I’m 22 years of age. I am a very active person who loves the ocean and outdoors, I’m always travelling on various adventures. From December 2021, my quality of life has been forcefully altered and changes with each coming day.
Like many of the other states across Australia, the work mandates started to come into effect at the end of 2021. The job I was working at decided to enforce the mandate, and regretfully I went along with it so as not to lose my job. I’d always said I didn’t want to get it – but I felt like I had no choice. My partner was not so keen on me getting it, but supported the decision.
I had the first vaccine on the 29th of December, 2021. Two days after the vaccine, I noticed my hands beginning to tremble. It came on slowly and over time became more apparent. Every time I picked up anything my hands would shake, and it quickly became noticed by people at work, as well as by my partner. Eating any food from a knife and fork had become frustrating.
The time came for the second vaccine on the 26th January, 2022. Again, I only did this to keep my job. I was asked by the nurse if I’d had any adverse reactions, so I showed her my hand tremors and told her what was happening to me. She asked if I wanted to go ahead with it so I said “well, I have no choice”. She awkwardly laughed and said “yeah, that’s true.” She then proceeded to give me the vaccine.
I visited a doctor in regards to my hands shaking, however, my concerns were dismissed and it was labelled anxiety.
I didn’t feel good at all after the second. Headaches, body aches and fatigue plagued my body for 2-3 days after receiving it, along with my shakes increasingly becoming worse. My partner began to notice that while I was sleeping my whole body would be shaking uncontrollably all night. I hadn’t noticed as I’m a deep sleeper.
This continued for about three weeks, until I began to notice. When I would wake in the morning I could feel my arms vibrating, shaking, and no matter how hard I tried, I couldn’t stop them. This would continue for about 2-3 minutes, then go away. After this, only my hands would shake throughout the rest of the day. I also noticed, if I exercised at all, the hand tremors would become worse.
On March 15th, I was relaxing at home and noticed that my leg had started spasming. My partner has always been on high alert and cautious about what was happening to me so she recorded it on my phone. This lasted for a few minutes and then stopped. I kind of forgot about it and put it to the back of my mind.
I was at a family get-together on Saturday, 26th of March in the late afternoon, and felt my whole body start to convulse. Being around so many people, I couldn’t really comprehend what was happening, so I tried to hide it. I wanted to avoid the attention on me as this was still something so new and I was still in denial. I notified my sister who was sitting beside me. It went away shortly after, but we had a discussion about me seeing another doctor who could actually help me.
The next day is when it really hit. On Sunday March 27th at 4am, I woke up to my whole body convulsing uncontrollably. It would slow down and speed up. I was so tired, so I attempted to get a little more sleep. I eventually woke up my partner. She was immediately concerned and said that we should go to hospital.
Initially I didn’t want to make a fuss, (I actually think I was in still in denial about the seriousness of what was happening to me and was trying to brush it off) so I got out of bed and attempted to eat some breakfast. Doing this was nearly impossible, as I could hardly keep the food on my fork due to my whole body shaking. I couldn’t speak, I stuttered my words, and walking became an impossible task. This then became extremely scary for me and my family. A fit and healthy young man now convulsing in such a way that terrified everyone.
We then drove to the ER, where due to Covid rules no support person was able to enter with me. I was taken in, in a wheelchair due to being unable to walk. It then suddenly became a struggle for me to breathe so the resuscitation team was called, and I was rushed out of the waiting room. They took me to a bed and left me there for some time.
The nurse gave me some sort of relaxant medication which helped the body convulsions to slow down, however they then morphed into isolated seizures. When this happened, nurses had to pry open my jaw to open my airways. I’m not sure how many seizures I had there, as it is now a bit of a blur, but if I had to put a number on it, it would be over twenty.
I had blood tests, along with an ECG, all of which came back clear. The hospital’s neurologist was contacted, but because I was conscious during the seizures, he told me that they were not ‘real’ and there was nothing he could do to help.
Three other doctors came and advised that they had no idea what was happening to me and concluded that the seizures were from ‘anxiety’, telling me that all this was in my head and that I am the one causing these episodes to happen on my own accord. They recommended cognitive behavioural therapy and then discharged me after around six hours.
I felt so defeated and alone. I didn’t know what to do, I’d just had three doctors say it’s all in my head. But why would I make this stuff up?
Once back at home, I suffered ten or more frightening seizures, along with being unable to breathe and talk at times. My family wanted me to go back to the hospital but I just felt as though my concerns were dismissed and had been made to feel as if I were making this up. I knew this was not anxiety, and I just felt more comfortable being at home in a safe space with my family. I was unable to sleep at all which left me exhausted.
The next day my sister booked me into her GP to see if we could get some answers and some desperately needed help. Thankfully he listened to my story and what was happening to me. We voiced our concerns that all of this started after my first vaccine and then had progressively gotten worse, especially after the second. The doctor agreed that the vaccine had caused my seizures.
He advised that I was having ‘absence seizures’ and diagnosed me with this, along with epilepsy. He did a new full blood analysis, but these blood results all came back clear, just low in iron. He also referred me to have an MRI scan and prescribed me anti-seizure medication – however this takes up to six weeks to begin to work. Luckily after calling various places, I managed to get an appointment within the next few days. So, I went for the MRI and then back to my GP to discuss the results.
The MRI thankfully came back with no obvious abnormalities, but has left us with unanswered questions. So the GP then referred me to a neurologist for further investigation. I am currently waiting for my appointment in the private system, as public is a two-year wait.
I am hoping to get answers but it is just a waiting game for now. I am still experiencing around 7-12 debilitating seizures per day (not including the ones I don’t know about when I am sleeping), leaving me unable to breathe properly. I do not get a full night’s sleep, due to the seizures stopping me from relaxing. This leaves me fatigued and needing to nap during the day. At times I struggle to put a sentence together, and stutter my words.
My partner or a family member needs to be with me at all times, as a precaution in case an accident or more severe longer lasting seizure were to happen. The medication is currently not making much of a difference, but I am hoping this will change the longer I continue to take it.
I am currently unable to drive and work, and have had to resign from my job as it was labour intensive and would have been a risk to myself and others. I am not entitled to any sick-pay or anything like that which leaves me, like so many, in a difficult situation. I am also not able to get any government assistance as seizures and epilepsy are not recognised as an injury from the vaccine.
My GP is unfortunately refusing to provide a medical exemption for the mandated booster (although I will definitely not have it). But this means that if or when I get better, I will be unable to go back to my job.
In light of all of this craziness, I am doing my best to stay positive. I am taking this time to heal, to connect with friends and family, and to really focus on my health and doing all I can to get better.
I know this is a similar situation and experience to so many, My partner is searching high and low for any answers or alternative treatments that may help. If you read this and you know of anything, please shoot me a DM.
Thank you so much for taking the time to read my story, I am appreciative beyond words of any support.