Hi there!
Hope this is the right category.
My Persistent Vertiginous Migraine (the diagnosis given by the first and currently only specialist I have but I prefer Vestibular to Vertiginous) has started to creep back and my GP increased my amitriptyline from 25g to 30g. I asked for a referral to Neurology (Oxford Radcliffe NHS Hospital) to discuss Long Term Management and have a phone appt with Mr M. Cader on 7th Nov 2023 (impressed by early date - I had to doublecheck it wasn’t 2024!)
I want to make the most of the appointment (I’m not sure if this Dr M Cader is the same as the Dr Zameel Cader who specialises in migraines in Oxford?) and am looking for suggestions of questions I should ask, please?
My history so far:-
Diagnosed in Feb 2021 and put on Amitriptyline.
Titrated myself up to 30mg, then down to 25mg about a year ago as my neurologist (had one appt for diagnosis with no follow-up needed) had told me to reduce usage when possible due to amitriptyline becoming less effective);
had a very stressful 12 months but resolving now (been on long-term Fluoxetine 20mg - 40mg for the last 12 yrs);
I’d been getting mild breakthrough symptoms for a few weeks - whirly-headed when I wake up, daily ‘normal’ headaches (used to have these pre-amitriptyline), occasional neuralgia etc etc;
I had 2 quite bad falls (nothing broken) recently which is highly unusual for me and presumably due to balance issues.
Thank you!
As I’ve had no replies, I’m just wondering if there’s a more appropriate category, or way of presenting or laying the question out, please? I know I can be too wordy (ADHD) and that scrolling etc isn’t the easiest thing for MAV sufferers to do!
Thank you!
Hi. I was diagnosed with Vestibular Migraine 6 years ago. Thank goodness medications have come a long way since then. I”m in the US, my insurance made me go through all of the meds to finally get to something that worked.
My husband’s cousin was an neuro outside Orlando Florida (I live in New Orleans) who remotely diagnosed me (before virtual visits were a thing) as having VM, where a local neuro said basically “suck it up, you have headaches” (he came close to being thrown against the wall but I was too stunned) She started me with the big meds at the time - Botox.
Fast forward - I went through Vestibular rehab (physical therapy exercises) which actually helped. I hated doing them because I tried to rush through them, vs letting my brain settle in between. The exercises actually made a change in my symptoms (for the better), I need to get myself to do them periodically as a “booster”.
Add to it the new meds Anti-CGRP drugs and I’m a new person. I’ve tried Aimovig (it worked) but an insurance change made me go to Emgality. That works so much better for me. I also take Nurtec another new med that helps when I have a migraine - I take it with Maxalt as a rescue. The combo prevents the brain fog.
I couldn’t handle any of the triptlyines, downers & I don’t mix well. My personal recommendation is to do Vestibular exercises (the moving head side to side and the letter B moving in the opposite direction), the other is standing on a foam pad while moving head up & down while focused on a spot on the far wall. Real simple things but they do help, just don’t rush.
For meds, ask for the new anti-cgrp meds and Botox. When the Botox & Emgality wear off at the same time, my heads increase. So I know they work together. Definitely check into vestibular exercises to help with your balance, they are “cheap” and can’t hurt.
Hi! Thank you so much! That’s really useful info. I’m glad you are at a place now where you have found meds and exercises that work for you. I shall definitely try the exercises you recommend.
Thank you again for taking the time to reply - much appreciated
Having experienced falls myself during a vestibular relapse, I would expect Mr Cader will want to look at both vestibular rehab and possible medication changes or dose increase if you’re coping with your current meds. Trying to think of the sort of things I asked when I was relapsing! I think I went through all my symptoms and my history, and said that I needed help to get back on track. I also got referred back to Neurology for a repeat MRI as my relapse was covid induced so they wanted to check for any potential damage. I would ask about supplements and possible lifestyle management that could help as well - although my Neurologist is more on board with that than my vestibular consultant! Re the vestibular rehab, personally I would wait until you speak with the specialist before doing any exercises. Given you’re having falls, your vestibular system will be super sensitive and the last thing you need is to inadvertently make things worse. When I had falls, my rehab physio started me right back at the beginning again - I’m 2 years on from then and am only just moving to do the more challenging exercises involving spongey surfaces and head movements to letters etc. Good that you have an appointment as falls are definitely something to investigate - good luck and hope the appointment goes well!
