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(Message started by: Donna_D. on Jan 16th, 2005, 3:19am)
Title: Remember CH.com?
Post by Donna_D. on Jan 16th, 2005, 3:19am
I want to ask a favor of everyone here.  I want you to all remember the feeling you had when you first found CH.com, other clusterheads, and a home where people finally understood your pain.

To do this, I want you to search the archives for your very first post on CH.com.  Copy and paste it here.  And remember.  Remember the good feelings and how wonderful it was to finally feel "no-so-alone" anymore.

If you have trouble finding your first post just look at your registration date and go from there.  If you want help locating it...PM me.  

Here is my first Post:


on 09/26/03 at 15:48:40, Donna_D. wrote:
For the last 5 years I got headaches every April and September.  Each doctor I saw diagnosed me as having "seasonal allergies" causing severe headaches and sinus swelling (causing pain in my upper teeth).  I told them this was no ordinary headache.   Several times the doctors I saw gave me steroid injections (to reduce sinus swelling).  I remember saying on more than one occasion that I felt some relief within 30 minutes of receiving the injection (Decadron).  The pain usually went away after about 4-6 weeks.    


In April 2002 I went to the eye doctor for new glasses.  I had just had my son and had heard that your eye can change during pregnancy.  I was having severe pain in my left eye and surrounding areas.  Headaches like there was no tomorrow.   Got new glasses, pain persisted.  Took allergy medicine, chalked it up to allergies.  Pain went away after another 5 weeks.  Rationale:  New glasses kicking in/allergy medicine worked/whatever was in the air finally went away/stress of having newborn.

This year the headaches got much worse.

For the last five weeks I have had a headache that just will not go away.  The entire left side of my head feels like it is on fire (alternately, a knitting needle being stabbed through my temple and out through my nose).  The pain wakes me up in the middle of the night.  I go to bed with headaches, I wake up in the morning with headaches.  Tylenol, Asprin, Advil, Lortab, Darvocet, Nasal Spray, I even tried ora-jel (compliments of my two kids-ages 3 years and 18 mos).  Nothing relieves the pain.  My cheek below my left eye turns a rash-looking sort of red.    

I sit and rock and cry, and cry and cry.  My husband rubs my head and tries to explain to the kids that mommy does still love them she just has a headache right now.  Thoughts of Brain Tumor,  Bone Cancer (in my cheekbone),  Tooth Abcess, Skull Fracture, Ear Infection and that I am just simply going insane run through my head (between bouts of pain).  My mother-in-law (who is a R.N. I might add) tells me I just need to get a grip and get over it.

Last night banged my head against the wall and prayed to God to just let me die or get over it (per mother-in-laws suggestion).  Woke up again at 1:27am and rocked for another hour.

This morning I picked up one of my mother-in-laws nursing magazines (Advance for Nurses-Sept. 15th issue/ [url][/url]http://www.advancedweb.com  ) and found an article about cluster headaches.  I sat and cried as I read the list of symptoms and realized for the first time that:

The monster has a name
I am Not Crazy
I am Not being a baby
I am fruitlessly tearing up my stomach taking excessive doses of over the counter pain medication.

and most importantly

I am Not Alone.

This afternoon I found your website.  I went through all of the links and read quite a few of the postings.  I have learned so much today.  

Tomorrow I am going to call a new doctor, get a proper diagnosis (taking article with me with hilites and notes of my symptoms--they will listen to me this time!!) drink lots of water and pray that this series ends soon.  

I look forward to hearing from anyone with survival tips.  I don't want to spend the rest of my life saying,
"Not now kids, mommy has a headache".

Hopeful,

Donna D.


 



I think it is all time we remember what this place is all about.


DD
Title: Re: Remember CH.com?
Post by TxBasslady on Jan 16th, 2005, 4:23am
Wow...seems like so long ago...but here it is

« on: Sep 5th, 2003, 2:35pm  

--------------------------------------------------------------------------------
I have not a clue as to if I am doing this right.  Have been reading in this forum and on the Ch site for a year and 1/2.  That was when I had my first visit from this beast.  Have only had sporadic visits till Aug of this year. But have had only 3 pf days since August 11.  This is undoubtedly the worst thing I have ever experienced.  I have had an MRI to satisfy myself and my husband that this is not life threatening. My doctor has give me a rx for Frova.  My attacks are always at night...usually within 1 to 2 hours after I go to sleep.  I have the typical type symptoms that most all of you say you have(I have sat here for hours reading your posts).  My attacks are on the right side of my head, my right eye is totally involved and the area behind my ear.  It is as if my scalp is being ripped from my head.  My husband has been a great supporter and is always the first one up....he runs to get my meds, then sits w/ me and applies cold icey compresses to my eye and head area.  The Frova is the only medication I have taken, and it does reduce the time of the attack. It does nothing for the intensity, but from the time I take the medication to end of attack is from 13 to 18 minutes.  We sit together, well he sits and I rock like a baby, crying w/ the writhing pain I feel in my head.  I plan to see a neurologist, or from what I have read from all of you, that seems to be the best.  I have felt most all of the emotions that you all have felt...including that death must be better than this pain.  However, I have 3 wonderful sons, and grandchildren, and I know that there is a better solution than death.  So far, I have had no daytime attacks, but the nightime attacks have become more unbearable.  So many of you seem to have this 10x's worse than I.  I feel as though I am held prisoner by this beast.  I am an avid bassfisherman (or fisherlady...lmao) and I am afraid now to show up for my next scheduled tournament, in fear that I will have an attack and not be able to handle it.  I am retired from Law Enforcement, and had a great 8 years of fun and fishing before this beast became a daily part of my being.  I feel helpless.  But today I decided to join this special group in hopes that together I can at least cope w/the feelings and the pain.  I hope that in some small way I can help someone else. I can't seem to help myself much.  But you guys seem to be a great bunch of folks.  There's evidently no cure for this...but I welcome the support.


Wonder where some folks went....like Prense, and David J (Sommelier)

CH.com brought me so much peace....was definitely a turnaround event in my life.

Jean
Title: Re: Remember CH.com?
Post by Magick on Jan 16th, 2005, 4:27am
This was my guest book entry. Seems lile a long time ago now...



I’m 35 and been married for 11 years and have a two year old son Ian. I’m currently a unemployed systems administrator (Windows/Unix). I’ve suffered from SUNCT syndrome since I was about eight years old. A few years ago what I think was chronic paroxysmal hemicrania started kicking in. (Never diagnosed). 5 Months ago the clusters started and then quickly ramped up to 5-7 attacks a day with shadows on and of all day. First doctor was a joke. The Neuro I have is wonderful and set me up with what I call the generic treatment program. Verapamil/Prendisone taper. O2 and Trex shots. I’m only on my second week of treatment but the attacks have come down to 2-4 a day now and I can now abort most with O2 or a shot. Just waiting for the cycle to break.
John Thayer <jthayer1@mn.rr.com>
Fridley, MN USA
Wednesday, September 29, 2004 at 03:26:47 (EDT)
Title: Re: Remember CH.com?
Post by BarbaraD on Jan 16th, 2005, 7:14am
Posted by Barbara D. on January 06, 1999 at 22:00:51:

In Reply to: Re: How do I get her to understand the pain I experience posted by Tracy on December 24, 1998 at 21:15:20:

Unless someone has "suffered" from CHs they can't understand the intensity of the pain, nor the "out of gas" feeling when they finally stop. I've had to "crawl" to the bathroom - I think that's when my husband decided I might be ill. But he can't understand why a Dr. can't give me something to CURE it. He's had a stroke and gets upset when I'm in the middle of a CH. He can't understand why I don't make sense. He's worked overseas for the past ten years until his stroke two years ago, so he's never really been around me when I was having a seige. I can't explain it to him and just want to be left alone. I think a pain meter would be great. At least our family would know we weren't "crazy". I wish there was an answer. Barbara D.


 Don't know how long I'd been lurking before this post, but think it was the first one.
Title: Re: Remember CH.com?
Post by PrettyH8Machine on Jan 16th, 2005, 7:42am
I just reread my first post, and felt the same darkness that was all around me at that point in time. My buddy Kenny actually found this website and then turned me on to it. When I showed it to my sis in law, she cried reading some of the posts. She even said that she would've thought I had written all of the posts had she not known better. Everyone was saying the same things I had said for years. Man, that was a brutal, desperate time. Anyways, here is the first post.

Posted by Carl D on April 07, 1999 at 01:09:40:

Hi,My name is Carl. I am 29 years old. I have been suffering from cluster headaches since the age of 17. In 1993 they got so bad i wanted to kill myself (I seem to be a chronic sufferer: Been in cycle for a year now.start to go away but then come right back. have passed out several times from the pain being so intense). When they started back up last April,they were ten times stronger than before, sometimes my whole face turns numb and tingly while the front top,temple and rear by the ear of my head feels like someone has shoved a pipe thru my head and are trying to lift me up by it. I have been unable to work since last April,and lost my apartment in November. I've had to sell alot of my personal belongings to survive and also pay for medicine, and have been staying with friends (which, I have to find a new place to live by the end of the month)and don't have a dime to my name. In 1994 I started going to the Michigan Head-pain and Neurological Inst. and spent a boatload of money trying to find a treatment that worked. We did (verapamil & lithium) but that no longer is effective. In fact, one doctor suggested that may be the reason i keep passing out (verapamil).I have been from one doctor to another until i kno longer have any money. Now noone wants to treat my headaches, as I cant afford them, I cant get a medical card unless i am considered disabled, and i was just turned down for disability (the neurologist i have now is no help). I've had a catscan, MRI, MRA, and have even been to see the Chairman of the headache foundation @ washington U in st louis. He charged me 250.00 to ask a few questions, give a couple of samples (one of which the pamplet info said not to take if you had slurred speech ,which ive had,because it might cause stroke)and set up a followup appt. The next appt. was 50.00 and because i couldnt afford to pay the day of, they cancelled my appt. I'm about to be homeless, I have no prospects of legally making money,no way of getting medical treatment, my brothers arent very supportive(theyre tired of hearing about it),My friends avoid me as if i had the bubonic plague, meanwhile, I'm dealing with the most torturous pain in the world and its as if no one cares. I feel like im ready to lose my mind. In fact,I'm ready to die. Anyone have any suggestions? Has anyone else become disabled due to this? Does anyone feel the way i do,or am I truly in a rare percentage of sufferers of a rare torture headache? I can go for a couple of days pain free, and then one day i can have 2 that last 45 mins to one and a half/two hours, or i can have ten that come at various points of the day and wipe me out completely.Since midnight last night, I've had 3. The one at 9:14am lasted almost until noon today, and it was intense!!!!It seems nothing helps. Ultram works very little,and I cant take much more of this. I dont have a life anymore.I keep asking myself "is this all my life will be?"
desperate,
Carl D


Title: Re: Remember CH.com?
Post by john_d on Jan 16th, 2005, 7:51am
Here is a poignant post, the first I could find but I know I posted long before this in the guest book, I had trouble spelling quantity back then  ;)... I did not post very often.

Posted by John D on March 28, 1999 at 07:43:53:

In Reply to: Misinformation posted by Wood on March 27, 1999 at 18:45:40:

The current medical establishment is based almost solely on extending the quanity of life. These CH's, however, are a quality of life issue.

Title: Re: Remember CH.com?
Post by Melissa on Jan 16th, 2005, 7:55am
Here's my first post, I always know exactly which page to click on in the old board archives.  Don't know why that is, especially cause my memory is horrid...


Quote:
Well, I'm new to this site, but not to the clusters...

Posted by Melissa Filtz (63.27.81.174) on September 08, 2000 at 23:48:02:

it's going on 11pm, i'm afraid to even try to sleep, because i know it's there, lurking in the backround of the right side of my head. But i get so drowsy from the meds i'm on, that i eventually fall asleep, and wake up in intense pain, early in the a.m., pretty much 3am and again at 7am. It's so hard to live with it sometimes. A week ago the pain was so intense, i almost purposely went under the water in the bathtub. Finally my husband (and myself) convinced me to go in and see the Dr. Always seems to happen every fall... Anyways, Dr. put me on predisone, smz/tmp (anti-bio) and Zyrtec. But i'm still waking up with clusters, only once a night, instead of 2-3x a night. I am very happy I found a site on these, because i really need a place to go to, where people understand the pain. Thanks for the space.

Melissa
Title: Re: Remember CH.com?
Post by Renee on Jan 16th, 2005, 8:38am

Quote:
prednisone & toradol
« on: Nov 18th, 2003, 10:11pm »  

Be nice as I'm new to this, please!

I have been suffering with chronic headaches for 7 years.  Went thru hysterectomy, sinus surgery that was botched with instrument puncturing ethmoid bone and into dura lining of brain, and numerous other misdiagnosis. I have tried imitrex, celexa, celebrex, robaxin, zanaflex, etc.  The only relief I have ever truly had is A.   a trip to e.r. room about 4 months ago and was given shot of demerol and phenergan, then i slept for 2 days and have no idea where I was much less if I was in pain.  B.    another trip to e.r. room just yesterday.  Doc diagnosed me with something called CLUSTER HEADACHES and here I am tonight.  He gave me shot of prednisone and shot of Toradol and a script for each.  Felt better 30 min. later and no narcotic loopiness as the demerol/phenergan gave me.

Has anyone ever used Toradol for Cluster Headaches and got results?  I've read tonight about prednisone but saw nothing about Toradol.

thanks
txcowgirl  


my my....what I've learned since then.  :o

This site DID save my life.  The support was overwhelmingly warm and genuine back then.  I just sat and cried once I found someone that could comprehend the pain I was living in.  I was no longer alone.

Thanks Deej.... :-*
Title: Re: Remember CH.com?
Post by cakelady on Jan 16th, 2005, 9:19am
     thank God I found you
« on: Dec 28th, 2003, 9:46am »      Quote Quote Modify Modify Remove Remove
New here. 32 years with the beast. For years I had perfect 18 month PF breaks between cycles. 4 years ago I had a carwreak just as I was ending a cycle, it started all over and lasted 4 more months.   PF ever since...until this week.  Fooled myself, thought they were gone...Have only had 2 so far. But I know it is just the beginning...I am so scared. I am so glad I found you.  Here I go again with the crappy effects of the Prednisone and Verapamil..Time to make friend again with the oxygen guy. damn, which is worse, the pain or the fear? OK in a few days it will be the pain, right now it's the fear.
------------------------------------------------
sorry I've been gone so long. It's been a rather strange year.

This post makes me remember why i came here in the first place. And why i kept checking in even when things got strange for me,

Cakes
Title: Re: Remember CH.com?
Post by E-Double on Jan 16th, 2005, 10:12am
This isn't my first  but probably the most "desperate"....


Quote:
      PLEASE READ!! Desperate teacher here :(
« on: Jun 23rd, 2004, 11:26am »      Quote Modify Remove
Hi all,
Yesterday posted about doc. being sick not being able to get my script filled etc.  
Go t great replies.
Anyway tried going about my business (up since 2:15)
went to my clients house (I'm a private special education teacher/ behavior analyst for "babies" newly diagnosed children with autism)

I had a full blown attack right as I walked into the house. I felt it creeping through out the early am after having a wonderul attack @ 2:15... then came the shadows and then BAM!!!!

Panic.  

Father took me to a fire department. I was going to try to get the O2 as all have suggested. I was basically turned away!

Went to another and then turned away!!!  
How do you all establish the relationships with the departments???

Mom wanted to take me to the hospital.  
I am mortified!!!!  
You just can't conceal these bastards!!
I have tried to explain and even suggested to people that they look at the websites to be better informed.


WTF!!!!!!!  

Man what to do. It's been over 3hrs mad intense and I finally got home after pacing in front of this lovely family for what seemed like an eternity.

Trying to explain that I really just need to be left alone.  
Families really want to help because of all the help I provide for their children but ya know... I was lost.

I finally popped a Xanax just to calm myself.

What do people do if and when these occur in a professional situation??

People put their children's lives in my hands and I just can't do my job as of late!!
I am damn good at what I do but right now I'm a bit depressed.

Thanks for listening!!

Eric


I have come a long way!!! I owe it all to this place having provided me with many of the friends and family that would teach me to live again.

Eric love my Imitrex ;;D and love your tank like a lady ;)
Title: Re: Remember CH.com?
Post by Karla on Jan 16th, 2005, 10:12am
My first post was 5/24/99.  Seems jonny showed up about that same time period. I had been watching and reading this site for close to 6 months before I actually posted.  My first post was in response to a survey that was going on at the time.
Title: still life watercolor
Post by rumplestiltskin on Jan 16th, 2005, 11:01am
I think this was it. I remember lurking for a long time...reading the archives...fights and fears and friends and ...understanding...thinking..."What a tight knit group of folks. I feel like I'm interupting and they may not like me....butt here goes"

Blessed are the Poor


Posted by Dennis (207.70.186.225) on August 03, 1999 at 02:12:00:

In Reply to: Is There really a DJ and others who suffer from cluster headaches? posted by Elaine on August 01, 1999 at 20:54:33:

Elaine, thanks for the post. It’s a treat to have flesh and faces attached to these simple black sqiggles on my screen. I try to come to this cyber party often... and like so many others, sit back, quetly sipping my O2 cocktail, enjoying the lively , loving exchange of ideas and emotions that takes place here.

But this post of yours has prompted me to want to share something with you that is an important ingredient in my medicine bag. Take what you need and leave the rest behind.

Blessed are the poor.....in everything. “Poor” meaning “needy”. “Blessed” because when we are needy we reach out.....if we know what’s good for us. And it is only when we reach out do we open ourselves to others.

The “rich” ( self reliant, self sufficient, Pain free) are more likely to be islands. Establishing loving relationships with the world around them is much more difficult because they simply don’t “need” to.

The Buddist’s used the image of a bowl. The bowl’s great usefullness, it’s value, comes from it’s “emptiness”, it’s “neediness” if you will.

Blessed are the poor in spirit ...for theirs is the kingdom of Heaven.

Simplistic as a smile. Had not all of us “needed” relief we wouldn’t be here at this site....relating....sharing. The last thing I expected and wanted when I picked up this hand was to get the Queen of Pain....but I gotta play whats dealt.....together with my Queen of Hearts this may be a winning hand afterall.

I’m where I’m supposed to be and so are you. I pray there’s a kernal of comfort somewhere in that for you. You deserve it.
Sweet dreams
Den
Title: Re: Remember CH.com?
Post by brain_cramps on Jan 16th, 2005, 11:16am
I went looking for my first post but ended up spending 3 hours in the archives...    and laffin the whole time!   [smiley=crackup.gif]


still lookin,
grant          [smiley=laugh.gif]
Title: Re: Remember CH.com?
Post by Redd715 on Jan 16th, 2005, 11:19am
Not the first but maybe the second post?  I've learned so much since ....  this site and the people here are life savers to be sure.


Quote:
Ok…so I’m sitting here.  After hiding from my daughter who was home from school sick today so she wouldn’t witness me rocking and trying to crush my skull between my knees, I’ve made it threw another one.  

Since I’m scheduled to see the specialist at the neurology dept. tomorrow, I’m trying to go over all of this in my over tired, muddy, confused demon battered brain.  Trying to get a sort of  “pattern of events” down, so I can accurately discuss this with her.  I sit in an attempt to recall all the things that, looking back, I know now were related to this …this demon.  

I recall back some 12 years ago, when I was first having what were diagnosed Hormone related migraines while I was pregnant with my daughter.  Yes…these were migraines. Wanted the dark, no noise, lay still…last most of two days, and done.  

Once my daughter was born they didn’t end however.  Sometimes, the Imitrex injections worked sometimes not.  As the months passed, I would get “hit” out of the blue sometimes with killers that had me dragging my head on the floor, begging my husband to please just kill me.  He’d take the auto injector and hit my inner thigh; all the while I’m thrashing about.  I recall he took me to the ER a few times where I was pumped with Demerol, and it still seemed to take forever for the pain to go away, but once it did, I slept…or should I say I was knocked cold.  

There was neither rhyme nor reason to these sudden attacks for the next 9 years.  They would hit from nowhere…and I thought what I had found was a solution.  3 Arudis KT’s and 4 Tylenol PM’s.  I’d pop these…and wait.  Pacing the floor, or rocking in the chair, or tossing in my bed.  

Then a year ago I started to wake up in the night with this horrendous pain.  I had suffered with allergies for many years, and this pain was right there it seemed.  Right above the left eye, below it and back into the ear.  I’d been using a nasal spray each night before sleep to clear my sinuses for many many years.  But I wake up to the left nostril blocked off or dripping profusely, and the upper teeth on that side throbbing from what I assumed was sinus pressure.  So…2 Sudafed’s, and 4 more Tylenol Pm’s and again…wait.    Head in left hand…box of tissues in my right… rock at the foot on my bed, or pace.  Sometimes my teeth would ache and throb so bad I’d be in the bathroom with floss trying desperately to dislodge them, but to no avail.  Not enough strength to pull the teeth out.  I’d go back to rocking till I felt the pain subside, “thinking” that the PM’s and the Sudafed “finally” kicked in, and crawl back beneath the covers to sleep.  Two or three days of this and I’d be fine for a few weeks, and then another two or three days.  

Then as any of you who have read my intro know…I started with the 2 am wake up calls nightly with these “sinus attacks”.  Waking up I’d be hurting, but not as intense, head to work and eat Tylenol all day there…trying to take away the headaches I was having there, hoping if I had enough in me I’d prevent them.  No such luck, but I kept trying.

Well you know where the story goes from there.  So as I sit here writing this I ask myself a lot of questions.  Things only another clusterhead might be able to answer.  Maybe only a neurologist.  And maybe only time will tell.  Was all the agony I was having before a prelude to this?  Has the years prior to this been the set up for a chronic condition?  Is this a change in a pattern to tell me I’ll be episodic?  Between the two rounds of prednisone,  and the verapamil, I’m at 3 Kip 8-9 a day with shadows of a Kip 3-4 in-between most times, but on rare occasion down to a Kip 1-2.  Back 2 weeks ago I had a kip 1 evening, and I decided to go sing Karaoke with a few friends, one of whom also has cluster headaches, but not really sever. I had a few beers and wasn’t out all that late, but it didn’t trigger the demon. (Hadn’t been to this site yet to learn that it can for a lot of folks)  In fact I actually DIDN’T get the regular wake up call from demon.  It waited for another 2 hours to wake me.  And it wasn’t as sever as usual. (Now this was the second time I’d been out since these started, and the first time I had alcohol)  The time of the wake up call changed with the turning of the clocks, and it’s now about 3-5 am.  Starts with a Kip 6…but I’ve stopped trying to get back to sleep.  I have my “dance”…I use the powder room quick, grab the blanket off the couch that I wad up into a ball and sit in the hallway.  On my knees, I rock forward and back, letting my head hit the floor some dozen times I imagine, then throw my head back into the wall and turn…right to left …BAM…right to left BAM…back and forth between the two distractions…for as little as 30-45 minutes…sometimes for over an hour maybe close to two.  Back to bed.  The demon wakes me up once more between 6-7 am and it starts over till nearly 8:30 or 9:00 am.  Kip 2-3 till 2-3 pm…and it starts all over…but only to a max of Kip 8 so far…sometimes as low as 4 but I’d say average of a 6.  Three a day...from the 5 –6 a day I started with on the 8th of March.  Seems like progress…but why doesn’t it feel that way?  Too new to this maybe….???
Title: Re: Remember CH.com?
Post by Filbert on Jan 16th, 2005, 11:23am
Mines' a bit boring but was made to feel very welcome.First Timer
« on: Jan 22nd, 2004,

--------------------------------------------------------------------------------
Hi to all
 This is my first post - been a cluster head for 20 years on  and off diagnosed 6 years ago after usual rounds of misdiagnosis. Just wanted to congratulate people on some fantastic and informative threads particularly in meds and diagnosis section-excellent
  Yours Filbert
Title: Re: Remember CH.com?
Post by BobG on Jan 16th, 2005, 12:14pm
My first post to the CH.com message board was

Quote:
Posted by Bob G on May 05, 1998 at 16:33:13:
This site is great. Last Saturday night I started with the clusters and have had on attack each night since. This is the first attack in 10 pain free months. Was searching the net for anything new and came across this site. Going to sit right here (at work) and read it all. The hell with what the boss thinks. Thanks again. I'll be back.


My very first greeting was from DJ

Quote:
Posted by DJ on May 05, 1998 at 17:08:06:
In Reply to: This is great! posted by Bob G on May 05, 1998 at 16:33:13:
hahahahaha, glad you found us Bob! WELCOME to the most painful site on the internet! ;-)
Deej


And a little history of CH.com
CH.com Guest Book was opened by DJ April 11, 1998
CH.com Message Board first entry is April 30, 1998
Title: Re: Remember CH.com?
Post by broomhilda on Jan 16th, 2005, 12:44pm
I used to be able to find mine, but I am happily digging through the archives :D

Thank you to everyone for sharing your story, thank you to everyone for being here and thank you DJ :-*
Title: Re: Remember CH.com?
Post by Jeepgun on Jan 16th, 2005, 12:53pm
I can't seem to find mine, but it doesn't matter. When I first found this place, I found the first page, and the red text, "Want to know what it's like to live with clusters?"

I read the accounts, and cried with recognition at the stories. I lurked here and read and read... What a godsend this place is, and I will be forever indebted to DJ for making it happen. God bless you handful of people who decided to build this organization called OUCH...

After being out on horseback for days and nights, in howling wind and blinding blizzard, on the verge of giving up and dying, a lighted window in the distance! Stabling my weary steed, rapping at the door, to be welcomed into a place of light, of crackling fire on the hearth, given a steaming bowl of stew and wrapped with blankets...

*wistful sigh*

Thank you... Thank you... Thank you... From the bottom of my heart and with every fiber of my being: Thank you...

You have saved my life. Literally.

-Frank
Title: Re: Remember CH.com?
Post by AlienSpaceBabe on Jan 16th, 2005, 1:35pm
Posted by Elizabeth (12.76.85.21) on September 06, 2001 at 10:09:39:

Hello. I'm happy to have found this website. I'm a CH sufferer as well as CPH.
Today isn't such a good day. I've been up for a little over 3 hours and am on
my 16th headache of the day - yesterday was a new record for me of 40, beating the
previous record of 27 in one day.
I'm tired of hearing "just relax" or "could it be something emotional that's causing
them?" or "it's not possible to have that many headaches" or "you're just doing this
to get attention".....
Okay, now it's 17 headaches today....aaarghhhhh.
Most of my headaches are around/in/behind my left eye. Occasionally it switches to
the right side. The past 10 days I've had added headaches where it feels like
someone hit me in the back of the head with a baseball bat.
Ice helps with the baseball bat ones sometimes.
I'm weary....exhausted....dehydrated (from crying)....frustrated....angry....losing hope.
I had MRIs, MRAs, CTs....all normal.
I guess that's where the comments (above) start - if it's not physical, then it must be....
They just don't understand that they ARE physical - so many people seems to assume that if
a problem is physical then it's possible to solve it, meaning that since there's no cure
and no apparent treatment that works for me, then it's all in my head....
I would love to tell them to f*** off!
Number 18 is on it's way: several floaters in my left eye, droopy lid, nose running, eye watering,
inside of my mouth on the left is getting numb - this one is gonna be a doozy...
Thanks for letting me vent.
Elizabeth
Title: Re: Remember CH.com?
Post by BlueMeanie on Jan 16th, 2005, 1:54pm
I remember having tears of joy and sadness at the same time that day. It's a day I'll never forget. I had already known I had CH's and most all the treatment options. For me, it was finding someone else who knew what it was like to live with Clusters and who understood the pain. As most of you, I thought I was one of the only ones out there that got them. For those who think vibes are meaningless, those vibes and prayers that where sent to me that day where priceless and I thank you.  :)
Title: Re: Remember CH.com?
Post by nani on Jan 16th, 2005, 2:05pm
I don't think I posted a "Hi, I am..." post. I lurked here for months...laughing with and crying for so many. One day last June I decided it was time to actually jump in. This place has been a lifesaver for me, also. To find others who suffered, to feel like I could give and get support. And to be able to make friends here has been a priceless gift. I'm so thankful to DJ for giving us this place. I'm so thankful to so many of you who've been there when I needed someone....
I can feel the love people, I can feel the love....  :-*

nani
Title: Re: Remember CH.com?
Post by LeLimey on Jan 16th, 2005, 2:16pm
Thanks for this DD.. it is important to remember how desperate w were when we found this place... and how much better we feel with the support gained from here. You are a star!


on 10/04/04 at 20:45:49, LeLimey wrote:
Hello Everyone,
Wow what a lifesaver finding this site is! I've read alot of posts and the help has been invaluable.. just knowing "we are not alone" is (for once) reassuring! I have just been diagnosed with CH after having a CT Scan last week. I was diagnosed with Coeliac Disease (autoimmune disease - intolerance of wheat/gluten) at the beginning of this year and have been on Prednisolone for that from February through to August 9th when my steroids were switched to Budesonide as the prednisolone was unresponsive for the Coeliac Disease. Within a week of switching I started getting headaches, pretty bad ones but still merely headaches. A walk in the park compared to NOW!! Since the 14th of September I have had a headache which got progressively worse for the first three days until on the third day the pain spread around my sinus area so I thought it must be sinusitis. I got antibiotics, OTC painkillers and decongestants but by the following day I was fit to stab myself to stop the pain. The severe pain lasted for a couple of hours, I can't be precise as I was too out of it to really be sure. I couldn't bear to have anyone else around me and to add insult to injury we were away for the weekend at a Hovercraft Race  Meeting and suffice to say the NOISE did NOT help matters!! I waited out the week crying in pain each day in the (dumb) hope the the antibiotics would work. Finally my husband called the doctor who promptly called an ambulance and I was whisked off to hospital. I have been given Imigran which didn't seem to do anything and a combination of Tramadol, Paracetamol and Ibuprofen which although it helps through the rest of the day doesn't do much during the peak. I ave what seems to be the usual other "treats" one-sided, severely snotty, ( am considering entering nose in next marathon.. nothing runs quite like it!!) charming disposition of a grizzly.. you get the picture!! It comes everyday at the same sort of time of day and then tails off and I'm "fine" until the following morning when the whole vicious circle starts again. By fine I mean I can cope but do definitely have shadows ( And that is a fantastic description for them!)
My BIG question is steroid related.
A) Are prednisone and prednisolone one and the same? Have looked but can't find this info.
B) Has anyone else got CD and if so have the found CH is related OR has anyone else got the headaches from withdrawal of Prednisolone after a long exposure to it?
I know I'm a pain in the butt but hey, after these headaches that has to be a step in the right direction surely?!! LOL
Helen
Title: Re: Remember CH.com?
Post by Cathi04 on Jan 16th, 2005, 3:15pm
LOL>..I think I'll pass, DD........but you should all know..I will not leave this place.Sometimes I might be silent....and I may not qualify as a supporter in some peoples' eyes, but I watch and I read and I chat and I cry and I pray and I laugh and I cheer-and I will NEVER understand why ANYONE here would want ANYTHING but the very best for ANYONE else who washes up on these shores.
PF to all, and thank you, DD, for this thread! :-*
Cathi
Title: Re: Remember CH.com?
Post by RichardN on Jan 16th, 2005, 3:21pm

 Would really like to do this, not only because I think it's a great idea, but also because I've lost much memory from 3/02 and 3/03 especially  and I was hoping to fill in some blanks.

 Got about half way through loading, then "cannot locate page" showed up . . .  :( . . . my computer?  Can someone else access?

 I do remember the tears (and not all right sided) at finding people with the exact same symptoms and horrible pain that I was and had been having for over a year.  

  Love you guys,

       Richard
Title: Re: Remember CH.com?
Post by Tiannia on Jan 16th, 2005, 9:40pm
Still dont feel like I know much more now then I did then.  But I can handle it better and dont feel like I am going crazy (well as much...)


on 09/03/03 at 12:51:41, Tiannia wrote:
Hello all - I just started having Cluster Headaches in June - but really had no clue what was happening.  I had Migraines for years but maybe once or twice a year - go to bed and its gone.  Then I suddenly started having these killer headaches every day or other day.  I felt like... well I can not explain it, I dont think that there are words for it.   :'(  Kept thinking that it was a regular migraine and would stop, but after 4 weeks, my husband told me to get to a doctor.  I got to the doctor and she gave me 3 samples of Imitrex. And I have an MRI Scheduled next week.  She tells me that I am an oddball with CH because I am female.  I always knew I was an oddball, but never guessed that a doctor would confirm that.   :P

The Imitrex helped, if I can take them right when I get a shadow.  But my insurance will only cover 6 pills for 30 days.  Both of us work full time, with a firstgrader and a 1 year old.  My day does not alow for me to give into this pain.  I just have to force myself to get through each day.  

I'm sorry I'm babbling.  And if I keep typing I think I'm going to cry - I can feel it building up in my head right now and I know that there is nothing I can do.  I just wanted to tell you thank you for this site.  It helps to know that it is not just me....  That is if you will accept an oddball ito your ranks.  ;)

Tia
Title: Re: Remember CH.com?
Post by Lizzie2 on Jan 16th, 2005, 10:03pm
Well this was one of my first posts, I think!


Quote:
Hi...pretty new to posting here!
I just have a general question.  Has anyone ever tried indomethacin wayyyyyyyyyyy back a long time ago?  I know it's not a drug CHers take regularly, but I know some people go through it as a trial.  I was wondering if it is the kind of drug that usually works right away or if it takes awhile to build up in your system.  I've read conflicting things about that!
When I tried it, it was for about 12 hours or so, and I didn't notice a change (headache was already REALLY good too!), but I'm kinda interested in giving it another shot, and I want to know if I should give it more than a 24 hour chance.  
Of course, will have to go through the neuro to see about trying it out, but I wanted to get "popular opinion" first!
~Lizz  


I think I prefer not to remember those first few months!  Rough in many ways.  But I learned so much, and after some bumps in the road....this became the only family I ever chose to stay a part of despite it all.

Love you all,
"Lizzie" :)
Title: Re: Remember CH.com?
Post by don on Jan 16th, 2005, 10:22pm
Not my first but I found this from 2001..............


Quote:
Jonny is an afghanastanian transvestite. Just thought you should know


Not much has changed except I found out he's not an Afghan.
Title: Re: Remember CH.com?
Post by unsolved1 on Jan 16th, 2005, 10:28pm
I'd never find my first post. I started out as "UnsolvedEquation" at first ... but since I was on so much Topamax, I forgot that password. I made my 2nd profile "UN_SOLVED" and then forgot that password. I'm currently on my 3rd profile (and off the Topo). I should have well over 1000 post by now but I had to keep starting all over. LOL

Anyone know where my first post is ??

unsolved1
Title: Re: Remember CH.com?
Post by don on Jan 16th, 2005, 10:45pm

Quote:
Anyone know where my first post is ??


If you can find the second then the first ussually precedes it.  8)
Title: Re: Remember CH.com?
Post by Mr. Happy on Jan 16th, 2005, 11:50pm
I can't find anything I or anybody else said. NONE of that search shit works for me anymore.  It used to, but I'm not about to complain to DJ about my piss-ant problems. He's got a BMW to pay off.

Whatever the first post was, it had to do with this Roxy chick talking about using sex as an abortive. God damn if I wasn't All Ears. I signed right up. She since deleted those references, but i've been waiting, patiently, ever since...

Oh. I get these "headaches", too.....
RJ

Edited because I owed you a " 't "
Title: Re: Remember CH.com?
Post by vig on Jan 16th, 2005, 11:53pm
In my first post, I think I told Elaine to quit whining....
I've come a long way ;;D
Title: Re: Remember CH.com?
Post by Ree on Jan 17th, 2005, 12:03am
Posted by David (205.188.199.188) on January 20, 2001 at 21:41:56:

In Reply to: It's Zoloft posted by Bob P on January 18, 2001 at 10:53:59:

I am sitting here with this site that my wife found for me. I am finding it so hard to believe that there are so many of you out there that suffer as badly or worse than I do. I think that it is really unfair that there is nothing we can do about these headaches besides suffer with them. I started this cycle the week of Christmas "nice present"!!! I am now in full swing experiencing at least 3-5 per day and lasting between 30 mins to 3 hours depending on how fast I can get the meds into me. The imatrex nasal spray is the newest thing i tried tonight and it didn't work. The doctor has prescribed neurontin as a prevent and it has kind of made them tollerable for the first few weeks. Tonight I have experienced my worst, and my wife is typing this as I speak. I feel happy but sad that we found this site. Happy because we're not alone. Sad because we some how hoped that there would be a cure for this somewhere along the way. If there is no help for all of you. Why would there be help for me? I have once been hospitalized where they administered a drug that was so deadly that they hooked me up to monitors. That only helped for a week and they soon returned, it did shorten the duration. I dont think people take us seriously, they dont realize the pain we are suffering. I feel like we dont have any support when we go through this because people just think I get "headaches" and refuse to believe its a neurological disorder. thanks I'm glad I found you all... you'll be hearing from us
Dave and Ree
____________________________________________
Well that was our first post... it took me forever to find it because I posted for Dave... funny... I sat and read and read back in those days the board looked so different... The first person I spoke to personally was PAULA and she was a doll... she made me feel so welcome... Jonny and I had a dog and cat relationship for a while due to the fact that you know me... I was always sticking up for people and he was always the guard dog trying to kick out the Migrainers... Now I consider him one of the best friends a person could have here in the ch. community... The first thing I read here was a post by Margi talking about Mike getting hit and I was so relieved to find this site and so thankful for the contents... well the rest is history... I noticed many lovely people have come and gone... call me an addict... Im addicted to the LOVE... LOL... love to you Ree
Title: Re: Remember CH.com?
Post by Lizzie2 on Jan 17th, 2005, 12:11am
I found CH.com originally from chat.  I had no idea what in hell was going on with my head at that time.  I'd been dealing with the chronic daily migraines for a long time, but I was lost with what was going on since my skating accident in March '03.  Chat back then often included Mr. Happy, BillyJ, Mast, Charlie, Grant, and lots others who I'm forgetting to name!!  Those were the days! :)

Lizzie2 (that name came from chat because when I used the name "Lizzie" everyone thought I was Lizzie as in AlienSpaceBabe Lizzie...so from then on I've been Lizzie2!) :)
Title: Re: Remember CH.com?
Post by Margi on Jan 17th, 2005, 9:56am
Cool idea, Donna - it's always fun to take a walk back through our history here.

Here's my first post, I'd been reading for awhile and I firmly believe that Doc Jerry saved Mike's life that week with the water treatment and we had also tried the welders' oxygen because of this board.  Had I not found DJ's creation, I firmly believe I would have lost my husband in that cycle.  Oh and Bob G was the first one to give me hell here (about using welders' o2) ;).



Posted by Margi on October 30, 1998 at 15:18:53:

My husband has been suffering from CH for 20 years and we have yet to find a doctor that will treat him for it. He has been treated for sinusitis (penicillin), migraines (imitrex - quickly built up immunity), and pain relief (toradol, ferrinol, etc.). I have tried treating him with feverfew (which lessened the severity but didn't avert the attacks and you have to take it for a long time before you see results).
Right now, because of this site we are trying the water therapy and inhaling pure oxygen (that we have with our welding supply but can't seem to find a doctor who will prescribe it!). He is getting some relief (his first sleep in over a week!) - thanks, Jerry! He has been on a waiting list to see a neuro at the end of November, but I doubt he will still be in this cycle by then so he probably won't want to attend only to be sent for more cat scans, bloodwork, etc., etc. He is on a waiting list for the headache clinic at the Foothills Hospital. Oh yes, that waiting list is ONE YEAR LONG!!!
I guess we'll keep doing what we're doing, but it would sure help if anyone knew of a doctor in the Calgary, Alberta Canada area that believes in Clusters and won't put him through any more "lab rat" testing.
Any help would be greatly appreciated.
My heart goes out to all you CHers and your support people.
Thanks for listening.

Title: Re: Remember CH.com?
Post by OneEyeBlind on Jan 17th, 2005, 10:45am
Let's see if I can do this right.  Took a little while to find mine as I have changed my name as well, and gotten a little smarter I hope.  


on 08/08/02 at 20:21:51, NancyMcFree wrote:
Ok, I have been reading everything on this site for a few weeks now.  Learned lots of good stuff but still have a few questions.  I was recently diagnosed with clusters. Never really suffered from any kind of headaches other than sinus in my life and wam, out of the blue I started waking up at night with the most excruciating pain I have ever had in my life.  Pretty much the standard stuff ... pain all on one side, nose shuts, pace, rock, cry .... with the exception of the eye watering ... oh no, mine looks like it is bleeding.  That adds to the pretty picture I have seen in the mirror in the middle of the night for over a month now.  For the first 25 days I never slept more than 3 hours a night ... and found out really quickly that naps were totally out of the question unless I wanted a bonus headache to add to my log for the day.  I have been to all the doctors ... dentist, endodontist, eye, GP, neurologist ... had all the tests ... CAT, MRI, MRA.  My family doctor did really well by me and diagnosed right away (after a few weeks of thinking it was a sinus infection).  I'm really glad I found this site as it helped me through many a sleepless night reading all the stuff I could on this disease.  I now have Imitrex, oxygen, and verapamil.  Couldn't ask for more drugs ... not that I want them ... I haven't taken 10 aspirin in the last 5 years - so all this medicine is new to me.   My questions would be -
1.  While for the first 27 days I had consistently one headache a night, and a bonus if I tried to take a nap ... now I am all over the place.  In the last two weeks I have had 3 in one day (all while awake), gone 4 days at once with none, then had another one .... why ???  While I never before had a headache in my life .. now on the days I don't have a banger I have a headache all day, or just shades of a real banger starting .. like with the nose and eye starting to ache but never really getting a headache.  Is this what you call shadows?  And am I still in a cycle if I am getting these ?  Half the time I am taking the imitrex before it starts to get bad only because I am afraid of how bad it will get.  How do you tell if its gonna stop of if you should do the shot ???
2.  While I have the oxygen .. the guy who brought the stuff took off the bag from my oxygen tank and set me up with just a mask ... is this the wrong way to use it ?  I got rid of one not so bad headache using the oxygen so far ... but the rest of the time I end up doing a shot of imitrex after the oxygen doesn't work.  
3.  Is it normal when you get a break and don't have a headache for a few days to feel like someone pulled the plug on the tub and all of your energy drained away ????  After two days of not having a headache it is all I can do to get out of bed I am soooo friggin tired.  Perhaps this is just relief washing through my body .... but boy, it would be nice to feel better after getting a good nights sleep !!!!!  I feel like a train ran over me when I do sleep good.  I have got to get better at this !!!  If my headaches aren't coming every day can I assume I am close to the end of my cluster ?????  
4.  What is the average cycle?  Once I get through this one I would like to know how long I can look forward to being PF !!! I did look at some of the charts for how long clusters last and how often they re-occur but they don't really give me a good idea.    

Glad I found this site.  I feel like at least now I have someone to talk to that understands what is going on in my head !!!!  
Title: Re: Remember CH.com?
Post by Woobie on Jan 17th, 2005, 11:24am
HA HA HA

Here's my OMG IM GOING NUTZ thread on the supporters board
i was soooooo green.  LOL

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;action=display;num=1037216440
Title: Re: Remember CH.com?
Post by Gena on Jan 17th, 2005, 11:57am
My first post
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=sep2003;action=display;num=1063313400

I remember the day well - I thought the doc was a wack job giving the pain in my head yet one more name and this time telling me all I needed was 02 and water ::).
I remember thinking, If you can stick me full of pain killers and it does not help with the pain how is 02 going to help. So I go to work I type clusterheadaches in to yahoo and come up with this site and have been here ever sence. :-*
Title: Re: Remember CH.com?
Post by guesst on Jan 17th, 2005, 2:47pm

on 12/21/04 at 11:09:04, guesst wrote:
I am in my 30's and have episodic clusterheadaches.  I was diagnosed in the fall of 1995.  They are the absolute worse pain I have ever felt in my life.

;;D
Title: Re: Remember CH.com?
Post by Leesa on Jan 17th, 2005, 3:06pm
This is the first post I ever did on Ch.com. This from a different time in my life,  before Dave.
DJ, THANK YOU for giving so many of us a place to call home.  We all have different points of view, ways of lookin at the world. The one thing above all eles that binds us ALL together is the PAIN of CH!

My husband has suffered from CH for 15 yrs. I knew they were bad but I just never knew how bad untill I saw one in full swing on 2/19/01 and all I can say is "Oh my God in heaven." The "beast" hit like no other I have ever seen before. I had seen them but not this degree. To be honest it scared the devil outta me. His right eye was swollen completely shut, tears steaming down his face, right side of his face was swollen half way down. He had hit his Imitrex nasal spary an Oxygen and Nothing was working. I was left totally and completely helpless, like a new born kitten. Ken (my husband) has tryed many different treatments an provention meds. and again nothng helps! The docs we have seen are by no means of any help either. They just don't seem to understand just how terrible these head aches really are. Ken and I both feel they just don't get it, nor do they really want to either. Ken just happen to stumble on this sight and for he and I both its a "True God send". Thanks to this sight we have found we are not alone in our strugle to find help. We now have an appointment with the Ford Head Ache clinic. (thanks Ike)This sight has been a way for both of us to learn more about CH and to see we have "a family" out there that are dealing with the very same things we are from Ken's side of the suffering to mine as his wife and having to watch him suffer. Thanks so very much!!!! Leesa Butler
Title: Re: Remember CH.com?
Post by Margi on Jan 17th, 2005, 3:09pm
I remember that one, Leesa.

Boy, we sure do have a lotta battle scars don't we?  
Title: Re: Remember CH.com?
Post by Lizzie2 on Jan 17th, 2005, 6:19pm

on 01/17/05 at 15:09:13, Margi wrote:
Boy, we sure do have a lotta battle scars don't we?  


Well worth every one.....all the tears and head banging for both clusters and personalities and everything on earth.

I wouldn't trade this dysfunctional family for anything on earth!!!

Love,
Lizzie :)
Title: Re: Remember CH.com?
Post by Kevin_M on Jan 17th, 2005, 8:16pm
I can't believe you all got me to actually go back and look.  


Spring, 2001,        guestbook

When first bout happened at age 43 I thought I was rid of a terrible, terrible unexplained pain. Many in family did not understand or believe me. Luckily my doctor treated them as migraines and prescribed Imitrex and fiorcet and tried preventives as nortriptyline, they came back again. This next time I was referred to a neurologist who suggested it might be cluster headaches. He tried everything to prevent them such as Depokote, and Paxil with no effect. We found ibuprofen like Motrin 600 and 800 were ineffective in detering an oncoming cluster also. Best results were Imitrex nasal, when I wake up ninety minutes after falling asleep. In the morning, they were not too strong. The third headache of the day happens at work at 4 to 5 pm. This has kept me functional for the last three months except now I wait at night for it to happen and can't sleep. This all has been barely manageable and curtains for my social life. Hope we can help each other.
Kevin M
Eastpointe, MI USA

* I remember Ave and Ree responding.

* I had them a couple years earlier than 43, but kept them at bay with daily use of much ilicit drugs, unadmittedly.  When I quit, it was BAM.
Title: Re: Remember CH.com?
Post by catlind on Jan 17th, 2005, 11:22pm

on 01/16/05 at 03:19:54, Donna_D. wrote:
To do this, I want you to search the archives for your very first post on CH.com.  Copy and paste it here.  And remember.  Remember the good feelings and how wonderful it was to finally feel "no-so-alone" anymore.


No can do, and neither can you.  There was a board crash a couple of months after I got here and 3-4 months worth of posts disappeared, but it was summer of 2002 Jun/July.

I can't say I felt not so alone, but I definitely felt "Look Clark (hubby for those that don't know me) I'm not crazy...I'm really not...well at least not when it comes to these headaches"

I found people who understood, I had validation, and I had a means of fighting back.

The rest as they say, is history.

Cat
Title: Re: Remember CH.com?
Post by Charlie on Jan 18th, 2005, 3:13am
I'm pretty sure this is my first post from September 4, 2000:

Hi Robin: I'm 54 and haven't suffered in many years (probably because of age and anticonvulsants (depakote) but when I was first diagnosed with these wall-bangers, I was taught a biofeedback technique. I was skeptical but it did help during the attacks. As these are vascular, I was told to "think" of redirecting bloodflow from behind my eye, down my neck and into my arms and hands. As my hands warmed, the throbbing gradually subsided behind my eye. It takes intense concentration, a cool, dark room, and for me no "help" as it just gets in the way. This kind of thing is fairly easy to learn and I found it lessens the severity of the attacks as well as duration and allowed me a little sleep. I also had good results with Inderal but I no longer need it. All the best--Charlie Strand

I was just as inarticualte in the guestbook too.

Charlie


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