My name is Samantha, I am 38 years old and I live in Southend, Essex, England. I am a mother to two young children and have worked as a beautician for nearly nine years. I have no prior health conditions except childhood exercise-induced asthma, which I hadn’t suffered from for many years. Before the jab I was running every week in training to do my first half marathon. I was the fittest I had ever been.
I didn’t have any hesitation about getting the vaccine. My daughter caught covid in Christmas 2020 and was poorly with it. She ended up in a wheelchair. It was such an awful time that my husband and I got vaccinated for the safety of our children.
I got my first AstraZeneca on the 29th of March 2021 in my right arm at a local chemist. I experienced no immediate effects besides an achy arm and went about my business as usual.
I then got my second AstraZeneca on the 15th of June, again in my right arm at the same local chemist. I experienced what I would describe as electrical headaches. Small shooting pains. But I just put it down to a normal side effect from the vaccine.
We went home, had a BBQ and everything was once again normal. I received my third dose of the vaccine on the 14th of December 2021 at a pop up clinic, this time Pfizer.
I was fine until almost a week later when I was out running. I had trouble breathing and my right hip was noticeably sore. I went to the doctor who gave me a pump/ blue reliever to use as I had a history of asthma. It did not seem to provide any relief.
I routinely went running every Monday with a friend and it got to the point where I could no longer even walk the circuit. My breathing started getting bad even when sitting still. I’d be out of breath walking up the stairs, carrying out normal tasks and everything became a real struggle.
It seemed as if my body had taken a hit from something. I went back to the doctor’s a few times as I had also developed a strange red rash all over. My body began shaking and I could feel something was just not right. Sometime in mid-January 2022, my right arm became painful. I had noticeable swelling in the glands under both of my armpits and in my right breast.
I went to Wesley Hospital, where they performed numerous scans and an MRI. They predicted that there could be a complication with my breast implant as my symptoms indicated something was poisoning my system.
By this stage, I was so ill I couldn’t stand up. On the 29th of January I woke up with Bell’s Palsy (BP). My entire face had fallen and I couldn’t lift my right arm.
My face was so bad that I didn’t want the children to see it. My dad had previously suffered four strokes so I suspected that I could be having a stroke.
The ambulance service was appalling at this time, with long waiting times. We lived fairly close to the hospital, so I drove myself straight there.
When I got there, I was parked and sitting in my car. My breathing was really bad, I was shaking and when I went inside, I began to have a seizure. They took me to a bed inside the A&E department. The nurses were lovely and helped me breathe through the seizure, holding my hand.
It was frightening, my feet and hands turned inward and I couldn’t control my body. I had a total of four seizures whilst in hospital. A doctor then came in to assess me. I was told there was nothing wrong with me. That I was having a panic attack and was to be discharged.
The doctor also said they couldn’t see anything wrong with my face, even though I showed pictures to compare with what I looked like normally. My good friend came to collect me and she was shocked at the fact I’d been sent home with nothing. Once home, my husband got on the phone with Weasley hospital. He explained he was scared, that I was so ill he didn’t know what to do. There was no advice.
I went back to the same hospital on the 2nd of February, where an MRI and ECG showed slight irregularities in my heartbeat. My temperature was high and I was still covered in rashes.
They suspected I might have sepsis and carried out lots of blood tests to be sent to south end Hospital. I must have had every blood test possible, everything except a lumbar puncture. They were going to do it on my first stay but I refused due to fear of fitting.
They were so worried about me that an ambulance was called to take me to the south-end Hospital where they refused to look at my tests because they were not performed on the premises.
They had to carry out each one again which was highly distressing as I’m terrified of needles. Not only that but I was shaking intensely and my veins had already collapsed from the previous tests.
From this point on I couldn’t walk. My legs were in spasm, tingling and shaking. I had struggled to lift my right leg ever since the first attack but it was worsening progressively. I was kept in the South End hospital for two weeks. I had an MRI of the brain and spinal cord, a d-dimer test along with every blood test possible which all came back normal.
I lost all my speech, I was slurring my words and I knew what I wanted to say but couldn’t get it out. I was suffering constant migraines and my vision became blurred and worsened over time with black spots and auras.
I received a diagnosis of complex migraines with stroke-like symptoms, which was put on my medical record. I was given medication for the migraine symptoms but told there was nothing more they could do for me, and discharged.
I went home but had to keep going in for a regular check-over. I would sit in the ward for a day for them to keep an eye on me. I have to say, the staff were really good on that ward. The rest of my time was spent on my sofa at home, sleeping.
The migraines intensified but my legs improved over a few months although they were still tingly. I started NHS speech therapy where a specialist came to my house every week.
I was in and out of hospital every second day. Due to restrictions, they weren’t letting anyone in so I was struggling to communicate what was going on. Even in the ambulance, my husband was not allowed to accompany me. I had to go through it all on my own.
I was sometimes left in a corridor for up to fifteen hours as there were limited beds. My husband would sneak in and give me food and drink as I couldn’t walk and was attached to a drip.
I felt forgotten about although one time a nice doctor brought me pizza as I’d been sitting from 7am to 9 pm with no food or water. Some staff were still caring even though they were stretched.
When all my observations came back clear, I was once again discharged. I thought they had to be missing something. From February to April 2022, I was in and out of hospital often.
My headaches were intense and I often felt drunk. The medication I was taking each night helped a little but left me drowsy and out of it. I began on 10 mg, it is now up to 160 mg. I was given a CAT scan which showed swelling on the left side of my brain. They told me I had a tumour and called my husband to inform him. I was left in that room for three hours, alone and scared by this devastating news. I couldn’t even communicate due to my impaired speech, so one nurse drew a diagram of where the tumour was and how they would operate on it, I truly thought I was going to die.
They performed another MRI which showed I did not have a brain tumour at all, only swelling. I had gone from planning my funeral to being discharged in a small space of time.
I was so incredibly relieved that I said to myself “anything that happens now I’ll take on the chin”. I tried to live a normal life as much as I could, spending time with my children and forcing myself to go out.
One time we went on a camping trip but it was too much and when we left I had to go straight to hospital. If I pushed myself I would end up back at square one.
In April I was put on a high dose of steroids. The steroids made me gain three stone in weight and the migraine tablet left me feeling away with the fairies.
My quality of life is shot to pieces.
My heart rate is always high, normal tasks leave me out of breath. I have extreme sensitivity to sound and light. If I hear my neighbour’s car come home at night, it sends my heart rate through the roof and I struggle to get back to sleep for hours.
My hearing is also affected by on-and-off tinnitus and vertigo. The injury has also gone into my arms and hands. My hands get stuck in fists, my two end fingers get stuck together, and my wrists feel like they are broken and can’t put pressure on them. I can’t even push myself up off the chair or lift a kettle when it’s bad.
I get muscle twitches all over and visible tremors all day long in different places. My shoulder blades, limbs and thighs. I shudder a lot and my calves cramp up so I have to walk on tiptoes.
I have a walking stick as an aid, I’ve got 40 metres max in me and then I’m done. My left leg flicks out to the left and my knees buckle, both legs cramp and seize up. I don’t want to be stuck indoors, so we are looking at a mobility scooter to enable me to go out with my kids.
If my legs start to feel better then the migraines intensify and if my migraines ease up, my legs get worse. There is no winning but I would take the migraines over being unable to walk anyway.
I’ve had twelve BP attacks to date and suffered migraines every day for a year. The doctor gave me an emergency nose pump spray which I have to keep with me at all times.
I had to change the children’s school as I could no longer drive far. It was only 15 minutes away, but we moved them to a school just down the road from our house as I was housebound.
My experience in hospital has been varied, some doctors and nurses believe me and others shun me. During one visit I underwent a conduction test (the electric currents sent me into a seizure). A nurse came in, shut the door and said “ I know exactly what’s wrong with you. I think it’s vaccine related.” She wanted to make a case as she’s seen so many young people with the same symptoms but she was afraid to lose her job.
On my third stay in hospital, after an attack on Halloween night whilst trick or treating with my children, I received a written diagnosis of post vaccination plexopathy, migraines, brisk reflexes secondary to severe stenosis and FND. Although, we feel FND is a blanket term diagnosis that is not specific.
I had three doctors ask when I had my vaccines and when did this all start? They at least attempted to make the connection when another doctor came in and said I should go home because there was nothing wrong with me. The other doctors defended me saying “she’s not going anywhere, there is clearly something wrong”. It’s so crazy that medical professionals are arguing with each other over this.
My neurologist has been fantastic, he even cancelled some tests that would have caused me more harm as he said my nervous system couldn’t handle it. I appreciated that kind of protection. He was the one who referred me to the FND clinic.
My local surgery has also been great, I was there in February when I had a fit and they called an ambulance.
The paramedics told me I was having another panic attack. On hearing this, my doctor at the surgery wrote letters to the hospital stating that I need help. I’ve never had a panic attack in my life!
In the meantime, I have started alternative therapies. I see a homeopathic doctor in London which my husband drives me to. I’m on lots of vitamins and follow a no-dairy, no-sugar diet.
Over Christmas 2022, I had some sugar and noticed my legs got worse.
The doctor said something is attacking my nervous system, but because I’m in pain, it shows my body is working. I also do red light therapy and hydrotherapy.
I am still waiting (12 weeks) to see an NHS physiotherapist. Each day is different, I have to take my walking stick everywhere in case of leg cramps. I can drive a little now but cannot go for a walk or to the park with my children. I have a stutter at times and still can’t carry heavy items such as dish plates. Stress is a huge trigger for relapsing and worsens my symptoms.
I’m hoping for more answers from my neurologist, but I’m told the referral could take years. It seems these injuries are way more common than we are told. You think the effect would happen instantly but it can take weeks, months even a year.
To anyone else suffering vaccine injury, don’t lose your spark! Continue to be positive and don’t let it beat you. Take the rough days with the good and just crack on.
I’d like to know if anyone else is having the same reaction as I am and to connect over how we can heal from this.