Today is day 15 since I had the vaccine, and the past two weeks have been some of the scariest weeks of my life — and believe me that’s saying something. I’ve already had a fair amount of scary shit in my lifetime, and I consider myself to be quite tough. In the past two weeks I’ve been taken to hospital three times, twice in an ambulance, and once in the middle of the night, and I’m still not functioning in daily life. The only explanation I have been offered by doctors is that they don’t know what’s happening but it’s probably something to do with how my body is responding to the vaccine.
I’m going to share what’s happened to me during the past two weeks NOT to scare anyone, but for two reasons. Firstly, to reach out to anyone else that might be experiencing the same thing, because it’s really frightening and maybe it would help to know that you’re not alone, and secondly, I’m also sharing it in the hope that somebody might have an explanation, and perhaps guide me toward treatment. I’d even be happy to be part of any research.
I’m 49 and was offered the vaccine early because I have a stroke history (one stroke age 19, then three more in my mid-thirties). My strokes were due to being born with a hole in the heart, which was fixed with a titanium implant in 2007. Most people have no idea I have had strokes — I made an incredible recovery. The only long-term effect of the strokes that interferes with life at all is migraines with aura, which I started getting soon after the implant surgery (at first daily) and get once every few months now. They are very mild, with the aura lasting about an hour, and any pain relieved by a glass of red wine, black coffee, or eye massage. Apart from the occasional migraine, I’m fit and active. I am a healthy eater, don’t drink much alcohol (and go months sometimes having alcohol breaks). I have “sticky blood” so take 75mg of aspirin every day and inject myself with heparin when I fly to prevent blood clots. I also take an antihistamine every day because vinegar fumes from my pickling business have damaged the lining of my nose and without antihistamines I’d spend all day sneezing at the slightest thing.
I accepted the vaccine because I want to be able to take my annual volunteering trip to Japan as soon as Japan opens up again.
I had the Oxford vaccine at 12:20pm on Wednesday 3rd March. I wasn’t feeling my usual jolly self because I had had to say goodbye to my dog four days prior, but physically I was fit and active on the day of the vaccine. Around 9pm I started shivering.
The shivers progressed into full-body shakes, most violently in my hands and arms. I eventually stopped them by putting on layers of clothes and lying in bed with the electric blanket on full. I started having difficulty breathing, my heart was racing, chest was tight, and I had trouble thinking clearly. Around 2am, Matthew called an ambulance, and the paramedics found my vitals to be as follows:
- Respiratory rate 24 (over 20 is considered high, 24 is considered dangerous)
- Pulse of 133 (between 60 and 100 is considered normal, over 100 is considered to be indicative of a serious problem)
- Blood oxygen level 93% (below 95% is considered low)
- Temperature of 39.9ºC or 104ºF, (normal is 36.1–37.2ºC or 97–99ºF)
My NEWS (National Early Warning Score) was 10. A score of 7 or higher indicates high clinical risk and requires an urgent or emergency response, and I was immediately taken into hospital. All vitals were stabilised, blood tests gave no cause for concern, chest x-ray clear, and I was discharged around 11am, with the doctor saying that nobody knows what effect the vaccine would have on individuals, but given that nothing else was showing up, he assumed that it was the vaccine that caused my reaction.
Days 1–4 were spent mainly sleeping or dozing. I slept for at least eleven hours every night — heavy, deep sleeps with vivid dreams. The best I felt was in the hour after waking, but after I had a shower that was me done for the whole day. My chest was still tight, and I was constantly exhausted, spending all day on the sofa. I developed painful sores. On Day 3 I unexpectedly got a period (they’re irregular these days but I usually still get a warning).
On day 5 I called the GP to say that I still wasn’t right. My chest was still tight, and breathing still felt like a bit of an effort. I was told to get straight back into hospital because blood clots hadn’t been ruled out. I had more blood tests and a CT scan with iodine, which didn’t show any clots but did show a swollen lymph node. I was sent home with the suggestion that perhaps somebody should check in on my implant every now and again, even though it hadn’t given me any trouble in 14 years and beyond it’s six-month check, it isn’t standard practice to monitor this kind of implant. The consultant talked to me at length about the vaccine, explaining that it was a new drug, about which they knew very little, and they didn’t know how it would affect people on an individual level. They said that the lymph node would need to be checked in three months, but they assumed that was also a sign that my body responding to the vaccine.
I again spent most of days 6, 7, and 8 exhausted on the sofa. My thinking wasn’t clear, and I had trouble processing information. I had to read the same word over and over again, not sure if I had read it correctly, or if I knew what it meant. It felt like when I had the strokes — it felt like there had been some neurological damage. I developed mild agorophobia, and started to feel increasingly afraid of something outside, but I didn’t know what.
I started having migraines every day from day 4, sometimes twice a day. Two of the migraines were preceded by what I have since discovered is known as “Alice in Wonderland Syndrome.” AIWS is a rare neurological condition where your perception of space, time, shape, or size alters. For me, it manifested itself by seeming like my hands were growing and shrinking, like you sometimes see in special effects in films (you know when the Guardians of the Galaxy go through so many clicks and jumps that their body parts expand and contract, and you have an idea of what my hands were doing). Freaky, right? Well, even freakier perhaps is that this is not the first time this has happened to me. It used to happen to me, regularly, at night, but I didn’t have the vocabulary to describe it because I was only seven years old — I just told my mum that my hands looked funny. But what they were actually doing was appearing as if they were growing and shrinking right in front of me when I was a child. And again now, more than forty years later.
Day 8’s migraine was so horrific that I crawled into a ball, frozen in agony, with tears pouring down my face. In the almost four years that we have been together Matthew has never seen a migraine affect me in that way. Paracetemol had no impact whatsoever. I kept thinking that if I could crawl to the kitchen then I could get a knife to stick into the side of my head to relieve the pain. It was so bad that an ambulance came and took me away for a CT scan and more blood tests, all of which came back clear. I went home, still exhausted, again with the doctor saying it was my body reacting to the vaccine. The next day the yawning started — massive yawns occurring several times an hour, throughout the whole day. Then my left arm and left side of my face went completely numb for fifteen minutes. On day 10 my lower legs started “bubbling” — I could feel bubbles moving up and down my calves, and occasionally popping in my thighs.
On day 12 I contacted my GP again, saying that I knew something still wasn’t right and it was frightening. I asked for an Epstein-Barr Virus test (there has been research indicating a connection between EBV and Covid) but my GP said there wasn’t any point. I asked for a referral to a neurologist and again, she said there wasn’t any point, and it was only when I started crying that she said she would email someone. That was three days ago. I haven’t heard anything yet. I know the NHS are busy but I need to go through them to get private help, which I’m happy to arrange.
On day 13 I managed to walk for five minutes around the block for the first time since the vaccine. It wiped me out for the rest of the day. But I did feel that my brain was functioning just a little more normally. It was only for that one day though, and yesterday I returned to feeling constantly exhausted and mentally impaired. I can write this but when I reread sentences they don’t really make sense to me, and I have had to ask someone else to check it. I’ve written five books — you can imagine how unnerving this is to not be able to understand my own writing.
It’s been 15 days now. My daily routine is to sleep late, manage a shower by midday, then lie on the sofa for the rest of the day, exhausted, and have a migraine at some point before going to bed. People who know me, know this is absolutely not how I live — my days so far this year have consisted of a combination of hiking, yoga, giving speeches, writing, food production for my business, and studying Japanese. I am physically and mentally very active. Now I’m constantly physically and mentally exhausted, having done nothing. It feels like what I imagine MS or ME must feel like.
Does any of this sound familiar to you? Has your body responded in a similar way? How are you managing it? How long did it take for you to recover? What treatment did you receive and from who? Or are you a medical professional working in this field and can offer suggestions or reassurance? I feel a bit scared and alone in dealing with this, to be honest, and I’d love to hear from you if this all sounds familiar to you.
I should say that I don’t want to hear from anyone lacking in compassion right now. I’m scared, and worried, and I’m asking for help. If you can’t offer help please ignore my post rather than respond unkindly. In my research I have discovered that some people (on both sides of the argument) can be incredibly cruel in discussing the vaccine and Covid. Please have a little humanity. I don’t need to be judged for having the vaccine nor do I need to be dismissed for suffering with life-altering side effects. I know they are rare. I know there are plenty of people who are not having this kind of experience post-vaccine. Knowing that these side effects are very rare isn’t helpful to me. Knowing how you deal with them is. I am fully aware that severe side effects can happen with all medicines — medical professionals just don’t seem to have any answers for these side effects because it’s such a new, experimental drug (their words, not mine). Everybody seems to have an opinion about vaccines and especially this one, but I’m not asking for people’s opinions. I’ve kept my own opinions out of this call for help, so please don’t respond with your own. I might share some thoughts at a later stage, but for now I just want my life back.
And to anyone worried about whether I am being taken care of, please know that Matthew is the kind of person who is in his element if he has to care for someone, and I am being very well taken care of. So don’t worry about that.
Update: Today is day 34. After posting the above blog, I managed to gather advice from experts in vaccinology and immunology, who advised me to get referrals to haemotology, neurology, and immunology. They also said to investigate the following possibilities: Epstein-Barr Virus, transverse myelitis, Multiple Sclerosis, Cerebral Venous Sinus Thrombosis, thrombophilia in general but specifically antiphospholipid syndrome, Post Tachycardia Syndrome, Dysautonomia syndrome, kidney problems, adrenal deficiency including Addisons, and autoimmune disease. Being an organised kind of person (and this unfortunately not being my first time to deal with a complicated medical problem) I made a chart and put together a list of requested blood tests, which my GP reluctantly agreed to arrange, commenting that maybe one of them would explain why I was feeling “a bit off.” Seriously, those were the words he used. I could hardly stay awake during my appointment … this is not someone feeling a bit off.
While waiting for the results, I’ve spoken to an autoimmune consultant with a private practice, who deals with complicated medical conditions and has been working with long Covid patients. She came to the conclusion that I have brain inflammation brought on by the vaccine, in the part of my brain that was affected by the multiple strokes I had fifteen years ago (which I didn’t think will always be a very sensitive and vulnerable part of my brain, and which is why my symptoms now are so very similar to when I had the strokes). This makes complete sense to me, and I’m going to begin treatment for brain inflammation. Hopefully with the support of a GP, but I don’t think I can rely on that because you know, I’m only feeling a bit off …
In the meantime, I’m still sleeping at least ten hours every night (and I feel like CRAP if I don’t), and I usually wake with pain all around my eyes. I still need to rest after sleeping, but I can manage a short walk (about a kilometre) as long as I go really slowly. I can understand written information again, but have to be careful not to read too much. I’m generally very tired and slow, and can’t interact with people for too long, but I can slowly feel a little bit of my personality coming back. I do feel just a bit brighter, even if it is for a short time. I’m accepting that I’m probably going to need three months of intense recovery from brain inflammation, but in reality I know from past experience that healing from neurological issues can take about two years. I never thought I’d have to do it again.