• Madeline Johnson

"My name is Liz, I’m 36 and this is my story. March 22nd, I received the first dose of Moderna vaccine; I was 35. I haven’t been the same since. The next day, less than 24 hours later I started experiencing sharp chest pains. At first, I didn’t think much of it; I was trying to ignore it thinking it would go away. It became harder and harder to ignore, as now it was a constant chest pain with sharp shooting pains. April 3rd, while sitting at the kitchen table, I felt my heart racing. My heart rate went up to 173 BPM, then my left arm went numb and I felt my left hand tingling. I felt like I couldn’t breathe. I thought I was having a heart attack. We called 911 and went to the ER. The doctor was asking me questions and I told her I’ve always been a healthy person, no issues. The only new thing I had done was get the vaccine. Then she looked at me and said, “you’re having a reaction to the vaccine. I do not recommend you getting the second dose.” She said my heart was fine, no heart attack and all tests came back clear. If I only knew that was just the beginning, things were going to get a lot worse.

Four days later, I followed up with my doctor and was told it was probably just acid reflux and anxiety. My doctor gave me medication for it, but she did not believe it was the vaccine. I know my body well; I knew something was very wrong. Later that evening, my symptoms happened all over again. This time, my face went numb and tingly and my heart shot up again. There I went again to the ER, this time I was admitted for 3 days. I was able to see a cardiologist and had an echocardiogram plus further testing. Everything came back clear. I was now experiencing anxiety attacks when I had never had anxiety before. After I was discharged, I was so weak, fatigued and in pain. I had to leave my home and move in with family to care for me as I couldn’t be alone; I was no longer independent.

I’m now on a heart medication to lower my heart rate, but no one could tell me why this was happening. My anxiety got so bad: I couldn’t sleep in darkness, I couldn’t have the door shut, the shutters had to be open. Anything would trigger an anxiety attack: loud noise, too much movement, too many people talking, taste, smell, etc. Everything was so overwhelming for me I couldn’t even do simple things like respond to a text message or make a call. I had never experienced anything like this before. I felt like this was not my body, I had no control over it. At this point, everyday brought a new symptom. I began to have major pain in my ovaries so I went to urgent care where they ran multiple tests and everything came back clear. Meanwhile, I was seeing a new cardiologist who agreed to do further testing and put me on a holter monitor. I could not understand what was happening to my body. Then even more new symptoms began: tremors, twitching, shaking, nervousness, muscle weakness, muscle spasms, burning sensation, sharp shooting pains, dizziness, lightheaded, near fainting, shortness of breath, chest tightness, elevated heart rate, insomnia, difficulty walking, with the right side of my body experiencing so much worse. My symptoms even included panic attacks, migraines, slurring my words, memory problems, major brain fog, extreme fatigue, vision problems, tinnitus, right ear pain, hair loss, hard time forming sentences or finding words, and couldn't concentrate. I thought I was dying. Some days were so bad my family had to spoon feed me, help me get dressed, and help me shower.

I went back to the ER, again many more tests and yet, nothing, no answers to why this was happening. At this point I was so discouraged I felt like I was not going to get help. There were some doctors asking me if I do drugs. They told me, “it’s all psychological, it’s all in your head, once you fix your mind you’ll feel better, it’s just anxiety, it’s just stress, you just have to be more positive.” It’s sad how they make you feel like you are crazy. I was then diagnosed with fibromyalgia and the doctor said it was just a coincidence this all was happening after the vaccine but the vaccine was not the cause.

After seeing a neuromuscular specialist, she confirmed I wasn’t the only one going through this. They had similar cases as mine who had their vaccine earlier Dec-Jan and still experiencing symptoms (this was in June when I was only three months in). I was now seeing a nurse practitioner for Psychiatry, all the anti-anxiety anti-depression medication made things much worse. I was now experiencing all the side effects from these medications. I went from taking zero medications to try this one or that one, maybe this one will help you. Nothing was working for me.

Then, one day, I began to get swelling in my face, throat, and entire right side of my body. My right leg was so swollen and the pain was extreme. I made my way back to the ER. They did an ultrasound to see if there was a blood clot and everything came back clear. Still no answers. After all my tests came back clear from cardiology, he suggested I have a tilt table test done. That’s when I was diagnosed with POTS. I have also seen a Rheumatologist and neurologist, but so far all tests have come back clear. Only my ANA was borderline positive. It is now September, five months later and I’m still experiencing symptoms. Unfortunately many doctors don’t know how to treat or help me. Every provider I see is different, they don’t know how long it will last, if it will go away, if it’ll get worse, or be something permanent. All they say is we don’t know what the vaccine can do, it's too new to know. It’s a very scary place to be. This experience has completely changed my life. I haven’t been able to work since April and I'm on the verge of losing my job. Looking for doctors/ specialists, setting up appointments, going to appointments, following up with doctors, and having extensive tests done has been a full time job. I’m also doing therapy to cope with everything I’m going through. Some days are “good days” and some are really bad days. Going from completely healthy and active to feeling homebound and sick with no energy has definitely been a challenge and hard to cope with. I’ve learned to take advantage of my good days and get out and get some fresh air even if my good days only last a few hours. My life has literally changed overnight."

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  • Madeline Johnson

Anonymous: "Hi I’m from New Zealand and received my first dose of Pfizer in April. After about 15 minutes in the waiting room I had a strange sensation of something dispersing through my body. I started to sweat particularly from my palms and started having palpitations and tachycardia. I felt dizzy and nauseous but was too scared to say anything and thought to myself this can’t be happening it’s all in your head. When the nurse said I was good to go she looked at me and said I looked incredibly pale I admitted I didn’t feel very well and they took me to a seperate room and monitored me for an hour. I felt a bit better and was good to go home after this and they said this is common side effect they were seeing and just to let them know at my next appointment to do the vaccine laying down. They suggested maybe I hadn’t eaten enough that day. I booked my second vaccine and was administered that laying down with extra monitoring. I was fine this time around no immediate reaction other than getting flu like symptoms that night which I had heard were normal. I was fine the next day up until exactly a week later I awoke in the middle of the night with my body shaking and heart pounding so hard in my chest. I could feel my arteries pounding and my head pounding it was so loud. I sat up and checked my watch - 147beats per minute. I though gosh that’s high for just being asleep. My resting heart rate is usually in the 50s. I took a few deep breaths and tried to stay calm thinking maybe I just got a fright in my sleep or something. Usually you can calm yourself down in that situation but I could feel my heart pounding faster and harder checking my watch again the bpm kept ticking up and up it was like I was out of control of my own body I couldn’t calm in down. I felt numb in my face and tingling/ pins and needles in my hands. I get like I was seeing stars. I thought surely I don’t need to ring an ambulance for a heart episode im a 28 year old fit healthy woman! I made my way upstairs and woke my flatmate who I thought would know what to do being a police officer she immediately called an ambulance after taking my pulse herself it was too fast to count! The ambulance arrived shortly after. They did an ecg and other than tachycardia it was normal. They asked me are you on any drugs, do you suffer from mental health issues, are you on your period, we’re you just having a nightmare. I immediately felt stupid and as if they didn’t believe me. My heart rate remained too high for them to leave yet they were making me feel asthough it was all in my head. I signed to say they could leave even though their policy’s say they can’t leave until heart rates drop below 100. I felt so embarrassed by the whole situation and decided maybe it was a nightmare or anxiety.

After the paramedics left, my whole body began shaking rhythmically and experienced frequent urination which was pretty much had no colour to it. The night after this happened I experienced sudden severe chest pain right underneath my left ribs and shoulder blade. I was too scared to call an ambulance again after last time I just decided if I die I die but I probably won’t die because they said it’s all in my head and these are symptoms of anxiety. The pain was so severe I didn’t sleep that night. The pain lasted a few weeks after this but slowly improved until it would just come and go and was quite a dull pain. I saw my doctor after this who referred me to a cardiologist but it took me about 7 weeks to get an appointment. During this time I developed shortness of breath. My doctor said she thought I was experiencing anxiety and showed me breathing exercises to do. This didn’t help and the shortness of breath got worse until 1 night I felt I couldn’t get hardly any air I was worried if I fell asleep that I’d stop breathing in my sleep. I went to after hours clinic who were baffled and had no idea what was going on as all my tests were normal. Ecg, bloods, X-ray. They sent me away with antibiotics and strong anti inflammatories suspecting what I had was pleurisy. I started to feel better and breathing improved after taking these meds I suspect it was the anti inflammatories because I had not signs of infection. After this I continued to have episodes of tachycardia and they mostly happen in my sleep not every night but on and off maybe 2-4 times a week. The Cardiologist I saw couldn’t figure out what is wrong as all my tests came back normal other than tachycardia in the holter monitor reports. He assured me this won’t be because of the vaccine and myocarditis is only showing up in young males which I am not. He suggested the cause may be panic attacks or supraventricular tachycardia which I feel is what they say people have when they can’t be bothered investigating further/ a fancy way of saying your heart goes fast for no reason. I’ve stopped advocating for myself because I’m sick of people not listening to me and I’ve got to the stage now when an episode occurs during the night, i just can’t be bothered getting up to do anything about it and think Oh well if I die in my sleep then I die there’s nothing I can really do about it. I just lay there and wait for it to pass trying to fall back asleep. It’s nice to know I’m not alone and reading other people’s stories makes me feel like maybe I should get another opinion and push for answers."

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  • Madeline Johnson

"Hi my name is Adam, I’m 22 and from the UK. I got my first Pfizer dose on 2nd of July but didn’t have any symptoms until the 18th of July. They started by me feeling really unwell and feeling that I was going to pass out from walking. Then, the next few days my arms and legs started to go numb and walking started to get more and more difficult. Also if I stayed sitting up or standing up for too long I would get really dizzy and feel like the room was moving. I was on holiday at the time and ended up calling 111 on two occasions and going to A&E both times. The first time as I was waiting to be seen it felt like I was having a stroke and I thought I was going to die. Both times I was in A&E I was told that everything was fine with me and that I was just anxious. My muscles were starting to shake involuntarily and the doctors just thought this was because I was anxious but I couldn’t control them. As the days progressed I also started to have episodes of my arms and legs shaking more violently for about 30 minutes at a time and then I would feel exhausted afterwards.

I managed to get in touch with Madeline and a couple other people who are going through similar experiences and they managed to give me the information I needed to seek help. I made an appointment with a neurologist and got an MRI scan done which came back perfectly healthy. The neurologist has told me he believes I have functional neurological disorder. I was perfectly healthy before the vaccine and had no health conditions. These last few weeks have been the scariest weeks of my life and also the most stressful. The most stressful thing about it is that no one would take me seriously, not even my own family. There were points when I genuinely felt I was going to die and people were telling me that I just had anxiety and to calm down. It is now just over 5 weeks past when my symptoms first started and they are definitely all still there but they feel like they have calmed down a bit. Hopefully I am one of the lucky ones who’s symptoms will slowly fade away in time. I am hoping that everyone going through this gets the help that they need and recovers fully back to their selves before the vaccine."

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