My name is Catherine. I'm glad that I found this site, and I'm looking forward to talking with people who know what I'm going through. I've suffered from CH since I was 17 (I am now 24). My cycles usually last one month, and then I'm in remission for a year. Recently, I've been getting them every other year, which has been amazing. However, I'm about 3 weeks into a cycle right now, and I feel so frustrated. Nothing works to relieve the pain, and I keep crying out for someone to help me, for these stupid things to just go away. Advil, Excedrin, and other painkillers do nothing. My attack last night started at 4 a.m., and lasted well into the afternoon (although the pain started to dull by then). My head still feels sore, and I'm walking around in a daze. I had to miss work and class today, and I'm scared to fall asleep tonight.

How does everyone manage their lives with this horrible pain? Like everyone, I have responsibilities that are hard to just "put on hold". Between grad school and my job, it's impossible to keep up; and I doubt my professors or my boss really understand. I wish I could "work through it", but it's impossible to function, as you all know. Ughh. I just want my cycle to be over. I know it should be over soon, but right now I feel like  will never end. I feel so miserable every day.  :'(

Anyway, it's nice to meet everyone. I hope I can find some relief here with people who understand.

Hi Cat,

Do you have oxygen?   

Jeannie

While you're busy getting yourself to a qualified headache specialist or neurologist for a proper diagnosis, preventative plan, and abortive strategy (Jeannie mentioned O₂, which is a primary abortive), click on this link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Print out many copies and give one to each person to whom you don't wish to explain yourself anymore.

Now get busy. You have work to do.

Thanks - I like that letter. I'll definitely pass it along! No, I don't have oxygen - but it sounds like a lot of people find relief from using it. I've never gotten around to talking with a doctor about O2 therapy, mostly because by the time I get an appointment, my cycle is over and I'm "cured" for another 1-1.5 years. Would a doctor actually prescribe O2 therapy during a remission period? I'd feel nervous buying an oxygen tank and using it on my own without a recommendation from a doctor...

Cat wrote on Jan 26^th, 2010 at 4:00pm:

How does everyone manage their lives with this horrible pain?

I guess you're getting the impression already that many of us get proactive about fighting this beast off. The lucky ones amongst us find significant relief and only have to do a minimal amount of managing the life with horrible pain.

It's not the old, weak O2 therapy that doctors still prescribe that is the most effective BTW. You'll have to educate yourself here on this site about it and your other back up options. Don't strictly rely on what any doctor tells you to do/take.

Here's the O2 info:
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Cat wrote on Jan 26^th, 2010 at 4:39pm:

Would a doctor actually prescribe O2 therapy during a remission period?

Why wouldn't they? If they understand the nature of this affliction, they would want you to be prepared, right?


Quote:

I'd feel nervous buying an oxygen tank and using it on my own without a recommendation from a doctor...

Your choice. Feel nervous or feel better.

Welcome Cat.
   stick around, and read all you can.  Youll learn how to manage it better, and even if you just need to vent we are here for ya
   Do try to get the Oxygen....you won't be sorry.

good question catherine, how do we all manage our lives?  i think we find the things that work for us and stick with it.  i am a big fan of caffeine to ward off my pain, but i have to take it right away or just before my usual morning start time and then follow it with an afternoon pot of tea, coffee or nodoz. 

clusterbusters.com has some useful ideas, check it out.  i believe i have just aborted my current CH cycle (a few more days and i'll know for sure) and aborted 2 whole cycles in 2009.

hang in there we all find ways to cope and there is lots of good info on the web.  i first got mine when i was in school and didn't know what they were.  i went on to a successful piloting career and just dealt with them.   i think i finally am getting the upper hand on these things after 25 years.  if these sites were around when i was younger it would have been a lot different. 

--shaggy

ps, just to throw it out there, i have never seen a neurologist and believe i would be in about the same place now but a lot poorer if i had.  i know it is important to rule out other more life threatening things initially (so i am not saying that people should do what i did), but i kind of think that everyone here will have as good as advice as a headache specialist. (feel free to throw tomatoes at me for saying that, just be gentle i am tender.)

Please, don't assume you know your diagnsis! There are many disorders which have symptoms of cluster but which are not cluster headaches. Find a good headache specialist, not a general neurologist, if at all possible.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.