I was never going to try it again. Having experienced the word loss and extreme side effects of being on it once I was never going to let its chemical compounds cross the threshold of these lips again.
That is, until I failed everything else.
It was the only drug I’d ever responded to but back when I had it was one of many options that had so many negative side effects I couldn’t imagine staying on it when there were other, possibly less horrible options out there for me.
But now there aren’t.
To try and combat the side effect roller coaster we are starting ultra-low and upping slowly, especially since I have proven myself to be extra-sensitive to side effects. Even starting at 15mg a day I tasted pennies immediately. 6 weeks later at 45 mg a day I was feeling achy everywhere, having a sore throat, and never feeling hungry. 8 weeks in, at 60 mg a day, I’m still 340 mg away from the minimum effective therapeutic dosage and the side effects are staggering.
I taste copper all the time, with everything. Everything has a tangy, metallic smell. I am never hungry and my stomach always hurts. My muscles and bones feel like I have a high fever, that aching sensation that comes with the flu, and my joints hurt constantly. I have diarrhea, which is amazing since I also have a partial bowel obstruction. I’ve lost 7 pounds this past week. I’m dizzy, lightheaded, and itchy.
Each time I up the does by 15mg I have a huge uptick in side effects. So far each time they taper down after several days and get more manageable. I’m hoping they do so this time too, though this is by far the worst I have felt so I am feeling doubtful.
The good news is so far I haven’t had the direct mental capability loss I had last time. Last time it was like someone had turned my brain off. Everyone joked about me entering my mid-thirties being the cause and didn’t understand how terrifying it is to have the ability to draw forth anything you want from memory on Monday and then nothing from memory Tuesday but that’s how it went for me last time I was on this drug.
This time it’s more like I go to find the file and I have to look in another drawer because I suddenly remember it never got put back properly. So that aspect is better. So far.
However, I’m only a fifth of where I need to be to get results from this drug and I feel like I’ve been hit by a truck. I’m not sure I can give myself a pretty serious flu-like week every few weeks for the next 6-8 months while I ramp up to the right dosage.
Topomax seriously sucks. The question is, does it suck more, or less, than untreated Fibromyalgia?
UPDATE: I was wrong about the minimum effective dose!! It’s only 50 mg! There’s hope. I am already here and only need to see if it starts helping out after a few weeks.
Silvery slivers of linings peeking over the clouds.
