hiya im sarah i do use this site alot to update myself on the comments on wat people av put n to c if anything that can help us all out there ,, im 35 n ad cluster for 18 years n im sick ov them now ,,my clusters started around 3 weeks ago only got rid ov them in the feb :( n the pain well u all know i dont need to tell ya ,,im hoping their not going to be with me for long well praying not for them to come bk ,,av tried loads ov meds but nothing really works ,,i take oxygen at the mo n verapamil ,,i think up to now their the best thing for me ,,iv all so ad the nerve injection in the side ov my head in the feb wen my other attacks came on yeah it did help but pains r bk ,,well i hope there is someone out there to help us all as well all cant suffer like this in pain for the rest ov our lives well c n bye for now from sarah x

i just dont understand there isnt anything out there to treat us all we seem to be doing is taking pills n i hate taking them lol

hiya chisty ,,how r ya ? your not kidding i just wish i could get a good nite sleep but we all know its hard to sleep ,, yeah the oxygen help me loads it a life saver for me ,,i wouldnt like to think were id be now without it ,,iv been in it a few years now ,,i even ad the nerve injection in the side ov my head n that helped me wen it came on in feb but it came bk 3weeks ago n im gunna ask my nurse if their is anything else to try,
do u take oxygen ? u take care now im feeling pain coming on take care
love prays from
sarah x

my name is casey, i have had CH for over a year now and its dramatically taken over my life, im 17 yrs old and feel outcasted by the fact that im the only person i know who suffers from this. i am currently on propranalol which was prescribed for me, but they don't really help. i feel humiliated and crushed by the pain, im always tired and my engery levels are so low from lack of sleep, im finding it more and more difficult to handle it and i no longer take comfort in thinking it might end one day. Is there any help? tell me something to try, anything i'll try, im petrified that im going to have an attack, so any help would be apriciated.

casey

Well, hello everyone.  My name is Elizabeth.  I'm brand new to all of this.  For years, on and off I have suffered from headaches I just pushed off as tension headaches.  I also have suffered from migraines in the past. 

In the past two months things have changed. 

I'm a 35 year old Master's student in English.  I work full time as the assistant to a Dean of the College of Nursing at a major University and I'm a mother of 2.  My oldest is graduating from high school this year.

I also began doing craft shows this year and I felt that it was excess stress that  increased my headache frequency as well as their strength.

Nothing helped, so my doctor prescribed Midrin.  Initially it helped but seemed to wear off before the 6 hours was up. He ran a few tests, did some scans, and after many rounds of questions, a trip to the ER and a trip to the Neurologist I have been diagnosed with cluster headaches.  Before that, I have not heard of them.

Currently I am taking a low dose of Topamax (25mg) at night.  The first 5 days of it were great.  However, today I actually ended up having a headache.  I had the drooping eyelid on the side of the pain...the agitation is horrible.  The pain is horrible (but you all know that) 

I do have a question for anyone taking the Topamax.  I have read it can change your perception of taste.  I cannot drink any kind of soda, it's extremely bitter, rice tastes like butter (without any butter in it) and coffee is excessively bitter as well. 

I know the doc said we'll probably have to slowly increase the dose of the Topamax.  I feel slightly drugged, but will welcome slight drugged feeling/weird tastes over the pain any day.

So hello all!  I'm glad I've found you.

Hello!
I'm Angela Lambert. I have been episodic since 1992, diagnosed in 2004, married in 2006, and I keep my feet on the ground, running!
I live on a small island in SE Alaska, pop: 3000.  I commercial fished for 13 years from Alaska to California.  I "retired" in 04' to a job buying and selling commercial fishing equipment and gear, and managing a marine railway, weld shop & custom wood shop.  My wonderful husband Frank was US Coast Guard when we married, and now is an engineer on a Tug Boat.  No kids...yet, but have 3 awesome dogs that keep us busy.

That is me in a nut shell! Much love to the newbies, this online family is a miracle.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This is the happiest day of my life.  And yes, I did plan my wedding in a month I knew I wouldn't have a CH cycle.

Love the Lambert's

angela.lambert wrote on Nov 28^th, 2009 at 9:35pm:
WooHoo......Guess who I'll be calling when I finally make it to Alaska 

Please hold for a pic of my clan 

Hi there,

My names Darren, 42 tomorrow and i live in South East London. This is me and my cool and very understanding wife Liz.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I have been suffering in silence for over 15 years now and was diagnosed with CH only 2 years ago. I had a years remission last year but now the beast is back to haunt me whilst i sleep again. The hits have been bad so far, as high a a 9 on the kip scale.

I just want to say again "thank god I'm here" and I'm now looking forward and feeling strangely positive in battling the beast for once with the help and essential info from you all.

Hello crimsonserpahin-
Welcome! You did thread in a OK spot.  But, for more responses and more info from the peers on here, try just below this, in the Board Topics.  Start a new topic and tell us more about yourself.  What you posted was really good, but add in some of your med's that you have taken, what worked and didn't.  Trust me, you will get lots of feedback!
So sorry you have CH, but I am soooo glad you found us!  It was a God-send when I found this forum.  It is like a big family.
Talk to you again, soon I hope.
Angela

Quote:

Matt - It sounds to me like you've diagnosed yourself. Have you been diagnosed by a neurologist or headache specialist?

Your pattern doesn't sound to me like CH. Not that we don't want to help, but you need a firm diagnosis of CH for most of the advice here to work. If it's a different condition, there may be far better treatments that will bring you relief.

Hi everyone, shaggy here.  I too, am very thankful for the support I have found on this site and 1 other.  Thank you for the organizers and input'ers.  I have been enjoying (NOT!) my cluster visits for 25 years now and finally diagnosed by my alergy doc about 4 years ago.  I thought it was my eyes for awhile, then I thought it was allergies, then I didn't know but it didn't seem to kill me....When I looked it up online all of the symptoms matched perfectly and I continued to read and read and read........to see who was doing what and if it was working. 

I have always been an episodic and if I could bear it for a few months it would be over for a year or so.  I only got 1 per day, 1 hour of crazy pain.  I had figured out a pretty good caffeine regime to mitigate the pain.  It sometimes worked very well, but sometimes I got the big cluster pain and spent the next hour pressing my fingers into my head as I sweated, drooped and wondered if this was finally the time my head would explode.

I had a very sensitive job where I couldn't really say I was having headaches and I decided to caffeinate and take the pain rather than lose the job.  Even though we get slammed with these things, it is amazing what you can do when you have to, right in the middle of a Kip 8 or so. 

This next part I will say, but I won't recommend it because it won't meet standard medical protocal (otherwise known as 'this is what I did, not what I am telling you to do'.  Although I would do the same thing again).  About page 3 of my google cluster headache search is a website, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or that talks about 'alternative treatments'.  These are showing great promise and I have been mostly successful for a year on the treatment. 

There is further medical research underway and like I said, this is something people should be aware of and decide if it is right for you.  I don't see a lot of mention of it, but given the disaster of a life we all have when we are in our cycle, the more information the better.  I have been able to avoid my cycle twice in 2009 and having waited too long a few weeks ago, I am aborting my cycle now with small Kip's every few days.  I am still fine tuning my doses.

Good luck everyone.  Looks like a Portland, OR meeting this year?  See you here!  A couple of us may get together before that in town, so message me and join the small Portland crowd.

Shaggy

Hi, my name is Debbi and I am so glad to have found this site. I am 37 and I have had CH for 16 years and been missed diagnosed for 15. I was diagnosed with everything from TMJ to cervical ridiculopathy (that mostly came about because the CH started about a month after a severe whiplash injury) after a diagnosis of Trigeminal Neuralgia sent me to a neurosurgeon to be treated for that with the gamma knife. He was the one who finally got it right. The ironic part, I have had a neurologist for 15 years for migraines but never discussed them with her because it was never considered to be a "headache" by anyone I saw.

After reading about so many of you, I actually feel lucky. My cycles are every 16-18 months and last 4-6 weeks although high dose steroids will shorten that. And during the cycle I will have one every 3 days like clock work. I don't think I could stand 2 every day. It is just too painful.

I am just so glad to have a real diagnosis now. I started a cycle last week.  I actually used information from this site and couple of others when I saw my doctor today and I will see my neurologist tomorrow to see what her ideas are. For the first time I will be trying SQ Imitrex.

And it is so exciting to find out I am not alone and more importantly NOT crazy!! So many times there have been doctors out there that have acted like I was either crazy or drug seeking. Although I will say this for my PCP, he has stuck with me through the years, even when he was just guessing (wrongly many times) he never gave up and he never made me feel like I was crazy. And strangely enough, even guessing wrongly we were treating it right, I have been doing steroids and ice for years.

Once again, I can't tell you how glad I am to be here.

Hello!!
My name is Andrea. I am a life long Migraine sufferer & since my last pregnancy began I have been plauged with what I thought were "chronic demonized migraines with sharp teeth on steroids" I have been in a constant cycle of trying to overcome the headaches ALL DAY, only to go to sleep at night& have the ENTIRE CYCLE Begin all over again!! I was voicing my concerns and complaints to my doctor my hubby & friends ANYONE WHO WOULD STILL LISTEN!! The main things outta my mouth were; I no longer refferd to my headaches as migraines, but instead would call them "ATTACKS" because when they hit they WERE SO STRONG! & would come on SO FAST! It felt like or reminded me of some sort of demonic possesion, or an "ATTACK". I was getting strong feelings of a suicidal nature during my "ATTACKS" I was NEVER a suicidal person in the past & even my worst migraines that I had lived with through out my life before were something I would try to sleep through, but I CANNOT SLEEP or EVEN LAY DOWN anylonger when I am attacked. After an ER trip I would come home & often felt as bad as I felt BEFORE I went. If you see NO WAY OUT & you CANNOT cope with the pain anylonger Suicide naturally comes to mind. Though as time was going on and I felt more & more isolated & alone it has become something I now fear, just as I fear the attack. The two go hand in hand.. I can have remissive days I am on day 3 of remission right now. The longest remission I have had since the birth of my baby (JULY 08) has been 2.5 weeks. I was able to obtain these remissive states by using botox every ten weeks (though days before its time to re-up my botox I am thrown back into a horrible cycle of headaches that last weeks before they are quieted down again, last time 5 weeks to be exact) And  combine the botox with 100mgs of amatriptalyne, and 10 days ago my doctor added in neurontin hopping to get me more time in remission.. I have completely changed my diet, I do not eat processed foods or sugar, at all. I drink ionized water, as much as I can. I CANNOT TOUCH ALCOHOL, or I am thrown into facial sweats and the headaches begin.. Some days I live with the headaches "shadow" living inside my head. Some days its a faint wisper of a reminder, that it is in there, & I'd better "WATCH OUT!" and other days it its, or can get up to, a very persistant painful nagging that comes and goes with all the symtoms it brings ALL DAY LONG. And on those days I find myself petrified to do anything!! Knowing that at anytime it can become a full blown SUICIDE headache..
So last week after another full blown attack, I was losing my strength & will to fight & live. The fear that my death could come as a result of these headaches became VERY REAL & the skipping sleep to avoid the headaches only intensified this fear. So once again I began to research migraines, trying to find SOMETHING to save my life. When I stummbled across the info on CH & was in an absolute shock at what I was reading! I couldve written it myself!!! I was reduced to tears once again! I have cluster headaches!! I am not alone!! The things symptoms I talk about & feel are NORMAL for cluster headaches & others who suffer think & feel them, just like me! Because I have always had migraines Im just not sure when these CH began.. I thought I was dealing with just migraines this entire time!! The guilt had become overwhelming! Why couldnt I just take my maxalt, or zomig and SHUT UP? I had begun to think that my inablaty to feel better was a personal failure, or fault! Thank God!! I found the answer!! Though the outlook still isnt "great", my strength and will to fight that drives me forward through this MADDNESS that had become a dim and dying light, now feels renewed at this new revolation! I feel my hope again! And while I feel well (which unfortunatley, never lasts to long) I want to read all your stories and absorb as much info as I POSSIBLEY can. Thank you all, for being here, and particapating!! I believe my life depended on finding that there ARE OTHERS like me!! I am CH "normal", and not some human freak or fluke of nature! I also posted more of my story in the guest book. I am excided to have real support in my life by others that know my suffering, just as I do.
Thanks for reading!! ~ Andrea S.
Picture; Me & My hubby (George) who is a rock of support to me through out it all. He always gives his all to trying to understand what I am going through & pick up the slack when I am debilatated and cannot even help myself. My family would be broken into pieces, if i wernt for him! When we say for better or worse we dont always expect the "WORSE" part to become reality, as it has for us the last  2+ years.