I started the Provigil on Saturday. It is supposed to fight fatigue and help you stay awake. For me, it seems to cause me to be really really hyper and restless and talkative. It's the same reaction that most people would get with WAY too much caffeine. It's actually very similar to a manic state. It's hard for me to be on...it's very tiring. And it's pretty tiring for the people around me, too. (Sorry to Gus and Chris and Rachel.) I kinda wish it were possible to take an even smaller dose. My system is just so sensitive to stimulants (Picture me after one can of coke....I'm bouncing off the walls.) So, after it wore off, I completely crashed and every cell in my body hurt. I couldn't move for a solid 14 hours. So, I still wonder if they prescribe any smaller dose that I could try. Otherwise, I don't know how this would work on a regular basis. A lot of people have said that I just need to get used to the medication. But I am not anxious to jump into that manic state again.
I just got my very own Pronex traction unit, which I love! In the past, I haven't been able to afford it, because my insurance company considers it an "experimental" treatment. So, I was lucky enough to buy one from a friend who no longer needs hers. I love it so much, that I could see getting addicted to it. It provides temporary symptom relief, since it simulates fusion position by extracting the head further from my spine.
I'm not so sure about how much I should be wearing my aspen collar right now, because it seems to keep my neck in an unnatural position, and I think it actually causes muscle spasms! So I have to figure out what to do about that. I think I should stop wearing it for a while.
I am in physical therapy now. My PT is Anna. I had to explain chiari, EDS, and POTS to her, but she is willing to try to help me out. She's just said that she doesn't know how much she'll be able to help me. Maybe the water really will be the best place for me. We'll see.
I'm still having trouble catching my breath. It is a sign of my POTS becoming very severe. My mom called the POTS office, but they called back with worthless information about continuing my Provigil for a full month before I complain. But Provigil does NOT help treat symptoms of tachycardia or shortness of breath...only fatigue. I wish I could just talk to someone directly instead of leaving messages back and forth. I'm really disappointed in them right now. Hope for some more help to come from them, soon.
