Dec 04 2005
Fibro Update: Topamax + Ultram
Okay, so I’m not one to jump for joy about “miracle” drugs. And, I’m a little disgruntled because, ultimately, I don’t know for sure what’s helping more, the round-the-clock Ultram (which is actually tramadol, a generic form of Ultram), or the introduction of Topamax. But, for all you Fibromites out there, here’s what I do know:
I’ve always been able to handle direct pressure, such as someone squeezing my hand. It hurt, but the squeezing also somehow countered the pain sensations I felt internally. I had next to no tolerance for more specific pressure, such as pressing a fingertip into the palm or [especially] the back of my hand. My hips were the same way, and when it came to the bottom of my feet, I’d almost literally unsheath my claws and tear someone’s head off, the pain was that unbearable.
As I said in an earlier post, Topamax, at lower doses, is [now, also] marketed as a migraine preventative, but it’s an antiepileptic medication used to control seizures – including grand mal seizures. But, the dose necessary for control of seizures, so far, is well above what Dr. Bivins is recommending I take. I have a bottle of 25 mg caplets. For week 1, I’m required to take 1 caplet at night, then 2 at night for the 2nd week, and the 3rd week I’ll take 3 for a total of 75 mg. So far that I can tell, the worst possible long term effect, outside of an assortment of strange side effects, is kidney stones (and, of course, liver damage) — so drinking a lot of water is important. As an antiseizure medication, doses seem to be well above 200 mgs a day, maybe even more. I’m basing all my research off the links I’ve left here.
Four days after I started Dr. Bivins’ recommended course of action, Jon was able to touch the back of my hand, and poke his fingertip into the palm of my hand. He can touch the bottom of my feet. He’s tried a few of his own “tests” and claims he can still feel hot spots. No doubt. I’m not cured, and no one reading my words here should think I’ve found the miracle cure or the messiah in Dr. Bivins. I haven’t.
What I’ve found — at least as far as I’m concerned — is honest to goodness progress in determining what Fibromyalgia really is and how to treat it properly. Eventually, maybe these will lead to understanding what causes Fibromyalgia, or answers to how to prevent and/or stop it altogether.
If your doctor is not looking at Fibromyalgia as possibly a neurological problem, kick him or her in the ass or start looking for a new doctor. Wikipedia has a pretty good article on Fibromyalgia. Read the whole thing, but pay special attention to the the section on Sleep Disturbance under Theories on the Cause of Fibromyalgia. This (or one very similar) is the theory Dr. Bivins adheres to, and currently, I’m willing to believe he’s on the right path.
Sidenote: I feel it necessary to add, though, that I consider the Guaifenesin protocol, also referenced in the Wikipedia article, to be nothing more than a glorified snake-oil remedy. However, do your own research — don’t take my or anyone else’s words at face value — seek the truth that works for you.