My COVID vaccine story - side effects and more
Dizzy, tiredness, brain fog, light sensitivity and eye pain from the COVID vaccine
pro vaccine and thi
s blog is not meant to tell someone whether they should or should not get the COVID vaccine - it's up to you, but these are the side effects I have experienced. This blog will hopefully help others suffering from these debilitating effects, as there's not much information out there. Please contact your doctor before changing any medications. I am not a doctor and I'm not responsible for your health, based on what I've written here. Contact me for questions.
COVID Vaccine / Photo Credit: WSJ
April 22, I received my second Pfizer vaccine in my left arm. Twenty hours later at 6:30 a.m., I awoke with a massive migraine in my right eye. The pain was unbelievable, nothing that I've experienced in my life and I've suffered from migraines since I was 16. The pain was in the whole eye, but particularly in the back of the eye. I took 1,000 mg of Tylenol and went back to sleep. I woke up 4 hours later, very tired, groggy and had a lot of brain fog, just what most of my migraines end with, so I didn't think anything of it.
The next day, I felt much better and began cleaning the house. In mid cleaning, I began to become dizzy, specifically tilting my head up and down. The rest of the day, I felt like I was on a boat, tired and my vision began to show weird signs - white and black lines and I could distinctly feel my right eye - tiredness and brain fog.
Over the next few days, the symptoms became worse. I had anxiety, my face and teeth were on/off numb, headache with brain fog and the vision issues where jumping between right and left eyes. I drove myself to the grocery store one of those days, and felt "off", unsteady on feet and didn't see very well. I remember, turning left into the in parking lot and not seeing an oncoming car until it had passed and felt scared that I was going to pass out. I parked my car, had a full-on panic attack in the parking lot, calmed myself down and carefully drove the 5 minutes back home. After that, I didn't drive myself or leave the house for 2 weeks.
I made an appointment with my Internist and she made an appointment the very next day with an Ophthalmologist, who dilated my eyes and took a photo of the back of the eye. Everything came out structurally fine. He said I was stuck in an ocular migraine and it should go away in a few days, but I needed to take it easy. I spent Saturday all day in bed and off all screens and by Sunday, I started to feel better. I stayed off screens on Sunday as well and everything was looking in the right direction.
I experienced 10 weeks dizziness like being on a boat, tiredness, light sensitivity, eye pain, vision issues and brain fog. I had these symptoms all day, everyday, except when I slept, from the 2nd Pfizer vaccine.
Monday, I got back on my computer thinking this was the end. Nope...I was wrong. All my symptoms came back, pain the back of the eye, dizziness, uneasy walking around the house, and still didn't drive. I couldn't do anything around the house, yard work or even working. Piet had to answer my emails for me.
I tried Blue Blocker glasses, that didn't work. I pretty much lived in a reclusive bubble with limited conversations with others. My brain fog was making me sound stupid, I couldn't think of my words or finish sentences without stumbling or zoning out. We had a friend stay with us for 4 days, and all the talking we did, made me so tired and made my head hurt.
On May 10, I went to a neurologist who did a full work-up and she thought I was stuck in an ocular migraine as well. She prescribed Topiramate (anti seizure meds) that would hopefully break the cycle of the ocular migraine. I took it at bed time and immediately felt dizzy, but at this point, I'd try anything. The very next day, I had my life back - mostly. I was able to drive by myself for the first time in two weeks and it was surreal. I worked in the yard, standing on a ladder and I had no dizziness or nausea! But, I still couldn't watch TV or be on any screens. The neurologist did tell me to stay away from all screens for at least a week to make sure the medication will work. That was a LONG week with no screens, including iPhone, I did a lot of puzzles and listened to audio books and podcasts to keep my sanity. At the end of the week, I was hopeful, but still not 100%, because my eyes were still sensitive. We upped my medication to 50 mg and it didn't help the screen issues at all, and some crappy side effects took over and I had to stop taking the meds.
Over a 4 week span, I did two scans - an MRI to double check that there weren't any brain tumors or cysts. Then I had an MRA without contrast to make sure there were no blood clots or that I had had a stroke. MRI and MRA were clear.
First blood work was for thyroid, liver function, cholesterol, and blood count - everything was fine except high cholesterol.
Second blood work was looking for inflammation within the blood and it came back normal as well.
The neurologist changed my medication to Amitriptyline (antidepressant) when the Topiramate wasn't breaking the cycle of the ocular migraine. Good Lord that medication was horrible. 10 mg made me so tired, so we dropped me down to 5 mg and I just had no energy. But it stopped my eye numbness, light sensitivity to computer and TV screens. So, after 6 weeks of no working, I finally was able to work! I caught up on 6 weeks of TV as well. I was able to ride my bike more, but the tiredness was too much. We tried lowering it down 3 mg, but the tiredness didn't let up and the eye numbness came back. So I took myself off the meds, totally.
As soon as I could get back on the computer, I started researching for other people who had my same symptoms. It was so hard to find anything other than 2-3 days of symptoms that everyone else had. And then I found it, www.vestibular.org with a forum of others discussing their symptoms and they were identical to me (except most of them had tinnitus and not the light sensitivity). These are my people!
One of the people in the forum had found a doctor who believed her (you'd be surprised how many doctors didn't take us seriously), and he stated that we have inflammation in our immune cells and we need to "flush" this inflammation out. He suggested taking Liposomal Glutathion, Quercetin and Zinc - she took them and within a few days she noticed a difference.
So I ordered the same (the Glutathion is from Tri-Fortify in a paste form) and begin taking the supplements every day (450 mg of Glutathion, 500 mg Quercetin and 30 mg Zinc) and it absolutely helps the dizziness and the eye sensitivity. Is it curing the root problem? No, but it's letting me function at about 80-90% everyday. Some days are better than others, but that's part of this challenge.
In week 7, I visited a Neuro Ophthalmologist at USC Keck Roski Eye Center to make sure there wasn't anything wrong with my eyes. The appointment was supposed to be 3-4 hours with testing, it was 10 minutes. The doctor, as she walked into the room, told me that she wasn't going to be able to fix me. She looked at my eyes and when I mentioned that my doctors think this is caused by the vaccine, she flatly told me that it isn't. I pressed her on this and she stated that she hasn't seen any research on this. Well, no poop, there's no research, it's brand new, but that doesn't mean it doesn't exist. She told me she wanted me to try painted contact lenses - which would filter the light out. That appointment wasn't for another 1.5 months away - what the hell was I supposed to do between now and then. Pointless appointment.
I went back to my original Ophthalmologist and my eyes still look good. He believes it's from the vaccine and not to get the painted contact lenses, just wear sunglasses...it's the same thing.
I can't tolerate heat above 85 degrees, my body feels like it's frying from the inside out. Another symptom is getting light-headed upon standing.
Some people in the forum had mentioned Dr. Bruce Patterson, who is a pathology doctor who focuses on HIV, but now is focusing on long haul COVID patients and long haul vaccine sufferers. Long haul vaccine sufferers have some of the same symptoms as long haul COVID patients.
Take a look at the video from Dr. Patterson & Dr. Been (it's long, but informative):
The video explains exactly what I have and I'm not stuck an ocular migraine like most doctors *think* I have. I don't blame the doctors, they've never seen this before.
The gist of the video is that when you get the vaccine, spike protein particles at left behind in the immune cells. In the majority of vaccinated people, you will have these particles for 24-48 hours and then the body gets rid of these particles. The lucky ones, like me, the particles stay behind in the cell for a much longer time, which then causes inflammation. That inflammation then leads to the symptoms like that I've been having.
I've contacted www.covidlonghaulers.com, which is Dr. Patterson's business, to get an immune blood test, check my levels and hopefully start on a treatment plan to get the inflammation removed.
Week 12 - 14
I'm officially in with the COVID Long Haulers and had a blood draw for Cytokine 14 panel.
I have my results, but no clue what the results mean. I have a virtual consultation with one of the doctors on August 26 to review the findings - I hope they actually find something wrong with me and hopefully a course of treatment.
Along with not tolerating heat well and light-headedness, I now have hot flashes and profusely sweating while sitting. Fatigue, it's really and it sucks.
Week 18 - 19
I had my video consultation with one of the COVID Long Hauler (CLH) doctors and he stated that I have vascular inflammation - pretty much all my veins are very angry. That explains why I can't tolerate hot temperatures and I feel like I'm burning from the inside out. He has made suggestions for a course of treatment, but I have to work with my local doctor to get blood work, testing and meds. My local internist does not want to help, so I have an appointment with a doctor in Beverly Hills. She works closely with the team at CLH.
I don't sweat profusely anymore
I still can't tolerate heat
The fatigue is my main issue - some days are good and others not. I can't run errands and exercise in the same day. I really have to be mindful of what I do each day.
I've been working more on the computer and the eye numbness in the right eye is back.
I still have light sensitivity, must wear sunglasses outside. I'm having a sensitivity to sunglasses as well - my current glasses are fine, other than they are falling apart and being held together by tape. I've tried a wide range of sunglasses from polarized to unpolarized, cheap to expensive, and all cause my eyes to "quiver", dizziness and nausea in about 30 seconds.
WHAT I CAN'T DO
Reading - I still can't read a book. Reading makes my eyes really tired and makes me feel "off." I usually will fall asleep with 5 minutes of reading.
iPad - No go on the iPad, my entire face and mouth go numb, makes my eyes tired and I can only be on it for about 2 minutes.
Long bike rides of more than 30 miles - I get easily tired, so I have to keep my miles down.
More to come...