Background- 30F 98lbs 5’3 Los Angeles. Diagnosed with Dysautonomia POTS/OH by UCLA RR cardiac arrhythmia center in 2018. Was severe but became well managed with increased fluid and sodium intake and increased physical activity. All prescribed meds had severe side effects (bradycardia, extreme weakness, etc) so discontinued. Symptoms eased up over time with fluid and sodium therapy and I led a fairly normal life until March 2021. I’m on birth control and I vape. (Bad habit I picked up, I know)
I got my first dose of Moderna in late March at Dodgers Stadium. Within 10-15 min after the dose, I became severely weak all over. I struggled to breathe and it was if I had just been heavily sedated. I just slouched over and kind of melted into my seat, and couldn’t lift my arms or neck in the car. We managed to get home, but my husband had to carry me into the house since I could not walk. Totally limp. I wrote it off as my POTS acting up or just having a sensitive body and just tried to sleep it off. While sleeping I had intense chest pains and felt as if I was going to vomit, but didn’t. I couldn’t walk due to extreme weakness for the next 4 days.
I don’t know if this is related, but somewhere around day 1-4 I developed a bizarre situation at the base of my skull. I can’t remember much because it’s so hazy. It was a rough time.
So…I can not lay my head back or put pressure at the base of my skull. Basically any pressure at all on C1-C7 even down to T6-7 will cause me to black out, nearly pass out if I don’t catch it in time, palpitations, tachycardia, intense pressure in my jugular veins, and dry heave with the most intense nausea I’ve ever had. When I lay my head back for 20+ seconds, I see stars and my right eye feels weird and my vision gets blurry around the edges. I have extreme lightheadedness, tremor like shakes and I can not eat more than a few bites at a time. I can not turn my head, tilt my head back, to the side or forward. I can’t not lay back on a pillow or even tolerate laying on my side for more than a few minutes. I have to constantly let my head up and adjust to get the “blood moving again”. I literally wake up in the middle of the night dry heaving and I have to immediately adjust my position.
So, 22 of the 28 days in between the 1st and 2nd dose I slept on the bathroom floor due to sickness. Then I somehow convinced myself to get the second shot, and it got even worse. I slept on the bathroom floor for 27 days straight the second time until I figured out it was my neck and tried to make adjustments. I thought I was going crazy it took 3 months before I could muster up the strength to walk again.
Basically long story short it’s been a total of 6 months of constant suffering and I didn’t realize it until last week. It’s all a blur. Prior to my Dysautonomia diagnosis, I was told by ER physicians that it was anxiety or heartburn or that it was all psychosomatic. I was told it was anxiety by 10+ specialists before I happened to meet a random ER doc that saved me after I collapsed in 2018. Basically everyone let me just suffer and never believed me and now I have a fear of doctors because I get dismissed. I know I need to work on this, and I shouldn’t have let it get this bad before saying something. I’m now in a wheel chair and I’m just devastated at what has happened to me. I try with all my might to function and I force myself beyond what I’m capable of and I suffer for it.
I knew better than to go to the ER because I couldn’t take someone telling me it was vaccine anxiety and it would kill me inside to ask for help when in desperate need and be turned away again. I’m pro-science and vaccine. I don’t have anxiety in general either. I was even considering getting the booster but my husband and I agreed we need to get this sorted and see if there’s a connection before I do so. Also, I’m somehow still alive after 6 months so I’m assuming it’s not life threatening.
I contacted a neurologist who ordered an MRI w/o contrast last week and she said nothing was wrong with me and it was all in my head. My PCP has no idea what’s wrong and thinks it’s Thoracic Outlet Syndrome or Cervical Instability, but has no idea how to diagnose it and couldn’t help me beyond that.
I didn’t have this neck issue prior to the covid vaccine. Or if I did, it was mild and not enough for me to notice and I may have confused it with Autonomic symptoms.
If anyone out there has any idea what this could be and offer me any advice I would appreciate it.
My symptoms make no sense and I’m aware of that, but I was hoping someone out there might have something for me. I’m now in a wheelchair and I can’t even push myself because of the weakness and I’m absolutely miserable.