I’m 36 years old and I work full time running my own business. My work involves a lot of running around and working 10 to 12 hour days. It’s quite physical, so my fitness is great and my health has been very good for a number of years. Prior to having the vaccination I had not been sick with anything in the last five years, not even a cold or a flu.
I was really frightened of getting the vaccine. However, my clients are all elderly and at the time, my mum was in hospital, so I would not have been able to visit her or attend my son’s sports activities unless I rolled up my sleeve. I got vaccinated on the 17th September 2021 in my left arm. Afterwards I felt perfectly fine other than for a little headache. Life continued as normal and I went and got the second vaccination on the 15th October 2021 in the same arm. Once again, I didn’t get any reactions at all. Nothing.
Eight weeks later to the day, I woke up and it was like someone had turned on a switch. The back of my head, my ears, my throat, my face, my tongue, my teeth, my gums and my eyes were burning. Imagine the cool burn after gargling mouth wash or a bleach burn. That was what it felt like. I didn’t really make the connection it might have been due to the vaccine at this stage.
A few days later on the 4th of January, I noticed the pain wasn’t getting any better. It was getting worse and it was freaking me out, so I took my first trip to Emergency. On arrival I was able to get straight in. They did a chest X-ray, CT, gave me diazepam, Endone and an IV drip. They thought I was having an allergic reaction to something. The results of the tests came back clear so they discharged me a couple hours later with Endone.
Three days later on the 7th I returned to Emergency. The pain was becoming unbearable and the Endone wasn’t working. They told me they didn’t know what to do for me and referred me to a neurologist. I went home empty handed. On the 11th I returned again and they admitted me over night. I had to invoke Ryan’s rule to have a physician come to see to me because all they were going to do was leave me and give me Lyrica and Endone. The physician came and saw me after eight hours of waiting and he said he would organise for a neurologist to come and see me sooner. He upped the amitriptyline, Endone and Lyrica and I felt no relief at all. The next day they discharged me.
I went to see the neurologist on the 14th of January. He said I was fine and I didn’t have MS or Parkinson’s but he wanted to do a nerve conduction test. I travelled to Townsville on the 24th of January. He actually decreased my medication. He told me that I might have burning mouth syndrome and Scalp Dysesthesia and said, ‘I’m not sure.. we will see’. He also tested me to see if I was diabetic. I was not.
Days later I rang him back because the pain was not going away. He said he didn’t know what to do and referred me to one of his colleagues (another neurologist) who I’m still waiting see. I rang my mum’s immunologist in Brisbane and organised an urgent appointment with him for the 17th of February. Because of the floods I wasn’t able to get down until the 7th of March.
He admitted me to Greenslopes Hospital and they ran every blood test you can think of. I had an MRI of the spine and brain with contrast, I had a full body PET scan and I had an ultra sound of my breasts. I had another neurologist do another nerve conduction test. Because they found some lumps in my breast during the ultra sound they also did a needle aspiration on my breasts. I was then put on a ketamine infusion pump for six days. ketamine is also used as a horse tranquilliser…… They had me on the highest dose allowed which is 500mg and 150mg of clonidine, 150mg of Lyrica and 100mg amitriptyline all at the same time. None of it helped with the pain. I was having out of body experiences which were extremely terrifying. I couldn’t even walk because I was so drugged up.
They took me off the ketamine because it wasn’t working and all the doctors had said that they’d done all the tests they could but they didn’t know what the cause of my symptoms were. All they can do was manage the symptoms but nothing they were doing was working. I questioned every one of the specialists whether this had anything to do with the vaccine and the response from the immunologist was they couldn’t say yes and they couldn’t say no or ‘We will never know’. I said that I wasn’t going to get the booster and I was advised by them not to. My neurosurgeon said she didn’t know if it could be the vaccine but that her 12 year-old daughter had myocarditis and they weren’t letting their younger child get vaccinated for that reason.
My pain management doctor then organised for me to have a nerve block done in the back of my head, The next the day, they said that they would check me in a couple weeks to see if it worked and I was discharged from hospital on the 18th of March. It didn’t work. I can’t get an appointment in the pain management clinic here in Mackay for the next two months and I still haven’t had a follow-up on the nerve block. But I do have a follow-up for the 27th with a neurosurgeon to decide whether I’ll have lead stimulators put in the back my head and face. I think this means they pretty much are going to fry my nerves with an electronic current.
Currently I’m experiencing constant burning of my face and head. I have a metallic-like taste in my mouth and occasionally I get random burns over my body. The pain is unbearable most days and it’s been ongoing for three months. It’s cost me over $15,000 so far. I’ve recently had seven core biopsies which are extremely painful, because they found abnormal cells when I was in hospital. Today I decided to go and try acupuncture because I’m just out of options and I don’t know what else to do.