Friday I started a new experiment. It’s how I refer to my treatments. As there is no cure for my condition, and the only drugs it’s known to respond to no longer works or is tolerated by my body. So we are left playing a game of battleships.
E4 – nerve blocks x 3
B2 – Lamotrigine
F6 – neurosurgery
A7 – pregabalin
B5 – Botox injections x 31
E1 – CGRP inhibitors
A2 – nerve stimulator implant
Fridays experiment was E1. My first self administered injection which is to be repeated every 4 weeks. The nurse said patients tend to see signs of it working around the 3 month mark…the patients she refers to are migraine sufferers. The condition this drug is designed to treat, not Hemicrania Continua. I should also add, I’m only on a 3 month trial. I know what you’re thinking, what a thoroughly thought out plan.
As with every single treatment I’ve tried, it’s immediately made my pain worse. My pain was significantly increased following neurosurgery in November and I failed to have as many lower pain days. When this started in June I’d occasionally get days where my pain would be between a 4 and 6/10. Those levels haven’t been seen post surgery. The lowest I got was 7/10 once a week roughly. Then there was the Botox in May. Since then I’ve had a total of 6 days where my pain has been a 7/10. So a drastic reduction in ‘good’ days.
But as with most things I start, my head immediately reacts, now I just have to wait (I won’t hold my breath) and hope that this is the treatment that causes my head to react positively. To see a downward trajectory in my pain levels and the consistency of them. I think injecting myself every month sounds a darn sight nicer than the gruelling surgery required for an implant. Though studies suggest that is the experiment that has a high chance of success.
To be honest at this point if the implant has even a 50% chance of working I’ll walking into that operating room with bells and whistles. The truth is that while I’ve spoken about my struggles with finding and holding onto hope throughout this whole journey, knowing that for 6 whole years I had this condition managed gives me hope. My pain was at a level that could be ignored and accepted, a level that let me lead a fulfilling, normal and exciting life. One where no one knew I had this condition, or the stack of pills I popped daily to keep it that way. Because I had that for so long, I know it’s possible. That it’s something that can be achieved and I won’t stop fighting until I have that back.
See having a rare disease like this is only half the battle. The battle that I and so many others with this condition have to fight is with the healthcare system. Our battle isn’t really with the many consultants or neurologists we deal with, though sometimes they bare the brunt of our frustrations. The real issue is that such a rare condition lacks incentive. As a result, there are very few studies and very little research into what is ruining my life, and others. So there’s no cure, there no knowledge on what causes this condition. As far as the healthcare system is concerned it’s a pain that just is. They found one drug that it likes to respond to, that is horrendous and damaging and that so few peoples bodies are even able to tolerate. But that’s them done for the most part. Outside of that option it’s back to a game of pulling treatments out of a hat and seeing what does or doesn’t happen.
So here’s to my next experiment. May you be the one that’s gets me my life back. May all the experiments I endure go some way to helping those that have the unfortunate experience of following in my footsteps.