IIH sufferer with continuous cluster headaches and whooshing pulsating in head 24/7

[Carrewood]

Hi I have been an IIH Sufferer for over 14 years

With continuous cluster headaches and whooshing pulsating 24/7

Tried numerous meds intolerant to lots and other that make no difference! Even Botox

Consultant has suggested I now try Aimovig

Has any one tried and found helpful ?

Caroline

[Cat00]

I had it for 2 years, helped the first year but not the second sadly...

[Carrewood in reply to Cat00]

Thank you

For your reply , I am still undecided whether the treatment is right for me …the reviews I have read to date are not encouraging!

[Cat00 in reply to Carrewood]

I've been back on Botox for a while, had my 10th round in a row last week and I'm still having really high frequency. It could be that I'm having a reaction to coming off the CGRP's or maybe perimenopause as I'm 47. You just don't know though it could be life changing for you. I have IBS though and it definitely made that worse! Can you get access to the CGRPs that leave your system quickly, bc that would be lower risk?

[Carrewood in reply to Cat00]

Thank you , really appreciate you sharing your experience I hope you will find relief x

[dubstepMaul]

Hi Carrewood. So sorry you are dealing with that. My son who suffers from chronic debilitating migraines was on Aimovig for several years, he thinks it helped some, but it seems to stop working after a while on it. His neurologist now prescribed Emgality which my son only just started this month. With these types of drugs you have to give it a go for at least 3 months. Hope you find relief. Hugs.

[Carrewood in reply to dubstepMaul]

Thank you for sharing your sons experience

I hope he will find relief with using Emgality x