Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Getting to know AX
        
(Message started by: ax on Dec 1^st, 2006, 2:51am)

Title: Getting to know AX
Post by ax on Dec 1^st, 2006, 2:51am

Hello my fellow warriors!
I'm 32 years old and been fightin the beast since mid Jan. 1990.
I nerver had a headache before, so I thought this was a standard HA. Having been raised "Trailor Trash" if you will, too poor for doctors, aspirin, etc., as well as the general embarassment of being weak, I would hide in the bedroom, lay down and squrim and flip like a fish out of water. I quickly learned that laying down to get rid of a HA was bulls**t. Pacing and sitting up straight became my dance. Not sure if I was chronic, but I know that I was never in total remission I was always at risk. Went on like this for about two years. Finally got a total remission and thought that was it. I'm done!... WRONG ...switched to episodic 3 weeks on, 3 months off.
Visited my grandmas house and found a medical book. Started reading about headaches and there it was... exactly what I was going through, CLUSTERS! By this time I had discovered the benifit of caffine and had access to aspirin and tylenol. Finally got a job with insurance and went to the doctor, who sent me to a neuro. Neuro told me it was clusters, but I already knew that. I just wanted that magic pill, you know, the cure. Then he says lets try prednisone. "Let's try? You mean you can't fix this!" So I take the prednisone taper. It didn't work. Before I knew it, I had half the Wal-Mart pharmacy in my cabinet. To be honest I don't even remember all the stuff I tried, Butalbital and Sansert and a bunch of other crap that didn't work. Finally I realized that all I had was pills and bills.
Well now being a little more fortunate, I have a clear cut cycle with remission that gets a little longer each time. Last remission was just over 2 years! WoooHoooo! I don't go to the doctor anymore, although I did go to try O2. Then tried Zomig. They worked kinda. O2 gave me bad rebounds and Zomig slowed my pulse down to about 45 bpm. Now I just deal with it. I've read about the hypothalamus and it's functions. I think the reason we are all so much individuals when it comes to treatment is because the hypothalamus has more than one function.
I know that my primary disposition is in body heat regulation, with insomnia being secondary. Currently I have success with the beast by taking a thermogenic stack. This brings my body temp. up to about 98.2 when normally it is about 97 degrees or less in a cycle. It also helps with vasoconstriction.
I take a small amount of melatonin - 1.5mg is good enough for me.
I also take vitamin C and B6 - the B6 usually comes from Red Bull. I don't know if vitamins help, but I think of them as insurance, and they don't hurt.
When I get hit, I take 1500mg of crushed aspirin with a luke warm cup of strong coffee. I still have to dance for up to a half an hour, but it is tolerable. If I try to fight naked- no meds- the HA will last about 1.5 to 3 hours.
Well that's all I have to say for now. Thanks to all who took the time to read this.

Title: Re: Getting to know AX
Post by bothofus on Dec 1^st, 2006, 4:42am

Hello, I.m a little confused by your post.
Ya said,
"I'm 32 years old and been fightin the beast since mid Jan. 1990.
I nerver had a headache before,..."

Trailor Trash? Kinda beating yourself up there.

Don't know what a "thermogenic stack" is tho.

Anybody else care to reply?

Carl

Title: Re: Getting to know AX
Post by E-Double on Dec 1^st, 2006, 7:55am

on 12/01/06 at 04:42:08, bothofus wrote:

I'm sure our new friend meant never had a headache prior to what he believes was his first cluster attack in 1990.

Welcome to the nut house ;)

Title: Re: Getting to know AX
Post by Giovanni on Dec 1^st, 2006, 8:56am

Hello Mr. AX,

Sorry the beast is back for you :-/

I never heard of oxygen giving someone rebounds--I have had it not work well or long for some headaches, but I know we're all different.

Also, with the amount of aspirin that you taking could present some significant problems with rebounds and stomach problems. Some people will take excedrin migraine (sparingly) with red bull at the first signs.

And yep, the coffee does help. Go over to the taurine threads and read a bit. Also, floridian's headache book has some helpful remedies:

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage

One suggestion that I can make is to strick around even after your cycle as you can gather information and treatment options for your next bout and perhaps help other people.

John

Title: Re: Getting to know AX
Post by CynthiaB on Dec 1^st, 2006, 1:58pm

I have read more than one person refer to 'rebounds' from O2 use. I don't know if they mean 'rebounds' in the way I think of 'rebounds' - as in a bigger hit than I started out with before I tried the treatment.

O2 doesn't work for me. And yes, I used it properly and on more than one occasion. I didn't 'rebound'. But I was pf while I used the O2 and my cluster returned when I took off the O2. Not Bigger. Just Back.

This may be what Ax means by 'rebounding'. My neuro says some of his other patients have reported the same thing, so it can't be that rare.

I'm sorry you're in pain, Ax...but I'm glad you've found us. Welcome ;)

Title: Re: Getting to know AX
Post by ax on Dec 1^st, 2006, 4:45pm

Quote:

I.m a little confused by your post.

bothofus - before my first cluster I didn't have any other knids of headaches.
- Trailor trash is a joke, it doesn't bother me.
- Thermogenic stack is what body builders use to keep their body fat down. The very controversial ephedrine with caffine and aspirin. I use to use it for my strength training, but now I save it for my cycle.

Quote:

Welcome to the nut house

Thanks E-Double. Good to be here.

Giovanni - exactly what CynthiaB said -

Quote:

I was pf while I used the O2 and my cluster returned when I took off the O2. Not Bigger. Just Back.

Also yes, the aspirin does get to me if I take too much. This is when I switch to tylenol or just go without.

Also this post is just my way of dealing with it and by no means do I consider it a medical treatment. I only get hit once a night, and maybe once in the daytime, but daytime ones are mild.

AX

Title: Re: Getting to know AX
Post by BB on Dec 1^st, 2006, 6:26pm

Hi, welcome, sounds like you have your HAs under control so I wont say much more, just asking since you are a body builder, have you tried vigorous exercise at the first sign of the hit? Some people here finds it can abort a hit. Also have you tried putting ice on the neck and temple and eye? It can help sooth the pain.

Take care and thanks for sharing your experience.

Annette

Title: Re: Getting to know AX
Post by tanner on Dec 2^nd, 2006, 4:50am

Welcome and I hope that your regimine of dealing with this monster continues to work for you. It is a bit unortodox to say the least, but hey around here nothing surprises me. I find that O2 works the same for me as you describe although I can make it delay the hit a little while longer if I am lucky enough to see the HA ramping up early and if I chug a "bull" right before using it. I had one of the most sudden K10's yesterday that I have ever had and it happened within 10 minutes of taking an Excedrin Migraine. I usually steer clear of OTC's but I was trying to lower my constant shadow so I could make it through a class I was in and retain what the instructor was saying. I won't be doing that again anytime soon.

I seem to be rambling so I will leave you with the Welcome and nice to meet you......Tim

Title: Re: Getting to know AX
Post by ax on Dec 2^nd, 2006, 11:40am

I woke up at 4am with a k4 and started pumping iron. In about 10 min I was at about a k7 and continued to do some dead lifts thinking blood will go to my legs. Went to a k9 and I gave up after about 20 min. Paced at k9 until I could sit. In all the HA lasted about an hour. Maybe try this again if I have an attack in the day if I'm at home. Not for the night hits though.

Sorry to hear about the k10 tanner. I have had same experience with advil. My thing with otc's is that I can't afford to go to the doctor all the time. Especially now that I've started a contracting buisiness and there's no insurance. Mostly I wanted to tell my story cause I know there are other people who are like me... or maybe not...

AX

ps I do a lot of lifestyle changes when in a cycle too. It's not all otc's. Things such as sleeping upright as possible in my recliner, meditation (I focus on my heartbeat and body), peppermint coffee, as much joking and laughter as possible - I try to find the "funny" in everthing, I have a blacklight room that calms me, and so on... I don't try to kick the beasts ass cause he always wins when I do. I listen to the beast and plan my next move...