If you get NHS Botox for migraines how long have you been getting it?

[brightonbabe86]

I started Botox for migraine last year after years of failed treatments and finally I feel like something is working for me. I'm getting something of myself back after years of chronic migraine and its like a miracle to me.

However I've been made aware that once your migraines are no longer considered chronic i.e. less than 15 days a month over 3 months so a botox treatment cycle they stop giving you botox. This is crazy to me as if it works shouldn't you stay on it? All my past experience has shown that if I've used anything that helps even a bit once I've been taken off it I just go right back to where I was i.e. chronic migraine in a matter of weeks or a couple of months at most. I've been dealing with this since childhood and its taken so much from me.

Has anyone been getting Botox on the NHS and if so how long are you able to get it for? How many cycles have you had?

Hi op my friend has them been now 6 years along with a nerve block,

Why would they stop the treatment if it works, doesn't make sense does it, could it be cost ?? You need to ask there reasoning and what they will put in place, its bloody life changing, good luck op,

I've been having it for chronic migraine for 12.5 years, it's been life changing for me

Is this on the NHS?

Does she get it through the NHS all that time? Perhaps it varies by area, I will try and get the hospital to clarify this as the way it currently looks is a bit bonkers.

Yep nhs, please put up a fight op, it does sound like a funding issue in your area maybe

I too suspect it might vary with health authority (which is morally wrong IMO) but for example this leaflet from Southampton (dated 2025) says that they give it for a year (if it's working) and then stop treatment for 6 months and you keep a headache diary during that time and then have a followup and it implies you go back on Botox if it's worsened. But it's unclear whether you then go back on it for a year and repeat or you just go back on it forever. Latter seems unlikely given how expensive it is.

https://www.uhs.nhs.uk/Media/UHS-website-2019/Patientinformation/Brain-and-spine/Botox-for-the-prevention-of-chronic-migraine-3896-PIL.pdf

I'm not sure I would expect to be on it forever but taking you off it as soon as it starts working seems crazy. The Botox is actually cheaper (including appointment costs and units of Botox) per week than the oral medication I was on prior to Botox and people can stay on that long term and prior to that and it is also cheaper than the preventative treatment I was on prior to that for a number of years.

I will speak to the clinic next time I am in to see what they say as perhaps it is on a more case by case basis but those are the basic guidelines.

Yes, although outsourced to a private doctor

About 8 years now,I also had ajovy for a few years, now I have Botox every 12 weeks and take atogepant daily

Can you have ‘normal’ Botox for this ?

I have failed both Vydura and Atogepant already, I've never done well on any of the CGRP type medications unfortunately. The triptans do work but I can only take 3 a week maximum or 12 a month and I had been having more than double that amount of migraines. Its good to know that there might be a way to stay on it longer term if it works.

I think you can get it privately but its a lot more botox than for general cosmetic use as a lot of it goes into your shoulders, neck, back of head and it's very expensive privately. I simply can't afford it unfortunately.