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New Daily Persistent Headache

Chronic Pain | Last Active: Mar 27, 2023 | Replies (140)

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@msb18

@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just 30% which makes Botox unaffordable. Anyway, 3 things matter about with Botox for chronic migraine - training, dosage and apparently there is a test that shows who would do best with Botox. I'd have to dig through my information to find out what it's called. The gist of it is that people with a certain amount of hormone or something (sorry, in midst of awful back to back migraines) do much better with Botox than those with lower levels in their system.

Botox must be administered to 31 locations - forehead, temples, scalp, back of neck and upper trapezius muscles. Hitting the exact points matters. Also, the amount total administered as well as the amount administered to specific locations matters a lot. I received 200 units per session. The doctor injected all 31 locations and then went back to the most painful spots for my migraines and injected more into those spots (right temple, above right eyebrow). Holy moly, did it hurt but, it hurt because I was in the midst of a migraine at each appointment and being injected into certain spots was bad. But it was worth it.

My results - two solid months with zero migraine pain days. Now, I still had other migraine symptoms like dimmed vision and slurred speech. But to have no migraine headache for 2 months after each dose felt like a miracle. My muscle movement didn't return until a bit more than 4 months after my last dose but pain relief - for me - was only 2 months. I would, in a heartbeat, restart Botox if my insurance would cover it at even Tier 4 ($100 out of pocket per session as opposed to Tier 5 of $840 out of pocket per session).

I hope this information helps.

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Replies to "@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just..."

I received one Botox injections. It seem to help for a couple of weeks then I started having the two migraines a week. The neurologist said it may take two series of the medication for it to work. I'm going to try it again. If it doesn't work I'm going to try Emgality.

Thank you @msb18. I have the 31-site chart & hopefully those sites are the ones the neuro plans to inject. We are cautiously hopeful - there are several published case studies on good outcomes for folks with NDPH. But as @dhramsey found, it is not always effective for everyone with this perplexing disorder. I appreciate the recent posts about Aimovig & will ask the neuro about that as well.