Chronic Vestibular Migraines Advice

[yoshiro]

I’m 24 and have been off work since Jan 2024 with unexplained dizzy episodes with a load of other horrible symptoms, these were diagnosed in March 2025 as Vestibular Migraines and are a lot more manageable now I know what they are. I’ve been trying to read up about how to help myself but I’m nowhere near as independent as I used to be. I’ve had one appointment with the neurologist when I was diagnosed and have been on the waitlist to speak to one again for the past few months. They essentially just gave me the diagnosis and 40mg propranolol per day but absolutely no guidance on how to live my life or cope. I was wondering if anyone could recommend any good resources or support groups? Doing much better than before diagnosis but would love to learn how to cope as best I can.

There’s a few groups on Facebook. Vestibular disorders uk has been helpful for myself. It very much feels like you get a migraine diagnosis and told to get on with it. I actually paid for some vestibular therapy to help me get my balance better. It did help a lot x

@Showerflowers Thank you so much, I’ll have a look now! I agree :( I’ll look into the therapy too, thank you x

Have you tried keeping a food diary to see what triggers them? There’s also Vestibular Rehabilitation Therapy with either a physio or audiologist. If it’s related to inner ear problems which it might be, ENT involvement might be appropriate, though I realise the wait times involved.

There’s also headache clinics within most NHS trusts.

I work within a clinic setting which includes the above specialities and though I don’t claim to be an expert, I know we see people in ENT with the above.

Treatments delivered within our headache clinics include greater occipital nerve injections, Botox, injection (very new and I forget what it’s called, sorry, prescription of Triptans etc

Also, keep a diary of times and severity and length of symptoms to see if there’s any pattern.

good luck