I was 25 and working casually as an optical assistant during the day and at a tavern some evenings when I got the vaccine. My partner and I, and our three dogs, had recently moved to the Northwest Coast of Tasmania. We run a family farm and we like to be outdoors, hiking, fishing, and kayaking. Physically, I was in the best condition of my life. We were healthy, happy and looking forward to building a house together.
I used to work at a company that was involved in vaccine manufacturing, so I had a fairly good understanding of the basic technology and processes. Because of this background knowledge I felt that the new technology that was being used for Pfizer and Moderna was too new and under-tested. But I thought that the AstraZeneca technology would be a safer bet, as at least it was more traditional.
I would rather not have had any of the vaccines, but the government mandated it for my work. I was enjoying my jobs, and financially we’d committed to building a house, so I complied to retain my income.
On 22 October 2021, I went to my local pharmacy in our farming community. I had made a booking to receive the AstraZeneca vaccine and when I arrived, I confirmed verbally that I was to receive AstraZeneca, and signed the consent form for AstraZeneca. The nurse proceeded with the vaccination in my right arm and I felt fine. I called in sick to work the following day due to fatigue, but I had been told to expect this, so I wasn’t concerned.
On 28 October, I downloaded my vaccine certificate to provide to my employer. I was surprised to read that I had been given the Moderna vaccine instead of the AstraZeneca vaccine. Thinking that my medical records might have been incorrectly entered, I called the pharmacy to see if they’d made a data entry error. The pharmacy staff admitted that the nurse had assumed that I was to receive Moderna due to my (relatively young) age. They had not read the booking or consent form. As mixing brands was not recommended, I had to receive Moderna for my second vaccination as well. I was annoyed because I had been very careful about selecting AstraZeneca. As I did not experience any negative side effects from the first Moderna vaccine, I got over it and booked my second vaccination.
On 30 November, I returned to the pharmacy to receive my second Moderna vaccination, in my left arm this time. I waited the standard 15 minutes and felt nothing out of the ordinary, so I went home. I felt the same fatigue as I had the previous time, and just rested, as I had a couple of days with no rostered shifts.
Over the next week, I experienced strange internal symptoms, including fluttering in my eardrums, severe pain in the left side of my abdomen near the ovaries, internal shivers, diaphragm and stomach pain, heart palpitations, and an intermittently collapsing trachea. All these symptoms increased with movement or exercise. At the same time I also had on-and-off faintness, nausea and headaches. The nausea was particularly amplified when I ate, as were the heart palpitations. I did not associate any of these symptoms with the Moderna vaccine. I just figured I must be run down from working two jobs. In response to these strange shifts in my body, I adapted my eating to more small meals per day, I resigned from my second job at the tavern, and I took a lot of bed rest.
By Christmas I had lost 16kg. I was very underweight. I put this down to not being able eat properly because of the nausea. Now that the shift in my health was clearly visible, my partner and work colleagues expressed concern. I was sent home from work a number times throughout January 2022 for being too unwell to continue my shift. I’m not one for going to the doctor, but because of the concern of those around me, I realised I should see a GP. About this time, I also started experiencing light shaking in my left hand, and intermittent numbness and tingling in both hands and feet. I also seemed to have difficulty modulating the volume of my voice.
I saw a GP on 1 February. I presented with all my symptoms, and she weighed me, confirming that I was extremely underweight. She organised blood tests, which all came back normal, except for a high red blood cell count. She advised that I had high blood pressure. She told me to get a blood pressure monitor, measure my blood pressure three times a day, and to go back in two weeks with my results.
I was sent home from work again on 10 February, so I booked another appointment with the GP for 8:20am on 11 February. My mum came with me this time, and during the appointment, all three of us observed an external tremor in my left hand, which continued non-stop from that point. It lasted a full two weeks, during which time it extended to my entire body. The GP was very concerned, and wondered aloud if I’d had a stroke, or if I had MS. She sent me for an ECG and an MRI of the brain, which I got on the same day. I came in to see the GP that afternoon to receive my test results. They both came back normal. She called a neurologist in Launceston for insight into my symptoms. He advised that she should prescribe me clonazepam to see if it would calm the tremor, and that if it had not calmed by the evening, I should go to the emergency department and request an EEG – another type of brain scan.
At 9:30pm that night, my mum took me to the emergency department. The tremors had not subsided. In fact, they had become more aggressive and had extended into both arms, my neck and my head, along with all the other symptoms I already had. I was triaged outside due to COVID restrictions. I asked for my mum to be allowed to accompany me inside. At first, they refused, saying, “Everyone who comes here thinks that they’re dying”. Shortly after, my legs gave way and I collapsed. My mum pressed very hard to accompany me and was finally allowed through. During all of this, my partner was waiting in the carpark. He had opted not to get the vaccine, and so was not allowed into the hospital.
I was in hospital for around four hours, during which they conducted routine observational tests. I felt quite stressed during this visit, because the attitude of the doctors was very condescending and disbelieving. They asked if I was being abused at home and if I was drug seeking to cope with the abuse. I was confused and distressed that they weren’t taking my testimony seriously. They were trying to find some other explanation for my symptoms, rather than accepting that what I was saying was real. I had not mentioned the Moderna vaccine at all during this visit, as it hadn’t fully dawned on me yet that my symptoms might be related to the vaccine. My tests came back normal. Before I left, they called an after-hours neurologist in Hobart, but all they came back with was, “We don’t know what’s wrong”, and a prescription for diazepam. The doctors told me to go home and hug a pillow.
The discharge notes state suspected anxiety disorder and psychogenic tremor. It was only at this point that it fully occurred to me that this could be an adverse reaction to the Moderna vaccine. It was the only thing I could think of that had changed, and the timing lined up. My mum and my partner agreed. I barely slept with all the tremoring that night, but eventually I passed out. The following day, 12 February, I couldn’t even walk because of the tremoring, so my family took me back to the emergency department at 12:45pm. This time, I was seen by a doctor who was professional and kind. He ran a bunch of tests and noted that the tremor was worsening. He spoke to the Hobart neurologist, who requested a video of my tremors. Based on the video, the neurologist suggested that I may have functional neurological disorder (FND).
I was referred to urgently, within the week, see this neurologist for a formal appointment, with a view to getting an EEG. Unfortunately, the hospital didn’t process the referral properly, so I had to see my GP again to have the referral reissued. The neurology clinic was then supposed to call within a week to make an appointment. I’ve not heard from them since. I have called multiple times since February, but they always say that they can’t give me an appointment yet, and that when my place in the queue comes up, they will call me.
My GP also sent a referral to the Launceston neurologist, who I eventually got in to see several months later. It was a 15-minute appointment. He observed my tremors and gave me an official diagnosis of FND. He suggested that I see a physiotherapist and a psychologist to manage the FND. He also recommended getting further auto-immune testing done, which I can’t afford to pursue yet. During my appointment, the neurologist said that he thought it was likely that the FND was linked to the vaccine. I have been trying to get the notes to see if he wrote it down but have not been able to access them yet.
My pop passed on 14 February, so we went to Launceston on 17 February to assist with preparations for his funeral. The following day, my violent tremors woke me up in a shock, and I discovered that I had urinated in my bed. As the day went on, my bladder control completely gave way, and the tremors persisted. I had pins and needles from my neck down. I was struggling to feel sensation. I had numbness and was struggling to speak. We called an ambulance, and I was taken to the emergency department again. On the way to the hospital, the paramedics commented that they had seen similar symptoms in a 16-year-old girl from Launceston in an adverse reaction to the vaccine, and they wondered if that was what I was experiencing too.
At the hospital, I had all the usual tests. The paramedics seemed very concerned. The doctor did a thorough examination. She said that she was unsure of how to proceed and asked another doctor to join the consultation process. The second doctor was appallingly rude. He interrupted and spoke over the top of me constantly. He told me that I had refused to take medication prescribed at one of my previous emergency visits. This was not true. I don’t know where he got that idea from. He wouldn’t allow me to finish my sentence when I tried to ask. He then raised his voice, saying, “You have used an ambulance for a non-emergency. I have patients here that I need to attend to who are actually suffering, so you need to go home.” The first doctor was silent. I asserted that I didn’t want to be spoken to in this way, that I believed that I was suffering, and that this was an emergency. He threatened to call the police to expel us from the hospital, so we moved to the waiting area. My mum then placed a care call, which is a protocol that allows people to call a helpline if they feel that they are not receiving adequate care. However, the person on the line informed us that the care calls are no longer in use in the emergency department, due to COVID protocols. We then called the Deputy Mayor of Launceston, who called the hospital. I was not admitted, but I was given multiple referrals, including a spinal MRI, a physiotherapist and a gynaecologist.
Since the end of February, I have seen all the above-mentioned specialists. Some are covered by Medicare, but some are not. Ironically, the reason I am covered by Medicare for some appointments is that I have been declared medically unfit for work or study, and so am now on benefits. I see a physiotherapist every two to six weeks and was seeing a psychologist regularly until my benefits for psychology ran out. My spinal MRI came back normal. The gynaecologist is still investigating the ongoing issues with my bladder, ovaries and kidneys. I called the Hobart neurologist numerous times to pursue the EEG, but have since given up.
So far, four different health professionals, the neurologist, physiotherapist, gynaecologist and my GP, have confirmed that in their professional opinion, my symptoms have been caused by the Moderna vaccine. I can’t apply for compensation, because FND is not a condition that qualifies in the national scheme. There is probably more that I could do in following up tests, diagnoses and treatments, but the truth is that I am traumatised from the past 12 months and I don’t have the mental and emotional capacity to keep pushing. I don’t trust doctors anymore, and I don’t know how to get help. I’m scared to try alternative modalities and treatments, as I’m worried about wasting money and that I might inadvertently worsen my symptoms. Stress exacerbates the FND, so I’m trying to minimise stress by just focusing on placing one foot in front of the other.
Because I can’t work, my partner has had to take a full-time job as well as running the farm, and we had to sell our block of land that we were going to build on. There are people in my life who even now don’t believe that my symptoms could possibly be related to the vaccine, which makes me feel demoralised. This has caused relationship breakdowns with family and friends.
I have signed up for a medical marijuana trial, which I am hoping will offer me some relief. When I can gather the energy and finances, I will pursue the recommended autoimmune testing. I wish that I had not been pressured into taking the vaccine, and that we had not been told that it was safe and effective. In my experience, it was not safe at all. Because of that single “safe and effective” statement, it has been hard to get medical professionals to take me and my symptoms seriously.