Category Archives: Migraine

Chronic pain, chronicillness, chronicpain, drugs, fibromyalgia, health, Migraine, Mygraine, pharma, prescriptions, Spoonie, spoonies, Spoons, Spoons, topomax

Topomax sucks…

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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.

Chronic pain, fibromyalgia, Food, Healing, health, Migraine, Trigeminal neuralgia

What is with the weather…?

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There is some sort of weather ‘ledge’ here on the front range that is sending my body into a tizzy of confuddled circles trying to decide exactly how fucked up I should be.

It kind of sucks actually. My face is dancing it’s little spiky-heeled tango on the left side of my head and my scalp is super sensitive and my joints can’t decide if they are weak or stiff or just in pain.

I mean, it’s bad enough that my body wants to belong to the club of “medical science just doesn’t get me” but now the weather does too?

Can I sue climate change deniers for personal damages now that the global climate change is making my body crazy?

…

Sorry, lawyer brain went off on a trip at that one. I’m back now.

It just seems unfair that the weather on a good day can make me feel shitty so when I’m all “It’s my year to get understand my body” the weather is all “hold my beer” and then the beer is actually a multi-week long storm front that stays at the ice-pick stabby stage for the whole damned time instead of having some sort of precipitation that fixes it for me.

Anyway, despite Mx. Weather being an asshole I managed to box yesterday and walk briskly this morning. On track for moving my butt around and creating brand new small nerve fibers to combat this stupid syndrome of mine.

I also made an appointment for a surgery to correct whatever is going on with my small intestine and the scar tissue from my hysterectomy.

Then I made a cake, because I wanted one. I put beets in it though because I wanted to be healthy.*

So, I’ve completed two days of my new plan. I’m doing what I can to feel better.

* Also possibly because I am insane. However, six other people have tried this beet cake and declared it good so I am not the only insane one out there. It’s a bit like a carrot cake had a baby with a zucchini bread but was bitter about it.

That’s all for today loves, stay safe out there.

Oh my goodness, I almost forgot. Here’s a link to those Valentine’s ECards my haiku are featured in. I’d be honored if you would pop over and check them out. I believe you get to send up to five cards for each donation.

chronic, Chronic pain, chronicillness, chronicpain, fibromyalgia, health, Migraine, self-care, Spoonie, Spoons, Spoons

Self Care = Work

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It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.

It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.

It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.

That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.

Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.

And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.

And it’s missing the days when a massage was just a massage instead of a medical treatment.

And it’s acknowledging it here on your blog and then letting it go.

Much love to my spoonietribe. Keep on keeping on.