Prior to the COVID-19 vaccine, I was a very fit 65-year-old, working full time and managing a very challenging family business after retiring from nursing at 50 years of age. I was in community nursing and managed large nursing homes predominantly. I worked out daily in my home gym and enjoyed daily walks with my dogs. I had a large garden and enjoyed tending to it during my spare time. I spent time caring for my grandchildren and socialising – I was loving life.
In March 2020, news about COVID-19 was serious. We were worried about the future of our business and the impact of the restrictions. Media reports at the time were relentlessly pushing the vaccine, the benefits of having it, and particularly the fact that those who were vaccinated may be less likely to be affected by the harsh restrictions. As a business owner, I was worried about the future, it seemed that we had no option but to get the vaccine. I was sceptical, but the desire to save our business from failure was the driver to do it. I advocated that none of the grandchildren have the COVID vaccine.
I received my first AstraZeneca vaccine on the 20th of May, 2021 in my right arm. Within hours of receiving the vaccine, I developed a fever, chills, body aches, and went straight to bed when I returned home from work. I was unwell for a couple of days and suffered fatigue for some time.
I received the second AstraZeneca vaccine on the 12th of August, also in my right arm. I did not have an immediate reaction after the second vaccine. However, very soon after, I developed a heavy sensation behind my right ear. It was annoying and the level of discomfort was real. I kept rubbing the area behind my ear, using heat to soothe. I now know this was the result of inflammation causing the nerve to become compressed, and as the degree of compression worsened, so did the level of discomfort. This discomfort was relentless.
On Friday the 3rd of September my husband and I boarded the Proud Mary for two nights on the river Murray. We were thoroughly enjoying our time. It was quiet, tranquil and very relaxing. On Sunday, when we woke, I told my husband to go up for breakfast first, and I would come up for a cup of tea soon after. When I cleaned my teeth and went to spit, it felt a little odd, but I took no notice. I got dressed, put on my make-up, went upstairs and went to have a mouthful of tea and it spilled down the front of me.
I immediately thought I may be having a stroke. I calmly removed myself and went back to the room. As a retired registered nurse, I put myself through the stroke assessment. In my mind at that point, I diagnosed Bell’s Palsy. As there were no facial changes, I didn’t say anything as I thought we would just go straight to the Murray Bridge Hospital as soon as we got off the boat. About lunchtime, my husband noticed that my face was different and I assured him everything was okay. I told him I had Bell’s Palsy and we would go to the Murray Bridge Hospital once we are off the boat. I also said to him I thought this was an adverse reaction to the vaccine.
We attended the accident and emergency department at the Murray Bridge Hospital. I was seen by a doctor from the clinic and had a virtual consult, and a video link assessment with a stroke consultant who confirmed Bell’s Palsy. I did question him about the link between the vaccine and Bell’s Palsy. He told me, “There have been four cases of Bell’s Palsy identified, however there is no clinical evidence to support the cause was the vaccine”. I closed by saying I totally disagreed. I was prescribed a short-term course of prednisolone 75mg over 35 days, antiviral famciclovir 250mg, and eye care treatment as I was not blinking and did not have right eye closure. I was advised to follow up with my GP.
My symptoms continued to develop over the next two days. When I went to see my GP, I found him quite dismissive and not interested in what I had to say. He told me I didn’t need to do anything and it would get better over time. I had altered spatial awareness, drooling, altered speech, right eye discomfort, pain in the right side of my face, toothache, constant headaches and tiredness. I was unable to function and felt terrible. My GP offered no support at all, and in fact at times was quite rude.
On the 20th of September, I lodged a vaccine reaction report form to SA Health. On the 12th of November, I sent a follow up report. When I told my GP that I reported Bell’s Palsy as an adverse reaction, he asked me, “Why would you do that?” I replied, “Because all of you medicos dismissed my claim and I got my back up and reported it myself.”
Initially, there was no GP support. I felt they were being quite dismissive and rude. I was told not to do anything and that I would get better in three months. They told me, “Don’t waste your money, you will get better in time!” I had complete right-side paralysis and I’d shown no sign of improvement at all despite twice weekly acupuncture for three months.
In December, I was still sick, had severe facial pain, tinnitus, altered spatial awareness and generally felt unwell. I had to reduce my hours of work in order to cope. When in public, I hid behind the mask and dark glasses. I was very self-conscious.
I saw a neuro physio who suggested I needed to be referred to an ENT surgeon. I went to the GP in December and requested a referral. He didn’t even ask me to remove my mask and just about threw the referral at me and charged $75! I was furious and thought, “That’s it, I’m never seeing you again”.
I went to the appointment with the ENT surgeon. Om my God, how nice it was to have someone listen and show empathy! She requested a hearing test, MRI and by exclusion confirmed that I had Stage 5 Bell’s Palsy. She referred me to a specialist in facial palsy at a plastic surgery clinic, and I had the consultation soon after. I finally had established a team that I felt had my best interest at heart.
On the 21st of December, I had a consultation with my GP again. He apologised for dismissing my claim and stated that he had recently heard that Bell’s Palsy had been identified as an adverse reaction. He has put this in writing. I now have a hugely supportive GP who agrees the vaccine caused my Bell’s Palsy, as I was fit and healthy at the time.
The past 15 months
Because Bell’s Palsy is not life threatening, this illness is dismissed by health professionals. The past 15 months have been gruelling and I have aged drastically. I have now stepped down as Director of our family business and transferred my shares to my son. I’ve now retired. It was never my intention to retire, thinking I could modify my work days and hours to suit as I aged.
I have constant tightness of the right side of my face, especially around my eye which feels like the muscles are contracting. I have one eyebrow higher than the other which I am very conscious about. For someone who loved getting dressed up and wearing makeup, I do none of that now because my face is not symmetrical and I feel make up makes me look worse. Some days I can’t keep food in my mouth and have to drink with a straw. The facial pain is not such an issue any more, but I do get occasional facial pain and I am always tired. Some days are better than others.
On a typical day, I wake up and do my facial massage and muscle stretching before I get out of bed. This really helps especially around my eye, however the feeling of “normality” is short lived and the tightness comes back.
I have therapy once per week. The neuro physio has been an excellent resource, particularly with my synkinesis or unwanted movements, and has been teaching me to retrain my brain. On alternate weeks to my neuro physio appointments, I have craniosacral massage and find this to be the most beneficial of all the allied health services. I now also have regular botox on the left side of my face to stop the pulling. In the past 15 months, I have spent in excess of $10,000 and unfortunately for me, a lot of my costs are going to be lifelong.
When I get tired, my face droops. I don’t get complete closure of my eye. The dribbling is worse and my speech is slurred. My husband is deaf and we have always managed as he was able to lip read, but unfortunately that is no longer possible. Some days it gets really frustrating.
Visually, because my face looks closer to normal than it did two months ago, people think I am better. Even though I “look” better, it’s a daily struggle with the ongoing physical symptoms people don’t see – the ear ringing, headaches, facial tightness, facial pain, tightness around my eye, drooping eye, twitching, and the eye closure when eating, drinking, talking, smiling and yawning. Unfortunately, unless someone has had Bell’s Palsy, people just have no idea about the silent suffering experienced.
I have recently joined the ‘Bell’s Palsy Adverse Reaction Group’ on Facebook. The admins are Australian based and personally I have found the group really helpful with lots of valuable resource information. This is a forum to share Bell’s Palsy experiences that have resulted from a vaccine.
It is important that we have a voice. As an individual, you can be dismissed – but as a collective, our voices count. If you, or anyone you know is suffering Bell’s Palsy as a result of the vaccine, I urge you to check this forum out.