Last updated: 19 October 2018
Italy, August 2018
I'm a dual American and Italian citizen. I've had migraine since I was seven years old. They became chronic about five years ago. I'm 65 years old and my life at that time became so restricted by the pain - and the painkillers! It affected me and my family in an important way and I was limited in what I could do. I had been using Triptans for a long time, taking between 30-40 a month, but had to go on a detox because they contribute to causing migraines after awhile. Another disadvantage of using Triptans is that I still have the pain of the migraine plus the side effects of the medication.
My search for solutions has involved getting a hysterectomy, Botox, painkillers, using Triptans and having amazing support from my husband! The trouble is that most medications have been developed for something else and are used 'off-label'. I heard by chance about a new clinical trial for migraine (for the substance that would become Aimovig) on the radio and the doctor encouraged patients to write to him to see if they were eligible candidates. So I did write and they accepted me for the trial. This trial was going to be 18 months long. However, I had to reduce all of the medications I was using. That was a rough time - I had given up all preventive medications in order to do this.
On the trial, for the first three months I knew I was receiving the placebo - because others were responding quickly and I was not. When I finally did get the medicine it took time to kick-in because I was on too many painkillers. However, after a few months my migraines were reduced by over 50%. The effect of the medicine lasted for nearly a year. But then I was back to square one, because there was no way to access it afterwards. I was constantly looking it up on the internet.
The main part that impressed me was that I experienced no side effects. With painkillers I'm usually sick from side-effects, if not from the migraine! The same goes for all other preventive medications other than Aimovig, there were always unpleasant side effects like weight gain, exhaustion, dizziness, and insomnia.
My first advice to others is find a doctor who knows migraine. It took me many years to find a doctor who really understood migraines - and this was from the Rome clinical study at San Raffaele hospital. I've done it all, but these were the first experts I encountered. You don't want someone who thinks you're stressed out or that you need an antidepressant - it needs to be taken seriously. Neurologists just don't have enough information in general about migraine. For me, Aimovig is the major breakthrough because it was developed specifically for migraine and had no side effects (at least for me). Another benefit for me was that before the trial I was taking up to 40 pills of Triptans a month, afterwards I took only five.
Medicine: Aimovig (erenumab)
Date: August 2018