New Daily Persistent Headache

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

@quazar I am on 140mg Aimovig. I began to improve 4 days after the medication was administered. I am also experiencing side effects. I didn't experience them when I was on 70mg for 2 months but, I also had only 4 migraine-free days out of 60 days on 70mg. The 2 competitor meds - which both work on the CGRP itself rather than the receptor - are not known to have the constipation or muscle cramping produced by Aimovig. Emgality does have a problem in that Lupus patients taking a specific medication can't take Emgality because Emgality increases the toxicity of the Lupus medication. Because I have TMJ and nerve damage, the Aimovig muscle cramping can be quite debilitating. So, I'm trading migraine relief for intense nerve and TMJ pain. There is no rhyme or reason with regards to the side effects as they pertain to me; I haven't narrowed down a reason why some days I experience no cramping while other days it's mild and other days it's severe.

I had to request that Aimovig be added to my Formulary. The insurance company approved it as a Tier 4 medication. All 3 CGRP meds are priced at $6900/year out of pocket. But, I'm willing to bet that individual insurance plans won't cover all 3 OR won't cover them at the same rate. That would, effectively, make one medication more affordable to policy holders.

I think that the Aimovig side effects would be more tolerable for patients with no comorbid illnesses. Those with digestive issues, like gastroparesis, would probably have a difficult time staying on Aimovig. If I could convince my insurance company to cover Emgality, I think I'd switch next month.

Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90 days apart. After that no further Botox if no relief.

Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month and it did help reduce the frequency of the headaches but caused me severe nightmares. I received a sample of the Emgality last week but messed up with the syringes. I lost all of the medication before I could inject the needles.

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

@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.

@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.

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?