Serotonin Syndrome?

[serialiller]

Hi everyone,

Okay... first, some background: I have dysautonomia from whatever combo of ME/CFS (Multiple doctors have agreed that I have Chronic Fatigue Syndrome -- none of them know much about M.E., and have yet to do any diagnostics at all, but I was the one who brought the possibility to my doctor's attention since I fit all the criteria spot on and feel strongly that I do have it), undefined connective tissue disorder and orthostatic intolerance (diagnosed vasovagal syncope when I was young but more severe and POTS-like now.

In early December I was put on Effexor, thOngrats med I'd EVER been on. it helped some of my symptoms for about three days (no surprise there) and from then on only helped with my anxiety and depression. 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, 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.  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~. I didn't get checked out medically at all again despite my severe symptoms and the whole visit would have been pointless if it weren't for his ability to order some neuro tests .... some day. 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 take last night.

After the sedation wore off yesterday, I felt significantly better than I had been… but lady night/now, 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 a shadow of the jolting like before, and get more awake, preventing sleep again. And the jolting and twitchiness is starting to return along with hints of rigidity and /worsening/ heart and breathing.

I don’t know what’s going on or what to do. I feel like my doctors dropped the ball on this pretty hard. Has anyone every experienced anything like this or have any clue what's happening to me and what I should do? Everything I read says "go to the hospital immediately" but I've been there twice!

[serialiller]

Whoops--

-- suspect I might be suffering the effects of going OFF if Effexor as well as the symptoms from being ON it. Posting to Depression is a good idea, I will do that!

[serialiller]

Thank you. :) I did go to my family doctor and brought someone along to help communicate... my family doc's the one who got me in through triage later that day to see the psychiatrist.

I suspect

[laurab63]

I don't know about serotonin syndrome so I can't comment directly on that.  But I wanted to say that I was on Effexor for about a month in 2012 and when I went off it I felt HORRIBLE.  Severe anxiety, heart racing, very depressed suddenly, and I can't remember the other symptoms but it was something I never want to go through again. I'm not sure what to recommend but I wanted to express my sympathy.  If you have a good primary care physician I would talk to them and maybe take someone along for support and to help advocate for you since you are so ill. Maybe you have already done this, but it would probably be helpful to post this in one of the other forums like depression etc.  I'm sure there are people there who have been through Serotonin Syndrome.  Good luck and hang in there.