Hi. I am on my 3rd injection of Aimovig, 70mg. I have 7-9 classic migraines per month (sharp, throbbing pain, nausea, photophobia, etc) plus daily MAV symptoms (bobble-head/disequilibrium, nausea, phonophobia, oscillopsias, etc). To round out the picture, I have both MAV and bilateral SCDS, have had a brain aneurysm (it was clipped pre-rupture), suffered multiple head traumas (moderate-severe concussions) in the military and had a skull fracture among other injuries in a motor vehicle accident.
I’ve tried all the usual medicines over the years and not had any luck. Good luck that is. I am very sensitive to meds and usually have all the weird, odd and rare side effects so was very wary of trying Aimovig. (Plus, no insurance & am on limited income.) My neurologist convinced me to try it and arranged for the first two injections to be free from the company.
I didn’t notice anything at all - good or bad - for four weeks. Then, 2 weeks into the 2nd month, I noticed my migraines had been cut in half.
One week later I had a bout of bobble-head that wasn’t my usual blip (a blip to me is 30 seconds to 10 minutes) of rocking or swaying - it lasted 3 hours and I had to use a walker. I was at home thank goodness. Didn’t fall. Just glommed onto the hallway wall until I could get to the walker. I don’t have BPPV and this 3 hour episode was just very intense swaying/rocking/bobble-head. There was zero spinning, either inside my head or in my environment.
After that episode, I have noticed that the bobble-head is ramped up. If it used to be a range from 2-5 on a scale of 10 with 10 being the worst, then it is now 4-7. A few other symptoms have increased as well - photophobia, the oscillopsias seems stronger, phonophobia, the overall fatigue and brain fog and a few more of my usual MAV suspects. I had another swaying bout but that one lasted only 90 minutes. Again, it happened at home and I used the walker. Did not fall.
After the first bout, I purchased a set of nice walking sticks. Now I keep one in the house and one in the car for moments when my bobble-head is closer to a 6 or 7. They help. (I did get the ones with shock absorbers & that bit of extra is very helpful.)
My 2nd month on Aimovig passed with only 5 classic migraines. That is still a lot since each one costs me at least 2 days from the onset to pain meds to the postdrome period where I feel wiped out from both the brain changes and the meds. But, 5 is much, much better than 9. While the MAV symptoms are still heightened from what was my normal level I have decided to continue with the Aimovig to see if they ease back down. If they don’t I will have to decide if less pain but more MAV is worth it. Or, of course, the cost could make the decision for me.
Re the cost: I have room on a card to purchase 2 more month’s worth if need be. However, I am hoping the VA will start paying for the drug. At the moment the reason (excuse) they won’t is: “it’s too expensive”. I could also apply for a full year’s worth free through the company that makes Aimovig but after reading how much of your privacy you give up to apply I am holding off on mailing that application in.
I hope this info is helpful. I wish everyone trying this or one of the other new injectables good luck.