Saturday, June 25, 2016

The pain is me

Well, the feeling of constant panic has subsided. It could have been from any number of things (steroids, serotonin, high magnesium levels, just too many medications to tolerate). I also don't seem to be having the burning inside, which is definitely a relief.

I still get hot flushes, where my face feels really hot, but it's less intense and painful. The panic has been replaced with a low level of dread/fear in the pit of my stomach. It's pretty much always there. I just dread continuing to live with this pain.

The pain in my head and face has persisted. I can't say for sure that it's a migraine at this point. It's not actually throbbing. It's just constant pain that is worsened by sound, light, movement, exertion, and especially smells. It's in my temples and cheeks, the worst of it in my left cheek. It goes deep inside, feels like through my cheekbones and into the roof of my mouth. It just seems that this pain is a part of me now. Like my face doesn't know how to feel any other way.

The pain also just seems to go up and down throughout the day. Never below a 5. But it climbs up to an 8 or 9, sometimes for hours at a time. (I really don't use number 10 on the pain scale. It's supposed to be for pain that makes you pass out, and medical professionals don't seem to take you seriously if you use it.)

I'm taking nothing for it this week, because clearly my system got overloaded. So it needs a break.

But so do I. Do I even exist outside of this pain anymore? I'm trying to stay in touch with friends, and stay positive for family, but it can be hard. It's probably hardest on my husband, because he has to live with me.

I haven't started back on the Topamax (anti-seizure medication, migraine prevention), because I'm afraid it was contributing to the panic. I will wait a couple more days to be sure the panic is gone, then try it again. I really hope I can tolerate it. Because I know they are about out of things to try for me.

My POTS has been weirdly stable the last couple days. Don't know what that's about, as I haven't been able to exercise in weeks now. I tried once to ride the bike for about 10 minutes, but as soon as I get the blood pumping, my head pain increases again. So I had to ride in slow motion, basically.

My fears of this ever ending are pretty constant. It feels like I'll never be able to leave my little darkened cave (our apartment). I'm missing out on life--more than usual. I'm used to missing out on most things. But this is a whole new level.

The facial pain is so severe, it's getting painful to chew. (My jaw and bite are supposed to be quite healthy-thanks to orthodontics and wearing my retainers every night. No grinding or clenching.)

I'm not seeing the doctor again right away, because I need time to give Topamax a try.

I've heard about a sphenopalatine ganglion nerve block, where they thread a catheter up your nose and spray lidocaine, trying to numb a nerve back there. Not sure if it would be helpful for me, but it's something I haven't tried.

They said they could try me on Gabapentin again, but I don't feel really hopeful about that.

I'd be interested to know if medical cannabis would help this pain, but of course, afraid to actually try it, when I don't know what my reaction would be.

I could end up back at a pain management doctor, with an endless cycle of opioids. But I don't tolerate those very well either.

For now, I have to just keep existing like this. And try not to think what the rest of my life looks like, or what I'm missing out on. Just survive.

Luckily, I have great screen dimmers on my phone and tv. So, I can usually tolerate some amount of entertainment. I feel like I've seen every show ever made that isn't too loud or hard to follow. I'm currently watching "Death in Paradise," "Army Wives," and "Gilmore Girls." With some random movies mixed in at times.

Thanks for checking in with me. I may be up for visitors at times this week, but they would need to be incredibly unscented.