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        New Message Board Archives >> 2002 Posts >> Advice needed, do you think I'm going chronic?
        
(Message started by: Macgyver on Dec 28^th, 2002, 10:02pm)

Title: Advice needed, do you think I'm going chronic?
Post by Macgyver on Dec 28^th, 2002, 10:02pm

Before I type anything else, I should mention, I've been lurking, so it's not like I'm a 1st-timer here. (you guys can be rough on newbies, and rightfully so in most cases)

I don't have health insurance, nor have I ever since I've gotten clusters.

I'm a 24 year-old male.

And please save the messages saying how lucky I am so far, I've read the horrors you guys go through, my clusters are like papercuts compared to most of you, I realize this.

1st cluster was around 2 weeks, mid-winter of 99.

Second was 1.5 weeks, early summer of 2000. (1st time I tried Imitrex, and it worked great)

Third was just shadows, spring of 2001, water REALLY helped.

Fourth, early spring 2001, just shadows, Excedrin Migrane and water.

5th: I'm 23 days into this one, as of now. Water isn't effective at all. Can't afford imitrex. I was prescribed Fioricet, which was useless. Ephedrine works great, but of course, I feel like crap taking it, and I'm aware of all the dangers.

What's really weird about this one, aside from the length, I've had 3 pain-free days, seemingly random. I've had more than one a day in this cycle and previous cycles, but as of the last week, it's one per day, either when I wake up in the morning, or in the middle of the night.

I know, I need to find a doctor that actually knows what a cluster is, and find a med or meds that work for me, that's just not an option for another two weeks.

Just asking your opinion, I figured maybe someone might relate.

(PS: If you wanna scream "shrooms!" Feel free, I've read all those posts too :) )

Title: Re: Advice needed, do you think I'm going chronic?
Post by OneEyeBlind on Dec 28^th, 2002, 10:13pm

You are defined as chronic once you hit a year and have not had more than 2 weeks pain free. So, with a cycle as short as your so far, I would say - No, you aren't chronic. Welcome to the board by the way !!!

Title: Re: Advice needed, do you think I'm going chronic?
Post by Macgyver on Dec 28^th, 2002, 10:25pm

Thanks :)

I'm just worried that I'll fit that definition eventually, I don't know how I could live like that.

Title: Re: Advice needed, do you think I'm going chronic?
Post by Not4Hire on Dec 28^th, 2002, 10:36pm

Welcome MAC........ stick around..... it just may get better (or worse.....whodafuckknows.....?)

....and what does dat little deal *under* the SwissArmyKnife logo REALLY do?

;D

Title: Re: Advice needed, do you think I'm going chronic?
Post by domm on Dec 28^th, 2002, 11:19pm

Mac - welcome to the board. My first cycle was 8 weeks, with 2 1/2 yrs remission. Second cycle was 16 weeks, with 2 1/2 yrs remission, third cycle was cut short using verapamil at about 6 weeks. Yours sound really short. I think the norm is around 6 weeks.
Hang in - it will end soon.
domm

Title: Re: Advice needed, do you think I'm going chronic?
Post by paul_b on Dec 28^th, 2002, 11:58pm

Too soon for chronic. Yes, this disease increases anxiety. Dealing with it as well as the pain is all part of the process. Keep posting, useful ideas will come your way.

Title: Re: Advice needed, do you think I'm going chronic?
Post by Macgyver on Dec 29^th, 2002, 12:19am

I'm trying an experiment tomorrow, I expect my next headache around 1-2pm, I predicted the last one the night before it, I'm pretty sure I can get the next one right too.

Anyway, the two years I was in remission, I was WAY more active than I am now. I've got alot of work to do to both my cars, so I think I'll try to get out there and tinker all day, stay active, on my feet, even if it is 20 deg outside. I'll let you know how it goes.

BTW, I'm between semesters at school right now, don't go back till the 13th, so I'm lucky not to have any obligations..

Title: Re: Advice needed, do you think I'm going chronic?
Post by Macgyver on Dec 29^th, 2002, 8:36am

Well, hell, nevermind, I've had two since that post..

Title: Re: Advice needed, do you think I'm going chronic?
Post by OneEyeBlind on Dec 29^th, 2002, 9:32am

Mac your cheapest solution would probably be O2. You can buy a tank rather than renting one. Perhaps Jonny could steer you in the right direction there.

Title: Re: Advice needed, do you think I'm going chronic?
Post by Jabeen on Dec 29^th, 2002, 10:11am

Like you-my experience is basically "lucky" compared to many on this board- I had my first bout at 45. That lasted almost a year, but for much of that time I didn't know what I had and once I knew and found a good neuro, it took months to find a med that worked. The inknown factor is whether or not they would have gone away on their own or not at that point. Then they were gone for 5 years!! Now they have been back for about 6 months. I went immediately back on the meds and it seemed to hold it in check (1 every 7-10 days, only at night, and never more than a 6-7) Lately they have been increasing in occurence, but not too much in intensity. I had several on vacation the past weeks and every night since I have been home-and shadows. Its scaring me that its going the wrong way. I hate that there is nothing I can really do to predict where it is going and stop it. Good luck-

Title: Re: Advice needed, do you think I'm going chronic?
Post by j.halber on Dec 29^th, 2002, 8:41pm

You will know soon enough if you are cronic,so don't worry about it now.What does it matter anyway?It won't help them go away, that I can promise you.But really none of us or you are lucky or we would't be here.I really hope for you that it stays under control!!!Take it from a person who has had them every day for toooooo many years; it will not let you predict it or tell it when to go, so don't waste your energy trying. It's just not very easy at all but you CAN get through it.GOOD LUCK!

Title: Re: Advice needed, do you think I'm going chronic?
Post by Drk^Angel on Dec 30^th, 2002, 4:41pm

Welcome to the board! Sorry that the beast isbanging your cranium like a drum using a red hot sledgehammer as a drumstick. Good luck!

PFDAN............................. Drk^Angel

Title: Re: Advice needed, do you think I'm going chronic?
Post by JoeyT on Dec 30^th, 2002, 5:22pm

Like others have already said ' don't worry about becoming chronic' just get some relief. When I first read about O2 I really didn't think it could possibly work...to simple, no side effects and cheap. As long as you don't have insurance renting might be the way to go. I think the whole setup runs less than $50/mo. refills are about $15.00. It really is worth a try. Just make sure you are doing it correctly. The difference between total relief and NO relief is as simple as the type of mask you use and the rate you use.

Where are you located? There are several places in the Chicago area that could have you going in a couple hours.

Good luck, my friend.

Title: Re: Advice needed, do you think I'm going chronic?
Post by jonny on Dec 30^th, 2002, 6:42pm

on 12/28/02 at 22:02:22, Macgyver wrote:

And please save the messages saying how lucky I am so far, I've read the horrors you guys go through, my clusters are like papercuts compared to most of you, I realize this.

Never ever say CH is like a papercut, chronic/ episodic, it all hurts the same.

You say you have been lurking?, then you know who I am.....If for some stupid reason your Doc wont give you 02 you just E-mail me and we will get you some.

....................................jonny

Title: Re: Advice needed, do you think I'm going chronic?
Post by Macgyver on Dec 30^th, 2002, 8:15pm

I finally broke down and went to the doc, he gave me 10 imitrex pills, took two and The throb seems to be disappearing.

He also referred me to a Neurologist.

I'm going to demand a CPH test (50mg Indomethicin), after some more research, I think my headaches may not be clusters. I have all the cluster symptoms, except one, I can't move when I get one, moving makes it twice as bad. I can't tell if I'm senistive to light or sound because I rarely get them in the day, only when I wake up, and I'm sensitive to light in the morning anyway..

And another odd thing, I have a steam humidifier, if I stick my nose in the steam and breath it, I feel better. The acute attack is gone.

I wake up with a headache, and generally, 5-6 hrs of shadows later, I'm ok. 5-6 more hours later and it all starts over again.

I'm also concerned about all my self-diagnosis, I'm worried I'll word my symptoms to get the result I want, but it's hard not to when Docs really don't know jack about CPH or CH.

Thanks for all the support :)