Hi,
I'm having an intense ordeal I'd like some advice on.
Some background: I have undefined connective tissue disorder and dysautonomia/orthostatic intolerance (diagnosed vasovagal syncope when I was young but more severe and POTS-like now), and ME/CFS.
In early December I was put on Effexor, the only med I'd ever been on. It helped some of my chronic illness symptoms for about three days and from then on only helped with my anxiety and depression, like it's supposed to. Late December I doubled the dose (37.5mg x 2). A couple of weeks ago that effect started to fade, I had sudden trouble sleeping, and a few odd spasms. Then, a few... um... days... last week?... my sense of time is so skewed!-- I came down with INTENSE, abnormal-for-me symptoms like tremors, myoclonus, rigidity, worse nausea, loss of coordination, hyperalertness and restlessness, confusion, more than usual numbness in my face and trouble speaking, weird dizziness and weakness that rushed up the back of my neck and head, increased palpitations, shortness of breath and worst of all was that when my body tried to relax AT ALL, I'd get an immediate JOLT and twitch hard into more ultra miserable awakeness. Verysevere. It's constant misery I would wish on no one, and I'm used to being sick all the time. My already messed up nervous system feels like it's both wired and in the verge of utter fragile collapse, it's hard to explain.
I knew it all looked exactly like serotonin syndrome/serotonin toxicity, so I called my doctor who advised I stop taking my Effexor, but I couldn't sleep for days and I got so bad that I had to go to the ER before I could get to my appointment with her. I was, indeed, diagnosed with serotonin syndrome, much to the shock of the doctor on call who diagnosed me. He'd never seen a case like mine, but there it was.
I was sent home with a few ativan, which helped me sleep the first night, but my symptoms persisted except for the myoclonus; the second night, I slept but it was with dozens of sleep paralysis episodes (and then sleep paralysis got added to things that happen every time I closed my eyes for more than a few seconds to rest) and the third time it had no effect at all. I went three days without sleeping again. My doctor sent me to triage for a consult but it was with a psychiatrist (??????) who didn't believe it was possible despite my insistence that my brain doesn't work by what's common due to my illnesses. I didn't get checked out medically at all that time despite my severe symptoms, a few neuro tests were just ordered for later sometime. This was on Monday; this time I got a prescription for elavil to help me sleep.
Monday night, I did sleep because of the elavil, but I reacted so badly to it on top of my already horrible abnormal symptoms that it was only after several hours of intense suffering. I know there’s an adjustment period to new meds, but it was— SO awful, awful like needing to be watched over and comforted until I finally passed out in tears, so I didn’t it take last night.
After the sedation wore off yesterday, I felt significantly better than I had been… but last night, trying to sleep, instead of the sleep paralysis and body jolts every time my body tried to relax, I get a sudden pounding, whooshing rush in my head, speeding heart AND the jolting like before, and get more awake, preventing sleep again. The twitchiness and other symptoms are returning along with /worsening/ heart (palps, pain, tachycardia more than usual, low BP) and slow/weak breathing, stomach pain and soreness all over.
I don’t know what’s going on or what to do; to pursue more testing/treatment immediately, wait it out, brave the elavil... I know that serotonin syndrome can be dangerous, and I was already very ill to begin with; I'm not sure how much my body can take. I've slept once in 5 or 6 days.