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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> rather worn down
        
(Message started by: reptile on Sep 29^th, 2004, 8:20pm)

Title: rather worn down
Post by reptile on Sep 29^th, 2004, 8:20pm

Hi--I am an early 50's male who has had clusters for 16 years, diagnosed for 14 years. I am fortunate to have had a well-informed and caring neuro for some time now, and a most supportive and understanding sweetheart. I have been reading through this site for a number of hours and realized I could benefit by participating in an exhange-of-information type of resource such as this site seems to be, and by giving and recieving support--both of which activities I find essential to feeling ok. I am in month 11 right now, of what I hope is a long episode as opposed to an endless chronic CH condition, and am feeling rather worn down by it all. (3 different neuros here in LA have told me that I am an unusual chronic/episodic blend CH'er. Bye for now.

Title: Re: rather worn down
Post by nani on Sep 29^th, 2004, 8:42pm

Welcome and I'm sorry you're here. I'm a chronic with occasional severe episodes. Just comin' off of one of those. Tell us what you're doing for yours. We'll tell you our experience. Hang in there. [smiley=hug.gif]

Title: Re: rather worn down
Post by reptile on Sep 29^th, 2004, 8:52pm

Oxygen works well for me--if I get to it quickly enough--unless I am having a real bear of an attack. I used to get good preventative results with sansert/ergotamine and abortive results wIth DHE 45 self-injections; but those meds are unavailable to me per my conservative cardiologist (as is Imitrex) since I had heart trouble 7 years ago (even tho, as I understand it, my heart is in fine shape now). I've taken some preventatives (e.g., keppra and trileptal) that I have not seen on this board yet that work for me for a year or two and then not. Topomax works fine, that is, if I don't mind being depressed out of my mind. I've been experimenting with Frova (yech), and Relpax (seems good) lately, and have some samples of Maxalt and Zomig--TO BE CONT'D

Title: Re: rather worn down
Post by reptile on Sep 29^th, 2004, 9:00pm

CONT'D
but these meds scare me a little (maybe more) and cost so much even with insurance. When all else fails (which it does 1-4 times per week) I take vicodin and/or demoral. I tolerate both of these meds quite well (except for some itching if I take vicodin sometimes), and my neuro--who monitors me closely--assures me that I am neither addicted nor an addictive type. BUT, I do sometimes think the pain meds create their own rebound ch's, so I just stop taking those meds for a minimum of 30 days. My ch triggers are alcohol, chocolate, closed-air system (airplanes, theatres), and sometimes heat, like a hot bath.

Title: Re: rather worn down
Post by thebbz on Sep 29^th, 2004, 10:08pm

Hello Reptile,
Lots of support and good information here even for the OLD GUYS like us . Learn something every day . Dont let it get to ya . That's quite awile to go hope its just a long episode eh! Keep in touch 8)
BB

Title: Re: rather worn down
Post by Superpain on Sep 30^th, 2004, 4:05am

Welcome.
I'm a on and off episodic/chronic whatevermyfuckinheadhurtsforyears type too.
They will end. And they will also come back.
Those are the only two things about CH I know for sure.
Be strong!

Title: Re: rather worn down
Post by EmpressJMB on Sep 30^th, 2004, 8:54am

Welcome Reptile! I hope your pain ends soon. Sending vibes and prayers your way. We welcome your info and support!

Title: Re: rather worn down
Post by nani on Sep 30^th, 2004, 9:33am

Quote:

have some samples of Maxalt and Zomig

If I'm not mistaken, Maxalt is a triptan like Imitrex. Be careful and check with your heart doc. You may want to PM floridian about this - he's the medication and research expert here. Verapamil is a good prevent. I'm seeing a neuro next week - maybe he will have a triptan alternative. I shouldn't take triptans either, but I do when I'm really desperate. Hang in... [smiley=hug.gif]

Title: Re: rather worn down
Post by reptile on Sep 30^th, 2004, 11:55am

Thanks to all for the welcome and support. As for the note re triptans and cardiac risk, as I understand it from the md's I have consulted with, Zomig, Relpax, Frova, Maxalt, etc are 2nd and 3rd generation triptans that are much more receptor site specific than Imitrex and the ergots and hence of considerably less risk. I think, in fact, that I was advised that the admonision to not take two different of these meds within 24 hours has to do with their acting on different receptors and thereby increasing the cardiovascular spasm risk. In any event, neither of my current neuros (one of whom is the son of the Kudrow who published much of the early researech on ch and works only on HA, especially CH) has ever seen a cardio problem from these second and third generation triptans. Thanks for the tip re Floridian, and by this posting I invite his input. Is there a better mechanism? A PF day to all!

Title: Re: rather worn down
Post by reptile on Sep 30^th, 2004, 2:05pm

Nani-- I am really glad to meet someone who should not use triptans and is looking for alternatives--please keep me posted on how your search goes. Oh, thanks for mentioning Verapamil, too, which I forgot to say I am taking, although only 160 mg. Maybe it is time to talk to my md's about ramping up--although I am taking other blood pressure meds, so . . . .
A peaceful, PF day to all.

Title: Re: rather worn down
Post by toolong on Sep 30^th, 2004, 3:19pm

Welcome to the board.Hope you can find some help and give some also.I've been chronic for about 5 years with a history of CH going back to my chilhood.(54years).You mentioned two drugs I have not heard of,and I thought I've tried everything.What can you tell me about keppra and trileptal?I also have a cardio.Who tells me no triptans.Thanks,David :)

Title: Re: rather worn down
Post by reptile on Sep 30^th, 2004, 11:55pm

David--

Thanks for the welcome. Without doing any research, I can tell you that keppra and trileptal were both presecribed to me by a neuro who specializes in both HA and seizure disorders and has found some good off-label results using antiseizure meds for CH. Generally, Keppra is a medicine taken with other seizure medicines to help control seizures in adults. Trileptal, too, is used to control epilepsy seizures and is also sometimes prescribed for bi-polar disorder. I found both meds efficacious--but only for a year or two--and both easy to tolerate in terms of no nasty side effects. The same neuro had me on neurotin for a while, a med which friends have used successfully for chronic spinal nerve pain. I don't think it did much for me. Bye for now. Have a PF day.

Title: Re: rather worn down
Post by nani on Oct 1^st, 2004, 12:32am

Neurontin has always been in my preventative cocktail. Right now I'm on 1800mgs a day. For the most part it makes my life livable. It makes being a chronic something I can deal with. :-/

Title: Re: rather worn down
Post by reptile on Oct 1^st, 2004, 3:55am

Nani--Neurontin was part of my cocktail, too, for maybe 2-4 years, but I eventually gave it up as ineffective a couple of years back. I'd have to look up the dosages, but I remember it got rather high. I do know people who have gotten a good bit of relief from this med, more for spinal nerve compesion injuries than HA.