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Topic: Help! (Read 187 times) |
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toomanymeds
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Hi Everyone - This is my first post. First of all, this site has been much more helpful than the medical community. I am an episodic sufferer - first episode very brief, maybe 2 weeks, 3 years ago. This one has been brutal. It began April 3rd. I am on my 4th Neuro. O2 & Immitrex injectors for abortives, but my real problem is with the preventatives. 100mg Topamax per day, 150mg Keppra 3 times per day, 10mg Methadone 2 times per day, & 1 Depakote in am & 2 in pm. Needless to say, I am an absolute zombie & the headaches continue. Thank you all in advance for your support & encouragement.
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smfaison
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Re: Help!
« Reply #1 on: Jul 31st, 2003, 6:19pm » |
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Toomanymeds,
Sorry to hear of your difficulties. I am an episodic sufferer and have been all of my life (47 years). I get mine usually for 4 months every other year. Go figure! The only meds that you mention that I had any experience with are Imitrex, and Depakote. I have tried Prednisone in the past, but I always took it with something called Sansert which is no longer available in the U.S. I am now taking 1500 mg of Depakote (3 caplets) before bed. I take 1 Bellaspas in the morning and 1 in the evening. I was in a really bad patch before my neuro added the Bellaspas. It stopped the headaches dead in their tracks. I also take 1 180mg Verapamil in the morning and another at night. I am now going about 8 days between headaches. I also have a Stadol nasal spray in case I get one anyway. It knocks me out so I really don't care. I would say stay after your neuro until he/she gets you on something that works for you. I think it is mostly trial and error. I have been through several neuros myself and they all want to reinvent the wheel and do it their way. Hang in there!
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Prense
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Re: Help!
« Reply #2 on: Jul 31st, 2003, 7:36pm » |
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Wow, lots of meds!! Well, the Topamax is probably what is getting to you most. My first question is how did you get to 100mg? Currently I am being taken off of Topamax due to side effects because it was prescribed incorrectly. Unfortunately, you cannot just stop taking it...you have to taper off of it until the dosage is low enough to be able to stop.
Foot always falling asleep? Hands tingle? Coke doesn't taste the same? Sleepy ALL the time? Your speech is impaired? Reading is a chore? Well, these were the side effects I had at 200mg a day all because I was dosed incorrectly.
For preventatives Verapamil and Lith together seem to be what works for most, but maybe there are reasons your doc didn't go that route. Topamax is also being used at 100mg if the patient can handle the side effects but according the the OUCH 2003 summary it is supposed to be dosed at 15mg for a week and bumped 15mg each week until 100mg is reached. That is supposed to reduce the chances of all those lovely side effects.
As far as the HAs continuing...I would imagine that it probably takes some time...I think I read up to 8 weeks for the Topamax to actually start preventing CH effectively. As Smfaison mentioned... Prednisone...steroid meds are an interim med that work much quicker and are used while the "other" preventive "builds" up in your system. So the typical therapy you might run across may look something like... O2 + Imitrex + Predisone + Verapamil + Lithium although the cluster head will only be on the predisone for a fairly short duration. It starts off at the highest dosage and tapers off.
Oh yeah, so you know how I was incorrectly dosed on Topamax 50mgx5 days 75mgx1 day 200mgx5 days 300mgx2 days (visited another doc BEGGING for a referral to a different neuro) and the rest is history. So I was not even on it long enough to find out if it was going to work and my dosage was way too high.
Hope that helps
Chris
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