Tag Archives: topomax

Managing life my lily white ass…

It’s on my blog header, it’s in my whole cheerful outlook. Let’s manage life with this chronic illness!

Look at all my coping tools!

See my shiny things!

Well right now my illness is managing me.

And let’s face it, I’m in my mid-forties. My ass isn’t all that lily-white either. I mean, we’re in the middle of a no-end-in-sight pandemic and I haven’t been outside in a bikini since the idea of meaningful political discourse was an actual thing but my ass is more of a sickly ghostly pale, not a lily white. It’s not some semi-romanticized flowerly white, it’s a “DEAR GOD WOMAN GET SOME SUN ON THAT THING WON’T YOU!!” pale white you can see deep down veins through.

I’m sick.

Really, really sick.

I hurt everywhere, I can’t sleep. My once soft and comfortable ergonomic pillow has developed claws or teeth or maybe someone broke into my room and stuffed it with broken glass or something.

My whole fucking bed is made of discomfort. There isn’t a single comfortable position I can sit, lie, stand, or lean in. Every single miserable muscle and bone in my body hurts. I swear to the Goddess the bed is subtly shifting at night, moving me around every time I get the slightest bit comfortable.

The nerves in my hands and feet are tingly and itchy and on fire and somehow cold and stabby. Oh, and throbbing, and pulsing.

The Topomax isn’t killing my ability to think like it did before but I still have a really sore throat every day and that vaguely feverish feeling, like deep bone-aches and an overall sense of doom and gloom.

I’m miserable.

There’s no shiny sticker for me to put on it.

Right now there’s no managing it either.

There’s just getting through it and hoping it feels better, or at least different, tomorrow.

Stay safe loves.

Uncomfort-food…

I am a comfort food person. When I have the flu I want soup, when my heart is hurting I want rich, spicy, Indian food and when I have been struggling for a long time with pain or illness I want a treat. I have a strong relationship with food and feeling better.

Right now I am in a really big fight with food and I am finding myself uncomforted by its existence. Right now between the knotty intestines and the Topomax my usual treatment for not feeling well for a long period of time has turned into a looping internal monologue of disappointment and disillusionment.

“Man it’s been a long couple of weeks. I sure could use a scone and some tea to perk myself up.”
“Yep, except the scone would taste like shit and the tea would taste like shit and you’d just end up throwing them both up so why don’t you just skip the eating and drinking part and do something else?”
“Yeah, I guess so.”

It has sucked. I have had this looping conversation in my head dozens of times a day and the longer this goes on the more I have it!

Worse, one of the other coping mechanisms I have for feeling better is lighting incense or using a scent infuser but now everything smells awful so the only thing I can really do to bring myself a little peace is cleaning and while the end result is pleasant the task doesn’t really feel like pampering.

Maybe I need new books. Or a stasis device I can go into for the next 30 days.

Topomax sucks…

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.