Category Archives: Mygraine

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?

The monster in the depths…

You know that thin veneer of socially acceptable behavior we all wear throughout our days and nights? That veneer that keeps us from tossing our wine onto the shirtfront of the idiot at the cocktail party who insists on cloaking his misogynistic ramblings under the heading of “devil’s advocate”?

Some might call it self-control.

Well spoonies have masterful self-control. We maintain it with an iron fist when we are out of the house because chronic pain creates an inner voice that is almost always an asshole or a whiny bitch.

So we shut the fuck up and do our best to ignore the urge to burst into tears at the slightest inconvenience or collapse into a puddle of completely broken human being-ness as we give in to our pain and finally, at last, stop trying to pretend it hasn’t rendered us animals.

Well today my self-control decided to fly off to Katmandu for some sightseeing and I got a glimpse at the monster that lives in the depths of my soul.

Maybe it’s my medication. It’s possible that my inner voice is altered by the ugly addition of Lyrica. I’d like to be able to blame the handful of mind altering substances I pour down my throat twice a day. If not, my inner voice is a manic, terrified, angry, sick-and-tired-0f-the-pain, psychopath who wants to throw up my hands, crawl into bed, and never get up again. Ever.

With my self-control on vacation in the Adirondacks my inner voice is screaming: FUCK THIS CHRONIC PAIN SHIT. I GIVE UP!! IT’S TOO MUCH. MAKE IT GO AWAY OR MAKE ME GO AWAY OR INVENT SOMETHING THAT MAKES ME NOT CARE ABOUT IT.

Because it is too much. It’s too much. I am forty years old and I actually believe that today’s life expectancies are too. fucking. high. I don’t want to feel like this for another forty years. I don’t really want to wake up in the kind of pain that makes me uncertain I can get out of bed every day for another fourteen thousand six hundred days. That is too much of ask of me. It’s too much to ask of anyone!

It’s complete and utter unfair bullshit. It’s the kind of bullshit that makes me want to walk through my house slugging wine, pulling things off of shelves and throwing them against the walls. It makes me want to take a walk of complete destruction wear I inflict the pain I live with on every inanimate object in sight.

Why don’t I? Because then my fucking self-control would come back from helping orphans in Africa and I would have to clean it all up. Which would make me hurt more. Which is, again, fucking bullshit.

So why today? What is it about today that made my self-control hop onto the back of a bird and fly off to Borneo? My dreams.

Here is the story: I don’t sleep well. I never really have. So one of my many doctors discovered I clench my teeth like life depends on it all night long. He prescribes a night guard. I start wearing it. I sleep. I sleep well enough that I begin to dream.

Night after night I dream these freakishly intricate dreams about me as different people in different times. One night it’s a burlesque dancer who did the USO circuit in the 1940’s. Another night I’m a nurse who treats victims of Agent Orange. It’s different every night.

Two things about the dreams remain the same. One, I am always someone dealing with something that causes intense PTSD. Two, I always reach a point in each dream when I start to cry so hard I can no longer speak, even when I desperately want to.

I dream every night about desperately needing to speak about my pain and being rendered physically unable to do so. 

Every morning I wake up tense and afraid. I lie in bed and think about how fucked up the most recent dream was as I feel my consciousness return to my body and the pain filter in. It’s like putting on clothes. Pain in my feet, arms, hands, head. Stiffness in my back so bad I am not sure I can move.

I lie in bed as my body puts my pain on and I gather my self-control and my intention to make it through another day. To make something beautiful in that day. To love and to be loved. To feel the wind and the sun and the rain and to remember all the reasons I should do it all again tomorrow.

Today I needed someone else to take me to tomorrow. Today my inner monster was loud enough to make me give up. Today Dan came into my dark, dank, cave of bad feelings and despair and he held me there. He let me cry and listened as I shared my dreams and this sense that no matter how much work I do this is my life going forward and it has so much suck in it. He didn’t try to talk me out of my feelings or point out the good. He just held me. He listened. He took me for a walk. He got me out of the house. He helped me make a delicious dinner and ate with me while we snuggled and watched Game of Thrones.

When I was done my self-control was back. My desire to see another tomorrow, despite the pain that will inevitably come with it, was once again strong. My monster in the depths was once again locked away.

So if it is strong again why am I writing this?

Because your monster may not be. You might be hearing it tell you all the awful you have ahead of you.

Well, it’s right. You have a lot of awful ahead of you. You have pain and medication and doctor’s visits and missed opportunities and the feeling that you have to remain silent about it all.

You also have those things that make your day wonderful. That person who really sees you and still loves you. That animal that curls up next to you when you can’t get out of bed. That show you really want to see the end of.

So let your monster scream. Let the unfairness of it all come out for a bit. Cry.

Then shake it off, lock your monster away, and begin again. You have a long fight ahead of you but you are not alone.