I’m 36, I’m from Beirut and have lived in Australia a few years now. Before October 2021, I was a happy and productive go-with-the flow graphic designer with my own business. I was fit and healthy, going to the gym every day, eating keto, enjoyed playing basketball, travelling on the weekends and catching up with friends. I’d not had any health issues before.
In October 2021 I’d enrolled in a TAFE cyber security course which required I be double vaccinated to attend classes onsite. Doing cyber security was my dream, so two days later I went to get the vaccine. At the time, the TV said our hospitals and ambulances were overwhelmed, so I thought that getting vaccine was the best thing to do to protect my friends and myself, and do my bit for the community. I messaged two friends that day to ask whether they’d had any side effects as I was a little hesitant about putting something in my body. Both said they just had the sore arm and nothing else. Their responses gave me confidence that it would be okay.
When I had the Pfizer vaccine on Friday 29th October 2021, the nurse had said to me, “Come on over and join the club”. I had no reaction on the day and messaged my friends to say that I didn’t have a sore arm or anything. But on Sunday 31st October 2021, at about midday, I was lying down and my heart rate was going between 160-180 bpm at rest and I nearly fainted.
I jumped in fright thinking, “Am I going to die?!” I felt like it was a near death experience, like I was disconnecting from life. After calling an ambulance, the paramedics came but my apartment is hard to find. I could see them driving up and down the street and chased them with panic. When they did see me they said, “Hang on a sec, do you have COVID”. I told them “No, I took the vaccine and there’s something wrong with my heart”. They didn’t listen to my symptoms, but asked me other questions. They tried to help me, but they didn’t know what they were dealing with as I was in panic mode. I had an ECG in the ambulance, and they gave me Aspirin. When I got to the hospital I was panicking, losing consciousness and awareness and knew something was not right with my brain. I also couldn’t stand too much light and my heart was in pain. They gave me Valium, told me I had anxiety, and to go home. I felt the Valium suppressing my symptoms, but they were still lingering in the background. I was shaking too.
I went home to sleep but had the most inhumane night of my life. I had dizziness, vertigo, head pressure, I felt a disconnection from my brain to my body, I was hallucinating, having full body spasms, and felt electrical shocks through my spinal cord to my brain, I felt like all the cells in my body were screaming and sound-like radiation waves going through my body from head to feet, cold and hot. I can only describe it as like a sci-fi movie; like it was inside my nerves. It was excruciating! I was going into convulsions. It felt like dying would have been a simple upgrade from what this was. It lasted about 20 minutes. Something changed in my body that night where my eye shifted. My pupil moved off centre, and upwards slightly and my upper lip shrunk. I didn’t realise this until later as I’d lost awareness at the time, but I felt them happen on this night.
The next day, 1st November), I called the ambulance again, I’d lost light touch sensation in my body, I’d lost my short and long term memory, I had chest pain and was shaky and I’d lost awareness – it was like I had dementia in the background. I could talk, but my speech was slurred, I couldn’t walk and the electric shock/nerve/brain thing was happening again. My brain, heart and nerves all had issues at the same time. They took me to the hospital and had put me in a wheelchair as it was like I was paralysed, I was crying at the time. I felt like something my body depends on had been taken away from my nervous system, and everything had to be manual. I was so sensitive to noise that if someone said hello, I went into an epileptic episode – like my brain couldn’t cope with noise or process information. They gave me 4 Valium to calm me down as I had gone into a partial seizure, then they sent me home again.
The next night (2nd November), I experienced the same again but more mild, and took myself to the hospital again. They did bloods but nothing else. They told me I was severely anxious about my nervous system (I knew I had a neurological issue) and that I have anxiety and depression, and that I needed to get the second . He told me I needed to see a GP, referred me to a psychologist and sent me home with a Diazepam prescription.
Two days later, I was starting to have one of these episodes again. I rang the ambulance and mentioned my heart. One of the paramedics came up to check my heart, the results were normal. I was shaking at the time. He asked me what I wanted to do and said I wanted to go to the hospital to be checked out. The 2nd paramedic waiting down the bottom of the lift said that I was shaking because I was cold (I was wearing shorts). I was crying and telling them I was not myself – they weren’t believing me. When I got to the hospital, I was told that because I didn’t follow through with going to a GP and Psychologist they were giving me a ‘Failed to comply’. I hadn’t gone to a psychologist because this was physical symptoms, not mental symptoms. Because of this, they wouldn’t help me. My GP had never heard of a ‘Failed to comply’. No-one I spoke to knows how it works or what it means.
I went to a GP close to my place a couple of days later and told him about my situation, what has happened and that I have an issue with my brain and heart. He told me there was nothing wrong with me, that I was stressed and needed to relax. I was furious! I went back again to him a second time, he wrote a referral to a Neurologist, but wrote “He thinks he’s going to have a stroke” and “He thinks that there’s something wrong with his nervous system, and also with his heart”. I couldn’t really string many words together at that point and had to try and book an appointment and would go into an epileptic seizure over anything – my brain couldn’t handle information. I could barely do any movement without feeling like that. When trying to call and make the appointments, I was told they are overly booked and they would hang up. I felt it was because my speech was slow and I couldn’t pronounce my words correctly, so I didn’t end up getting an appointment at this time. I crawled into the kitchen not knowing where I was at some point, like I was lost in time and space. When I did walk, I couldn’t walk straight and would walk to the left or the right. I would have looked like I was intoxicated. I looked physically ok, but I couldn’t connect – like I’d had a traumatic brain injury. I couldn’t recognise my friends, I couldn’t process information.
14 days after the first , something attacked my left brain. I felt I didn’t want to live; I even called my mum to tell her I was going to take my own life. I had disassociation and depersonalisation and more, all at once.
I was desperate and started looking on the computer and found a GP that does ketogenic diet, I’d thought maybe I’m having a reaction from the keto diet and maybe he can explain what’s happening to me. He told me he knew these symptoms as he had seen them in other patients and offered me a prescription for epileptic drugs. I had a panic attack then and there. I couldn’t look at him as he said this. I said no – I was healthy, I was not epileptic – There was something not right in my body and I’m not taking them, because I don’t have epilepsy. I ended up seeing this particular GP 8 times. I can’t remember how it happened, but this GP was reporting my symptoms as side effects from the to the ‘1mmun1s@tion Centre’ (SAEFVIC) and I went twice a week to report my symptoms. I was having nerve pain, and a feeling of acid being poured from top of skull to sole of my feet, my chin was numb, Dizziness, vertigo, brain zaps, also my ankles aged dramatically and I had a blood clot type thing on my calf. I had (and still have) twitching of my toes on my right foot (this is called fasciculation).
They offered me the for my second – I looked at the doctor and said “I’m ready to kill myself”, and he realised how serious it was and gave me an exemption for the second . I was having brain zaps at night too but he didn’t provide me any referrals to a neurologist and didn’t prescribe me anything. He thought I had anxiety and was faking it (I think because he doesn’t know how to treat these symptoms so he put everything down to Anxiety) He gave me a referral to a psychologist who I saw online on 19th November, but it wasn’t helpful, I needed to deal with the physical symptoms.
On the 21st November, I caught an uber to the hospital because of heart issues again. This time they found a ‘T wave inversion’ in the ECG results. The previous times I’d been they’d not checked out my brain and heart (any of my symptoms I was telling them about) as they had written me off with anxiety straight away, they referred me to a Cardiologist and I had a stress Echocardiogram, which didn’t find anything significant.
At that time I couldn’t even eat with a spoon. I couldn’t visualise where my mouth was and missed my mouth completely. At that time I felt cornered and like everything was against me so I called Lifeline because I didn’t know what to do – there was no way out and the doctor wouldn’t refer me to a specialist for further investigation.
The person on the call just suggested to ‘find another GP’ – When I hung up I thought oh my gosh, that was so simple! My brain couldn’t even find a simple solution.
In February I found a new doctor who gave me melatonin to sleep – 1mg for 60 days. This was the first medication I felt slightly better on. I then found a support group online for side effects, this was the first time I found that other people were experiencing them too. Somebody posted about MSM powder, so I tried it and found it helped me with my walking.
In March, I’d had 4-5 months of suffering, and still hadn’t had my neurological symptoms investigated so I ended up telling the doctor that I fell down the stairs (because telling them what had been happening wasn’t working) and needed an MRI. I had the MRI the same day and the result on the same day and saw a neurologist. I had been prioritised because I presented as a dementia/Alzheimer’s patient – this was the symptoms I had at the time – I felt like my memory was unwired, I had chronic fatigue, and looked exhausted. I told the neurologist the symptoms I had been experiencing (since the ) but said they happened since the fall. I said I had wanted to try LDN and CBD oil and he refused. He thought I had a migraine and was going to just prescribe me medication for that.
I asked for an EMG test (checks the speed of your nerves), which came back normal. What I’m experiencing is not normal – I have nerve pain and am losing memory.
I left it for a month and then was searching online watching Dr Mobeen and Dr John Campbell and had started to find people having the same reactions as me, from the . I have had just about every symptom that I’ve read about, as well as those I’ve mentioned, I had Tinnitus, not being able to tolerate heat, feeling of pins and needles, weak knees, lower back ache, stuffy nose, I was monitoring symptoms in my phone, eg. On day 43 since the , I had hot flushes, heavy legs, brain fog, shoulder pain, bladder infection, heart pain especially at night, finger tremors, no smell and taste. I then went manic and was buying different supplements everyday, I had all the supplements I was hearing about and was taking 100 pills a day – I was thinking, the more I had, the faster I’d get better and be able to go back to working. I had all the different B vitamins, zinc, folic acid etc. I did this for about 6 weeks. I also tried HBOT and had a panic attack inside the chamber (It was scary), then I found ‘i-screen’ where you can do blood tests without referral and get results through an app.
I did the MTHFR gene test and am ‘defect’ in 1 gene – meaning that my body cannot detox/methylate (at cellular level), my Homocysteine level was borderline abnormal, and I had an ANA test (autoimmune) which was negative.
I tried to get into another GP in the same clinic, as my normal GP was on leave. I couldn’t breathe with the mask and the GP told me to pull it up, she told me I’d had anxiety and depression and not to come back until I’d had my second and refused to see me because I’m not a fully person.
In June, a lady responded a YouTube video I commented on giving me the name of a GP in Melbourne – this was a game changer! He understood all of this stuff and he gave me LDN (low do$3 naltrexone), which helped a little, then he gave me CBD oil to try, CoQ10, and trialling a lot of different medication. He did hormone test, d-dimer and lots of other tests. He did a memory test on me and diagnosed me with significant memory loss, but due to ‘Long ’ as it is the only way he can issue the medication (I had an antibody test (via an injured scientist) 5-6 weeks ago, which confirmed I’ve never had ). I’ve tried a few medications and was getting better slowly. He referred me to a Neurologist stating I’d had ‘Autonomic Nervous system dysfunction’ and ‘Brain dysfunction’ since the .
I went to the neurologist 6 weeks ago, who confirmed she has other injured patients too. She offered me a lot and said she can book me in to do entire spinal cord MRI and EEG monitoring for 5 days at home. I told her about my theory about my monocytes and that I wanted to try pravastatin, which she gave me, and said if it doesn’t work she had something else in mind, she was amazing.
The pravastatin was working – all brain, heart and nerve symptoms started to improve for about a month. I knew if they didn’t work right away, they wouldn’t work. Some medications seem to work for a while and then stop working, but it would be at an improved level.
I couldn’t afford the $400 for EEG due to not working since last October and I was feeling better so I said no to that. She gave me Endep (amitriptyline) which is working and has started to put me into REM sleep. I’m seeing her again in 3 months’ time. I did have brain zaps for 2 hours non-stop, and a hallucinating sleep the first night I took it, but woke feeling better the next day, so I’ve continued on it.
Two weeks ago, I had an elevated heart rate 120-160 bpm resting and the doctor gave me a beta blocker (Metoprolol) which has been working. I couldn’t walk without elevated heart rate and ice-pick stabbing pain.
Yesterday morning I thought I was going to die; the pain came out of nowhere and I haven’t felt like that since last year. I know that stress elevates my symptoms. I have been referred to take lavender oil pills which I haven’t yet.
Back in the beginning, I could just THINK of getting up to walk, and would have a seizure. I was in awe of people doing multiple things at the same time as I couldn’t do that anymore; like someone talking on their phone, walking their dog and talking at the same time People are walking around walking around not feeling any pain. I remember telling the doctor that the noise of a leaf blowing along the ground would go through my brain and I’d have a seizure. I haven’t been normal since the day before I had the , like I’m disconnected from my brain and what’s going on around me. I don’t have a future and barely have a present. I feel like cardiac arrest is just around the corner. You don’t realise what you have until it’s gone.
With my situation and all the bills, tests, specialists, supplements, my family far away, and my suffering, dying seems easier. We didn’t sign up for this. We don’t get support or recognition. The side effects are nasty, but nastier is the way they’ve been dealing with them. They leave you open and wounded.