Topamax Update (long)

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Posted by John Bown ( on December 11, 1999 at 08:13:41:

First, let me say that, having been a chronic for 10 years, I have seen a lot of really hopeful and promising therapies fall apart. I have also seen folks post miracle cures here, and that is not nice, because nothing works for everyone. With that in mind, I do want to make our readers aware of some very good progress I have had with my particularly intractable case of chronic clusters, and I will be very specific about what I am doing, so this will be a bit long.

Topamax is an anti-siezure medication that has recently been found to have efficacy in the prevention of cluster headache. It does have some fairly strong side-effects, notably fatigue, short-term memory loss and confusion, and possibly an undocumented tendency to cause joint pain. Because of the side-effects, dosage is titrated upward very slowly until an effective dosage is found. I have found that all the side effects go away as you adjust to the medication, with the exception of the tiredness or fatigue.

In my case, I have found that I am able to obtain an acceptable degree of relief from CH at a dose of 200mg per day. I am now getting about 4 cluster attacks per week, each attack occuring 1 hour after falling asleep and each attack being aborted within 10 minutes with 100% oxygen only. To me, this is an acceptable level of prevention, in balance with the side effects of the drug.

To minimize the fatigue induced by the Topamax, I am taking it 150mg at 8 p.m. and 50mg at 8 a.m., and getting plenty of sleep, which is now, thankfully, quite plesantly possible.

Other medications and drugs I am taking concurrently are Allegra, 60mg twice a day (with the Topamax), a Centrum multivitamin in the morning, and two 81mg enteric-coated aspirin at 8 p.m. Allegra is an antihistamine, and I believe it plays an important role, along with the low-dose aspirin. Water, water, water is essential with Topamax, and, as is documented elsewhere on this site, is an important ingredient in management of CH as well.

Note the absence of verapamil, and the simplicity of this group of drugs.

Well, for what it is worth, that is my update, and for today, it is working for me. Wish me luck. Perhaps some of you may want to run it by your doc's and try it too. The funny thing is that the Topamax wasn't working nearly as well until I added the low-dose, enteric-coated aspirin. Aspirin is really strange stuff. Tree bark, you know. PFD&N to all; LYG

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