It’s been a couple of months since I wrote about my battle with chronic migraine, so I thought it time for a wee update…and the news is good!! At the beginning of August I started a two-month free trial for a brand new drug called Aimovig. It’s the only FDA approved drug available that was developed specifically for migraine. Apparently people who suffer from chronic migraine have too much of an amino acid called CGRP (Calcitonin Gene Related Peptide). I stick myself in the stomach with two auto-injectors each month and by some crazy magic, the drug finds it way to my brain and binds to the receptors in the brain that receive CGRP. This means that the peptide cannot land on my brain and it has meant that life has become a whole lot more pleasant!
The first month gave me approximately two week-long stretches of a clear head, but with a couple of MEGA migraines in-between. The second month I have had only one hideous migraine, and a few rough days, but more clear days than the month before. It builds up in your system, kind of like a vaccine, so that over time it should become more effective. It starts wearing off about 5-6 days before my next shot, which is funnily enough quite difficult to handle, both emotionally and physically. I think having a taste of freedom has raised my baseline of what is normal and the return of pain is more unwelcome than I could have guessed.
This drug costs like a million dollars (or $700 per month), and I’m currently having to appeal my insurance company for coverage, but thankfully the company that developed the medicine are giving it away for free for up to 12-months while the insurance process takes place.
Lots of people have asked me if I’m super excited about being so much better – and to be honest, I think I’m working through a bit of PTSD from the past couple of years, so it doesn’t feel safe to get excited. I thought the migraines would end once I got out of the first trimester of my pregnancy, and then once Macie was born, and then when I stopped feeding, and then there have been the four other preventatives that I have tried and been disappointed with. So, I’m wary. Getting my hopes up has proved dangerous in the past, and my battered soul is only just now daring to poke its wee head up above the trenches and check for the all clear. But oh, I am grateful, and so so relieved. I remember being plagued by pain, watching people walking by casually on the street, takeaway coffee in hand, and screaming on the inside, “DO YOU HAVE ANY IDEA HOW LUCKY YOU ARE???!!” Now I have a taste of how wonderful it is to commit to an event and have a fairly good chance of actually making it; of going on holiday with the family and not having to say ‘no’ to half of the activities because I have to lie in a dark room with an icepack on my head. And it’s so wonderful.
Something else I’m realising is that now life is returning to more of a normal state, my thinking requires attention. I have gotten in the mindset of a sick person, and while I still need to be mindful of resting and being careful as I recover, I also need to remind myself on a daily basis that I am becoming healthy. In fact, in order to re-train my brain I’ve become on of those irritating people that keeps a mantra on the lockscreen of their phone: ‘I am healthy, I have energy, I am patient, I am kind.” (Those last two are mainly in aid of rectifying the grumpy-mum situ that my poor kiddos have had to endure for the past couple of years).
So there you go! All-in-all very, very hopeful! I could not be more grateful for the amazing scientists and researchers that have devoted their God-given smarts to developing this drug – it is making a world of difference to sufferers and their families all over the States. Here’s to many, many more pain-free days ahead!
Love you friends,
4 thoughts on “A Chronic Pain in the Ass – Part II”
Thanks for sharing Deb. I remember that same feeling (“you don’t know how lucky you are!”) when my 2 years of non-stop anxiety/panic-attacks felt like it would never leave. I identify with a lot of what you expressed here though it was a different battle…and I grew up with a mommy who got migraines and know how painful it is to witness someone you love hurting and being taken out of important family memories… and feeling helpless to assist in any way. Praying this is the beginning of the end of it for you!! 🙏🏽
Gah, anxiety is horrible, I’m sorry 😟. Thanks for your thoughts and prayers!! 😘
I’m so super excited for you Deb! It’s such a huge change to be pain free and not grumpy! 👏👏👏👏
Oh thanks Wendy, it’s SO nice to not be so grumpy!!