- Tagged with:
- Tremors or Twitching
What was your life like before you received the COVID-19 vaccine?
Describe the symptoms and the timeline of the reaction.
68 years old
Moderna #030L20A 2/4/21 3:00 pm
Moderna #006M20A 3/4/21 10:00 am
Moderna #071F21A 11/24/21 (booster) 1:00 pm
Administered at Memorial Hospital, North Conway, NH at the Vaccine Clinic at the Weather Discovery Center
Events began immediately after the first shot - within a few days
Within a few days after the first shot I had a neurological event that had never happened to me before. I was sitting at my desk and my eyes started uncontrollably jerking to the right. I was compelled to stand up and turn to the right almost in a circle. I wondered if I was having stroke but then gave it a minute and went back to my work. It felt like an episode of dystonia - of which I have no history. I was scared and wondered if it could be related to the vaccine, but pushed the thought out of my head.
Within a few days I started to have trouble with my vision - I was becoming light sensitive and experiencing double vision. On Feb 13th my partner and I drove to Massachusetts (about a 3.5 hour drive) and I was noticing more severe light sensitivity and often had to put my hand in front of my face to make my eyes work separately to avoid having double vision. Both of these issues were completely new to me. I would look out of each eye separately and my vision was perfect, but my eyes were not working together. On May 28th I saw Dr Walker, an eye doctor at Memorial Hospital. He tested my eyes thoroughly including muscle testing and saw no sign of weak muscles, lazy eye or amblyopia. My eyes were fine. He couldn’t see a reason why I was experiencing double vision.
Throughout the summer I became more and more light sensitive and continued to experience double vision. I was wearing darker wrap-around sunglasses and a visor always and looking out of my eyes separately to keep my vision clear.
By the end of August the light sensitivity became so bad that I couldn’t leave my house and couldn’t drive. It felt like my eyes were constantly dilated - like they do at the eye doctor. I also began to experience sound sensitivity and stimulus sensitivity. I couldn’t be with people or be part of a conversation, it overwhelmed and confused me. I began to break down emotionally and feel more and more anxiety.
I went to several ophthalmologists at Maine Eye Center in Portland, Maine who examined me thoroughly and could find no reason for the light sensitivity, my eyes were fine. I went to a corneal specialist (Dr Pedram Hamrah) at Tufts in Boston who scanned my corneas and found inflamed nerves in my corneas. I used steroids and other drops to heal the nerves in my corneas but still the light sensitivity didn’t go away. Dr Hamrah determined that my eyes were fine (still perfect vision) but something had attacked the nerves connecting my eyes to my brain and the wrong message was being sent. My brain was telling me too much light was coming in but in fact there wasn’t too much light coming in - my eyes were working fine, my pupils were dilating. The nerves in my brain were also sending the double vision message - again, my eyes and eye muscles were working fine.
I spent much of September and October in my bedroom with cardboard taped over all the windows and doors as I couldn’t tolerate even a speck of light. Sound and stimulus had to be kept to a minimum, I couldn’t tolerate visitors. I cried most of the time as my entire nervous system was firing, inflamed and crumbling by then. I became completely unable to fall asleep and paced the floor crying all night, heart pounding. I couldn’t nap during the day as I couldn’t fall asleep then either.
I was also seeing my PCP throughout the Fall - I asked my PCP and some of the nurses there if they thought the complete physical and emotional nervous breakdown I was experiencing could be from the vaccine. The nurses became defensive and didn’t want to discuss it and brushed me off as unbalanced to think that way. I kept telling them that I felt like my entire electrical system was blown.
My PCP tried me on several anti-depressants all that resulted in horrible adverse reactions.
I had several very comprehensive series of blood tests ordered by both the corneal specialist at Tufts and by my PCP. The ones ordered by Tufts showed a borderline autoimmune attack that was then followed up with extensive blood work by my PCP who found nothing. One of the tests I had at Tufts also showed inflammation to my nervous system. My PCP ordered a brain and orbit MRI that showed nothing wrong.
Two of the blood tests ordered by Dr Hamrah at Tufts were TSHDS and FGFR-3. The blood was analyzed ant the Univ of Washington and it took 10 weeks to get the results - which showed and attack to my nervous system and small fiber neuropathy.
I am presently taking 2 lorazepam per day that keep me functional and 6mg Seroquel at night which enables me to sleep.
I feel my nervous system is slowly settling down. My light sensitivity is about 95% better and with this small amount of medication I have been able to get back to my life.
I truly believe that the vaccine attacked and took out my entire nervous system. At my last visit with my PCP we went over all of this and she finally absolutely agreed with me that I had had an adverse reaction to the vaccine - she said she didn’t know what else it could have been.
Describe the solutions that helped your symptoms
Which solutions were not helpful?
What would you like others to know?
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