Clusterheadaches.com Message Board (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Just found this site...can't believe it exists!
(Message started by: Heather_K on Mar 18th, 2003, 10:32pm)

Title: Just found this site...can't believe it exists!
Post by Heather_K on Mar 18th, 2003, 10:32pm
Hello, everyone-

Just as my subject line says, I sat with my mouth agape when I discovered this site....whoever started it can have my life insurance policy (although it may never go into effect if I shoot myself through the eye, as I am tempted to do these days!).  I'm 33, female, and had my first cluster cycle when I was 19, although I struggled with intense headaches in my teens, more like blood-sugar-related migraines, but---in retrospect---cluster-esque in character.  I realized what these were about three cycles ago (I cycle every two years for about 4-6 weeks--like clockwork, unless I am pregnant or immediately post-partum, in which case I get an extra, bonus cluster just for good measure!  Oh, and by the way, when you are 9 weeks pregnant, guess how much Imitrex---or anything else, for that matter--- you can have!  That's right....), when I finally saw a good neurologist.  I am "textbook"---build in a crescendo, taper a bit and then stop.  My questions are the following:

If I feel that twinge---not anywhere near frank pain, but more like a "ghost" or "outline" of what is to come---when I am about to go to bed, could I do an Imitrex pill or nasal thing as a prevention?  What if it doesn't work and I wake a few hours later with the full-blown ha---can I take another dose of Imitrex?  What are the risks of taking two doses so close together, or even at once?  I must confess, I've awakened, done a nasal spray, and then---twenty minutes later, in desperation---chewed a tablet (and we all know how good Imitrex tastes).  What is the risk of OD-ing...in other words, how dangerous is it?  Do any of you double down like this?

Also, in this cycle and in my last one (when I was 9 weeks pregnant) mid-cycle I had some ha's which began as clusters, and then didn't respond to Imitrex, but dropped down on the Kip scale, became bi-lateral instead of unilateral, and moved into regular migraines, with nausea, photosensitivity, the whole nine yards.  These responded to Excedrin PM a bit (namely the diphenhydramine, I think), but are a real killer, really incapacitating.  

Any advice anyone has would be great...particularly about taking the Imitrex pill just before sleeping--does Imitrex work preventatively in that way?

Heather

Title: Re: Just found this site...can't believe it exists
Post by tanner on Mar 18th, 2003, 11:28pm
hi heather, i'm afraid i can't answer any of your med questions as i'm one of the one's trex doesn't work for. (or anything else right now for that matter)

i just wanted to welcome you and say hi, there are lots of good people here, many of which can give great advice regarding meds and dosage.

in the mean time browse the site and be sure to click on "O.U.C.H". and join!!!

good luck and nice to meetcha ............tim


Title: Re: Just found this site...can't believe it exists
Post by BobG on Mar 18th, 2003, 11:55pm
Hello Heather. Welcome to the board.

Imitrex is an abortive. It's taken at the very first sign that tells you the attack is coming. The pill and/or nasal forms are slower in getting to the pain than the injection. Taking Imitrex before going to bed probably won't stop an attack a couple hours later.

Many here have reported taking 2-5 injections per day/night with no bad side affects. On the left side of the board is an 'imitrex tip' button. Click it. You'll find how to use less Imitrex in each injection thus reducing the total amount you use each day and saving much money.

Have you tried pur oxygen? At the first sign of the attack pure O2 delived through a non-rebreather mask at 8 to 12 lpm should keep the pain down until the Imitrex kicks in.

You need a preventative like verapimil for long term relief.

Most folks here get hit about an hour after falling asleep when they reach the REM mode. Dramamine can help you to NOT reach the REM sleep mode. Also sleeping in a sitting up position in the LA-Z-Boy or at least with the head elevated may help you. It won't prevent an attack but you may wake sooner and can start to fight back sooner.

Good luck. Let us know more about how it going for you.

Title: Re: Just found this site...can't believe it exists
Post by cbolony on Mar 19th, 2003, 2:02pm

Quote:
does Imitrex work preventatively in that way?

no imitrex only works when the CH starts like BobG said its a abortive and it works good. I use  it 3-4 some times more a day in cycle.There is a lot of preventative meds just click on left side of the board medications.I myself take verapamil 480mgs a day

Title: Re: Just found this site...can't believe it exists
Post by Roxy on Mar 19th, 2003, 7:58pm
Hi Heather

I have used as much as 4-5 nasal sprays in a day, but that was before I was prescribed the injections.  Follow Bob's advice and get some 02.  It is wonderful stuff, and will abort quite a few of mine.  Check with you Dr. about getting on some verapamil, it works for a lot of people.  On the injections, I use the vials instead of the stat pen, that way I can break each vial up into 3 shots.  That will take care of 3 ch's with just one full dose of trex.

Hoping you get PF,
Tracey

Title: Re: Just found this site...can't believe it exists
Post by Wendy1 on Mar 30th, 2003, 8:36am
Please be careful with too much Imitrex.  That is why the ppl who make the drug reccommend 1-2 in 24 hrs ~ it causes the heart to race.

Imitrex works MIRACLES for me, however I found my self getting 5-6 h/a a day and there was no way my doc would prescribe that much imitrex.  

Title: Re: Just found this site...can't believe it exists
Post by BobG on Mar 30th, 2003, 8:59am
Wendy,
Have you tried the imitrex tip on the left side of the screen? Most imitrex users say they don't need the full injection to abort an attack. One third of a shot will do the trick.
2 full injections = 6 one third injections and the 6 smaller injections may be easier on the heart than 2 full doses.






But then, I'm not a doctor but have heard some here say they have heard of someone playing one on TV.  ::)



Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.