I'm always floored by those who say they don't experience pain with HKPP. I can remember being in elementary school, rubbing and holding my limbs because they were sore. I even remember saying as a kid that something wasn't right about my arms and legs, and I had headaches and stomachaches all the time, but I was written off as exaggerating. You know how it goes at school: Do you have a fever? No. Are you throwing up? Not yet. Nothing wrong with you then, go back to class. Story of my life.
I'm struggling with constant burning pain lately in addition to my usual pain and weakness and side effects from acetazolamide. My senses are screaming, and I pretty much have to stay in a dim, quiet room most of the time just to tolerate life in general. The acetazolamide has warded off some of my daily paralysis and there's no question that I need to stay on it to some extent, but it has been over 6 months now and I'm not seeing an improvement in side effects. I'm on 125mg a day. I've tried to titrate several times but this has been a complete failure. So I'm stuck at 125, which is better than being in paralysis every morning, but Lord help me...I'm having a terrible time with this. Lights, sounds, touch...even clothing gets unbearable. It's a lot like the pain that occurs when coming out of a full body paralytic attack...for those who have been there and done that I think you know what I mean...the hot-cold-burning-stinging-help-me pain. I have lived with chronic pain since HKPP triggered in childhood, but this is worse.
I guess I'm just lamenting that I'm trading one debilitating symptom (paralysis every morning) for another (24/7 burning pain, dizziness, auras, migraines, hypersensitivity, etc). The triggers still win sometimes and I have paralysis, but it's not as constant as it used to be since starting acetazolamide, and I'm grateful for that. I am. But I'm struggling. My level of weakness has not changed. Still on crutches or a walker, sometimes in a chair. Have I already talked about this? I probably have...apologies for the repetition. I'm loopy and exhausted and I'll probably regret rambling like this tomorrow.
I'm one of those stubborn people who isn't on prescription pain meds. A few years back I was prescribed tramadol on a long term basis. I found that I was in no less pain after a little while, so I ditched it. I found other meds aren't worth the side effects, and I'm pretty stubborn about taking pain meds in general. I'm to the point where I'd consider it again, though. I'm not sure what to do next but I wish to God I could figure all of it out because I'm not cut out for this. Who is?