Disabled By The COVID19 Vaccine : My Story

Tuesday 24th August, the day my life changed forever. Lets get you up to speed...

First of all, my reason for choosing to take the vaccine was to be able to travel for my job, a job which I'm no longer capable of doing. My family and I had a wedding dress shop, and after what was an incredibly difficult time for the wedding industry, I was adamant that I wanted to do everything that I could to get business back on track and regain some kind of normality; so I made the decision to take the first vaccine, in order to be able to travel to New York in October 2021 for New York Bridal Week. To travel to NYC, in line with the guideline you had to be double vaccinated, but you also had to show proof of double vaccination to gain entry to the bridal week shows.

So on the 28th June 2021, I did what I was told was the right thing to do, and I went and got my first dose of Pfizer. We were herded up like cattle in the vaccine centre. One in one out. Quick and painless, no different to taking a shot before going abroad any other time?

Following the vaccine I was given an information leaflet, and I took a seat in the waiting area for a few minutes before deciding to leave. Just after leaving I noticed a rash forming on my left arm, and I started to feel very tired. Within an hour of getting the vaccine, and getting back to my flat in the city centre, I was exhausted and fast asleep. I woke up a few hours later to pain in my armpit, only to realise that my lymph nodes were swollen. I then started to develop aching in my joints, much like when I had Covid both times, so I decided to get an early night and hopefully sleep it off. I woke up the early hours in excruciating pain, every inch of my body hurt and after uncomfortably tossing and turning on my soft bed, I just wanted to lie on the hard floor. I grabbed my phone to text my mum to tell her that something didn’t feel right, and within minutes the strangest sensation came over me. My body began to tense up, my jaw locked shut, I couldn’t open my eyes, speak or move, and then my body began to convulse and shake uncontrollably; this was my first seizure.

The following morning, I woke up on the floor, I had blacked out and fallen asleep there. I was still in a lot of pain and extremely sensitive to light. My family advised me to call 111, so I dialled the number and patiently waited on hold, all whilst reading the information leaflet that was given to me. I couldn’t find any details on there about what had happened to me and all the leaflet really said was that some may experience covid symptoms. When I finally got through to someone to explain what has happened, they advised that first time seizures following your covid vaccine were in fact no cause for concern, and that you should only worry if your leg swells up (following a blood clot) or you stop breathing. I naively took their advice without question and took the day off work to rest and recover. For around 4/5 days after the first vaccine, I had what I thought were covid like symptoms, such as drastic changes in temperature, hot flushes that would leave me on the brink of passing out, dizziness, heart palpitations, fatigue, aching, vivid dreams etc, however some of these lasted longer than a few days. As time went on, the fatigue got worse and I also started to develop insomnia, brain fog, rashes, hair loss, amongst other things. My second vaccine was scheduled for September 13th 2021, but I was due to have my wisdom tooth removed the following day, so they advised me to move my vaccine appointment forward, so the new date for this was i August 2021. Prior to my second vaccine, I rang my GP to ask whether it was possible for me to have exemption of the second shot following the reaction I had. Having spoken to many others, I had not encountered anyone who had had a seizure following their first dose, so surely that wasn’t normal? Despite a seizure and continued to symptoms, I was told that I would not be granted exemption, and advised to outweigh the long term benefits of the vaccine against the ‘short term’ side effects, and was in no way deterred from taking the second shot. Following the advice from my GP practice, I went to the vaccine centre on the 24th August 2021, not knowing that my life would not be the same again.

At the vaccine centre, I told the man that administered the shot that I had experienced a seizure after my first dose but he did not seem phased by this, so I took the shot and was driven home to my flat in Manchester where I got straight back into bed, nervously awaiting what was to come. An hour or two passed and I did not experience any of the aches or swollen lymph nodes that I had previously, and I hopefully thought that I had gotten away with it this time and that maybe it was a one time thing. Shortly after this, I walked to the living room and I started to experience vertigo and visual disturbances. My eyes would not focus properly and my vision became increasingly blurry. Around 10pm, I was sat on the sofa with my boyfriend and we decided to go to bed, but I couldn’t get up, my body wouldn’t move; I had full body paralysis. A few minutes passed and I still couldn’t move, or speak; my boyfriend tried to move me but my whole body was frozen and stiff. After around 5 minutes it started to ease up and my boyfriend carried me to bed, where he placed me on the bed, but then a feeling that I had only ever felt once before came over me.; a feeling that I now know to be a seizure aura. My body began to convulse and I experienced my second seizure. I came round from it after a minute or two and then my vision started to black out and I was told I had another seizure. I woke up the next morning in a lot of pain and very confused. I started to develop pains in my chest and I was short of breath. I was dizzy, my vision was blurry. My body was so weak. I had never felt anything like this before. I made my way to the living room around midday and I started to feel very disorientated, it was happening again, I was going to have another seizure. I luckily made it to the sofa before my legs gave out on me, where I started shaking and convulsing again. My housemate, who was working from home at the time, ran over to me to make sure I was ok and didn’t hurt myself on any surrounding objects, before getting my boyfriend and getting me back into bed. That day I had 9 seizures and was barely conscious in between. My boyfriend called 111 who advised us to call an ambulance if it happened again. I had 3 more seizures and paramedics were on their way. Two paramedics arrived and crammed into my bedroom both with mixed reactions. They had never seen anything like this before. Their judgement was very much clouded by their own opinion on the vaccine, and one paramedic was quick to label me as ungrateful because this was surely a sign that the vaccine was working, whilst the other had genuine concern for my well being and wanted to get me to hospital ASAP. I was taken in an ambulance on my own, as covid guidelines forbade anyone from coming with me. My body was weak and I couldn’t stand up for long so they put me in a bed and took my blood and vitals. I was then moved to a waiting area and left to fit on a plastic chair for hours, so when it reached 7am and I still had not been seen by a doctor, I decided to discharged myself. I got back to my flat where my boyfriend had waited with me and he watched over me whilst I slept. I was woken up by another seizure and this continued into the day.

For the 4 days after my vaccine, I was having around 12 seizures a day. Any medical helpline we rang assured us that it was just Rigors and that it would pass. By day 6, it was still happening and I was told I was showing red flags for serious problems, so I was taken into hospital. The first doctor at Wythenshawe hospital was fantastic, he wanted to do a CT scan immediately to check for blood clots in my brain because they had found these in women following the AstraZeneca vaccine. He also wanted to do a chest X-ray due to the chest pains I was experiencing. I was kept in overnight on my own. The doctor I saw the following day was incredibly dismissive and wanted to discharge me with a UTI, despite not having done a urine test or me experiencing any symptoms that align with that diagnosis. Shortly after, I had another seizure, and it was witnessed by another doctor, who then referred me to the first fit clinic to be checked for epilepsy before sending me home.

Two days later I wound up back in hospital. I was still experiencing seizures, blackouts, chest pain, visual disturbances and I was so weak I could barely stand. My blood pressure was very low but my heart felt like it was going to burst out of my chest. This time I had been advised to go to Salford Royal as that was where the neurology department was based. I got to A&E and collapsed so I was put in a wheelchair, but then I began to have seizures and would bang my head on the wall next to me. I was taken through to another room and put in a bed. I waited hours to be seen, only to be dismissed by a doctor who told me that I was probably just stressed about work. She old me that she had seen people who had had vaccine reactions and that I did not look like them, and then went on to tell me that it was “in my head” and that I should “go home and ride it out”. This was my first instance of medical gaslighting.

Two weeks later I had an appointment to see an epilepsy specialist. I arrived at my appointment, on my own, and had a 20 minute fit on the floor. I came around surrounded by 6 people, who were all very understanding, and then the epilepsy specialist who immediately told me that this wasn’t epilepsy. When I was able to, I told her that this had only started since the vaccine and she said that there is a possibility that it could be that because they do not know enough about it, so I therefore needed more tests. My diagnosis at that point was “seizures following Covid vaccine.”

As the wait times were so long, I decided to go private and was advised to have an EEG and MRI. It was becoming increasingly difficult to walk, and I was also experiencing a lot of cognitive issues, as well as nerve pain and changes to my vision. Fast forward a few months and I had a list of over 30 symptoms, and I had a number of scares, that land me in the back of an ambulance - a suspected heart attack, (in this instance the muscles around my heart had gone into spasm), a suspected aneurysm and a suspected stroke (which turned out to be a hemiplegic migraine).

I have had a number of tests, including 2x MRI, 2x CT scan, EEG, Echo Cardiogram, 2x Chest X-ray, D-dimer, and a number of blood tests for deficiencies, auto-immune conditions etc, with the conclusion being an adverse reaction to the vaccine, as well as suspected Functional Neurological Disorder which has been triggered by the physical trauma from the vaccine to my body.

It was around this point that I decided to share what had happened to me on social; media, as I was desperate for answers. My post reached hundreds of thousands worldwide, and this is when I learnt that I wasn’t alone in this journey, and that the same thing was happening to many others. There is a community of vaccine injured globally who have come together to support and help one another. Through these amazing people, I have been able to learn more about the challenges that we are facing, as well as remedies. One of the first things that I implemented was supplementation, I was clueless until that point about key vitamins such as magnesium, which can be helpful for seizures, migraines and it also boasts anti-inflammatory benefits. I also changed my diet to an anti-inflammatory diet to see if this affected my symptoms. After this, I then began to see a homeopath, and tried treatments such as Ozone Therapy, Vitamin IV’s, Infrared Saunas, Oxygen therapy, Cranial Osteopathy, Lymphatic Drainage Massage, Reiki and most importantly Goldic. Out of all the treatments, Goldic has been the most successful. This treatment is typically used for Orthopaedic procedures and regenerative diseases, but it essentially fuses gold with your own blood, and then the plasma is reinserted via IV or cannula. Gold has natural anti-inflammatory purposes and within a few treatments, we could already see a difference. When I first hobbled into that practice, I couldn’t walk in a straight line, I had partial vision and I was barely able to speak because of the cognitive difficulties I was facing. I had a total of 8 treatments as part of a clinical trial, which hopes to give the data to the NHS, as there are millions of people with Long Covid that could also benefit from this treatment. The doctor that I dealt with was incredible and suspected that this was an auto-immune response to the vaccine, as well as having inflammation in my cerebellum which was causing the ataxia I displayed.

To this day, I still suffer with seizures, tremors, chest pain, photophobia, nystagmus, fatigue, insomnia, paralysis, absences, swelling in my joints, tinnitus, sensitivity to sound, brain fog, migraines as well as difficulty with speech, memory, balance and concentration. Almost all day, everyday, I have to wear tinted lenses, because I am so incredibly sensitive to light, and bright lights can also cause my body to go into spasm. On a weekly basis, I suffer from at least 4 migraines, some of which are auras and/or hemiplegic; these not only mimic symptoms of a stroke which include facial drooping but also leave me so confused that I do not know my own name. On a daily basis I suffer with body tremors and paralysis in my hands, which makes it near impossible to do basic things. The fatigue that I now experience makes it difficult to get out of bed, and it is not uncommon for me to have to sleep up to 16 hours a day. I now suffer with sensory overload, which at times can make it hard for me to read, speak or even understand spoken word. My chest is still so tight that I can become out of breath just going into a different room. Seizures are less frequent but more violent, and we are still trying to figure out all of the triggers. At just 30 years old, my days are typically spent in bed, or lay in a dark room, all because of two doses of Pfizer.