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

Welcome to the board, here's some docs in the missouri area other sufferers have used succesfully, any near you?

Ballwin:
Dr. Andrew Y. Chao (PCP)
Hannibal:
Dr. Brett D. Hosley
Hannibal Clinic
Kansas City:
Dr. Charles Weinstein
Neurological Consultants of Kansas City
Kennett:
Dr. Gustavo Adolfo Granada

St. Louis:
Dr. Juan C. Escandon
Multiple Physicians
Ryan Headache Center

Glad you poked your head in, do check out this new regimen, it's had me off cycle for almost 3 years now.

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

Joe

Hey there, Jonathan, and welcome. You wrote:

Quote:

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.

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

Joe - The Doctors in KC aren't far. I really appreciate you posting that list, I'm going to do my best to find a Doctor today. I've only seen 1 Doctor in the area, he actually diagnosed me about 4 or 5 years ago (I had previously never heard of CH's), unfortunately he moved away though and I haven't sought treatment since he left. I feel a bit guilty saying it, because I feel like i'm complaining without taking some responsibility, but the last several years I've been trying to just buckle down and ride it out until the cycle passes. That worked out ok until this month. I'm going on week 5 now and I am completely exhausted. Had about a 4 hour go last night,  still feeling the shadow and some soreness/blurred vision this morning...I'm sure it will pass though. Anyway, I'm also very interested in the supplements and will start that tomorrow. Thanks again for all the great information.

Lance - I wish I could remember the dosages for you but it's been several years since I've taken anything. I do remember that the Beta Blocker was Verapamil and that the caffeine was ergo-something. I have not tried O2 as an abortive, in fact, reading this forum is the first time I have heard of it being used...but as soon as I can get into the Doctor I'm going to ask for it. The success stories on the forums about people being able to fight them off are extremely encouraging to me and I'd love to have some tools available when I know I'm about to go a few rounds.

~Jonathan

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.

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

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

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


Joe

The ergo-something you mention was a combination of caffeine and ergotamine, sometimes labled as "ercaf." It's primarily an old migraine med and not terribly useful for clusters. It does sound as if you are working off an old script used by doctors who really don't know a thing about CHs, or at least not enough to distinguish them from migraines. A specialist is your first order of business, and good abortives are your second: O2 in high flow (15+ lpm) along with a trial of preventatives. Many of us believe the longer we go without effectively aborting our attacks, the longer the attacks linger. God bless. lance

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 

   

Greetings again!

I wanted to take minute to let you guys know that I think my cycle has passed. I have had 2 headache free nights in a row and I passed the beer test (Yuengling!) last night! I'm still scheduled to visit the Dr in early March and am excited to try and develop a abortion plan that includes o2 if the Dr is willing. It's hard for me to offer credit right now, but I did start the vitamin regimen 11 days ago and am excited to continue it going forward.

Thank you guys very much for your help/recommendations and here's to hoping that each of you who are still suffering finds a way to move forward.

I hope to contribute to this community going forward and would be glad to offer any support that I can.

Joe, Lance...thank you.

~Jonathan

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

o2 if the Dr is willing.

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

Hey Jonathon,

Thanks for your last update...  Even though it appears your episodic cycle has ended...  and you've passed the beer test...  I wouldn't stop taking the vitamin D3 regimen any time soon... 

In fact, I suggest seeing your PCP and getting the lab test for 25(OH)D then adjust your dose of vitamin D3 and the cofactors to keep your 25(OH)D around 80 ng/mL...  10,000 IU/day vitamin D3 should do that for most of us.

Take care,

V/R, Batch

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

The ergo-something you mention was a combination of caffeine and ergotamine, sometimes labled as "ercaf." It's primarily an old migraine med and not terribly useful for clusters.

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.