Has anyone had erenumab for headache with post concussion?
My neurologist suggested this months ago after I was struggling with daily headaches following my concussion. I haven't tolerated any other meds - side effects were generally appalling, and I haven't tolerated almost all other meds for other things either. I'd been having frequent, often multi day (at worst, about 14 day) migraines before my concussion, which came and went.
Tbh, nine months in, I'm still having headaches but they're mostly a (in some ways helpful) sign of fatigue, and a very different type of headache. That's not to say I don't get migraines - I still do occasionally, plus I often have the sort of headache that feels like it could bubble over into a migraine but often doesn't. (The other migraine symptoms, like confusion and vertigo, are harder to identify as distinct from normal PCS life now). I'd say most of my headaches now feel like a tension or fluey head, less often like that inflamed eye socket feeling I associate with migraine. I also have possible MCAS and possible POTS, which can also cause headache - my neurologist has shown no interest in these (or really anything to do with post concussion, very frustratingly - he even dismissed the idea of dysautonomia - just the headaches).
I'd therefore been thinking of turning down the erenumab injections. My neurologist had also mentioned a possibility of them causing dizziness, and I'm in vestibular therapy at the brain injury rehab unit so really don't want to mess with that. I can't find any mention of dizziness online though.
I had tried to cancel my appointment (amongst other things, I'm struggling to manage to go to three different medical appts as well as do my job and do rehab exercise and physio!!) but they were very pushy and persuaded me to come in for a chat.
This is all a very long winded way of saying - has anyone else had erenumab for post concussion headache, particularly those who tolerate meds poorly, and how did it go?
I can't find a lot about it online, and frankly I've often have doctors tell me things are well tolerated that make me feel like I've been tranquilised or which turn me insane. There are some trust issues now. Of course I don't want to turn down something if it might actually help...
Thanks.
