Waking up sick daily / Long story please stick with me
TL/DR Tried a bunch of meds, and found out at the end I have POTS but still no relief.
Last October (2020)I got COVID, was knocked out for a few weeks never hospitalized, but lost of taste and smell, aches and pains, night sweats etc and seemed to give me long covid in my own opinion.
Fast forward to April 2021, I’ve been off antidepressants since January and not feeling so hot so I’ve decided to try them again. We decide to try pristiq 25 mgs as this has worked in the past. First week is constant unnerving anxiety and restlessness, doc suggests I keep taking it to adjust. Second week same thing, until I wake up in the middle of the night shaking.
I’ve had panic attacks my whole life but this is different, my usual guided breathing and hand under cold water isn’t working. My entire body is shaking from head to toe, I can barley walk 911 is dialed but not called. This lasts around 30-40 mins until the small dose of Xanax kicks in and knocks me out. That day I decided to stop the meds due to this.
Spent the next few days trying to adjust to coming off of them which leads to really bad morning anxiety and tremors to the point I end up in the ER. They find nothing and recommend me to speak with my psych again.
We end up trying another med, lamictal. Starting this med did the same thing, woke up in the middle of the night jaw chattering, shivering and tremors. I get up and try to deal with it and fall back asleep. A couple weeks of this med and I decide its not for me either and taper down.
I spend about two weeks clean of all meds to try and reset my system but the morning attacks seem to continue no matter what we do which is something I’ve never dealt with before. The next thing we try is klonopin, a very small dose of .25mg daily, this dose seem to help and keep the attacks or episodes at bay but its a short acting med and I don’t want to get addicted or form a tolerance and I felt like I needed to just keep taking more. I took it for about 6 weeks.
At this point they suggest Seroquel 25mgs. Im Leary to take it because of its med class and my mental status, I’ve never thought I needed an antipsychotic but at this point I’m going crazy with all this. First day isn’t bad, knocked me on my ass and made me sleep but turned me into a zombie. I was advised again this would clear with time and for me it really didn’t, I was so drugged feeling I didn’t even want to leave the house or do anything let alone drive. I spent 6 weeks on this as well and ended up getting off which was very difficult and ruined my sleep.
Okay, to the now. 1 month off everything at this point it feels like my body is attacking itself, I CANNOT get a good nights rest as I wake up nightly shaking and heart racing the second I’m awake along with some issues moving my hands and fingers correctly like when trying to type or text. Knees are very weak and legs shakes, wrists are weak and shaky. Some Jaw chatter and clenching. They did an EMG,EEG,MRI and everything is good. If I try to focus on something or concentrate too hard my neck will shake or tremor its the strangest thing.
Sometimes and hour after I go to sleep sometimes 2 hours and repeat. It’s a hellacious cycle. Other times I can be sitting on the couch trying to relax and almost feel an episode coming, like I’m about to start shaking or have tremors. My body gets real tight and uncomfortable, skin burning, dizzy, short of breath, difficulty swallowing, palpitations, racing heart rate.
Im a big gamer as well, and since this I cannot handle ANY sort of stimulation, playing games drives my body insane and causes shakes and have a hard time coming down after wards. Also working out/walking, or yoga seems to trigger the episodes. These were my only outlets.
Im writing this after another attack, whatever this is it loves to happen at night, I stayed up late around 1 and woke up at 3 and fell back asleep until 5 where I’m woken up out of a deep dream it felt like, heart racing body trembling and shaking, brain is complete fog, very dizzy and sweating, like I’m still sleeping but I’m also awake. Checked my glucose, blood pressure, blood oxygen and everything is fine.
I just don’t know what this is anymore but its taken away my ability to sleep and function normally, a few things I’ve read point towards maybe the SNRI’s triggered my POTS but I just don’t know. I had one doctor suggest a beta blocker which sounds good, but my blood pressure already gets so low sometimes without it. Autoimmune seems to run in the family as well.
If you made it this far I’m thankful and hope someone can relate so I can find a way to relax again.