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.
Some people can’t do dairy, I cannot do weather. Apparently I shall simply have to move to a place where I can avoid it. Any suggestions anyone?
Short one today as the wild horses we slaughtered in our ‘mastering’ of these plains countries are getting their revenge by running across my face with sharp haunting hooves.
I did not walk, punch, or otherwise engage in meaningful exercise today but I did do leg and arm lifts for ten minutes while lying in bed making what my son referred to as “Minecraft zombie sounds”. I’m counting it towards the fight against Fibromyalgia as my neuro told me ANY movement counts.
I ate healthy and did cupping and engaged with my children who I actually cooked for. (Ok, I cooked for one of them because I forgot the other one had come over to pack up more stuff for the move but I did let her feed herself with my food so that’s something. Okay, okay. Technically it was my parents food, I don’t buy those burgers but it’s all a shared pot anyway.)
I wrote a daily haiku. See my portfolio.
I wrote a post here. (See above)
I call it a win. I’m going back to Gilmore Girls reruns. Stay safe and avoid the weather at all costs lovelies.
Ugh whatever is up in the Rocky Mountains right now is seriously sadistic. Nearly everyone I know is having unusual numbers of headaches and those of us who were already living life in the unusual column are clinging to the edge of the ledger by our fingertips praying to gods we don’t even believe in that a Peruvian Green Velvet Tarantula comes along and bites us.
That being said I walked today. I was able to do so because an amazing friend of mine created an amazing device for me.
See, I have some combination of facial neuralgia and parathesia that moves around my head. Some days I can wear glasses and masks and hats just fine. Others I can’t touch behind my left ear. Other days a wind across my face sends me to my knees. Lately I haven’t been able to wear anything behind my ears or touching most of my head for longer than a few minutes without my headache ramping up to GO-LIE-DOWN-NOW proportions.
As we are still amidst a global pandemic and I value my life and the lives of others this means I haven’t been able to go anywhere for very long.
Scott is a maker. He is a creator, a daydreamer, an inventor of wonderful things. He fiddles with things to make them better. He is strange and funny and wonderful and when I texted him and told him I needed his help he dropped everything to invent me this:
Why yes, that IS a neck mounted headgear-like device to hold your mask flush to your face without it touching the parts of your head that have inexplicably decided that touching is verra verra bad.
So now even though my body doesn’t like wearing masks and the world is still basically a dangerous petri dish I can now go to the grocery store or for a walk with my husband and dogs without suffering for it.
What is the point of all this rambling?
There are three points actually.
Point one: I am on day three of my exercise for 15-20 minutes every day regardless of how I feel fibromyalgia treatment streak. Yay me! (Y’all are my accountability partners. Don’t you feel lucky?)
Point two: If you see an oddball creative person that thinks differently do walk past them afraid to meet their eyes. Go introduce yourself to them and try to see if your weird meshes with theirs. You never know when you will need a creative fiddler in your life.
Point three: If you are an odd duck, don’t fret. There are those of out here who celebrate and value you precisely because you don’t think like everyone else. If you feel alone now hold on. You will find other oddballs (like I did. I now have a lovely chosen family of tried and true oddballs in my life) to be your true self around but better yet, the older you get the more non-oddballs will see having oddballs in their lives make those lives fuller and more fun. So don’t give up. You are important. You are made of stardust. (Literally. Ok, I know we all are but I like to think we strange ones have just a little extra stardust than everyone else.)
Stay safe lovelies, and be kind to one another.
Managing life with chronic illness requires savvy spoons