Hi all,
I'm new to this forum. I'm NOT diagnosed with a seizure disorder. I have POTS (postural orthostatic tachycardia syndrome). Many people, POTSers and others alike, have recommended I investigate the possiblity that I am seizing, rather than simply experiencing POTS episodes (fainting with shock that produces tremors). My episodes so closely resemble seizures, that I simply call them seizures to avoid the ambiguity when telling non-POTSers about why I can't do certain things in my life (like work full-time). My "seizures" consist of blacking out, falling, full loss of control over my body, inability to speak, see (but I CAN hear), or think, and convulsions that sometimes are limited to the left side of my body and sometimes rock my entire body.
That's the background. The question is this: recently the nature of my episodes has changed. I cannot breath steadily while it's happening. I feel this during the thing as well as right beforehand, when it's coming and I'm getting aura-like signs. It's like my whole chest just freezes. This started happening any time I recline. Consequently, I basically stopped sleeping in my bed. After a month of it, several attacks a day (each lasting as long as 45 minutes, and some occuring back-to-back until I'm unconscious for several hours), I decided to forgo my medication and "detox" from it. This immediately stopped those kinds of attacks. I was on Midodrine, a vasopressor (usually prescribed for Parkinson's patients, but frequently used for POTS sufferers). I know I need to get ahold of my doctor, my POTS specialist. But I just read about Trivolta's son's death. And my daughter (5 yrs old) keeps asking me if I'm gonna die. I told her people don't die that way. I lied. But what I can say? Anyway, the question is: do people who die from seizures stop breathing? Is that the mechanism, or like why they die from that episode?