I am 51 and new here. I have had a long history of neurological problems:
Cluster headaches from 1988 - 2000
Sometimes chronic migraines from 1990 - now
Chronic intractable headaches from 1990 - now
ATN from 2007 - 9/17/2019
I was also diagnosed w/cervical dystonia a few years ago and am treated with Botox, which has also helped the headaches.
I started getting atypical trigeminal neuralgia above my upper right molar and often extending up to my eye and/or ear in 2007. At first I confused it with cluster headaches because they are somewhat similar feeling. The clusters hurt more, but they only last 25 mins. The only way I was able to survive them was because I knew they had a short duration. My ATN, when it is really bad, can last days at a time and that’s with ungodly amounts of tegretol. Dialudid, Valium and baclofen help take the edge off. So does Lyrica. MMJ too.
I was wondering if anyone has had success using a CGRP inhibitor for trigeminal neuralgia? I was on 70mg a month of Aimovig for a year and it didn’t help anything. I was increased to 140mg a month this past September 11 and I have not had more than 10 days of trigeminal neuralgia pain since 9/17/2019. I had been in a bad 3 year period where it ruled my life and when I took that shot I was in a particularly bad week. It was brutal. It took a few days to take effect.
I had been taking 800mg of tegretol a day plus dilaudid, Valium and baclofen. Also some MMJ. I was close to capitulating and calling a neurosurgeon.
I’ve been down this road before with my long history of headaches and then ATN. I’ve had as much false hope as anyone only to be crushed when something didn’t work. I’m positive it’s the Aimovig bc some months the shot seems to wear off a few days early and I begin to get ATN again. I’ve even had to take pain meds a few times. Yet a few days after my next shot (every 28 days), pain goes away. Not just some of the pain, but all of it. Not even a faint feeling of it.
I have been completely off of tegretol - for the first time in 10 years - since Christmas. I’m taking pain meds for stress related headaches 1-2x a week vs 2-3x a day x everyday for the past 3 years. Haven’t taken baclofen in months. Still on Valium but am slowly cutting back. I actually saved half of my pills last month.
I know different things work for different people. I was one of the people with migraines that none of the standard drugs except for steroids worked for.
Anyway I hope this helps someone. I’m 51 and have 2 stale but useful masters degrees. I had to move home and become a caregiver for my parents but for the first time in a while I feel like I can work again, at least when this disaster ends.
PS There’s another CGRP inhibitor that is different from the drugs in the Aimovig class. It’s called Ubrelvy (iirc) and can be taken with Aimovig or on its own. It’s for headaches but inhibits the same neurotransmitter that Aimovig does, preventing or inhibiting the trigeminal nerve from transmitting pain signals to the brain. I have tried it for headaches but not yet needed to for my ATN.