My first diagnosis was from an oto-neurologist and I told her about one migraine I had had (one) and she used that as evidence that I was a migraineur. I didn’t find that convincing at the time and was very skeptical about my diagnosis, but that was also partly down to other factors which you can read about elsewhere.
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I’ve always been skeptical lol. I do have migraines since 16 but they were incredibly sporadic and I could go for years between them. I did notice an increase between 2020 -22 when I got diagnosed with hypothyroid. I was then averaging 1 or 2 a week.
But crucially mine were never vestibular. I just had migraine with aura. I never had any balance issues, vertigo, tinnitus. And most of the medical sites about VM state VM is normally episodic, that the vertigo and other symptoms can last between 5 minutes to 72 hours. They say nothing about constant 24/7 balance, disequilibrium, or dizziness. I just had a migraine one day and the balance problem started the next. Crucially I never had motion sickness as a child which is common with those with VM.
I’ve had a brain MRI, hearing tests to rule out Meniere’s. I have no hearing loss, tinitus. I think part of my ongoing scepticism is that I’ve tried all the usual suspects in migraine prevention and none have worked. If it was migraine related I would have expected something to have worked or at least alleviated it.
I kind of feel my NHS neurologist leapt of my balance problem and history of migraine. As we know the NHS is vastly over worked and hospital doctors just dont have the time to spend with patients and cynically I feel they send us off with a diagnosis just to get rid of us and reduce waiting lists.
Interestingly though my Vestibular Physio did say my repeated migraine attacks could have attacked my Amygdala and left it over sensitised and traumatised. I’m not completely ruling out VM, or MAV but my hope is if I see a Neuro Oto they can consider other conditions. And if they conclude it is migraine then I can concentrate on trying to find something to manage it.
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If migraine is the culprit for me it was one migraine (when I went chronic) and that resulted in my tinnitus which started two weeks into my condition.
The one major phenomenon that makes me think it is neurological and probably something like your Physio describes is if I go on a phone call with my mobile phone my tinnitus completely disappears until about 10 seconds after the call (if I use my left ear for the call). Beautiful silence for 10 seconds. It’s almost like one threshold has changed, and if only that threshold would reset my tinnitus would go completely.
Given my vestibular symptoms have pretty much resolved (unless I have a relapse), I wonder if my auditory symptoms could also resolve some day.
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Bear in mind that the usual medical information about VM that can be found on websites is massively outdated. VM can and does quite often present as 24/7 dizziness with or without headache. My own VM has never been episodic and I’ve never had classical migraines with pain. Never had migraine before VM started.
How many medications have you tried? I tried 5 of the typical migraine medications with no success until I found flunarizine which has been the only thing to work so far.
I’m not saying you definitely have Vm but some of the reasons you gave for doubting it can be explained. Pppd is also something to consider, which can be triggered by migraines or any cause of dizziness.
Thankfully my own experience with consultants has been mostly good. I see Dr Zermansky at Salford royal. He’s a headache specialist. He is also available privately but he’s not a vestibular specialist per se. He always spends as much time with patients as needed. Last time I visited the hospital I had to wait over an hour to see him because he spent an hour with the previous patient who was “complicated”. That was no fun for me having to wait around but good for the other patient who got so much dedicated time. In my experience consultants take as much time as they need, it’s GPs who rush. My experience with GPs meant I was misdiagnosed for seven years and felt fobbed off. It was only when I saw a different GP and actually suggested VM to her that I got a referral to a neuro-otologist. (He then diagnosed VM and referred me to Dr Zermansky)
Anyways, I do hope you get a diagnosis you are comfortable with soon and find some effective treatment. Dizziness from any cause is never easy to treat but it can be debilitating.
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Thanks for replying. I’ve very much considered PPPD, as felt it fit my symptoms more but using both an SSRI and SNRI did nothing and they are the usual treatments for 3PD. I’ve also done CBT which was an utter waste of time.
From what I’ve read ( a lot lol) 3PD normally has a trigger, either a vestibular condition like labrynthitis, Vestibular Neuritis, or BPPV etc which you dont fully compensate for after recovery or depression/ anxiety or a panic attack. I had none of those. Mine was spontaneous, it came on the day after a migraine. Which wasnt vestibular in nature.
Unfortunately my experience of the NHS consultants hasnt been positive. I felt my Neuro just diagnosed me with VM because of balance/ dizziness issues and because I have a history of migraine. Which if it was VM should have responded to one of numerous drugs I’ve tried.
The ENT I saw was even worse, he overran with the patient in front of me massively ( over an hour). I wasnt too bothered but some of the other patients were getting royally hacked off and started complaining.
When it was my turn he conducted some basic tests, hearing, Romberg test, tuning fork one on the forehead, shrugged, offered to refer me to vestibular Physio. It felt very rushed because he had a waiting room full of annoyed patients. His clinic letter concluded chronic VM which caused 3PD, but no suggestions of medication. That was October 2022, I heard from the Vestibular Physio in July 23.
I’ve done the Vestibular Physio and balance exercises , but its all phone based as she’s in Oxford so limited really as to usefulness. Its why I want to see a specialist who can take their time, not fob me off, not pass the buck to someone else. Who can give me a conclusive diagnosis which I can then use to try and get better.
I worry its not VM then I’m wasting time taking drugs which are never going to work. I’ve even starting worrying its something like unilateral/ bilateral vestibular hypofunction which damages the balance organs in the ears.
I’ve seen Flunarizine is often touted as very good for VM but its not licenced in the UK, apparently the manufacturers never bothered applying for one. So has to be imported and can only be prescribed by a hospital consultant. How do you find it, as it is one of a handful of meds I havent tried (a dwindling list).
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Yeah Flunarizine can only be prescribed by a consultant but I usually get a 6 month supply of it at a time so i don’t have to worry about monthly repeat prescriptions. I’m so thankful it’s available in the UK, unlike America where it’s not allowed. It is the only med that’s worked for me out of all I’ve tried. It’s made a huge improvement to my symptoms over the last 12 months (my dizziness was very severe, I was bedbound and housebound). I still have mild dizziness and am hoping even that too will fade since I upped the flunarizine dose a month ago. There’s still room to up it again if need be. I’ve been on flunarizine twice now. The first time it caused parkinsonism (which it is well known for) so I had to come off it, but as soon as i did the vm came back. I tried other meds (including the new anti-cgrp meds, i don’t know if you’ve tried those) which didn’t work so i went back on flunarizine. It’s caused significant weight gain (another common side effect) but I consider it worth it because the benefits outweigh the negatives. I noticed first improvement within a month but it takes a long time to gradually get better. It’s 14 months and counting at the moment.
I’ve tried Setraline as I originally thought it was PPPD and Sertraline was considered the best treatment, but I couldnt tolerate it. Then Propranolol but its contraindicated for asthma, which I have, Next were Amytriptyline which gave me tremors and tacycardia, ditto Notriptyline. I think I struggled upto 25-30mg before throwing in the towel. Then I tried Candestarten which lowered my BP but did nothing for the VM.
I did persevere on Venlafaxine surprisingly, it was the best one for side effects, apart from daily nausea for 5 months, started really low and slow and eventually got up to 112.5mg a day. I think it certainly helped with some stuff like visual vertigo and lessened the migraines, but did nothing for the balance or dizziness.
After about 11 months I decided it wasnt worth continuing and titrated off it. Since Jan 2024 I’ve been med free. And for a while I honestly thought I was a lot better, not perfect, I’d still get times when I’d feel off, more noticeably as the day went on.
Additionally I’ve tried Certrizine, Promethazine, Betahistine. I’m now on NHS waiting list for migraine clinicwhere I will be asking for CGRP drugs, but its a 6 month wait. I’ve emailed Neurology to see if there is anything I can be prescribed in the interim, they’ve said they’ll pass it on to the specialist nurse.
I’m also looking at private options as this might be a valid choice. Currently just using Clonazepam as a rescue remedy. Not ideal but it works and frankly I’m past the point of caring about addiction worries.
I’m pleased you managed to find something that helped. I think I would feel happier knowing if its VM or PPPD or something else. As they do have different treatments.
I’m sorry you’ve tried so many things that haven’t worked. I too tried Amitriptyline and Nortriptyline but both made my VM worse. Also tried gabapentin and topiramate but they also made me feel worse. Couldn’t take propanolol because of asthma. I tried Ajovy (an anti-cgrp med) which didn’t make me feel worse but didn’t help either. The only thing that’s helped is flunarizine.
I hope you find a consultant soon and get a diagnosis which helps you feel better. Have you tried doing a migraine diet? It didn’t help me but it’s worth giving it a go to see if it might help you. Good luck!
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