Age: 40.0
Sex: M
Vaccine: COVID19
Symptoms: Muscle twitching, Nausea, Nerve conduction studies, Nervous system disorder, Neurological symptom
Clinical narrative: Current Diagnoses:  dysautonomia, Small Fiber Neuropathy (SFN), Postural orthostatic tachycardia syndrome (POTS), AS vestibular loss.  Symptoms:  extreme tinnitus, brain fog / confusion / cognitive difficulty, disequilibrium, visual motion sensitivity intellectual and emotional fatigue / apathy / detachment / derealization / hyperacusis  nausea, complete loss of appetite / 50 lb weight loss paraesthesias, numbness in hands and feet L>R. Reduced ability to feel cold/heat in hands buzzing in chest / abdomen / head (internal vibrations/tremors). Muscle twitches  sensitivity to many foods/meds/supplements (make other symptoms worse). Severely reduced ability to sweat and therefore sensitivity to hot/cold temps The beginning:  On 12/15/21, 25 minutes after my Moderna booster I experienced confusion, brain fog, pressure /tension in the head, lip paresthesia, dizziness, derealization, and jaw pressure. I was seen by an internal medicine physician the next day who told me this was a reaction and should resolve. However, it did not resolve and over the next weeks all of the symptoms above appeared and continued to worsen / evolve.  Months 1-5: The first few months my main symptoms were constant nausea, constipation, loss of appetite, severe mental fog, tinnitus, and upper lip paresthesia. I would then have daily episodes lasting 4-8 hours of severe numbness/tingling in the hands/feet, as well as lips/tongue/mouth/teeth and face. I would feel apathy and be "zoned out" during the episodes due to a decreased emotional range. Luckily this meant I was unable to feel sadness/anxiety during the episodes. Starting 1/27/22 I would also have additional episodes of a flushing face which felt like sticking my head in an oven (dry heat, no sweating). These flushing episodes had mostly resolved by the end of February 2022. I developed symptoms of buzzing / vibration in the head, sensitivity to sound, extreme sensitivity to most foods, and short lasting mild headaches. I also had abdominal pain and cramping in the RUQ and RLQ. The POTS symptoms were at their worst during these initial months and I could barely stand/walk without my heartrate rising and feeling fatigued and needing to sit.  Months 6-9: Symptomatology had evolved/expanded during this time with many symptoms being constantly at their worst and flare-up episodes being less frequent and less intenseThe tinnitus spiked in intensity and volume during this time and has been unbearably debilitating ever since. It can reach levels that sound like sticking my head in a jet engine. The nausea was at its worst during this time but the abdominal pain was improved. The brain fog, internal vibrations, apathy, paresthesias, inability to sweat, dizziness, muscle twitches all continued to worsen.  Months 10-12: In general the nausea and sensitivity to foods improved slightly during this time. I can now eat more types of foods. The weight loss has stopped. The tinnitus and brain fog continue to be my most debilitating symptoms. The rest of the neurological symptoms are unfortunately also still present. I can have days with fewer symptoms than six months ago however I still "flare-up" and that causes all the symptoms to increase in intensity for a few days. The POTS has generally improved most days but it can also flare up. I have slightly improved emotional and intellectual stamina but nowhere near my baseline one year ago.  Treatments, level of disability, and quality of life: I am fortunate to have access to excellent healthcare as I work for the Health System. Below are a list of the office visits I've had related to this condition which began 12/15/21. Please see item# 19 for related diagnostic testing / imaging. GI: Zofran helped when the nausea was severe. PPIs and Bentyl did not help with any of the GI symptoms or abdominal pain. Neuro: I had one treatment with SPG blocks which did not help. I have been prescribed a few headache medicines which also did not help (headache is rarely a bothersome symptom) Gabapentin does nothing for the lip/hand/feet numbness. Nerve pain is not one of my main symptoms.  Cardiology: I was prescribed Metoprolol to take when the POTS flare up. It helps slightly. It is not a cure. Neuro ENT: I was prescribed steroids and Valtrex (despite never testing positive for HSV1, HSV2 or any virus). I could not tolerate this medicine well and saw no improvement from what I was able to take.   Other treatments: I have tried many OTC supplements with no success. Intermittent fasting and a low histamine diet help a little as does a certain probiotic (Phyto-v Yourgut Plus) Conclusion:  Even one year later most days are unfortunately not worth living. There is no explanation for the mechanism of this disease and its constellation of symptoms. I have been told off the record it is likely a dysimmune response or unspecified endothelial disease. I have learned to live with the dysautonomia, POTs, paresthesias, internal vibrations, and temperature intolerance. However, the tinnitus, brain fog, intellectual and emotional fatigue are unbearable most of the time. I speak, write, read, and think in slow motion. This VAERS report took me weeks to put together when it would have taken me two hours before. My PCP wants me to go on disability and I have refused. Fortunately, my employer has been very understanding of my condition and has tolerated me doing currently 25% of the work I was able to do one year ago. This is up from the 10% I was doing a few months ago. No treatments have provided significant relief, only time seems to help and healing from this is not linear as flare-ups set me back. I am willing to provide my full medical records on request.  PCP (1/11/22, 2/3/22, 2/10/22, 3/1/22, 3/17/22, 4/14/22, 9/12/22) IM Dr. (12/16/21) GI Dr. (1/24/22, 5/16/22) GI Dr. (4/13/22) Neurology Dr. (1/27/22) Neurology  Dr. (3/7/22) Neurology Dr. (9/13/22) Neurology Dr. (7/27/22) Neurology Dr. (4/12/22, 6/22/22, 8/2/22) Neurosurgery Dr.  (7/12/22) Neuro ENT Dr. (10/14/22, 11/4/22) ENT Dr. (2/15/22) Allergy/Immunology Dr. (2/16/22, 5/24/22) Cardiology Dr. (4/19/22) Cardiology Dr. (9/12/22) Rheum Dr. (3/22/22) Audiology Dr. (7/14/22) Hematology Dr. (9/28/22)