Why Has Nothing Worked?
Last updated: April 2022
My migraine journey
It has been nearly 3 years since I was pain-free. I think it was the end of May 2019. That was the first time I started to get a headache and it has never stopped since every single second of my life going forward in pain. Never in my wildest dreams, or scariest nightmares, would I think I would still be in pain.
I have no idea why it started. I have never had an issue with headaches or migraines beforehand.
The sinus infection from hell
It all started with a cold that led to a sinus infection and the pain has never gone away. After numerous visits to see my GP, I had been prescribed antibiotics to treat the sinus infection and then been referred to an ENT.
After a horrible night and immense pain, I went to E&A and then transferred to ENT where they checked my sinuses but could not find anything wrong with them. On to a CT scan but this was only of my sinuses and they could not see anything.
I then had a 4-month wait for an MRI scan. At this point of the journey, my partner and I decided it would be best to go private to have my MRI scan instead of waiting for the NHS one, as we did not know how serious it could be. I had many images in my head of having to tell my two children that I had a brain tumor.
"All clear" but still in pain
Lucky the result of these came back all clear, so I decided to stick with the private neurologist. My GP had had me on Amitriptyline, which I was advised to come off onto Nortriptyline, which I am still on, and then I also moved onto Levetiracetam (Keppra) again. I am still on this today.
These helped to control the pain and I had fewer flare-ups. I tried Aimovig for 3 months at 70mg which seemed to make good progress but never I was pain-free.
Other things I have tried
Next, I was prescribed 140mg Aimovig which didn’t help it really stopped working.
Next, I tried a greater occipital nerve block, which was horrible; I was stuck in bed for 3 days after.
I have tried Lamotrigine which had a bad side effect, Zonisamide did not do anything and Epilim Chrono all have done nothing.
During this time, I have also developed tinnitus, which can be like torture some days a high-pitched buzzing in your head is horrible.
My everyday life
I know that I am luckier than some as I am still able to work. Light and weather do not affect me nor do I suffer from nausea, I do get dizzy and lightheaded sometimes. I do suffer from fatigue a lot and have to be so careful what I do even simple tasks can take it out of me. This has been the hardest to get to terms with as I just to be quite active, but not anymore, I just can’t do what I used to do. I am not the person I used to be.
I think the closest I have been to being pain-free was when I had liquid morphine a couple of months ago. Even this didn't stop the pain.
Luckily, throughout this journey my partner, who is now my fiancée, has been by my side all the time. We get married next year just hope my head is behaving on the day and on our honeymoon.
I can't remember what being pain-free feels like.
Next, I am off to a migraine clinic on April 27th to see what they can offer. Looking to try Botox or another CRGP as these have now become available on the NHS. I hope they can help.
Do you have a migraine toolbox for when an attack hits?
Join the conversation