishes & PF time,
Sanna

Title: Re: WELCOME!
Post by lvictor2 on Aug 1^st, 2006, 6:00pm

My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois. I have epilepsy and sleep apnea...not that those are related. I've only had one seizure in 1981 and been on dilantin ever since. I use a CPAP for apnea. The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness) and found almost immediate relief. In my first episodes I had tanks of O2 (2004). Then I got an oxygen concentrator which filters out the gases out of the air except oxygen. This way I can use it anytime I need it when I'm home...although I cant take it with me. I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house. I searched the site and found some I might ask the MD. about. The episodes have been getting worse each year...that is more intensity and more headaches per day.

Today is the worst day ever...I had 8 episodes. With the O2 it doesn't get past 10-15 minutes. How will I go to work???

Then I had 24 hours free...but...the demon is baaaack!!!

Larry

Title: Re: WELCOME!
Post by kazzie on Aug 19^th, 2006, 2:55am

hi...my name is kaz and last friday i had my first headache...Ive never been one to get a headache but have had INCREDIBLY painful headaches above my right eye at 9.00am every day since. It goes from 0-painful in about 30 seconds! my eyelid goes droopy too. I sometimes feel like I'm going to pass out. About 12ish I'm feeling better. No painkiller as yet has touched it. The doctor says I have cluster headaches. I'd never heard of them so feel a little bit afraid. I'm a teacher and am worried because I dont know how long this will last, how long a break I'll get before the next 'lot'... It was great to find this site! I don't think I'm suffering anywhere near as much as many of you, but it's reassuring to know there are other's I can 'talk' to. I have 2 little ones to look after so this all seems a bit daunting at the moment. I'm looking forward to 'meeting' you all. :)

Title: Re: WELCOME!
Post by LeLimey on Aug 19^th, 2006, 4:57am

Hello Kazzie its nice to meet you!
Has the doctor given you any meds yet or has he referred you to a neuro? Don't worry, we're going to do all we can to help you. :)
Helen

Title: Re: WELCOME!
Post by kazzie on Aug 19^th, 2006, 7:20am

Hi Helen,
I've been given 3 different things! I was on holiday when they started so saw a different doctor to my usual one. The first was maltex melt which I was to use when I got a headache...that did nothing so was then given something beginning with v (not much help I know but my own doc kept them as didn't think suitable) they were more for heart conditions so not sure why I was given them. My own doctor yesterday gave me Amitriptyline which apparantly is a low dosage of anti-depressant which he says can be effective in preventing the headaches. I took 1 last night but did get a headache this morning. It wasnt as intense though so maybe helped? I do however feel spaced out and weak which I guess is due to the tablet. I'd really appreciate any advice!! :)

Title: Re: WELCOME!
Post by Charlotte on Aug 19^th, 2006, 10:07am

on 08/19/06 at 07:20:15, kazzie wrote:

Sorry to meet you here, but welcome aboard.

The maxalt melt is an abortive. It doesn't work for everyone, but if you use it at the very beginning it does work better.

The v is probably Verapamil. It is a preventative which works for many people, but not all. It takes a while to get into your system.

The antidepressant also works for some people and takes time to get in your system.

Since ch and related headaches are rare (in the medical community but not here), most of these medications were found to help as a side effect to the original purpose. Many vascular and anti seizure medications may help. Finding a treatment plan may take awhile. Sometimes the cycle is actually over before you have a working plan.

Did anything give you relief?

If not, ask the doc about 02 and injectable imitrex, next.

Charlotte

Title: New kid
Post by jenhogan on Sep 3^rd, 2006, 10:09pm

Hello everyone, I'm back again after a few years departed.

I'm Jen, the wife of CH Doug. We have been married for 13 years, and have 3 kids...Doug has been a cluster headache sufferer for 8 years.

I guess that's all for now. I'm just looking for a way to network with some people who understand what he and I go through. He is in a long cycle right now, as this is the absolute worst time of year for him.

I was wondering, is it typical for the peaks to happen seasonally? August and September are always really bad for him.

Thanks everybody! I'm glad to be back.
JenH

Title: Re: New kid
Post by Richr8 on Sep 26^th, 2006, 11:30am

on 09/03/06 at 22:09:58, jenhogan wrote:

I was wondering, is it typical for the peaks to happen seasonally? August and September are always really bad for him.
JenH

Seasonal attacks are very common for episodic sufferers. For fifteen years my attacks have always occurred in the fall (Sep-Nov). I did have one rogue cycle in the sumer of 2005 following an injury to my neck. Unfortuntely, my typical fall cycle still occurred although a little later than normal.

Title: Re: WELCOME!
Post by TxBasslady on Sep 26^th, 2006, 12:12pm

Hi Jen,

There's an area on this board where you can interact with other supporters, it's the "Supporter's Corner".

There's some great posts there...and lots of supporter's who give their idea and thoughts on how they support their significant other.

Welcome back...

Jean

Title: Re: WELCOME!
Post by Ozark_E on Oct 6^th, 2006, 12:15pm

Hello, I am the newest of Newbies.

But I am not new to Clusters. I am in my 6th cycle since 1993. From onset they had generally recurred every 24 to 28 months, with cycles lasting 5-8 weeks. This past time, I had a 36-moth reprieve. I thought I was in the clear. Then about 3 weeks ago I started getting (non cluster) headaches every other day for about a week. And finally, the tell-tale red-eye, sinus-drain, cluster.

The doctors have been great so far. I got in to GP and the Neuro within a few days. That was all about 8 days ago. They started me on 60mg prednisone per day. I start tapering by 5mg per day today. They also started me on 50mg Topamax per day then. I start ramping up on it today. Within the first few days of the Clusters return, I successfully aborted a few onsets with Imatrex shots (full 6ml, perhaps overkill), and even with 25ml Imitrex pills. For the past 5 or 6 days, the prednisone and topamax have kept CH in complete check. I have had a few minor tinges in my temple, but have not needed imetrex at all.

Of course, as I taper off prednisone, I am concerned that CH will sneak back in. And as I ramp up on Topamax, well, I am concerned about the side-affects. But that is my boat for the moment. I just wanted to say hello, let folks know that I am managing ok, and that perhaps Topamax is doing some good for someone. We'll have to see. Hang in there.

Title: Re: WELCOME!
Post by bleederbill619 on Nov 13^th, 2006, 6:36pm

I'm glad I found this area; Previously, I thought I was suffering from migraines, but now firmly believe they are CH. Been a sufferer since early adulthood (I am now 49). The symptoms match anyway. It is truly amazing after reading so many letters that so little is known about this condition and treatment.
So, if I have a method of treatment that works for me, should I run it past Dr. Greg first or should I post a new topic in "what works" area?

Title: Re: WELCOME!
Post by E-Double on Nov 13^th, 2006, 8:42pm

Hiya Bill,
Hope you're not still bleeding ;)
To be honest, I do not think that Doc Greg is still around.
Please feel free to post anything on what seems to be the appropriate board.
Good luck on your journey and please share your experiences and why you may now believe that you have CH.
Start with the Cluster Quiz though it is not a true diagnostic tool it is pretty damn close for us.
You may also want/need to find a Headache Specialist who is CH knowledgeable.
There are several HA types that present similarly yet differ in duration and responsiveness to medication so it is important that you receive the proper diagnosis so that you will get the appropriate treatment.

Good luck!

Ex2

Title: Re: WELCOME!
Post by buffster on Nov 19^th, 2006, 5:57pm

Hello everyone. I am a 37 year old female. I have been pf for about 7 months. the ch is coming back again. I pray that it will stay away, but the tinge i feel is all so familiar. I don't know what to do, since i got a new job working at night. That's when the ch starts. There is no way i can get through this. I am raising 5 children and a grandaughter on my own. Any sugguestions would be helpfull. oh and my younger brother is also a ch sufferer. Wishing everyone a pf day.

Thanks, karen

Title: Re: WELCOME!
Post by edbeek on Dec 7^th, 2006, 10:15am

Hi all, I've been suffering CH since 1985. The first 10 years were misdiagnosed and untreated(I lived 500km from doctor), followed by 5 yearly cycles successfully aborted with cafergot, and 5 years of complete remission.
I wasn't too concerned this year when I felt the familiar signs return. Cafergot will do it's job. But it didnt have any effect at all.
Thats when I started studying this site, and learning more about CH because from my past experiences, our doctors are clueless.
I had a short course of prednisone, which made my CH worse, and irregular during the taper.
Last doc visit, I was given Voltarin. I just shook my head and vowed never to return.
So I am again unmedicated and waiting for the cycle to finish. (been 7 weeks now)
I make a strong coffee as soon as the CH wakes me, and I find that the pain subsides a lot quicker. Most of my CH are Kip 7-9, but mostly only last 20-30 minutes.
I know I should seek better medical advice, but my nearest clueless doc is 100km away, and the nearest neuro of any description is 500km away.
Anyway that's my story.

Title: Re: WELCOME!
Post by AussieBrian on Dec 7^th, 2006, 11:37pm

G'day Ed, and welcome aboard. Your story is just so familiar there's any number of us here could have written it. Glad you're getting some relief at least with coffee and there's lots of others attacking Red Bull with great results. Seems to be the caffiene and some other stuff called taurine that Barry in WA knows much more about than I do.

Either way, stay well and we look forward to hearing more from you.

Cheers and beers,

Brian up north.

Title: Re: WELCOME!
Post by edbeek on Dec 8^th, 2006, 4:06am

G'day Brian, Thanks for your reply. I have tried RedBull a bit, when I was away from home and had no access to coffee. Maybe I wasn't catching the CH early enough, but the RedBull would ease the CH back to a shadow but it would quickly rebound bigger than before.
I find the frustrating thing about CH is the variability of the success of treatments. Sometimes a massage of my temple, or the knot in the back of my neck, seems to relieve it immediately, and next time it makes the CH worse. I got 2 PF days/nights with prednisone, but the next week was the worst of this cycle.
One thing I am pretty certain of is the frequency and severity of my CH episodes is directly related to how idle I am during the day. This directly affects how much I smoke. Luckily I have a pretty physical job, and smoke about 20/day. On these days, I usually only get 1 episode during the night. If I'm office-bound, i tend to smoke more, and then I will get at least 1 or 2 before bedtime, and 2 during the night, and wake in the morning with another brewing.
So I tend not to complain too much about my CH because I know I can make the biggest difference myself, if I would just give up smoking.

Title: Re: WELCOME!
Post by AussieBrian on Dec 8^th, 2006, 8:49pm

on 12/08/06 at 04:06:18, edbeek wrote:

I find the frustrating thing about CH is the variability of the success of treatments.

Oh don't we know about that! Finally find the wonder-drug and complete cure and next time round not a sausage.

The upside is that treatments that have failed in the past might work this time.

Title: Re: WELCOME!
Post by Barry_T_Coles on Dec 13^th, 2006, 11:06pm

Hi Ed
Barry from Karratha here, welcome to the best little nut house around.
There’s an absolute shit load of info here, what the people here don’t know about CH probably isn’t worth knowing.
I see you have tried the Red Bull, it’s a goer for me with the little hits when I get them now, the trick is to belt it down the throat as quick as you can & be icy cold.
Oxygen is my best abortive and works a treat for me, I have found a way around getting oxygen without having a prescription & the cost is comparable, if you want more info just PM me & I will pass the info on.
I’m chronic so I treat myself differently to what you may need but the principles are the same.

Cheers for now.
Barry

PS if you click on the Mushy's.com link at the bottom of this post it will take you to Mr Happy's site that holds the info on o2.
Cheers

Title: Re: WELCOME!
Post by edbeek on Dec 14^th, 2006, 12:44am

Hi Barry, Thanks for the welcome and the info.
You are right about this place. I've learnt so much in the last week or so. I think one of the most valuable thing I've learnt is how fortunate I am compared to others here, and I tell myself this during every CH attack.
I'm hoping my cycle may have ended as I've just had 2 PFdans, and it's been a 9 week cycle.

Title: Re: WELCOME!
Post by tdow on Dec 22^nd, 2006, 2:28pm

I am new here. I recently have been diagnosed with Cluster Headaches. I have been suffering from episodic types for the past 6 or seven years (Or longer). but was finally diagnosed by the ER doctor on the 11th.

I get them every year at this time, but this year takes the cake (The most pain I have ever felt).

I have been put on hydrocodone for the pain, but that does not usually take it away, but it does dull it and helps my left eye from watering. My cat scans I had recently came back negative so my brain is clean.

I have not started any drug therapies, but I know I don't want to be hooked on narcotics for pain.

Does anyone have a suggestion or recommendation?

Title: Re: WELCOME!
Post by Redd715 on Dec 22^nd, 2006, 2:43pm

This scares me, because some docs are just idiots. Codine is not the way to treat CH.

Let us try to help get you sorted out, and make sure we know what we are dealing with.

Please take the cluster quiz on the left side there and let us know how you come out, and then please let us know how this particular beast effects you. How long are your cycles, how long is each attack, what behavior do you have when getting an attack, whats worked in the past for you to help east the pain?

We want to help you, and knowing this gives us a good starting point.

Title: Re: WELCOME!
Post by tdow on Dec 27^th, 2006, 10:40am

Thanks. I did, and failed. I get a pressure on my lower neck. This pressure with a dull ache on my left side. The ache starts to move up my neck and into my left ear, then starts to get sharp. It then moves behind my left eyeball, and the stabbing sensation starts. Sometimes it does not get that far and lingers around the orbital bone. Sometimes I get tinea when I experience these headaches. Sometimes it gets real painful bad. Nothing takes the pain away when it gets like this. It woke me up during my sleep a couple of weeks ago. That is why I had went to the ER. The searing pain. I tried every homeo pathic remedy and nothing seems to work.

It has been suggested to use Riddiln, lythium, Oxygen, Immetrix injectable and other things.

Deep breathing has seemed to help in the past, but usually it takes about 15 minutes or longer for this to work. Also my left nostril flares up like I have allergies. This happens when the pain has moved into and behind my eyeball (Optic nerve?).

It seems that I have a lingering sense I am not out of this cycle activity yet, but I feel I am getting close.

I am satisfied with the diagnosis, but I am seeing my GP next week for further evaluations any suggestions when I see him?

Title: Re: WELCOME!
Post by nani on Dec 27^th, 2006, 10:53am

Hi Tdow. Over on the left, click on the Oxygen info link. Print that out and take it to the dr.
Also, print this page:
http://www.ouch-us.org/medications/medications.htm

These should help get you the treatment you need.
pain free wishes, nani

Title: Re: WELCOME!
Post by tdow on Jan 3^rd, 2007, 10:48am

Nani and Redd,

I went to my primary care doctor yesterday.

He reviewed my cat scan, did a full check up, and went through a similar checklist. He gave a me a sample of Imitrex nasal spray 20mg which I ended up using last night. It completely killed the headache. So far so good.

Thanks so much for your advice. Talk to you later....

Tom :)

Title: Re: WELCOME!
Post by paulc on Jan 7^th, 2007, 10:26am

Hi I am Paul. I have been a CH suffer for many years but only got diagnosed 2 weeks ago, brill now I can do somthing about it. Like many I stumbled on this ace site when searching for answers about CH.
Previously I have had cocaine sprayed up my nose and my sinuses drilled and 20 months ago on my last encounter with CH I was diagnosed with Neuralgia, prescribed tegratol and nearly died from Stephen Johnsons Syndrome, "greeeeeeeeat" but having seen so many doctors and surgeons over the past 20 or so years funnily enough it took a phone call from accident and emergency to a ward doctor who made this final doagnosis over the phone, again "greeeeeeeat", no more needles in the spine to take spinal fluid, no more crap drugs etc, it may seem silly that you can be in so much pain but feel better for the simple fact that you know what it is you are dealing with.
Thanks to all of you for welcoming all us new members to this site, its great to know that there is someone out there with more knowledge than the flipping doctors. I just need to get my wife to visit this site too, she may understand better and not get too worried when my next attack of the clusters appears.
I am in my 3rd week of the present cycle and I think the worst is over (fingers crossed), but again thanks for the welcome and for keeping a good and friendly site going.
Paul

Title: Re: WELCOME!
Post by pubgirl on Jan 7^th, 2007, 11:35am

Hello Paul

It sounds like you are on the right road now, after an all too familiar story of misdiagnosis and mistreatment.

Make sure you get the correct treatment this time (the only licensed treatments in the UK are subcutaneous sumatriptan - Imigran injections, and high flow rate 02) so you can insist on these now you have your diagnosis.

Also, we have an OUCH in the UK which is very active and has many hundreds of members (sufferers and their supporters) and a Helpline manned by knowledgeable, trained sufferers.
There is a Support Board at www.clusterheadaches.org.uk from where you can become a member and talk to and even meet other sufferers in the UK. Helpline number is 01646 651 979.

Hope to see you both over there?

Wendy the Brit

Title: Re: WELCOME!
Post by tdow on Jan 22^nd, 2007, 10:03am

So 20mg Immetrex Nasal Injector seems to have solved the onset of the attack and has totally killed the attack after about ten to 15 minutes while it is full bore.

The bad news is, my insurance will not fill more than 12 in a 30 day period. I am in the process of getting it waved, and can only pray it gets approval.

Prevent: My MD prescirbed a beta blocker (Inderal) as I was skeptical of the effects of Topamax. It did not work of course, had about a 5 on the kip a couple days after trying it. Is there something else that works better than Topamax? I have spoken to several people who have tried Topamax and said it made them stupid.

I am three months into this cycle and have only had two days repreive.

Title: Re: WELCOME!
Post by LeLimey on Jan 22^nd, 2007, 10:12am

Hello tdow, nice to meet you.
Have you tried verapamil? Its considered as front line defence against CH and is frequently started with a prednisone taper which holds attacks at bay whilst the verap kicks in. It is a blood pressure med so you will need regular ECG's whilst increasing the dose.

Pred tapers are commonly around 80mg for a week then reducing by 5mg every 3-5 days. Your doctor or neuro would obviously decide on a regime for you based on your medical history.

Verap doses vary, some people get relief at as little as 360mg, 480mg is a common dose whilst some again need to go to 960 mg per day in order to get relief. Its completely personal, we all differ and you just have to persevere until you find the dose that works for you.

Verap used in conjunction with Lithium is also an effective treatment combination.

Obviously your doctor knows your history and what options would be best suited to you but these are options which it would be well worth you discussing with him/her.

Let us know how you get on or if you have any further questions, we're always happy to help.

Have you looked into some of our self help options here such as use of ice or heat, coffee or red bull? There is a wealth of information on this site to fight CH so think of it as a treasure trove and wade right in! As I said, we'll help you all we can

Regards
Helen

Title: Re: WELCOME!
Post by tdow on Jan 22^nd, 2007, 10:40am

on 01/22/07 at 10:12:36, LeLimey wrote:

Hello tdow, nice to meet you.
Have you tried verapamil?

Pred tapers are commonly around 80mg for a week then reducing by 5mg every 3-5 days. Your doctor or neuro would obviously decide on a regime for you based on your medical history.

Verap doses vary, some people get relief at as little as 360mg, 480mg is a common dose whilst some again need to go to 960 mg per day in order to get relief. Its completely personal, we all differ and you just have to persevere until you find the dose that works for you.

Verap used in conjunction with Lithium is also an effective treatment combination.

Regards
Helen

Helen,

Thanks for the information. I have not gotten that far yet. I most certainly do not like these headaches. I have been misdiagnosed for the past 4-5 years and would love an immediate and permanent fix to this cluster headache problem.

The doctor does not want to treat me with BP meds for this. I have tried Ice. It does seem to calm it down during an episode but I only am able to use it during the day. When I wake up with one, I am usually full bore.

I have been two days without a epsiode, and I just got the first one prior to posting this morning. It is unusual that I would get one this early in the day. I will be wore out the rest of the day because of this.

I will continue to log my treatments success and failure.

So far: Imitrex NI 1, Inderal 0

Title: Re: WELCOME!
Post by brewcrew on Jan 22^nd, 2007, 10:45am

on 01/22/07 at 10:40:53, tdow wrote:

I have noticed red bull does help, but I cannot sleep after drinking a can.

Hmmmm....let me see. Lose a couple of hours of sleep or slam my head into a wall repeatedly.....which should I choose?

If your pain is similar to most around here, there's not really a choice to be made.

Title: Re: WELCOME!
Post by LeLimey on Jan 22^nd, 2007, 10:53am

I have a very low BO so verap wasn't a successful option for me as I couldn't get to a high enough dose for it to be effective (kept fainting ::) )
There ARE other options though, keep reading on the site, there are lots of other peoples experiences and you will definitely find other options which you can take to your doctor.
Do most of your attacks occur during the day or night? Melatonin is another option for night time hits that you may want to look for posts in regard to and ignore Lithium's more common useages, it has become an effective med for CH and is well worth considering too.
Personally I find red bull and its cheaper equivalents to be the most vile revolting stuff ever to have to drink - but given how it can stop a hit in its tracks for me I have learned to have a love/hate relationship with it! I prefer strong coffee but a can of red bull is more practical to dig out of the bottom of my handbag LOL
Have a read through the meds and ch specific boards and ask all the questions you want, we all remember what its like to be new and how it can seem like information overload. Take your time, remember there are NO stupid questions if you need to know something and keep your chin up.. we'll help you through this!
PFDANS
Helen

Title: Re: WELCOME!
Post by tdow on Jan 22^nd, 2007, 3:05pm

on 01/22/07 at 10:53:06, LeLimey wrote:

Helen,

The worst is at night between 1-2 AM. I will wake up in intense pain behind my left eyeball. It completely dibilitates me.

I get them usually in the morning and in the afternoon. Usually get them after I work out. Working out reasolves the shadow, but the shadowing always comes back.

I am not here to spill my life story, just to seek peer advice and learn more about my disorder.

Brew,

I appreciate your feedback. I will try it and let you know how it goes.

Tom

Title: Re: WELCOME!
Post by LeLimey on Jan 22^nd, 2007, 3:20pm

Tom alot of people find melatonin very effective for night time hits, you might want to look for posts on it on the meds board and consider whether its an option for you or not.
As you've found, excersize is a big trigger for a lot of people but then again, some people find it will abort a hit. For me thats one of the most aggravating things about CH, the way that it affects us all differently and often at opposite ends of a spectrum. It makes it harder to find options but by knowing our triggers and patterns we can put the pieces of our individual jigsaws together and aim to come up with a plan that works for us.
I don't want to pry into your life story but some basic questions will help with suggestions, just don't answer anything you don't want to!
Helen

Title: Re: WELCOME!
Post by Chrispah on Feb 23^rd, 2007, 3:42pm

HI,
I am new to this website and am searching for answers. I spent most of my day yesterday in the ER with horrific head pains. Starting close to the back of my neck on the right side and shooting up behind my ear. This isnt my first bout with them but it was bad enough to beg for someone to make them quit. I had these extremely bad about 10 years ago and sought a neurologist to help give me some answers. He instructed me to get rid of the stress in my life. ;;D( I kindly told him that was illegal and that I could go to jail for that) He gave me an anti - inflammatory and told me to take ibuprofen along with it. It didnt cure them it made them more bearable so that I didnt have the desire to die. I had them perodically on and off for the last 10 years.. but never having them come so often and so extreme as they did back in the 1990's and yesterday. The doctor at the ER told me that they sounded like cluster headaches and gave me imitrex and some lortab. I have found that the imitrex works but it takes so long for it to kick in. That the hour or two that it takes to make them stop.. is hell. I just sit and hold the back of my head and cry. My husband feels horrible and so do my kids cause they want to help. I question if it is really cluster headaches. I am not male.. and i dont see them come in cycles like most of you talk about. I just want some answers.. I want to know if any of you can give me any advice .
Look forward to hearing from you..

Title: Re: WELCOME!
Post by thebbz on Feb 23^rd, 2007, 6:11pm

Hang tough do some reading here and
http://www.ouch-us.org/chinfo1.htm
here
Check your pms...in the upper right of the screen
good luck
jb

Title: Re: WELCOME!
Post by Linda_Howell on Feb 23^rd, 2007, 7:45pm

Chris, If it takes 2 hours for the Imitrex to take effect they must have given you the tablets. They are useless. Make them at least give you Imitrex nasel spray or better yet...the injectables. You'll see results in less than 10 or mions. Not 2 hours.

Title: Re: WELCOME!
Post by santa on Mar 11^th, 2007, 2:24pm

thanks t_h_b!

Santa ;;D

Title: Re: WELCOME!
Post by DannyV on Apr 18^th, 2007, 10:28am

on 03/29/04 at 22:20:23, djsdds wrote:

Only IMITREX INJECTIONS work on us. The pills and sprays are a frigging waste. IS your doc telling you that Imitrex injections Are not for clusters? If so, He is in the dark ages.---Danny V

Title: Re: WELCOME!
Post by Guiseppi on Apr 18^th, 2007, 10:45am

And then lovingly, but FIRMLY, tell him that women DO get cluster headaches. They used to classify everything about womens heads as migrains. As many of our beautiful ladies here will attest, CH is not an exclusively male club! (don't tell that Howell lady I admitted that)Sounds like you have a lot of reading to do, and then you have to educate your doc! Good luck and welcome.

Guiseppi

Title: Re: WELCOME!
Post by MR_FLOOR on May 13^th, 2007, 11:44am

Hi nab I'm from IL also I was wondering if your husband has tried Diamond Headache Clinic I've had great sucsess with them.I'm also on Verapamil (Calan) for 14 years .it works great for me tell hubby good luck and stay pain free [smiley=laugh.gif]

Title: Re: WELCOME!
Post by Brewcrew on Jul 1^st, 2007, 2:53pm

on 04/18/07 at 10:28:45, DannyV wrote:

Only IMITREX INJECTIONS work on us. The pills and sprays are a frigging waste.

Speak for yourself. Lots of folks around here get relief from the nasal spray. Not quite as fast, but helpful nonetheless.

Title: Re: WELCOME!
Post by sldrswyfe on Jul 13^th, 2007, 1:50pm

W E L C O M E ALL!!!

If you have been fortunate enough to find this board early into your diagnosis...you stumbled into a gold mine.

If it has been years of feeling crazy, isolated...(I didn't get here until thirteen years of being chronic and not knowing a soul like me...) Those days are officially over right now.

We KNOW. We BELIEVE you...what you have IS REAL and VERY, VERY PAINFUL and effects your entire life.

Im so glad you all made it. It's ok. Sherri

Title: Re: WELCOME!
Post by Kali... on Jul 23^rd, 2007, 10:19am

Hello there!!

I am 32 years old, married w/ 3 wonderful teenagers. My headaches began 6 years ago and I just recently got diagnosed w/ ch. I am taking medrol, frova and limictal. Of course, this crap isn't working.

My boss is the one that referred me to this site, since her husband has been suffering from ch for years.
I feel she really does understand my pain, although, I wonder how much time I really can be off of work before I get the boot. That stresses me out as much as the headaches.

I have taken so many medications I have forgotten half of their names. I have had depo infusions and been placed on antidepressants. I hate taking pills and shots suck. Many trips to the er, make them treat you like a freaking junkie and dr's that seem to really not have a clue and use you as a test pilot for their new ideas.

My dr has now told me to stop taking my hormone pills and wants to send me for a sleep study. Ok fine, now am looking at making myself and my family even more miserable. Which scares me thinking these headaches could possibly cause me to loose my job and my husband from being a menopausal, head pounding psycho bitch from hell. I don't want that. I just want to be normal and not stay awake for 2 days at a time to fight away the waking up w/ a pounding headache. But as I have learned no sleep brings them on as well.

Please shed some light my way!!!!

Title: Re: WELCOME!
Post by ochreluna13 on Jul 24^th, 2007, 2:13pm

Hello, everyone! Just wanted to introduce myself without creating a new thread. I have not been diagnosed with CH yet, but am certain I will soon, as once I started doing some research on the "migraines" the doc said I have, it turns out they are not migraines at all... I am currently seeking a doc with some CH experience, but they are hard to find...

In late November, I began getting daily headaches in the morning, usually as soon as I woke up. They are usually on the left side of my head behind my eye, like someone is stabbing me there and twisting the knife. My eye was also read, and I had and unusual amount of tearing and drainage from that eye/nostril. I was treated for allergies and migraines. (despite the lack of nausea, sensitivity to light/sound, auras, etc. but I trust the doc, so who am I to judge?) The treatments did not really work, and then in late January, the headaches stopped. I was the happiest woman on earth!

A week ago, the headaches started again. Same symptoms. Early in the morning, usually upon waking, though fortunately have not woken me up. I will get about 4-5 a day, every day. Several times I've asked my poor husband to shoot me. Fortunately, he's not that kind of guy. Yesterday, I began reading as much as possible about different types of headaches, and was in SHOCK after reading about CHs. I could not believe that they existed and described my pain almost exactly.

I would like to know if there are any sites or places where I can look for a doctor that specializes in CHs so I can avoid misdiagnosis again? (Or, if I have misdiagnosed myself, who will be competent enough to eliminate CHs as an option if that is not really it)... I've had the requisite MRI, etc.

Title: Re: WELCOME!
Post by seasonalboomer on Jul 24^th, 2007, 2:39pm

Sorry to hear you had to find us.

Here is a link to a list of "sufferer recommended doctors"

http://www.ouch-us.org/chgeneral/doctors.htm

Maybe this will help.

Whether you use one of these or not it is a good idea to familiarize yuorself with the common treatments that are used for cluster headache prior to seeing the doctor. Bop around on the site and print as much as you can to toake with you to the doctor no matter what.

Scott

Title: Re: WELCOME!
Post by ochreluna13 on Jul 24^th, 2007, 2:43pm

Thanks so much Scott! That is so helpful! I don't want to insult the neurologist by switching, but at the same time, I want a higher quality of care than what I got. :(

Title: Re: WELCOME!
Post by DennisM1045 on Jul 24^th, 2007, 2:46pm

Hi ochreluna,

Welcome to the Family! I'm sorry you had to find us but you are in the right place.

There are some here from your area. I'm sure one of them will be along to give you an idea of who is good in NC. You can also use these links.

OUCH: http://www.ouch-us.org/chgeneral/doctors.htm
The American Headache Society http://www.achenet.org/

Good luck and I hope you find some relief soon.

-Dennis-

Title: Re: WELCOME!
Post by ochreluna13 on Jul 24^th, 2007, 3:28pm

Thanks! (kind of)

Everything I have seen here has been very useful! I really appreciate all the sites to find a doctor. I'm going to talk with my doctor on Friday to discuss this and try to get a referral to one of the doctors listed on these sites to avoid the previous neurologist, if possible... ;;D

Title: Re: WELCOME!
Post by ochreluna13 on Jul 24^th, 2007, 3:38pm

I meant the (kind of) as in, "Thanks, but I wish none of us was here discussing this kind of horrid pain!" :)

Title: Re: WELCOME!
Post by Sandy_C on Jul 24^th, 2007, 4:28pm

Hi, Ochre - I'm sorry I got to this thread a little late.

I live just outside of Greensboro - we're almost next door neighbors. I don't know that I can be of any help to you in finding a neuro in your area, but I do know that I've got a shoulder, should you need one.

I'm here daily (at least I try), but you can PM me any time.

Sandy

Title: Re: WELCOME!
Post by ochreluna13 on Jul 27^th, 2007, 12:53pm

Sandy,

Thanks! That is close!

I just went to the family doctor today, who agreed with me that my symptoms were much more like CHs than Migraines... so I have a referral back to the same Neurologist, but with another doctor's note on my symptoms and their diagnosis. Hopefully this will help in talking with the Neurologist. We'll see how long it takes for them to call me for the appointment. I had the Dr. call, because the first time I tried to make an appointment, it took 3 days for them to get back to me... They book about 1 month out or more... How unhelpful is that???

I have a dilemma, and was considering starting a thread... The hubby and I want to start trying to have children soon, but most of the meds I could take cannot be taken while pregnant.

Are there any therapies available that are safe for pregnant women??? [smiley=huh.gif]

Title: Re: WELCOME!
Post by turfman on Aug 13^th, 2007, 12:04am

Hi All
New to this site and my first post, I am Episodic and the cycles were tapering off. But last winter I had my longest session yet, (had just started a new job and it wasn't working out so the CH were just icing on an already bad cake.)
I had my first cycle when I was 20 and used Tylenol till I was 40 then discovered Imitrex. But the last cycle seemed to be Imitrex resistant, so I have started the search for something that will work now.
I will be researching this site alot in the next while, it seems to be a gold mine of info...

Title: Re: WELCOME!
Post by Guiseppi on Aug 13^th, 2007, 11:26am

Hey Turf, welcome to the nuthouse!!! Another one that had to wait forever to get a correct diagnosis, a little frustratiing isn't it? ;;D You haven't mentioned oxygen, it should be your FIRST line of abort. For me it will abort most attacks in less then 10 minutes, usually closer to 6.

You also didn't mention any preventative meds. That's something you take, while you're on cycle, that will reduce both the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, others use verapamil, topomax, there are many to research. Lithium was my miracle prevent as it allowed me to lead a "relatively!!! ;;D) normal life when on cycle. Welcome agaian to the board, I do hope you find some relief here.

Guiseppi

Title: Re: WELCOME!
Post by turfman on Aug 13^th, 2007, 8:19pm

I have a script for sansert (sp?) but haven't used it before so don't know...... I am curious about the Oxygen thing, it seems to be high on many peoples list.

Yeah the diagnosis took a long time but the health care system up here does leave a bit to be desired. It took over six months to get a neurologist referral.

Title: Re: WELCOME!
Post by barry_sword on Aug 13^th, 2007, 11:37pm

Hi turfman, sorry you are here. There is a ton of help and info here to help deal with the beast. Check out the o2 info to your left. IT WORKS!! :)

Barry

Title: Re: WELCOME!
Post by Putter on Aug 21^st, 2007, 9:35pm

Hi Turfman,

If you are willing to travel and can ask your family doctor for a referal, Dr Shapero in Markham is a very helpful doctor. The office is called: the Markham Headache and Pain Treatment Centre.
I use verapamil as a preventative and so far it is going well. I also use O2.
Good luck, from a fellow Canadian,

Leanne

Title: Re: WELCOME!
Post by tdow on Aug 22^nd, 2007, 1:48pm

I am back with a new cycle. I had the worst one ever last Friday...Felt like a electric transformer was in my head right behind my left eye.....

I had tried the riddlin factor and it broke the last cycle...

I had to stop taking it because of how much weight I lost...

So I just ate a imitrex and am ready for phaze 2 of finding a cure...

Title: Re: WELCOME!
Post by Guiseppi on Aug 26^th, 2007, 2:05pm

Welcome to the board, the bad news is there is still no cure. The good news is there are many options that'll help you manage these things.

You need a preventative, something you take that reduces the frequency and the intensity of the attacks, some of the more common options, verapamil, lithium and topomax. By themselves or in combo they provide relief for many.

Then an abortive strategy. DEMAND OXYGEN! It should be your first line abortive, no side effects, cheap and for me will abort in less then 10 minutes. I save imkitrex for only the rare occasion when 02 doesn't stop it.

Welcome to the board, hoping your cycle is a short one.

Guiseppi

Title: Re: WELCOME!
Post by AVN on Sep 27^th, 2007, 5:48pm

Hi All,

This is my first post.

I first remember getting clusters around the age of 28 (about 7 years ago). The pain usually presents itself with severe sensitivity to all external senses, particularly light and noise. Likewise, I seem to get nausea, but still tend to attribute that to the significant mucus flow into my stomach during a cluster. The pains usually start in late afternoon and turn on and off through the night, however todays started about 10am, signaling a particularly bad day... I went home at noon.

Of course, in my early days with this condition I kept asking doctors about it and they kept telling me it was sinus (because of the congestion and seasonality of it). The allergy drugs never seemed to work, but was usually able to get a little relief with sudafed and laying on my side with the effected side pointing up. This certainly was no fix, but had lessened severity.

Finally, a few months ago, I came across an article about headaches and first read about clusters. I went to my doctor and demanded that I see a headache specialist. After he argued that it was just a sinus headache for another 5 minutes, he ceded and gave me the referral. Last month, I finally saw my neurologist which diagnosed cluster, and gave me imitrex 100MG tabs (samples) for arrestors and verapamil for preventative. I have just started my last cycle a couple of days ago (just after equinox) and am very impressed with the imitrex. I haven't seen any relief with the verapamil, but I understand that takes a little time.

I have heard a lot about O2, but am reluctant because I travel a lot and cannot imagine lugging such an item onto planes (is this even allowed)?

A couple of questions for the crowd:

1) Do people ever go into complete remission? Or is this likely an issue I will deal with for life?

2) I have read through many of the boards, but haven't seen anything substantive about episodic becoming chronic from prescription drug use. If there is sound evidence, can you please share?

Here is hoping for relief for us all! :)

Title: Re: WELCOME!
Post by Guiseppi on Sep 28^th, 2007, 12:44pm

Howdy AVN! A couple of things.......it is hard to travel with oxygen but not impossible. And even if you just keep the 02 at home for the at home hits it's well worth the investment. Going on 30 years battling these things and it's still my first line abortive.

Verapamil takes about 2 weeks to ramp up and most people require a dose higher then docs are comfortable with. 480 a day tends to be midline with some going into the 960 mg a day range. Work with your doc as this isn't a dosage change you would undertake without his monitoring you.

I haven't seen anything posted by our resident docs and researchers that indicate prescription meds cause people to got from episodic to chronic, but many have posted that they feel imitrex injectables have extended the length of their cycles. There haven't been any studies done on that just the opinion of some who have tried it and thought their cycles went longer.

Yes sometimes they just go away. Jonny was chronic forever and woke up one day they were gone. Sailpappy is pushing a hundred years old......well maybe not but danged close...and they still haven't left him.

Welcome to the board, jump in with both feet, read everything and let us know how you progress.

Guiseppi

Title: Re: WELCOME!
Post by AVN on Sep 28^th, 2007, 3:44pm

Thanks for the information Guiseppi.

I tried a Maxalt today since I ran out of samples on the imitrex, and to my surprise it worked as well.

I will see how my first properly medicated cycle ends out and see about what is truly necessary for me. In the past, my cycles have only lasted 1-2 weeks, so I may not need the verapimil anyway.

-Andy (AVN)

Title: Re: WELCOME!
Post by DennisM1045 on Oct 6^th, 2007, 4:53pm

Hi Andy,

Another trick for travel is Frovatriptan. Helen suggested this to me. While I haven't had the chance to try it yet it is supposed to keep the beast at bay for 12 to 20 hours while you get where your going. You can't use it within 24 hours of another triptan (like Imitrex).

She suggested it after I posted that I ALWAYS get hit when traveling when in cycle about an hour after stepping off the plane. You can take it twice in 24 hours.

You can work with your O2 supplier to have an e-tank or two waiting at your hotel. Traveling with Oxygen isn't simple but can be done with a little planning.

Hope this helps and your cycle is a short one...

-Dennis-

Title: Re: WELCOME!
Post by kincorransw on Nov 21^st, 2007, 11:45pm

Hello. . .

I'm new to this board and would like to introduce myself. My name is Shannon.

I don't get all the abbreviations so please don't expect me to post them.

I have had cluster headaches for about 6 years now. At first I thought I had an abcessed tooth but the dentist told me to see a doctor. Saw a doctor, had an MRI ( I already have an arachnoid cyst on my brain so am used to the MRI routine). They found polyps in my nose and sinus cavities so they put me on Vicodin for the pain.

When I moved to Las Vegas I found a new doctor who told me I have Trigeminal Neuralgia. He, too, put me on Vicodin.

It doesn't hurt to brush my teeth, or any of the other symptoms of TN (wow, I used an abbreviation!). It wasn't until I switched doctors, and he asked the RIGHT questions, that I found out I have cluster headaches. And have for SIX FREAKING YEARS! I did have a "remission," as I didn't have any for over a year. Last week, however, they came back with a vengeance, which is why I'm here.

What in the hell helps this pain??????????????????

I don't have insurance so can't go to a neuro. . .

Title: Re: WELCOME!
Post by christophercheek on Nov 28^th, 2007, 2:10pm

Hello my mother-in-law told me about this site.
My name is Chris I've had CH for over 16 years now been to doctors, used oxygen, lithium and Imitrex among others. No relief, my longest remission has been 5 months. And it has just ended. again I'm afraid to go to sleep, I finally just do it just to get it over with I know i'm just hold off the inevitable.
I like this site and I beleive you'll be hearing more of me.

Christopher

Title: Re: WELCOME!
Post by Guiseppi on Nov 28^th, 2007, 2:57pm

How did your mother in law hear about it???? It's awesome that the word is getting out to people like yourself. Welcome to the board, here's hoping we can help. Have you read the oxygen link on the left yet? Many find oxygen failed them because of HOW it was used. Might be worth a second shot.

When you get a chance tell us what your current preventative routine is, what, if anything, you take to reduce the frequency and intensity of your attacks, and what you take when a headache starts. Maybe you can teach us something, maybe we can point you in another direction. It's what this board is really all about.

Welcome, so glad someone pointed you to us, like it or not you're family now!!! ;;D

Guiseppi

Title: Re: WELCOME!
Post by christophercheek on Dec 1^st, 2007, 4:25pm

Well I try to drink alot of water, to prevent. I try not to eat peppers bell peppers those sort of vegitibles they seem to be a trigger for me. I dont have a great preventative stradigy.

When one comes on some times i can stop it with my breathing. I take deep slow breaths in and out. I start pounding coffee if that doesnt work sometimes that well shorten them. IF one wakes me up I'm screwed I'm left pacing crawling on all fours cussing moaning trying not to slam my head into things I've done a lot of that in the early day and it does no good.

i'll talk to my Dr. about trying O2 again, It's worth a shot. i wont let them give me narcotics they dont work anyway.

Christopher 8)

Title: Re: WELCOME!
Post by Guiseppi on Dec 1^st, 2007, 11:56pm

You're 100% correct on narcotics, they are useless for the pain and pack waaaayyy too many problems.

For 02 to really be effective, you must breathe 100% oxygen, no otside air, no re brethed air, you must use a NON RE BREATHER MASK or a DEMAND VALVE. You need a regulator that can provide up to 15 LPM or greater air flow. Most can abort in under 10 minutes using oxygen this way. I so hope it works for you.

You also might wanna look into verapamil as a prevent, either alone or in combo with lithium many have found success. If coffee helps definitely try the energy drinks that combine caffene with the taurine, many can abort using only that.

Guiseppi

Title: Re: WELCOME!
Post by christophercheek on Dec 2^nd, 2007, 12:46am

I've been drinking energy drinks all day in fact I've had the shadow most of the day. And I'm just hoping it dosen't explode I'm going to the Dr. Tuesday or wed. those are my days off. i'll talk to him about the verapamil but the lithium has had adverce affects with me. oh. also I'm gonna take your advice and try the O2 again last time it was more irritating than anything but I was givin the nose tubes to use by the Dr.

Christopher

Title: Re: WELCOME!
Post by DennisM1045 on Dec 2^nd, 2007, 12:41pm

Hi Christopher,

You should read through the Oxygen info on the OUCH-US site, print the info out and take it with you to the Dr. If he perscribed nasal canula to you last time he'll probably need to see the research posted there to get the perscription right. Good luck...

http://www.ouch-us.org/medications/oxygen/o2links.htm

-Dennis-

Title: Re: WELCOME!
Post by Guiseppi on Dec 2^nd, 2007, 10:25pm

No one who has tried the nasal canulas has had any luck with them. They are worthless as you get too much outside air...........Please read the link on oxygen, the right rig might make all of the difference in the world. ;;D

Guiseppi

Title: Re: WELCOME!
Post by ChristineUK on Jan 22^nd, 2008, 7:46pm

Hello my name is Christine, I am 39 years old and I live in the South of England. I was diagnosed with cluster headaches last wednesday.

On christmas day I accidentally sprayed myself in the face with perfume and a few hours later I was just sitting watching TV when I began to experience really severe pain in the roof of my mouth followed by burning in my right nostril then such severe pain behind my right eye it just crippled me.

Although the pain had taken me by surprise it was not unfamiliar to me, just this time I had no explaination for it apart from the perfume.The pain subsided after 20 /30 mins but during this time I thought my face was going to explode or at the very least I had been shot in the temple!

When the pain had gone I began to ask myself all the usual questions was it my teeth? It couldn't be I have no top teeth left! Maybe it was a blockage in my sinuses but my nose was running like a tap.

Over the next few days I experienced this maybe 5/6 times daily and by the time the New Year had arrived I knew that I needed to get to a doctor. I saw a doctor I had not seen before, and once I had explained what had happened to me I had 3 pages of paper put into my hand explaining all about cluster headaches.

Even then I could not see what had been staring me in the face for the last 21 years! An appointment was made for me on 16th January to see a specialist and I sat explaining to this guy what awful pain I have suffered with my sinuses over the years to which he responded he doubted i had ever suffered sinus pain and told me all about cluster headaches. He went on to tell me I was lucky by the time some people are diagnosed they have had all of their top teeth taken out, it was at this point I realized what had been happening to me.

I was 19 when i had my first tooth drilled, incidentally the tooth directly under my right temple and in November last year I had a orthodontic plate fitted to replace the teeth that I have had removed over the years whilst suffering such severe pain.

Once i had run out of teeth to blame the pain on, I went through every decongestant and sinus remedy I could buy although, I could never understand why nobody seemed to suffer sinus pain as badly as I did.

I have been told that I need an oxygen tank and also a nasal spray of which I don't remember the name but I am waiting for the doctor to hear from the specialist before I can have this medication.

As you can imagine I am very scared and just waiting for the pain to start, it seemed to have lessened to one bout of pain per day which has occurred late afternoon for the past 3 days but without any form of pain relief I would be interested in any suggestions.

Title: Re: Welcome!
Post by doddy7 on Feb 7^th, 2008, 10:03am

on 02/10/04 at 19:08:09, Little Deb wrote:

I shall bump this one, cause it is good......

And say hi to everyone while I am at it!!!!

Big Hugs....Little Deb ;;D

Title: Re: WELCOME!
Post by doddy7 on Feb 7^th, 2008, 10:05am

hello

not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph? :'(

Title: Re: WELCOME!
Post by Guiseppi on Feb 7^th, 2008, 10:10am

Go to the "getting to know you board." Start a new post and title it, husband has CH, questions?? I have no experience with the med you listed. But many many people will respond to your post, including many who live in England! We don't tolerate anyone suffering this stuff alone. Bless your heart for being a supporter!

Guiseppi

Title: Re: WELCOME!
Post by vietvet2tours on Feb 7^th, 2008, 10:15am

on 02/07/08 at 10:05:59, doddy7 wrote:

hello

not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph? :'(

It's morphine. Make ya loads of fun at parties but not good for ch.

potter

Title: WELCOME!
Post by KatzPurr on Mar 25^th, 2008, 8:08pm

Thanks for the warm welcome to all newbies. I have only been a member of this site about a month and have posted a few times. Interestingly, I stumbled across this page several years ago when I was suffering from my last bout of ch, but I was at the end of my cycle and didn't join. In restrospect I wish I had, as I am a big believer in supporting others.

I suppose I have more to contribute than I realized initially, since I have been a sufferer for 32 years. I have tried most meds out there and have never been successful finding any to stop my cycles. I'm just thankful that my ch are episodic, so knowing they will ultimately end is what mostly gets me through a bout. The thought of becoming a chronic sufferer is terrifying to say the least and for those of you who fit in this category, I can only say that my prayers contintually go out for you.

Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK! [smiley=bow.gif]

Title: Re: WELCOME!
Post by jon019 on Mar 25^th, 2008, 8:33pm

on 03/25/08 at 20:08:49, KatzPurr wrote:

Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK! [smiley=bow.gif]

Excellent post KatzPurr, and well, welcome. No truer words than above.

Regards

Jon

Title: Re: WELCOME!
Post by John588 on Apr 16^th, 2008, 11:37am

Well the devil came back after 10yrs. I decided to quit smoking so i started taking chantix within one week the first one hit about a 6 on the kip scale. Thought maybe it would pass quickly stuck it out for 2 weeks about 3 a night all in the 5 to 6 range. I gave up went to the neurologist he gave me the script for the steroids and said to stop taking the chantix. 24 hours after stopping the chantix and without starting the steroids the beast went away. Thought I had dodged the bullet but at 2:30am and 5:30am got smacked with a 6 and a 7 ten days since the last one. Now the dam shadow is hanging around. I guess its time to start the steroids last time i gained 20 lbs and slept an average of 4 hrs a night. Sorry this is a bit of a rant but just had to tell someone who understands.

Title: Re: WELCOME!
Post by DennisM1045 on Apr 24^th, 2008, 12:37pm

And understand we do John! Sorry the beast has returned to haunt your nights. 10 years was a good break.

That pred taper should be given along with a preventive like Verapamil or Lithium or ... The idea is to arrest the beast with the steroid while the prevent gets up to a theraputic level. That can take 10-14 days.

I'm using verapamil immediate release @ 400mg/day right now. I'm still getting occasional hits and shadows but the frequency and intensity is way down.

Oxygen aborts fast. Has to be 100% O2 @ 15lpm using a non-rebreather mask. No med side effect. It is my main abortive. But you have to get on it fast.

If I don't get to the O2 Imitrex injections are my savior. They've never let me down yet.

The latest in treatment strategy can be found here:

http://www.plainboard.com/ch/chtherapy.pdf

Here's wishing you another 10 years of PF time. In the mean time let's see if we can't make this cycle short and as easy as possible.

-Dennis-