Monday, February 06, 2012

Topa-what?

I'm trying a new medication for Fibromyalgia. Topamax. I happened upon an online conversation where people where talking about using it for Fibro (even though it's an anti-seizure medication typically prescribed to prevent migraines). Seems like folks either really love it or really hate it--no in between. It's the kind of medicine where you have to start on a low dose and step up gradually to the goal dosage.


It's hard not to get my hopes up about a medication that could help. I'm not HORRIBLE with my current regimen, but taking 12-15 pain pills a day, plus meds for insomnia, plus Fibro med, plus 4 others is not ideal in my mind. What if I could take this and drop some of those? What if this gave me pain-FREE days instead of just days with less pain?


I'm watching for side-effects right now. This drug has some interesting ones--some that I wouldn't mind getting! On the plus side, people sometimes lose a lot of weight on this med--like 50 pounds a lot of weight! Also, one of the possible side effects is "less sweating." Yeah, I could handle less sweating (since the Savella causes me to sweat like a pregnant fish)! [Thanks P for that saying.] On the downside, some people experience pretty major brain fog (can't recall words, stop mid-sentence). That's already an issue with Fibro so taking something that makes it worse wouldn't be too cool. It can also make leg pain worse.


I've been on the lowest dose for 4 days now. I think I might be experiencing the leg pain side-effect but I'm not sure yet because leg/hip/butt pain is one of my most common Fibro pains. It could be that I would be having a bad few days even without the med. The side-effects are said to usually go away after about 6 weeks, so I will try to be strong for that amount of time to be SURE whether this drug helps or not. And if I lose a few pounds and sweat less, all the better!

3 comments:

Cora 7:52 AM  

let me know how it goes. I have added migraines to my list of symptoms and my Fibro doctor retired :( I am not sure how to approach this with my other doctor. Good luck!

Hannah 7:56 AM  

Hi Anita, just wondering how you went about getting your fibro properly diagnosed.

I've been trying to juggle/manage many many symptoms for far too long, and I've met with a number of specialists who are convinced that fibromyalgia is behind all of them. However, my doctor wants to give me one med for this, one med for that... etc etc x 40. He's not convinced, but popular opinion suggests it is indeed fibro! Are there any more conclusive tests or anything I can do rather than just putting two and two (or forty) together and deciding its fibro?

I know you're not a doctor and your blog is more about your gorgeous fam and your passion/work, but I just really need to hear it from someone who knows how I'm feeling! Thanks and God bless x

A. Gillispie 10:48 PM  

Hannah, I'm sorry I didn't respond to your comment sooner! I don't see a way to email you personally, but maybe you subscribed to the comments???

I went round and round with doctors for about 5 years before finally one of them said very non-chalantly, "Well, when you have fibromyalgia...." I stopped her in her tracks and I said, "What a minute, are you diagnosing me?" She said, "Well, we've excluded everything else, What else could it be?" I just started bawling. THAT'S WHAT I'VE BEEN SAYING! She went on to say that they don't WANT to give that diagnosis because once it's on your medical records it will never go away. It could come back to bite you in the but with your insurance company. They can hold "chronic pain" against you. For me, it was a relief just to have someone validate that what I was experiencing was REAL. I guess my best advice is just to keep going to different doctors until you find one that validates what you are experiencing. You know what? I went to the poeditrist to have him check out my foot pain and HE said, "I can see you have Fibromyalgia" before my main doc diagnosed it. He did pressure points only on my foot. When I went to my regular doc and told her about that, that along with me telling her about the pain I feel in a very private area of my body was the defining factor in her saying that it had to be Fibro because nothing else had ALL of those things together.

Don't give up. It doesn't really get a lot easier after you have the diagnosis, but the validation was significant to my own emotional well-being!

Anita