I guess at some point I had to stop waffling in other journal entries and write this one. The tale of the condition that brought my life crashing down. That stopped my journey dead in in tracks, before it started retreating.
That’s how I view it, whether that’s wrong or right I don’t know. But it’s taken me back a fair few steps. See no one who’s lived a full existence of independence expects to suddenly be a child again. A 29 year old child, back home with their mum, who’s back to mum duties of caring for their kin.
It started in December 2015. I was working full time and studying on the side. I was also training though not yet competing. I was at my desk, engrossed in designing reinforcement for units in a big project we had on. Then the pain started, just 30 seconds of it roughly. But by the end of that 30 seconds I was a shaky, sweaty ball of tears. Gone as quick as it started, almost having me believe it was my imagination. It started happening more. More frequently and for longer periods. By early January it was permanent. Probably not much different to the levels of pain I experience now and also just on one side of my head.
In my early teens I started getting migraines, which the doctors assumed was what was happening to me now. But MRIs in my teens also found a cyst on my pineal gland. So off I went for more scans to find out whether something had happened to the cyst to be causing my new pain.
All clear, the cyst was as it had been previously and so ruled out as the cause. I trialled several medications, amitriptaline, topiramate, atenolol. The list goes on with a few others I can’t remember. We settled on tramadol. The only way I know how to describe what this did to my pain is to refer to a childhood toy. Most probably had one. That strange plastic spiky ball, made of lots of little parts, that could be pulled out into one ball or brought back into the small spiky thing. That’s what tramadol did to my pain, it took it from this big ball and collapsed it down to a spiky bastard. Far more easier to cope with. The downside was to reach that point I had to take the maximum dose. You can probably guess how useful that made me.
I was high. So fucking high, all the time. But I pushed through everyday at work and study. My work was shoddy, my assignments written in a drug fuelled haze. Eventually we paid to see my childhood neurologist privately due to a near 2 year wait to see her via the NHS. Her secretary have me her deepest apologies that her next available appointment wasn’t for 2 days. HA!
Anyway she tentatively diagnosed me with Hemicrania Continua. There’s no reason or cure. One day it just appears, one day it might disappear with no reason. But that it was usually seen in older patients, that to find someone so young with it was unseen by her before. It’s also know to respond to only one drug, Indomethacin. So provided a trial of this showed significant results then my diagnosis would be locked in.
So I started to process of weaning off the tramadol and then started the Indomethacin. And my pain was nearly gone. As I said there’s no cure, only this one drug to manage the pain. So my pain was around a 1-2/10. Much better, thank you very much.
I still had flares, where my pain would suddenly increase, and I learned to increase my medication accordingly till the pain was back under control and then reduce it back to my maintenance dose. Though the drug itself came with its own complications. It’s the worst of the NSAIDs. Causing me horrendous reflux and gastro pain. It even caused me a blue light trip to a&e early on due to vomiting blood. So then I had drugs to help protect my insides from its damage. And I continued like this for 6, what I see now as, blissful years.
Then I had the Pfizer vaccine on the evening of June 17th 2021. Looking back I wish I’d done some research. Everyone by this point knew the dangers of the AstraZenica vaccine, but the Pfizer was deemed safe. If I had done some research before I’d have known that it often exacerbated existing headache conditions. But I didn’t so there’s no point looking back and dreaming of the what ifs.
June 18th I woke in immense pain. As usual, I increased my meds, and kept increasing my meds and then increased them some more. But it wasn’t working like it always had before. My maintenance dose was 25mg and I’d increased it to 200mg. I paid privately to see my neurologist who prescribed me Lamotrigine. It’s an epilepsy drug that apparently for whatever reasons sometimes helps. It didn’t. On the same day she also did a nerve block on the side my pain sits in, the right. This was into the occipital nerve at the back of my skull. This didn’t work either. We waited to see what would happen. Nothing.
Back I was receiving another 2 nerve blocks, this time bilateral. She also referred me for a fresh set of MRI scans and referred me to a neurosurgeon to discuss a nerve stimulator implant.
Again the nerve blocks didn’t work, and this time they increased my pain a little more. September I had my scans and an appointment with the neurosurgeon. I found out he had no intention of going straight to the implant, instead he wanted to try pulse nerve radiofrequency lesioning. Basically a one time nerve stimulator zap, bilateral, to my greater occipital nerves and my right trigeminal nerve, while also flooding these areas with local anaesthetic. All done key hole. I also found out I have mild chiari malformation.
So I said sign me up. I was warned there was a chance it might now work, or a chance it might make me worse or a chance it might work first time. Or also a chance he’d have to repeat it again. Lots of chances all in. So I had the operation November 11th. By this point the increase in my Indomethacin had increased my gastro issues and also caused bronchospasm which was causing me great difficulties breathing some days.
The operation came with a final warning that the recovery could be up to 6 weeks of increased pain. He was right, it absolutely did. It was awful, all the way up to Christmas. I was mostly bed bound since June anyway. Generally I’d wake and take meds, sleep till lunch where I’d get up and have a cuppa and some meds. Then I’d sleep till dinner, eat and take meds and then sleep through the night. Lather rinse repeat. I’d have some good days where my pain was a 4-6 out of 10, but following the op I had no good days at all.
I couldn’t cope, and I was getting fobbed off by my doctor surgery who wouldn’t/couldn’t deal with me because they didn’t know enough about my condition, surgery or medication regime to help, despite me saying I could no longer afford to privately find my treatment. My op was on the NHSs wallet, but everything else was on mine. Nerve blocks, appointments and even just phone calls cost me every time. So following a long demanding email to everyone involved in my care so far I got an NHS appointment with my neurologist in January. Indomethacin and Lamotrigine were to be stopped and I was prescribed pregabalin.
I eventually started this in February and I started to have hope. Light at the end of the tunnel. Something was working! I was having more good days, less days spent in bed. Unfortunately, it was short lived. Suddenly my pain blossomed…again. Like a rollercoaster, when you think you’re at the end then you hear the clicks of the carriage rising towards the sky once more. The difference being I love rollercoasters. I’m an adrenaline junky, always have been.
So once more I paid for an additional phone call to my neurologist in March. 16 minutes and £180 later I was told to increase the pregabalin. Which made me incredibly high and gave me significant cognitive issue, yet did nothing to reduce the pain. She also sent a letter to my neurosurgeon to expedite my post op follow up.
Having had enough of paying anymore I started emailing my neurologist, and was advised to reduce the pregabalin back down as there was no point in being high if it didn’t help the pain. So I reduced the dose and waited to see the surgeon at the end of April. In the meantime I worked on trying to repair some of the cognitive issues. Such as my wonderful neat and free-flowing handwriting. I was suddenly unable to control a pen, writing at the level of a 5 year old. The memory, and communication issues are still there. Some things I guess will have to be dealt with when I can finally stop these drugs.
Anyway I digress. I saw the surgeon, and you’ve probably all read my journal entries discussing his ‘3 lots of hope’. So in May I had 31 Botox injections around my face, head, neck and shoulders. Thankfully these were symmetrical! Before Botox I’d maybe have one day a week where my pain would drop to a 7/10. A ‘good’ day. Post Botox I’ve had a total of 6 ‘good’ days where it’s dropped to a 7/10. So Botox was and is a no from me.
I’ve just started the next treatment. A CGRP Inhibitor injection. A fairly new treatment for migraines. When I saw my neurologist for my Botox she said there’s not a lot of studies on it’s use on Hemicrania because it’s not really used for it, because it often doesn’t work. So of course I’m full of hope with this new treatment. I have to be because my third and final option sounds horrendous and I would have hair shaved and a Frankenstein scar. Jokes aside though, I really do have to have hope that something, somewhere along the line, will work. That suddenly I’ll have pain at a manageable level and I’ll be writing these journals detailing my rehab back to normal life. Because that’s what I dream of now.