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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here...but not new to clusters
        
(Message started by: Mike_in_CA on Jan 27^th, 2006, 5:20pm)

Title: New here...but not new to clusters
Post by Mike_in_CA on Jan 27^th, 2006, 5:20pm

I'm 43 years old, and until very recently I thought (hoped? prayed?) that I had "outgrown" my clusters. After all, I had gone 8 years since my last bout with them, and even that time really wasn't bad compared to my younger years. When I was 20 I was hospitalized twice, and dropped 20 pounds in 5 weeks due to the pain and drug-induced nausea from a popular treatment back then called Caffergot...a treatment that nearly killed me.

I had comfortably filed my cluster episodes in my distant memory folder in my brain until 2 weeks ago. I awoke in the middle of the night in fear...although the pain in my head wasn't too bad, I guess you never forget the feeling of a new attack. Although a few Tylenol knocked that one down and I was asleep again in an hour, the next night (almost to the minute) another came, and then another....

The attacks then changed patterns...first to evening attacks (which, although painful still permitted me to work normally) and then to whenever they chose. I had heard of Imitrex, and decided to ask my doctor if it may be right for me (sorry...just love those drug commercials).

He gave me samples of Imitrex as well as Relpax. I tried both and found both effective (heck, the developers of either of these drugs deserve a Nobel Prize), but Relpax was a little better for me. I thought I finally had a way to get through these headaches and function as a human being at the same time, but then my medical insurance messed it all up.

It seems that my insurance will only cover 6 pills a month! I can go through 6 a week easily until this session is up. Although my doctor has been slipping me as many samples as he can, I am still forced to hoard my pills, and as a result I don't take them until I am ABSOLUTELY sure I am having a migraine...and by then the pill is usually ineffective. My doctor is fighting my insurance carrier to up my dosage, but that is still unresolved.

Last night I waited too long to take a pill, and as a result had a headache from 8 PM until 4 AM, a true marathon for me, since most unmedicated headaches last about 2 hours. As a result I am a mess today...and missed work. I don't have the best job in the world, but trying to explain why you can't work because of a headache is difficult...many people incorrectly assume a hangover in such cases.

Well, that is my story.

Mike

Title: Re: New here...but not new to clusters
Post by pattik on Jan 27^th, 2006, 5:33pm

Hi Mike,
Welcome to the board. Many CH sufferers have found that Imitrex can change the nature of our headaches, but it can still seem like a miracle when it gets rid of a really bad one.
Check out the oxygen link on this site, and also the "oxygen usage tips" thread on the meds board.http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1123513751 Many people find oxygen very useful for aborting headaches if it's used properly, and it's also a lot cheaper than tryptans.
I hope you can find some help here. Feel free to ask questions as you need.
Pat

Title: Re: New here...but not new to clusters
Post by chewy on Jan 27^th, 2006, 7:00pm

Quote:

until I am ABSOLUTELY sure I am having a migraine

Have you been Dx with Migraines or clusters?

Title: Re: New here...but not new to clusters
Post by Mike_in_CA on Jan 27^th, 2006, 7:14pm

Hey Chewy!

I know, the debate rages on....are they migraines or not?
In 1981 I was diagnosed with "cluster migraines". By 1990 I was corrected, and informed that although they are vascular in nature, they are not considered migraines, and simply CH.
Then...two weeks ago I was informed by my Doc that they are again called cluster migraines.
I do know one thing: regardless of name they hurt like Hell, and I wouldn't wish them, migraines or not, on anyone.

Title: Re: New here...but not new to clusters
Post by Kris_in_SJ on Jan 27^th, 2006, 8:42pm

Hi Mike,

First, I would recommend you get a second opinion. There is no such thing as "Cluster Migraines." In other words, been there, done that. It's a term commonly used by neurologists who are unfamiliar with the differences. You either have clusters, or you have migraines, or you have both. It's not uncommon at all to have both. The important thing to know is that each syndrome is treated a little differently, though some meds cross over.

I think it's wonderful that you've had so much time pain-free. The fact is, treatments have greatly improved and changed since the last time you suffered.

Try this link:

http://www.brightok.net/~mnjday/chtherapy.pdf

Also important to note ... most insurance companies will ease their restrictions with a letter of request from your doctor stating dire patient need.

Again, however, I urge you to get a second opinion. Just so you know what you're really trying to deal with.

Hugs,

Kris