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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Meds and Questions from a newbie
        
(Message started by: paulyboy on Nov 15^th, 2007, 5:57pm)

Title: Meds and Questions from a newbie
Post by paulyboy on Nov 15^th, 2007, 5:57pm

First I want to say what a relief this website is. Though joining this club officially (two weeks ago) SUCKS. So, I'm meeting with the Neuro tomorrow for the 2nd time with a bit more knowledge. I wanted to filter some questions through here first since many of you have experience to back this stuff up. Heres the details of the meds:

Medrol (pred pack) was effective initially in reducing severity and frequency. But thats over with.

Imitrex stops a hit if taken early enough, if not, 45 min of agony, if not taken at all 90 min of hell. Taking pill, twice a day regulary for two weeks almost.

Dr after initial visit last week put me on 180 mg veraputin.

No change, so he put me on topomax (25mg) today, stupid side effects.

Also put me on an anti depressant, start that tonight: imipramine.

Heres my pain condition. At this point, Ive only had 3 headaches once this week, always two. Ive only once woken up to them an hour or two after sleep and not sever enough to make me want to dance. But the two during the day is pure agony. (I am grateful its not 5-8). Im not drinking alcohol or caffiene. I work out lifting and cardio 4 times a week (usually more but you know how it is with these meds).

Now this is what I think based on what documents and messages Ive read:

I dont want to take topomax until I can up the dosage of the verapamil to see if it works... there is less side effects and seems to be more effective in general. I know I can take both, but there is something about taking too many things at once and getting confused as to whats working. Ive heard you can take verapamil up to a grm a day in some cases (tapering up and down).

I want to get injections of imitrex as that seems to be more effective with the heads here. Sometimes that 15-20 min of waiting is pretty horrible.

I think I need Oxygen ASAP. I dont have the night wakeup calls but I work in the evening, so it would help to have it here. Does anyone know if the insurance carriers cover this?

Ive heard of some bad echinacia/ herbal conflicts with some of these drugs? Anyone have a thought?

Caffiene. Ive made it my business to get off the habit. Does a habit help? Ive seen it more than once on here? Does anyone have any luck with diet changes (i.e. eggs, dairy reduction?)

So Im going tomorrow to ask this dr some questions. He did not put me on a transitional drug (prednisone) while I began the veraputin claiming there was no induction period with the drug. So its been 4-5 days of hell... I think he doesnt know what hes talking about. Does anyone know any NYC drs who are good cluster headache specialists?

Thanks for your help.

Title: Re: Meds and Questions from a newbie
Post by Guiseppi on Nov 15^th, 2007, 6:14pm

Well as you found out he's wrong about needing the prednisone while you waited for the verapamil to kick in. I never tried the topomax because I stumbled onto lithium first and it's been my miracle preventative.

I'm a kaiser patient, historically one of the more tight wad medical plans and they pay for my oxygen. I think when my neuro did the comparison between imitrex and oxygen it was an easy call. Can't help you with a good neuro, I'm on the right coast......So Cal.

Do push for the oxygen. I can abort in less then 10 minutes with it and there are no nasty side effects to it. You'll need a high flow regulator, one that goes up to 15 LPM and a Non Re Breather mask. Good luck finding a neuro that will listen to you that's truly 75% of the battle.

Guiseppi

Title: Re: Meds and Questions from a newbie
Post by ski2k on Nov 15^th, 2007, 7:04pm

I've been told by many people to stay away from caffeine as it can cause headaches. And that's true to some extent, in some migraine patients. But CH is different. Many have found (myself included) that caffeine actually HELPS stop the headaches. Check out your thread on caffeine... I posted there, too.
O2, O2, O2, O2 !!!!!!!! Extremely helpful!!! Most insurances will cover it, though some need a letter from your doc first. Even if they won't... shop around. Some suppliers can offer it you very cheap!
I was on Topomax for a while. Aside from the fact it didn't help me (though others it does), I hated the side effects. Everyone is a little different, and each cycle can be different. If it works for you, it might noe work for someone else. Next cycle, That same med may not work, and you'll have to try something else. You just need to be ready to try new things, and find what works. And don't get discouraged!!

Keep us posted!!
Adam

Title: Re: Meds and Questions from a newbie
Post by DennisM1045 on Nov 15^th, 2007, 10:21pm

Hey Pauly,

Welcome to the board. First off, you've done a lot of reading already. Good start ;;D You've answered most of your questions already.

Caffeine is your friend. It acts as a vasoconstrictor. That's what Imitrex is. You may have some issues weening yourself off after your cycle is over but that's a small price to pay for some relief. I use Coffee, or energy drinks.

Exercise can be a trigger. At least it is for me. It has to do with overheating the body. When I get an exercise induced hit it happens within an our or so after I stop. If that's not happening and the hits only follow 2 hours of sleep, then you are probably lucky and exercise is not a trigger.

Don't try to go head-to-head with this doc. Either you can work with him or you can't. If you can't find another one ASAP. Its more important that you find a Doc willing to listen and learn with you than an expert which are few and far between.

Good luck tomorrow. Let us know how you make out.

-Dennis-

Title: Re: Meds and Questions from a newbie
Post by paulyboy on Nov 15^th, 2007, 11:32pm

Thanks guys. I will let you know.

If it helps anyone, I had a conversation with a leading migraine and headache specialist who told me about a few things medicinally.
First off, Topomax is being found only to be useful at 100 mg doses. That means a hell of a lot of initial side effects. I have a pretty solid tolerance for drugs and 25 mg hit me pretty hard.
Verapamil is also being studied more, as going above 360mg now can be detrimental to the heart. We have read that over 480mg requires an ekg monitoring already.
There is a 4 ml dose of imitrex on the market for people who dont want to mess with reducing dosage from the 6 ml.
I havent found much on this site involving antidepressants, as they are used in migraine treatment primarily. But Ive talked to two drs now who prescribe it for CH. That involves the whole family that imipramine belongs to. They usually prescribe doses that are not high enough to have any anti depressant effect. But they apparently do help as a preventative. I started it tonight on 25 mg moving to 50 in 3 days.

Update tomorrow.

thanks again.

Title: Re: Meds and Questions from a newbie
Post by Bob_Johnson on Nov 16^th, 2007, 7:20am

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)

Title: Re: Meds and Questions from a newbie
Post by paulyboy on Nov 16^th, 2007, 10:16am

Thanks, I will go armed this morning to the neuro.

Just so you all know, from the knowledge I gained here, this was my morning. Woke at 9 am with shadows, got up, chugged a monster (woowoo!) wrapped a tight hat around my head and ran like hell out in 34 degree weather for 30 min. Im gonna drink some ginger tea and see if that helps it. No shadows back yet.

Nice way to have a morning spin anyway. I read that cold air is nearly as effective as O2, the caffiene helps everything (waking up, shadows) and the ginger could be a decent preventative (not in place of verapamil of course).

wish me luck..

Pauly

Title: Re: Meds and Questions from a newbie
Post by ski2k on Nov 16^th, 2007, 12:35pm

Best of luck, Pauly!

Looking forward to hearing how things went at the neuros.

Best,
Adam

Title: Re: Meds and Questions from a newbie
Post by paulyboy on Nov 16^th, 2007, 11:09pm

Thanks for the support and info. Really made more sense when I went in there and reasoned with him, stating my evidence and what not. Heres whats happening:

moving to trex injections... 6 ml

upping veraputin to 260 mg

PRED pack! WEEEEE 10 day (3 weeks into cycle, only thing that has worked so far, starting at 60 mg then taper after 4 days... total 10 day cycle)

kicking up antidpressants (helps with REM trigger apparently)

getting an O2 tank (quick question: what exactly does he need to put on prescription?)

so, took the roids today, no headache except minor shadows in 10 hrs. Really is amazing how that works, not that Roids are a total cure. I have talked to drs who use is primarily for month cyclers, hitting them with 60mg for a week and tapering for 3 weeks.

So, one imitrex before the roids, and I may get through tonight... we'll see. a PF day. its been a bit of time. Not as much as the some people's conditions, but hey, pain is pain.

Bought some energy drinks, trying to stick to low carb (bad taste) drinks, any recommendations?

Thanks guys.

Paul

Title: Re: Meds and Questions from a newbie
Post by ski2k on Nov 17^th, 2007, 12:03am

Your prescription for O2 should read something like:
100% O2 at 15 lpm through non-rebreather mask at the onset of cluster headache.

Some people use up to 20 lpm, but I believe the standard now is somewhere around 15. Check out the O2 links here and on the OUCH web site for more info. Those should give you some suggestions on how to use it most effectively too.

Hope you get some pain free time!!

Adam

Title: Re: Meds and Questions from a newbie
Post by DennisM1045 on Nov 17^th, 2007, 9:24am

That's Awesome Paul! There is nothing like a clusterhead armed with knowledge. Good job.

Now kick his ass!

-Dennis-