My 5 Year Journey Post-vaccine: Part 1

Recently I’ve been dealing with a lot of stress and emotional situations, I’ve coped better than I expected but there are other unrelated emotions that I just can’t shift. That’s what I’ve come to write about, because that’s usually the best way for me to process when talking about it with friends, family and therapists don’t clear it.

On June 17^th, it’ll be 5 years since I got sick, since my entire life was turned upside down and never recovered. In that time, while I have seen lots of people, initially by paying privately, not a lot has happened for me. For the first 8-9 months, I paid to see my neurologist privately, because my immediate concern was the exacerbation of my Hemicrania Continua and the pain levels I was in. Alongside this, the chronic fatigue syndrome (CFS) went ignored and undiagnosed, along with my drug reactions, tremors, burning pains etc. Some of this developed slowly, others came on overnight, like the CFS.

When I saw my neurologist a month after the vaccine, she dismissed me entirely when I said everything kicked off within 2 hours of the Pfizer vaccine. In fact, she said, “don’t be so silly” and it was just a “coincidence”. We added in Lamotrigine and tried 2 or 3 rounds of nerve blocks, both bilaterally and unilaterally but they just increased my pain levels.

 In September 2021 I had my first neurosurgery which took months to recover from, but my pain was permanently heightened as a result, this was a known risk but one I felt I had to take to get my life back. When I woke from surgery, I vividly remembered being in the theatre and convulsing, including being rolled on my side. I asked the post-op nurses, but they assured me that the surgery went without incident, and they would know had something happened. This surgery was keyhole and was a one-time “zap” of the nerves in the hopes to reset them, specifically the occipital and trigeminal nerves. But I was sore all over, everything ached and the following morning I had to get my mum to help me out of bed. I’d pulled every muscle from my groin to my neck, and I couldn’t sit up or get myself out of bed. This went on for what felt like weeks, very slowly easing so I could roll myself out of bed and off the sofa, until eventually I could use my arms to push myself up.

The surgery was on the NHS, as my neurologist did a referral to the neurosurgery team in Southmead. She suggested the ONS implant, but we agreed to try this surgery first.

After this, everything I tried increased my pain, so if I wasn’t paying £175 for a 12-minute phone call with my neurologist, I was emailing her pushing to try the next treatment. The pain and fatigue were debilitating and at the time I thought the fatigue was a result of having such extreme pain constantly. In January/February 2022 we decided to stop the indomethacin and lamotrigine and start pregabalin. Indomethacin I’d been on since HC was diagnosed in 2016, and it managed the condition well. Post-vaccine it stopped touching my pain and caused another adverse reaction, bronchospasm. I was glad to be getting off it so I could walk more than a few steps without getting breathless or needing my inhaler. Initially I was asked to come off the first two medications and wait a period before starting pregabalin so my neurologist could know what my base level of pain was. I lasted less than 4 days before having to start pregabalin because the pain was so unbearably intense – little did I know that would become my norm soon.

At first, the pregabalin helped. My pain was reduced by 50%, 50% of the time. This was significant to me, but after a few weeks it was like I was suddenly taking placebos. So, I paid £175 for that 12-minute call and was told to double the dose, this just made me feel incredibly high and useless. I spoke to the inhouse pharmacist at my GP surgery who suggested reducing until I didn’t feel like this, but not before telling me she has many elderly ladies on a much higher dose and how they didn’t have any problems. Way to gaslight my experience and how awful I was feeling.

I reduced and stuck at a level of 100mg twice daily and agreed with my neurologist that taking and extra 25mg at lunchtime on my 10/10 days to take the edge off was fine. Meanwhile, I saw my neurosurgeon again, but he still didn’t want to proceed with the implant. He felt I was too young and it should be a hail Mary option, first I should try Botox and CGRP Inhibitors. Both of which my neurologist had mentioned but said that they don’t use them for HC as generally they don’t work. But what else could I do? These were the last pharmaceutical options available to me.

I was having mobility issue already by this point, in fact the mobility issues had appeared quite quickly but gradually. However, they were the least of my issues. But around March-May 2022, I started taking Naproxen again due to the widespread pain I was also experiencing.

June 2022, I saw my neurologist via the NHS to start botox. I had 31 injections, starting with one between my brows. Prior to botox, I occasionally had what I called “good days”. Days when my pain was randomly around a 4-6/10 and I could manage a short 1-2-1 visit with family and friends. These days happened maybe 1-3 times in a 2-week period. In the 3 months following the botox, I had 1 good day. My friend helped me write to my neurologist and urge her to get me an appointment ready to start CGRP Inhibitors, because I was not trying another round of botox. I will admit, my neurologist was probably sick of my emails at this point, but I didn’t care. I couldn’t care, because my life was a living hell. My mobility issues had sped up; I lost fine motor skills and the ability to write above the level of a 5-year-old. There was no help or support with these changes, instead I spent months doing handwriting sheets in bed, using Baoding balls and trying to eat with chopsticks. I was also doing my own exercises and physio from my bed; I had been since the vaccine because I was a powerlifter. Training and movement were in my DNA, its all I knew. Unfortunately, my efforts only improved my motor skills but the weakness in my hands and pain when I use them remains. My mobility continued to decline despite my hopes that I could physio my way back to walking normally, safely and further than a slow wobble around the block.

I started CGRP Inhibitors around 2-3 weeks after the end of the 3-month life of the botox. These were monthly self-injections called Erenumab. After the first one I felt quite unwell, I went to the doctors insisting on blood tests. I didn’t know what was wrong with me, but I just felt something was wrong. Whatever I was feeling, it wasn’t right or normal. I took the second injection, but I was continuing to feel unwell. It was until a friend asked me when this started that we realised that it started when I started the CGRP Inhibitors.

Once again, she helped me write to my neurologist and inform her that there was no way I was going to take the 3^rd injection and continue to decline. I was told that the trial period was 3 injections, so 3 months, just like to botox. Absolutely not. I insisted that she write to my neurosurgeon without hesitation. The sooner I got the green light for surgery, and we stopped playing medication roulette the better. By this point, each treatment increased my pain and decreased my “good days”, so my minimum pain was now 8/10.

It took a month for her to write to my surgeon, and the entire letter was incorrect. She informed him that I was having some success with the indomethacin, and that I’d like to have a routine appointment to discuss the implant. The same implant that she suggested I get 6 months after the vaccine. I couldn’t believe it, that she could get everything so wrong, like she hadn’t even read my notes or emails. How on earth could he consider a “Hail Mary” surgery when she’s told him I’m doing well on the indomethacin that I stopped in January?!

I wasted no time, called my friend and we wrote a letter which I emailed directly to my neurosurgeon’s secretary. I highlighted all the errors and gave him a written account of what had been happening, what I’d tried and what the outcomes were for me. My only mistake was not copying it to my neurologist or filing an official complaint. I’d already sent a letter in December 2021, 2 months post-surgery, when no one would take responsibility for helping me. My neurologist said it was down to my surgeon, the surgeon said I had to wait a set amount of time before my follow-up, and the GPs didn’t want to know. This letter led to my neurologist booking me an appointment in 2 weeks’ time and urging my neurosurgeon’s team to bring my follow-up forward.

By this point, end of 2022, I was already using a walking stick and had issues with tremors, tics, food and stress reactions and I was still bed-bound for up to 90% of my time. The only change was that unlike for the first 6 months post-vaccine where I slept 20 out of 24 hours, I had cut back to an almost normal sleep/wake pattern. But I couldn’t do more than I could post-vaccine. I could barely exist. Despite repeated attempts, I couldn’t get any mental health support, so I was paying privately for therapy, I still am.

In 2023, I saw my surgeon, who agreed to put me forward for the implant but that it wouldn’t be straightforward. I had to go through a pain clinic, a psych evaluation and then my case would be discussed at a multidisciplinary board. These turned out to be easy, the pain clinic said they couldn’t offer courses for anything I wasn’t already doing and the evaluation was less traumatic than expected, but I’d prepared for it with my therapist.

At the end of July 2023, I was called to an appointment with my neurosurgeon who told me I’d been successful and that the surgery would hopefully be in the next 6 months. That was it, no further information, no discussion on what to expect or the recovery. Admittedly, I was so emotional at the news that I couldn’t form any thoughts or questions. All I knew was that they were willing to try this Hail Mary and then maybe my life could get back on track.

In October 2023 I had the implant surgery. I was told I would be out the same day, and down I went. I started to panic in the theatre when the anaesthetist and nurse were setting up wires and a cannula. The cannula was fun as every vein he tried disappeared, eventually he got it in my right hand. The nurse was lovely, when I started panicking and crying, from fear, she stopped what she was doing and just held me until I passed out. To this day, I wish I could have thanked her for her compassion in that moment.

When I woke from surgery, I knew there was someone moving around my room before I opened my eyes. I also knew that was a sharp pain in the LEFT side of my head. My HC and implant are on the right side. When I asked, “why does my head hurt so much on the wrong side?”, again before I’d opened my eyes, this voice came from behind me on the left, where the nurse wasn’t. “That’s where we screwed a cage to your head to keep it still.” It was my neurosurgeon. At this point, I was on morphine, IV paracetamol and about due my pregabalin dose. So, my surgeon suggested they add fentanyl and I take my pregabalin. Woohoo, I was away with the fairies!

My nurse, Ian, was fantastic, He was funny, attentive and made my situation almost enjoyable. The only concern I had was that my hand where the cannula was, was getting very painful, but I was assured it was fine. I was also told that I’d in fact be spending the night for IV antibiotics.

I can’t remember if it was before or after my surgery, but there was a lead nurse who was having a go at the nursing team who had just stripped a room but hadn’t yet changed the suction thingy for if someone aspirates, “We’ve just failed infection control, and you still can’t get it right!” I won’t pretend I wasn’t disgusted by his treatment of his staff, but I decided this probably explained why I now had to stay overnight.

Once again, I’ll add that I didn’t know what to expect post-surgery. Including the fact that I didn’t consider the damage and recovery that having wires forced through your neck might cause. I was moved from the theatre ward to a room on another ward with a different team. No more nice nurse, but I got to see my family. I recall my surgeon and his team coming by, while I was still high as a kite, and my sister informed me that he’d said I would have to relearn how to safely move my neck and activities like skydiving were off the bucket list. That was it. Eventually my family had to leave and I had to sleep. My hand was still in a lot of pain, and my neck and upper body had become almost unmovable, with pain getting almost unbearable. I requested pain relief but was told that I’d had it in the theatre suit and couldn’t have more, but I was compos mentis enough to know that had been many hours before. Lights went out and the abrupt nurse placed my call button on the bed bars, to my top right. Where I couldn’t move or reach for. This resorted in me led there, in agony, waiting to see shadows pass my door or nearby voices so I could start shouting for help and pain relief. The nurse once again refused, and I carried on. Eventually she agreed to get the doctor who agreed to give me more IV paracetamol. I really was in agony and I really couldn’t move!

I woke in the middle of the night, aware of the most intense burning pain in my hand. When I opened my eyes, I saw the same abrupt nurse crouched next to my bed squeezing an IV bag, I told her my hand was in agony, and she said “It’s just the antibiotics. It’s fine, go back to sleep.”

What felt like maybe an hour or two later, the doctor was in my room at 7am to tell me I’d be discharged with oral morphine. That was it. I called my dad, and I’d rolled myself out of bed to start trying to get washed and dressed. The first thing I figure out, aside from how difficult it was to get dressed when I couldn’t move my neck and shoulders, was that I arrived in a baggy white t-shirt and I couldn’t get my bra on. They told me that once I was discharged, I’d be moved to the downstairs waiting room while waiting for my dad to collect me. But that I wasn’t allowed to call my dad until I was given my paperwork and oral morphine. I’d managed to get my t-shirt and leggings on and was attempting to find my toothbrush and toothpaste so I could at least brush my teeth when suddenly multiple nurses appeared with a wheelchair trying to rush me out of my room. I should add, I’d completed a menu for that lunch time, but this was around 8.30/9am. They told me to hurry and get in the chair; they needed to take me to the waiting room. I complained that I couldn’t sit in a waiting room with no bra and a white t-shirt, that I didn’t have my discharge paperwork or my medication. They said I’d get those downstairs, but that I still couldn’t call my dad. I was refused medication, which I due for, because I’d be collecting from the pharmacy when I got downstairs. One of them had disappeared, while the other was shoving my stuff haphazardly into my bag. She returned with a hot pink scrub top that nearly came down to my knees, and they had to help me into it. Then I was shoved in the wheelchair, my poorly packed bagged shoved inside and whisked out of the room. I didn’t even get to brush my teeth.

At this point, I was quite disabled. I couldn’t sit up for long periods, and I had to have my head supported, I also had severe photosensitivity, pain and movement that was equivalent to severe whiplash, and an extremely painful hand and a body without any pain medication in it. Hours went by and I could barely walk, I didn’t have my stick, and I was literally shaking and sweating from the pain I was in; Left in an uncomfortable chair, in a bright and noisy waiting room, no breakfast and no sign of my discharge papers or my medication. For the second time, I made my way to the nurse’s station in the waiting room and begged them for help. They once again called to the neurosurgeon’s team to chase the discharge papers that still hadn’t been done, checked my notes and saw I was well over-due medication and decided to give me a dose of oral morphine on the spot. But I still couldn’t call for collection. They also informed me that I shouldn’t have been taken to the waiting room at all, protocol was that you don’t get move there until you’re properly discharged and have the paperwork to show for it. I knew that 2 others had nerve stimulators fitted on the same day as me, and there was no one in the waiting room with ¼ of their head shaved and whiplash injuries. Certainly, no one with a hand that was black from bruising, where clearly, they’d continued to use a cannula in a vein that had collapsed. Instead opting to squeeze the IV bag to force the antibiotics through.

3pm. That was the time that my discharge paperwork finally arrived, meaning my medication could finally be ordered from the pharmacy and I could call my dad to make the hour-long drive to collect me. Around 1.30/2pm, when the waiting room had nearly emptied, I had to go and ask the nurses if there was any way I could get something to eat. Shocked that I hadn’t had anything, they managed to find me a very dry ham sandwich and some orange juice.

To say this ordeal was traumatic is an understatement, it shouldn’t have happened. The treatment pre- and post-surgery in the theatre ward was exemplary. Then I move wards and I felt like an inconvenience the entire time. Those that know me, know I don’t talk about my pain levels. I have a moan about my circumstances and how challenging life is, but I don’t moan or make a scene when my pain is unbearable because it doesn’t change it, there’s nothing anyone can do to help, and I don’t want to feel annoying or like a burden. The nurses and doctors obviously didn’t know me, but that didn’t stop the theatre nurse hugging me until I passed out, or the post-op nurse being so incredibly attentive, making me tea after tea, having a laugh with me and checking on my pain levels. After this, my pain was dismissed, ignored and they even put the call button for help well out of my reach. Then they felt it was acceptable to rush me out of my room, before I could even brush my teeth, with no medication, no discharge and no care for me as a patient with trauma to her body following such invasive surgery, or the fact that I was disabled. Better still, the discharge paperwork was incorrect as it stated I had “paroxysmal hemicrania” which is incorrect.

I should also add that after the doctors left at 7am, I asked for them to be called back because no one had told me how I was supposed to care for the wounds to my head and chest, only that if they got infected, they’d have to take the implant out. Given I’d just woken up I hadn’t registered that they hadn’t provided this basic information.

The following two weeks, while I had morphine which I took in very minimal doses, and the implant operational, I felt the best I had since the vaccine. I truly felt like I could take on the world, I thought this was it, finally I could see a future again. One where I wasn’t in pain, unable to work and do anything beyond merely existing. 10 days post-surgery, despite the continued limited mobility in my upper body, I got to walk down the aisle as a bridesmaid for my friend’s wedding. No pain, a lot of fatigue and big grin because I genuinely didn’t think I’d get to even attend.

I’m going to leave this here for today. Honestly, writing this has been deeply emotional and reliving some of the trauma here has been really painful. I need to go decompress and clear some emotions, but first I’m going to post this to my blog. I don’t need validation, instead it’s simply because there’s a lot here that I haven’t discussed before, certainly not altogether.

I write my blog for my loved ones to know where I’m at, to update the people who care about me and so someone, somewhere with a similar story or experience feels less alone. But also, because I’m seriously considering writing something like this to the NHS to make a formal complaint because I’m angry. I haven’t written the following 2.5 years of “slipping through the cracks” yet, and I’ve slipped through them all. As a result, I’ve been left with no support and no help to prevent the decline in my health that I’m currently experiencing. So, I’m sharing this to my blog, so it doesn’t feel so scary sending it to the NHS complaints board.

I don’t expect anything from raising a complaint, but at this point in time it feels like a vital step in my healing journey and to hopefully use my experiences to stop this dire treatment happening again for someone else.