New here and have questions

Hi all!
I am new here and am hoping I can pick your very knowledgeable brains as I am desperate for any information that can help my situation.
I am a 29 year old female and have had a chronic daily headache and severe episodic migraine since the age of 15. Over the years I learnt to manage this and lead a completely normal life. However, in December 2021 I suffered a concussion and ever since have suffered from severe dizziness that is constant 24/7 and severely inhibits my ability to do even basic tasks. After over a year of suffering I was finally was able to see a neurologist to try and get to the bottom of what was going on. I’ve now been diagnosed with vestibular migraine and my neurologist’s opinion is that the the concussion has aggravated my previous migraine problem and has triggered vestibular migraine. My neurologist has started me on Emgality but has said if it doesn’t work we could switch to Sandomigran/Pizotifen. I have been taking Emgality for over two months now with no improvement in my dizziness. I’m still holding out some hope that it will work as I understand it can take around three months to see results. However, I am keen to hear how others have found Emgality and if it has helped with their VM (and if so how long it took to see results). I have to return to work next month which is a daunting prospect since I have had no improvement in the dizziness yet so I’m basically on the search for as much information as I can get to try and get some improvement before I have to go back to work. I have read others stories and it seems like a lot of people have had success with Sandomigran/Pizotifen - is anyone taking both Emgality/Sandomigran? Wondering if this is an option at all.
Thanks in advance

Hi Bee, so sorry to hear your story. I don’t take Emgality but I did take Pizotifen for over a year. It really helped me get better. It was improvement each week over many months to a year. I now take Avovy - similar to Emgality, for maintenance. It helps my migraine headaches but not the dizziness.

I’ve been thinking about this for a while and many people have asked about CGRPs and VM. My personal opinion is they prob won’t help VM on their own. Go with the piz in combo is my suggestion.

Hi @Belindy, thanks so much for your reply! So glad to hear that Pizotifen helped you get better! Yes I think I agree with you, I am skeptical that anti CGRP meds work for VM. Do you still get dizziness now that you are no longer on the Pizotifen??

Occasionally yes. This sort of never leaves you. Some days I don’t notice it, and others days I notice it a lot. It waxed and wanes… probably based on my period now.

It’s awful awful awful to have, so much worse when it’s chronic. I’ve changed my lifestyle drastically too, no alcohol, no caffeine, no carnival rides, regular sleep, heaps of vitamins. I hope it all helps to keep symptoms at bay. I get bppv too and I suspect this is what triggered the whole thing off.

It does take time to get better. It won’t be overnight.

Hope things improve for you

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Agree the chronic dizziness is just awful! So good to hear you have some dizzy free days :slight_smile:

I suspect the prime cause of your problems is in the inner ear. So I suggest you read up about potential otological causes (eg perilymph fistulas from slight knocks on the head not causing brain damage), and try seeing an experienced neuro-otologist.