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(Message started by: Tar on Nov 13^th, 2006, 5:11pm)

Title: New Member
Post by Tar on Nov 13^th, 2006, 5:11pm

Hello, my name is Anthony

Had my first cluster headache about 11 years ago, was misdiagnosed until about 5 years ago when I moved to a new town and ended up in the ER because of the pain. Frequency of attacks has stedily been increasing over the last couple years, used to be active only about the end of September to the beginning of December, 2 or 3 short attacks, a week or two at the most, and only a couple attacks each day.... now, however, the demon rears its ugly head around the middle of August and doesn't seem to go away until well into the Spring (end of April/beginning of May) with several week long attacks, occasionally a few that I can't seem to shake for over a month, and I now get up to 6 attacks every day during a cycle, generally lasting for a couple of hours (current one which hit this morning felt like an eternity but was only an hour and a half), I do occasionally get a milder cycle with the same number of attacks but they only last about half an hour.

Anyway enough about all that boring crap, I was wondering if anybody could give an opinion on tricylic antidepressants used as a preventative medication, my doctor recently decided to try me on them (not sure if they are going to work, 3 weeks of taking them already and they didn't prevent this one). Unfortunately I've tried just about every possible abortive and nothing seems to work, the best I can do during a cycle is just to take enough pain killers to completely numb it, but my doctor wasn't too fond of my drug of choice (percocet), although I can't blame him, I hate taking the stuff and always had to push myself to the brink of insanity before I'd take it. So this season I've gone back to some OTC medications (always found Naproxen to work somewhat well in comparison to others, so between that, muscle relaxants and Benadryl I can keep myself pretty well sedated)

As a follow up question to asking for comments about the tricylic antidepressant, can anybody possible recommend an alternative to this course of action if it ends up that it does work, I'm not too fond of the idea of being on antidepressants for the rest of my life (long story short, depression kind of runs in the family and I was lucky enough not to get it and I don't want to take the chance of these pills triggering something that could be laying dormant in me).

Thanks for any help
Anthony

Title: Re: New Member
Post by Guiseppi on Nov 13^th, 2006, 5:27pm

I don't recognize the class of drugs you are talking about so i can't answer those questions. It's funny you said depression runs in your family. Mine too. 2 of my sisters use Lithium to help them with their maladies. I use Lithium as my preventative for CH when on cycle. When my doc first suggested it I shied away cuz I thought of it as "Crazy people drugs!"

I'm male, 46, weigh about 190 pounds. I use 1200 mg of lithium a day when on cycle and it aborts about 90 plus percent of them. Close to 100% if I'm religous about avoiding my triggers. I use oxygen and cafergot for the break thrus, and rarely when I get slammed I'll use the imitrex injectables.

I've been using the lithium forever, I've lost track of how many years, and haven't developed any additional problems from it. Hope it helps.

Guiseppi

Title: Re: New Member
Post by kcopelin on Nov 13^th, 2006, 5:50pm

Anthony,
Tricyclic anti-depressants, like Elavil, work for some folks. My doc had me take 5 mg at bedtime to help the night time hits-I found melatonin worked better. You got a lot of reading to do here my friend. Check out the stuff on the left. Have you tried O2?
Also, some people have reported that their cycles got longer, more intense or randomized over time. Not good news. On the other hand, some people are pain free now for no apparent reason.
Knowledge is power, so read all you can. I can't answer to an anti-depressant triggering some dormant depressive tendencies.
PFDAN y'all,
kathy

Title: Re: New Member
Post by Tar on Nov 13^th, 2006, 6:08pm

I've already done alot of the necessary reading, only tried oxygen once in the ER, it really seem to do much, I've never had access to it at the first signs of an attack. For the record my doctor put me on 10mg/day taken at bedtime, but as I said its probably too soon to say whether or not it is working, I've seen alot of mention of melatonin but I can't say that I know what it is. I've pretty much conceded the fact that I'll never be completely pain free, all I can do is try my best to live through these times, and hopefully find something that will help lessen the occurances. I'm fortunate enough to have an extremely high pain tolerance (ie. I've shrugged off broken bones, and a dislocated shoulder, not good I know but there just wasn't enough pain to worry about it) but even so I've had a couple of times when I've literally hit the floor because the cluster came on so fast that I didn't have time to brace myself for it, those are the ones I hate the most, I don't mind waking up in the middle of the night in pain, its when I'm at work or out in public and suddenly curl up screaming bloody murder that gets to me. My mother always seems to know before me when I'm going to get a headache, I guess my eye starts to droop a little in advance, not enough that I notice but other people sure do. Nice to have atleast some notice but those other people who can see it aren't always around.

Title: Re: New Member
Post by Richr8 on Nov 13^th, 2006, 8:35pm

Please read:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Hopefully you get a chance to try this. There are inexpensive ways to get there. If you are interested, just ask.

Title: Re: New Member
Post by RichardN on Nov 14^th, 2006, 12:00am

Hi Anthony

DO get a script for 02! When I came here (2/02), was having the multiple (6-8 per day, sometimes 3-5 per night) attacks.

For me, Verapamil and 02 did the trick . . . I can usually kill the beast in minutes if used early-on in the attack . . . .and if it works for you (as it does for 60-70% of us), you can keep the "dances" to a minimum.

Be Safe, PFDANs

Richard

Title: Re: New Member
Post by roy21302 on Nov 14^th, 2006, 9:13am

Anthony,
Have you seen a neuroligist for your CH, do you think your Doctor has an understanding of CH, and the various treatment that are availble for the condition.
You don't seem to have mentioned any Meds that you have tried, there is a list of Meds under one of the buttons to your left, have a look at it, print it out and perhaps show your doctor, print anything you can find and show him it. There are lots of things you can try, don't sit back and grin and bear it. Definately try the O2, I poo-pooed it for a long time having failed with it once----then I tried it again with the clustermasx, now I swear by it. In short what I am saying is that there are a lot more options out there beside anti-depressant which you say you don't want to take for ever. Good reading round here, ask loads of questions, were your friends, think about finding a doc who knows about CH------------Here to some Pain free time for you, it can be found Cheers Roy :)

Title: Re: New Member
Post by Tar on Nov 16^th, 2006, 9:53pm

I know I didn't list off all the preventatives and abortives I've tried, I've gone through quite a few already, mostly at first it was just calcium channel blockers but they weren't having any effect, now I've heard that the dosage was probably too low, for abortives I've tried all the triptans (imitrex, amerge, zomig, axert) and a few others like butalbital (didn't do a damn thing other than make me extremely tired), although not recommended I did go on percocet for quite awhile, more just to help dull the pain then anything else. My new doc (who put me on the Elavil) does seem to know about CH but he's trying to avoid getting me hooked on the narcotics/barbituates which is something I appreciate from him but I was set to go with whatever was working for me at the time. I think he will be very open to the idea of O2 for use as an abortive and I'll discuss it with him on my next follow up in a few weeks.

Title: Re: New Member
Post by Guiseppi on Nov 16^th, 2006, 11:42pm

A couple of thngs impress me about your doctor. He's open to your suggestions and he doesn't believe in narcotic pain killers. The prob with the narcotics is it takes too much to dull the pain and you have to use em far too long! I'll stress the oxygen once more and then wish you luck. Hoping you find a break it sounds like you're a little tired. ;)

Guiseppi

Title: Re: New Member
Post by sandie99 on Nov 17^th, 2006, 6:28am

Welcome, Anthony! :)

I'm glad that you found your way here. I hope that there are a lot of PF days in your future.

Best wishes,
Sanna