Sig

Dear @MomtoGiuliana At the moment I'm feeling so sick and I'm having some sort of seizures that I believe is some sort of nerve pain. It's therefore not much I'm able to move around, but I agree - it's probably smart to try to move around a bit.

Dear @Pistol I think you are right about the signaling in the autonomic nervous system (ans). I have tried IV, but without any effect. My pulse is very unstable and goes up and down from 75 -95 while I’m sitting totally still, but sometimes it feels like the ANS signals is working properly and the pulse is much more stable.

Hello Pistol I have new pills (which I haven’t taken out /divided 😊) and I have been taking them for 9 weeks now. It hasn't slowed down the downward spiral, but it has some effect on my pulse. I think that being 4 weeks of propranolol has giving me a huge POTS reaction. I guess this also effect my central nerve system and that it will take some time to get the “system in balance”.

I’m a European woman in my 40’s who has severe POTS, but I have had good effect from propranolol (5 mg x 2). Before starting this treatment my average shape/condition have been from 8 -12 % of what a healthy person can do. After starting using propranolol my shape has increased to 18-20 %. Due to wrong storage of my propranolol pills they lost effect (I took the pills for 6 weeks out of the pill cards and divided the pills in 2). I continued for 6 weeks to take these pills with little to none active substances. According to the pharmacist I was taking my pills for 4 weeks with absolutely no effect. This resulted in a heavy setback where all my symptoms are back and I’m totally bedridden and my pulse is very unstable. I have been very sick for 9 weeks now. The symptoms started gradually and increased until I “hit bottom” after 8 weeks (I’m still at this stage). It started with an increase in skin temperature, can’t have any clothes on, had to cool down my skin with a cooling element, I can’t sleep (need sleeping pills), I’m shivering, sweating in my hands and feet, the sweat in my armpit’s smells “chemical” (I never sweat generally) and my pulse is high and unstable. I have experienced the same reaction before ago after being part of a research project (I didn’t tolerate the medicine). Then I went through the same reaction and timeframe before “hitting bottom”. Back then it took me 4-5 months to get out of bed. Have anybody experienced this? Do anyone know what sort of reaction I’m experiencing?