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.

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

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...

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

Eric
psycofemale0403 wrote on Jun 23^rd, 2004 at 7:24pm:

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

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

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

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

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.

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!

[color=Blue][/color]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 a lot 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

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.