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Starting Topamax tonight


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Hey,

my 1st post.  First off this is a great community!!  I have rarely seen the compassion and caring for others that I have seen here.

Short summary:  Ch's started about 8 years, get a cycle about every 2 years, cycle lasts about 2 weeks, 3-4 CH's a day/night. 

So I started a cycle about 3 weeks ago, so it is longer than my norm.  I tried prednisone to break it up, but my old friend came back during the taper down.

My Doc wants me to start Topamax.  The few posts I have seen did not seem promising.  Can anyone tell me their experience of it?Thanks

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Hello Crosstraining,

I have used Topamax. I used it for aprox. 2 months, about 6 years ago.

By the time I was on my second refill, I had trouble remembering my name. And I didn't care that I was flushing another $150 prescription down the toilet.

Maybe with time I could have adjusted to it, but I didn't choose to waste anymore time or money on that drug.

It is a drug that you need to taper off of. If someone is considering the busting method, I would not start Topamax.

BTW, that was the last prescribed drug that I took for clusters. It was the final straw for me.

Just my experience.

Best of luck with what ever you choose to do. Sorry you are in pain.      Leslie

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Hi CrossT,

I was on Topomax for the past 3 years. I get a cycle every spring so I would start it at the first sign of a shadow. This summer, it stopped working for me. I even believe that it made the CH worse once they finally broke through it. Its not something anyone wants to take in my opinion. I was very disoriented all the time. No concentration whats so ever. I couldnt even give my daughter a bath as I would walk away and forget she was in there. NOT GOOD!! No appetite either and no sex drive. (Sorry guys, had to throw that in)

I recommend holding off on this as long as possible and try some other methods stated on this site.

Good luck!

Jeff

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Hey CrossT.  Most of us here are not big into the pharmaceuticals.  Either we never tried that stuff or it was so bad we came here. 

The good folks at www.clusterheadaches.com will be your most thorough source of good and bad info on those drugs.  Sister website, great (sometimes gruff) people, caring etc.  Check them out too. 

--Shaggy :)

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I have used topamax. They call it the "stupid drug" with good reason. It does not work on clusters and will actually make you stupid. After a week i had to leave post it notes everywhere. After 2 weeks I would forget to read the post its! One of the worst drugs I have ever taken. Don't put that crap in you're body!

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Brandon, Welcome!  Try to stay away from it if you can.  I took it for 4 years.  I just quit taking it a couple of months ago and have vowed never to get back on it.  It does not make any difference.  Cycles will still come.  Also, if you quit taking it a cycle will start up.  I think it actually made my cycles more frequent.  Its just scary.  I think it makes some people worse off.  There needs to be more studies on this drug for CH treatment, I don't think I have heard anything positive about it on this board.   Seeds and Mushies are the way to go, I see them as a gift now, from mother nature.  Scripts, for me personally dont work for long, if at all. 

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Well, it has been about a week and I have only had 3 CH's.  I hve not taken the Topomax, and I don't think I will.  Why are dr's prescribing this if it is not effective?  My Dr. is a neurologist, shouldn't he know about this stuff?   He did prescribe me some Maxalt melt tabs.  It is not near as good as Imitrex is for me.  It takes at least 45 minutes to have any effect, but my insurance will not fill enough Imitrex.  I am going to talk to my Dr. about O2, so hopefully I can start that. 

Thanks for all the help

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Why are dr's prescribing this if it is not effective?  My Dr. is a neurologist, shouldn't he know about this stuff?    It is not near as good as Imitrex is for me. 

Hello crosstraining,

Doctor's, & Neurologist's are bound by what pharmaceutical companies give them to operate with. All of the drugs we are prescribed were never intended for CH. Most have been piggy backed off of the back of Migraine research. It's just given to us in larger doses, & lets hope for the best.

Imigran is another fine example of this, & as with the Topomax, you would do to stay well clear of this drug.

As has been suggested by others in this thread. Oxygen is by far the best way to deal with the hits.

You may also want to read up, & consider RC seeds for your next cycle.

Whatever, I wish you well.

CArl...

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     Topamax should be called Dope-A-Max. Several years ago my neuro suggested I give it a try. It took only one dose to let me know that was not for me. I took it at bedtime and when I woke up the next I was so messed up there is no way I could've done anything requiring mental acuity or physical dexterity.

       That said, it has helped some people.

       You might want to go over to www.clusterheadaches.com and ask over there - they generally have more experience with pharmaceuticals.

        Hope the cycle ends soon for you.

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As has been suggested by others in this thread. Oxygen is by far the best way to deal with the hits.

You may also want to read up, & consider RC seeds for your next cycle.

I have been trying O2 some.  I have had limited success.  Tonight I did 15 minutes at 15.  No effect, so I took a 30minute break and did again.  Still not much help.

I don't know anything about RC seeds, but at this point I'll try anything.  I am going to start reading up about them tonight.

Thanks

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Well, it has been about a week and I have only had 3 CH's.

Thats great!   [smiley=thumbsup.gif]

The Maxalt didnt last long for me.  Got immune to it real quick.  Check out some seed busting stories for your next cycle if you havent already.  

I may have spoke too soon.  I have had 3 more today :'(

I am going to start researching seed busting.  I don't know anything about it.

Thanks

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  • 2 weeks later...

In Aug. 2003 (after 4 years of no CH) I was on verapamil, lithium and later the neuro added Topamax - I could barely think at 100 mg. but was advised hang in you'll adjust and I did.  Gradually up to 400 mg., 300 lithium and 480 verap.  And yes, I worked and actually could think...but I still had bouts of CH so it wasn't really a great preventative cocktail after all!  I always used 02 also at 12-15 lpm for 10 -12 min.   I was chronic from 2003 to 2009 summer and then ended!  Until this August.  DANG!  I had tapered off the above in Dec. 2009 and except for 2 or 3 brief times, was PF until Aug.  Tried RC seeds once and got more hits than before I took them; was going on vacation so back to verap. at 180 for 5 days, then doubled it; a 6-day course of prednisone too.  I was desperate to enjoy a vacation!  I had a lot of CH on the trip - no fun with no 02 available (Alaska fishing the rivers on a small island).  I hate to think of going back on conventionals so hope to taper off again and try RC again though it seemed I sure had some hits afterwards - unless a cycle had just started.  I was hoping for a 4-year reprieve again!

    Sandi

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  • 2 weeks later...
Sandi, try different seeds.  Maybe Hawaii Baby Woodrose.   

Brandon, hows it going?  Yes, detox sucks, when I did it I had the longest cycle ever but I was finally succesful busting with the HBW seeds.  Hang in there!

Rock

I finally got through my cycle.  It has been over 2 weeks of no CH's, not even shadows.  I waited for 2 weeks on my seeds, but they never came.  I called iamshaman and they said they discontiued the RC's.  There was some computer glitch that allowed me to order them. 

I will definately do the seeds next cycle, but hopefuy that will be awhile.

Thanks for all the help!!!!

Brandon

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I hate Dopeymax. I was on it for almost 3 months. No appetite, no sex drive, stupid, and suicidal. What an awesome drug...yeah right. STAY AWAY!!!  Leave it for epilepsy as it was intended. Pharmaceuticals are not cool. There isn't a man-made drug that is good for you.

Listen to these wise folks here. I did and I'm much better off now. Read all you can and learn-up about them there seeds n stuff. HEre's hoping for pain free!

Eric

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