Hello there fellow sufferers,

I’ve been poking around this forum/site for a few hours now and I want to thank each of you who post regularly for making this an active community. It’s an incredible relief to find a place where I can educate myself and read the experiences of others who are dealing with this unwarranted affliction. I already have several questions for those of you more versed/experienced than I am, but before I get around to asking for things it seems appropriate for me to introduce myself and provide a bit of background information.

So, my name is Jonathan. I’m 28yrs old, I’m married, I have 2 daughters, I live in Southwest Missouri (Springfield), I work for a software company, and I have been suffering from episodic cluster headaches for about 13yrs (or so). I feel lucky in that I typically only go through 2 or 3 cycles a year…and have even managed to skip a year or two in the past. To those that deal with this chronically – I can only imagine. My story seems more common today, after reading these forums, than it ever has.

I started getting headaches at night at about 15yrs old. I remember waking up already in tears, I would stumble to my parent’s room and my mom would give me 2 Tylenol, a cool wash cloth, and then send me back to bed. I always ended up lying on the bathroom floor until the episode passed…still do. Anyway, my headaches occur almost without fail on my left side. My left eye gets very bloodshot and “swells.” My nose almost always runs on the left side, and in some more extreme episodes I have lost some motor function on my left side and have experienced very incoherent thought. Sometimes I hurt so bad that I can’t make sense of anything. Those are the more frightening nights. I’ve tried beta blockers, Prednisone, and caffeine pills. The Prednisone was helping at one point, or at least I felt like it was, but now it doesn’t seem to help much. I never had much luck at all with the beta blockers or caffeine. Anyway, if there is anything that anyone needs to know background wise that might help then just let me know. I’m happy to share and very excited to get to know everyone.

Again, I appreciate those of you who have made this an active community and who maintain the site. Just knowing there is a place to go to read has already lifted my spirits. 

~Jonathan

Hey there, Jonathan, and welcome. You wrote:
Quote:


Often the problem lies in the dosage being way too low to help us at all. What have you tried specifically and in what dose? Have you encountered O2 as an abortive?

It is our experience that the wrong dose is as defeating as is the wrong medications. God bless. lance

Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work. Having a working knowledge of what you need will make it easier to discuss with your doc.

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

This link will show you how to get set up with welding oxygen:

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Joe

Joe - Thanks again for the info, i started the vitamin regimen last night and have made a call to get into a new primary care physician. I'm hoping to bring that list of Docs that you gave me and ask for a referral if she is unfamiliar with CH's and/or unwilling to prescribe the O2. I'm not sure if it's related to the Vitamin's or not, but I had a much easier night last night, only woke up once and was done in about 20min. Sound rest comparatively.

Lance - You're spot on in your evaluation of the Doctor I was using. I credit him with diagnosing me, but he admittedly new very little about them. The Doctor I'm going to go see was friend of my father's, so I'm hoping she listens and is interested in helping out.

Thanks again to both of you.

~Jonathan 

Jonathan42584 wrote on Feb 22^nd, 2013 at 11:35am:


No.  The plan WILL include O2.  That particular Doctor is the optional part.  If he doesn't approve of O2, find one that does.

wimsey1 wrote on Feb 13^th, 2013 at 8:31am:


Just for the record on this one, the Ergotomine Tartrate+ Caffiene mix goes by several commercial names, Caffergot and Migril are two that I know of. Its not terribly useful as an abortive as it takes about 30 mins to work, but if you're having several attacks in a day it works wonders to prevent the reoccurring hits. It was my silver bullet for many years and is still my fall back position when all else fails.