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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> topomax info
(Message started by: inyoureye on Sep 3rd, 2006, 8:07pm)

Title: topomax info
Post by inyoureye on Sep 3rd, 2006, 8:07pm
What does topomax do that makes it work?

Title: Re: topomax info
Post by Katherinecm on Sep 3rd, 2006, 9:11pm
Topamax is an anti-seizure drug. It's also used to treat migraine, CH, and is being studied to see if it helps people stop addictions such as alcoholism.

In CH it is prescribed as a preventative medication. Many people don't like it because of the side effects- which are sometimes a sign that you increased the dose too quickly, and sometimes linger on for months. Decreased memory, an inability to find the word you want to use, and drowsiness are very common. You may often see it refferred to here as "dopeymax." Over time it makes food and drinks taste terrible. Stumbling, loss of balance, seeing "visual effects" such as fireworks or hallucinations are less common. It can cause bad things such as kidney stones.

Last I heard the mechanism that makes it work was not fully understood. This info is probably at least a year old and half of it I got from this board, not my neurologist, so don't take any of this as gospel.

One theory is that it helps to calm down the overactivity in the hypothalamus that is related to CH. That overactivity might be part of the mechanism that causes pain- the theory being that CH may be somewhat similar to epilepsy, only the attacks we get are headaches and all of the other symptoms of CH, rather than a seizure.

Another theory was that it calms your brain down enough so that the pain signals are not as urgent and do not seem so severe- in other words, you're still getting the attacks, but your brain isn't processing those pain signals as much so the signals are reduced.

Another theory I heard is that Topamax may change your brain chemistry as much as a mood regulator such as lithium- evening out levels of neurotransmitters such as dopamine, etc, and thus reducing the pain of CH (and for that matter, addictions). Since then I think I've seen Topamax classified on some headache clinic site as both an antiseizure med and a mood regulator, so this may be true.

I'm sure someone will come along quickly who has done more recent research on it.

Title: Re: topomax info
Post by JenniferD on Sep 3rd, 2006, 10:52pm
great answer Katherine.   The only thing dopeymax did for me was to make me too stupid to know I was in pain.

Title: Re: topomax info
Post by unsolved1 on Sep 4th, 2006, 12:06am
2 words ... Kidney Stones

Buyer beware !

Unsolved  :-X

Title: Re: topomax info
Post by inyoureye on Sep 4th, 2006, 9:44am
Thanks folks.

Title: Re: topomax info
Post by inyoureye on Sep 9th, 2006, 9:38am
ok, it seems I'm on a much lighter dose than most.  Iwas told to take 25mg for 1 week then up to 50mg till gone.  I have 40 tabs.

I took the 25's for 3 days and the cluster stopped so I stopped taking it.  

Cluster returned.  

I started them again and it went right away again.  after 5 days,food tastes terrible, my marlboros somehow became menthols and I almost got killed at work (UPS driver).

I now take 1 (25mg) every other day for 4 days now and still no HA.  

I know I shouldn't play doctor but I hate putting stuff into me and many of these doc's that I've seen have no idea about my body.  Many of you know what I mean.  My last neuro didn't even want to keep the copy of the journal I brought,lol. (times, triggers,kips,you name it) NEXT.

Title: Re: topomax info
Post by SophiaK on Sep 9th, 2006, 4:26pm
Do not take if you are allergic to sulfa drugs. Put me in the ER.



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