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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Do I need a preventative?
        
(Message started by: billyjoe on May 22^nd, 2007, 12:43pm)

Title: Do I need a preventative?
Post by billyjoe on May 22^nd, 2007, 12:43pm

I am wondering if the preventatives are worthwhile. I am starting to get some success from the O2 and using a lot less trex. I’m off the prednisone and ramping on the topomax and not real thrilled with either. Seems like the topomax is just moving it around and causing some side effects. Are there many people getting along ok without a preventative?

Thanks,
Bill

Title: Re: Do I need a preventative?
Post by seasonalboomer on May 22^nd, 2007, 12:54pm

Bill,

I don't use a preventative but have bee told that it is very worthwhile to try it some time.

I just felt that with as much as my life was changed by the use of Oxygen and Imitrex to get rid of a cluster when it hits I didn't need to go the preventative route. I did use Kudzu for a couple of cycles and it seemed to be effective and then I couldn't seem to get completely clean from Imitrex before going the Kudzu route for subsequent cycles -- so I stuck it out with only abortives.

I'll give them a go someday I'm sure though.

Scott

Title: Re: Do I need a preventative?
Post by Bob_Johnson on May 22^nd, 2007, 1:09pm

Only time and your personal experience will answer the question. A few, blesssed souls, have very short and infrequent cycles and they can do without a preventive.

Your personal pain tolerance will be the guide.

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)

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

Title: Re: Do I need a preventative?
Post by E-Double on May 22^nd, 2007, 7:54pm

Bob is wise......enough said.

In additon ( I guess I will say more) I personally went over a decade without preventative or abortive then I was put on a $hitload of cocktails for a few years.
I decided to detox a little over a year ago and have not been on a preventative since.
I'm a chronic dude but I find that it is easier just aborting when they come ( O2) and not having to deal with any side effects.

My choice my noggin.

You will know what is right for you

Title: Re: Do I need a preventative?
Post by MR_FLOOR on May 22^nd, 2007, 11:13pm

I personally could net survive without my Calan,without it I will get hit so many times I would lose count and o2 don't work for me . And not to mention my insurance will only pay for 12 trex shots a month,even with the trex tip in the left column it would not last me all month . That is without my Calan. So I said it before and I'll say it again what works for some does not work for others.

Dave

Title: Re: Do I need a preventative?
Post by UN solved on May 22^nd, 2007, 11:55pm

I'd be dead right now if it weren't for Imitrex injections. As for preventatives, if you don't need them or can do without them, don't take them. If they really help and you need/want that help, take them. It's another case of ... "you got to weigh the benefits vs the risks" and make your own personal decision.

Goodluck

UNsolved

Title: Re: Do I need a preventative?
Post by burnt-toast on May 23^rd, 2007, 8:16am

Ask yourself this basic question - Is CH significantly disrupting your ability to lead a reasonably normal life?

If you’re blessed with symptoms that are effectively treated with abortive meds., and life isn’t being turned upside down by long cycles or frequent and severe attacks you may find that you do not need preventatives.

This is a personal choice you should make after carefully weighing the risks vs. the rewards.

If you decide that preventatives are necessary - research all meds. being prescribed and understand what you need to be alert for. Work with your doc(s). to identify meds./dosages levels that work best for you. Finding a med. or combo that works can be frustrating and time consuming so be sure to keep accurate records as you go through the process.

Best Wishes,

Tom

Title: Re: Do I need a preventative?
Post by billyjoe on May 23^rd, 2007, 10:34am

Thanks for all the great Info! You folks know more than my nuro. He is nice enough and learning and I will definitely give him this printout:
http://www.brightok.net/~mnjday/chtherapy.pdf
Last night was my first night on 50mg of Topmax and the first night without a CH!, so perhaps it's working. I was getting used to the routine, so we'll see how I can deal with the side affects.
I also thought it was real interresting that 70% of us are or were smokers. I would be real interested to learn if/how that contributed to this.

Bill

Title: Re: Do I need a preventative?
Post by Bob_Johnson on May 23^rd, 2007, 1:28pm

If, in fact, your neuro is not very experienced with headache disorders, then I'd suggest you learn more than the meds article will provide.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Do I need a preventative?
Post by swimchica623 on May 24^th, 2007, 5:35pm

Just to put in some comments about Topamax...make sure your neuro knows to increase it niiiice and slow if you need to. I've had some success with it but it does seem to be a real hit or miss drug! It seems like the slower you go with it, the higher your chances are that you will be successful with it though, so be patient with it. It's been great for me though, mild impact on CH..makes them a little shorter, but its been real good because I get migraines too and since starting it in Oct I've only had ONE migraine and getting hit and in the middle of a migraine is HORRIBLE. I loves me Topamax. :D
Lisa