Age: 43.0
Sex: F
Vaccine: COVID19
Symptoms: Skin burning sensation, Sleep disorder, Thoracic outlet syndrome, Tinnitus, Vein disorder
Clinical narrative: Within 3.5 hours of my injection, I felt an intense heaviness crawl up my arm and to my head. It felt like heavy weights were resting on my head and shoulders. I could do not much more than just go lay down. I was surprised that with my first dose I was feeling anything at all. There is no way that I had any exposure to Covid, (as I had been strictly staying home, having groceries delivered since March 2020)and I had heard that only people who had had prior exposure or reacting on the first shot.  As the night went on, I had hot and cold flashes that went through the morning.  The next day, my period started, a week early. Through the next week I felt extremely fatigued, and could barely lift my left arm. I thought I started feeling better with the exception of my arm, which was also feeling very crampy. The pain and cramping moved further towards my left side of my chest. Even lifting my left arm would cause me to become breathless and  cause tightening in my chest. I took care to avoid over doing it for a while hoping it would go away. The tightness and pain were crawling up over my shoulders and to my neck at this point. Every time I turned my head left or right there was a crunching noise. There were times I felt like my head was dislocating from my neck. One evening I experienced the worst migraine of my life. I have experienced many migraines before, and this was something entirely different. The pounding was so hard I was terrified that the end was upon me, and I did not even feel stable enough to get to the hospital. I asked my husband to bring children to me and silently said my goodbyes just in case.  Almost three weeks in to this experience, I developed extreme pains in my chest that were also extremely exhausting, I felt like gravity was five times heavier than normal, and knew that something was deeply wrong. My ribs ached and I was in severe pain if I wore a bra. I then developed severe diarrhea and I could not eat anything at all. It?s like all of my saliva went dry and swallowing mechanism no longer knew how to work.. My arms were hulky looking, with the veins bulging out, my muscles ached, I had carpal tunnel and the thoracic outlet syndrome all acting up and making my arms go numb constantly through the night as I tried to sleep.  It was disturbed and I was constantly awoken with feelings of doom and deep primal anxiety. I had a horrible burning feeling under my skin that felt like lava coursing through my veins all of the time, like the worst body aches of the worst flu ever.   I was due for my next shot. 10 minutes before leaving for my appointment, I listened to the strongest feeling I've ever felt in my gut, cancel the appointment and called my doctor instead.  I could barely get myself to the appointment. They took my blood pressure and then they made me wait a very long time before they came back and took it again. The reason why is because even after waiting 20 minutes quietly in a room, my blood pressure was only down to  the dangerously high 174/100, my usual is 115/70.  While my doctor listened to my concerns and acknowledged them, advising me not to get the second shot. When I expressed hesitancy to my doctor about taking a heart medicine, she insisted it would be important especially if I possibly had myocarditis. She did many kinds of blood work, and it showed I had high white blood cells. She also had me take an an EKG there in the office, which was normal. My doctor gave me amlodipine for blood pressure, which I took for the next six months before my blood pressure suddenly returned to my normal low and I was able to stop taking it. It was that sixth month that my periods finally returned to normal as well, after being very much off schedule, very heavy, and with horrible, debilitating PMS worse than anything Ive ever experienced before.  After that appointment with the doctor, I did my best to take care of myself and just try to survive.  I had little hope that the doctors could do much for me, and was feeling too unwell to even pursue further answers as far as testing or specialists go.  Not to mention the expense, particularly now that I was too unwell to work. The horrible pain with in my bones and joints and muscles was working its way down my body. I noticed it had moved from my head, down my back, to my legs and finishing with my feet, taking about 8 weeks to make it through my toes. Incredible pain, joints subluxating, inflammation, bulging veins, an incredible weakness like my nerves weren't able to communicate to my muscles anymore. It was like what people describe MS to feel like. Later I learned that what I experienced was similar to and possibly transverse myelitis.  My allergies seemed worse than ever and eating made my head stuffy instantly, my GI track crampy, and I would feel my heart beat change. to slow, too fast, pounding, skipping, feelings of doom or intense anxiety, and a bright red flushing that looked like a sunburn.  Often these flares would lead back to me not being able to eat at all. It's like my entire G.I. system would shut down. I would then go into starvation mode and my muscles would start losing their tone and ache like lava was under my skin again. I became very afraid to eat anything except a few safe foods.  I went on a low histamine diet and fared a little better.  Foods like garlic and onion that I had eaten daily all of my life were now causing me horrible dysautonomia flares, sending all of my body systems into chaos and high alert.  I have also been experiencing hives all over my chest, arms, and face like I never have in my life since my shot.  Another alarming sign was the amount of hair I was loosing.  It far surpassed the amount I lost after having babies.  It has slowed down a little now (a year later) but for about six months so much was coming it out my hairline was changing and I could see my scalp through my once very thick and plentiful hair. During all of this I was also experiencing a lot of neurological issues like vision problems with my left eye, intense pressure and lots of floaters. Bright lights were completely intolerable, and standing under a light gave me a sensation that made me feel like I was going to have a seizure, especially if I looked up at it. Sometimes it would trigger a rapid heartbeat, which was starting to become more of a common problem. My heart rate would go from being 65 beats a minute to 165 beats a minute within seconds and race for many minutes.  I eventually learned a vasovagal maneuver to stop it, but for a long time it was absolutely terrifying. My ears rang with tinnitus and continue to do so to this day with a constant high pitched electronic whine like a chorus of a thousand little mice singing in a monotone unison. Also, I while I have essential tremor that is pretty well controlled with a low dose of propranolol taken daily for the past 17 years, my tremor was much more intense than usual, and I often felt a deep internal tremor, particularly right around my midsection in near my diaphragm. Walking around the house made me breathless as my heart was bouncing in my chest with irregular beats. I often had the sensation of the wind being sucked from my lungs, and sometimes presyncope followed by racing heart. I started improving slowly with time until 4 1/2 months and I had another six weeks of major setbacks. I had issues with constantly choking on food, as if the muscles in my throat had forgotten how to swallow somehow.  I am a former professional opera singer, and have very good awareness and use of my throat muscles so this was very disturbing.  Food would often get stuck halfway down, or trapped partially under my epiglottis as I swallowed, keeping it from closing properly.   I had three consecutive flares, two weeks long each. My systems would go into full dysautonomia, my GI system shut down; I couldn't eat, no saliva, extreme nausea, extreme fatigue, irregular heart rhythms.  More starvation and muscle wasting, neuropathic pain, unable to eat for two weeks at a time except small amounts of soup, yogurt, or smoothies. When I started to make a turn for the better again, my muscles would twitch and my legs would bounce on their own for a day or so. Strangely enough I was optimistic that this was my nerves trying to heal. At six months into this nightmare, My arrhythmias were getting near constant, and it was presenting as something called postural orthostatic tachycardia syndrome. My blood pressure had come down, and now it was going down too low, especially when I stood up, so I stopped the blood pressure medicine. That was the same month my periods finally returned to normal. I have slowly been trying to regain my strength since then, and only have had one major flare since. It was in February; for four days I was unable to eat, my heart was jumping around again, and I was extremely short of breath and weak. The flares I've gotten shorter and I hope they continue to. I am very careful about what I eat and avoid all trigger foods. A supplement I take is called d-ribose has been helping my arrhythmias so I can work around the house again and lightly exercise.  It is usually taken for heart failure.  I have also taken zyrtec and pepcid and followed a low-histamine diet since last summer to try and manage the histamine overload. I hope I can one day return to my previous strength and health. This experience was terrifying and took a year of my life.  I spent a total of three months in bed, six barely able to walk around the house, and only now am feeling well enough to lightly exercise again. My husband had to take care of myself and our small children--thankfully he was able to work from home or I don't know how we would have survived it.  I only very recently began meeting one real estate client because it was too unsafe for me to go anywhere with my heart issues until now as my arrhythmias are fewer and I have some warning of a flare.   During the most dangerous times the main reason I never went to the ER during the very worst of my adverse reaction was because I didn't feel physically stable enough to get myself there. I am still working to my strength.  This has undoubtedly been the worst health crisis of my life.