Anyone experienced brief vertigo episodes with lingering dizziness and ear symptoms?

[OnNaturesCourse]

Hi everyone.
I’m hoping to find people who have experienced something similar while I’m waiting to get this investigated. I’m not looking for a diagnosis, just to hear other people’s experiences, what tests you had and whether you eventually got any answers.
Around 10 months ago I started having episodes of vertigo that have happened only a handful of times, usually months apart. The first episodes came completely out of the blue and since then my symptoms seem to have gradually evolved. The vertigo itself is usually very brief, but afterwards I can be left feeling like I’m on a boat for hours or longer, and moving my head can make it feel like my brain has to “catch up” with my movements.
Alongside this I’ve developed fluctuating tinnitus, ear pressure/fullness, occasional headaches and some odd sensations around my face and head. The first vertigo attack was also what triggered a lot of anxiety for me, so every recurrence now feels frightening.
I’ve put a much more detailed timeline and symptom list in the next post, as I didn’t want this first post to become too long.

Your post jumped out at me. I had sudden onset of tinnitus last year. Then luckily that cleared up and I have had post natal drip since then. Dr says it started from a virus. I suspect COVID last June. Just because of the weird symptoms.
I've been to ENT who just ruled out tumours etc.
Bit frustrating for me as can be quite bad. I'm constantly having to swallow at the back of my throat. Nothing is blocked or congested. Just this over production of thick sticky mucous.
I think tbh COVID has a lot to answer for.

Yes I developed this in my early 40s. Triggered by moving my head. Worse mid or late cycle. I went to a GP and was prescribed a nasal spray. I haven’t had it for ages now but I do think it was BPPV. I have dodgy ears most of the time and a nasal drip which might not have helped.

My dad has similar symptoms. He has Benign Paroxysma lPositional Vertigo (BPPV). Its something to do with ear crystals.

@RebeccaWh i have briefly looked into the migraines. I had normal ones when I was teenager and I’d be wiped out for food 48 hours with them. I have found the symptoms can be brought on by busy environments too so I do wonder if that’s something. I was promised a ENT referral last year but because I get big breaks between attacks it keeps being put off as it’s not class as continuous in nature which is ridiculous

@Dutch1e dizziness in all forms can be so scary and I totally understand your daughters panic. I have found myself leaving places not attending things and having fight or flight more than ever now. It’s so scary

@Miffsmumandslave 100% feel my anxiety is playing a big role in it now but it definitely wasn’t at the start and those symptoms are still present. It’s just hard to work out true new symptoms from the anxiety now too.

@Potooooooooes inwas given a anti sickness but can’t remember the name of it could that be it ?

@Datgal rhat sounds horrible and uncomfy. I did have Covid twice way back when it all started so it could be that I was carrying it when my parents had it and I just didn’t have symptoms. It’s a horrible thing and the impact of it long term is mental !

@Handeyethingyowl have you had any testing etc done or has the Gp just based off your symptoms ?

@NameChangeAgain48 does your dad get dizzy or does the room spin for him ? Does he get any ringing etc ?

Yes. I get this every so often as you describe. Since childhood. Only happens when i am laying down though.

Developed tinnitus during covid, which I still have. No noted increase in BPPV episodes

I was off work for a year with similar symptoms and the tinnitus was the thing that confused all the doctors. Symptoms were fainting/dizziness/vertigo, tinnitus, headaches, fatigue, palpitations, seeing floating black spots or spiders and some others.

I was eventually diagnosed with autonomic dysfunction (essentially the autonomic nervous system stopped working properly) causing all the things that happen in your body without needing thought - like breathing, blood pressure etc - to go a bit haywire. At the same time I was diagnosed with chronic fatigue syndrome. I’m interested that you found that reaching above your head triggers your symptoms as that’s a classic autonomic dysfunction sign - the blood doesn’t equalise as it should. It’s similar to POTS but not always triggered by just standing up.

Treatment was respiratory physio, magnesium taurate and low dose naltrexone (LDN) which is prescribed by a private pharmacy as it’s not available on the NHS. I saw a specialist cardiologist called Dr Boon Lim who is the expert in symptoms like this - he has a great website called Stop Fainting which is worth checking out.

In terms of what caused it for me - it looks like it was due to childhood hyper vigilance which continued into adulthood. I saw a specialist psychiatrist called Ritu Kalsi to deal with this.

Hope helpful.

This sounds very similar to my experience many years ago. The ear symptoms, lightheadedness, vertigo, on a boat feeling, brain fog, increasing and decreasing tinnitus, went through hell for a year and a half. 2 x ENTs told me anxiety. Considered BPPV and menieres, but didn’t really fit. Hearing tests normal. I was off work and desperate then met someone who’d experienced similar. This led to the neuro ontology department at Queens square London. I begged to be referred out of area as they are specialists in dizziness with four more years training than an ENT. They did balance tests. Initial diagnosis vestibular neuritis. Did special exercises to retrain vestibular system. Didn’t help.

Then the penny dropped it might be migraine. I had in my twenties experienced a period of dreadful pain in my sinus area but no sinusitis. Migraine can present like this. Referred to neurologist with an understanding of vestibular migraine, got the diagnosis. The preventative medications set me on the road to becoming much less symptomatic. This happened many years ago, and I subsequently developed classical migraine headaches many years later. Like most people I thought migraines came and went but now know they can last for weeks, or months on end. They can also morph and change from vestibular symptoms to pain based migraines. There’s a really good Facebook group called vestibular migraine professional (strangely, it’s not for professionals) with more info if you want it. Hope you find relief soon. It’s really hard to deal with, and don’t let anyone palm you off with ‘its anxiety’ - feeling like you’re on a boat when you’re not without a diagnosis will make anyone anxious.

I had sudden onset vertigo diagnosed as vestibular neuritis.

I have done vestibular rehab twice for incomplete right sided compensation. It helped but doesn't get rid of it completely.

You could look at - menieres (may fit with the ear symptoms), vestibular migraines and PPPD. You can have more than one thing going on unfortunately.

@frazzledsazzle oh wow that sounds horrible but also amazing you got it diagnosed ! Can I ask what you mean by the childhood hyper vigilance?

@ElectricSnail it is just too easy to be palmed off with anxiety isn’t it ? I’ve always had a bit of it but only since this dizziness have I been running for exits and panicking over events etc.

@SilverBlue4 do you still suffer with it or have you just learned to live with the symptoms? I am at the point where even the school run is a marathon

I have nearly all the same symptoms as you @OnNaturesCourse .
I have low blood pressure/ mild POTs.
Long story short, I've been diagnosed with vestibular migraines, I get actual head pain migraines 6-10 times a month, but the vestibular symptoms are much more frequent.

I have it but different to you
Sorry if I missed, but have you got any medication?
First thing to look at is being prone to sinus infection there’s probably something there

I didn’t really get an explanation, but I did get medication and I saw ENT

Have you looked up vestibular migraines it sounds similar to the ones i get. Misdiagnosed for years

The VRT eased enough that I can function but I do still have symptoms.

Fortunately I'm not affected at all while driving and
I work from home most of the time anyway - if I had been in my previous job I would have ended up having to leave, no way could I have managed.

The VRT did improve things so I think the diagnoses is correct it's just that it can't fix it completely. I do have other health problems which doesn't help.

I use a stick when I'm walking anywhere and I can't walk far anyway due to my other issues so it's hard to tell which thing is causing what peoblem to be honest.

Similar symptoms and eventually diagnosed with - and treated for - Menières. With daily medication the episodes of vertigo have been controlled but sadly my hearing is now virtually nil in one ear. You say you can hear very well but I'd suggest a proper hearing test, if only to have the results as a baseline.

Much sympathy - a really bad attack of vertigo is awful. Distressing for you and for everyone around you.

you haven’t said how long each lasts for and how frequent and how much impact they have.

anyway I have pretty much all of it and labyrinthitis , bbpv, menieres, sinus problems, olfactory hallucination, significant allergies.

the first I think was BBPV on head rotation when driving and checking junctions, lasted seconds, infrequent. About age 26

then I had what I think was menieres - a piercing ringing in one ear sound disturbances and vertigo lasting less than a minutes.
Then a sensation when shooong when the ground seems to tilt 100 degrees and I was on the floor.

The worst was labyrinthinitis I collapsed at work I could not stay up right. Very sudden- was fine then was not. and had 4 months off. I could not locate myself in space and could not move my head off the floor. I spent a week in bed looking at the ceiling. Fullness in ear and so on prescribed procloperazine age 34

Since then have odd periods of vertigo. One where I was off work for two weeks. I had cinnarazine once and once . Age 38 and 44ksh

I have given up on a diagnosis and treat the symptoms. The most horrendous was labrinthisis

have also had mal de debarquement which is land sickness after having been in a boat or ship.

I now have hearing loss and tinnitus and am wainf for a hearing aid

I had a very similar onset and continuing symptoms to OP's since well before covid. GP refused to refer me anywhere and would only prescribe antidepressants. I paid for a private MRI to rule out anything sinister and one day I might save enough for private ENT and vestibular rehab.

I still don't know what caused these symptoms to start. I never had any ear pain or infections or sinus trouble and I've always had tinnitus anyway. My symptoms don't fully fit vestibular migraine, benign paroxysmal vertigo, labyrinthitis etc.

However from experience, I know my fucked up neck and back muscles play a role because my symptoms improve or disappear with stretching and muscle relaxation (but then I am hypermobile and have scoliosis). Unfortunately cervicogenic dizziness is not a recognised diagnosis for the NHS.

For anyone struggling with long term unexplained dizziness - you have my sympathy. I recommend the steady coach channel on YouTube. It's free and an incredible resource especially if you are dealing with the anxiety that dizziness often causes.

I had all the tests going, nothing was diagnosed - the consultant told me I have to live with it! So I insisted on trying medication for migraine - I was convinced it was vestibular migraine relating to hormones as I have a history of migraine. I started on Amitriptyline and haven’t had any episodes since, this was 6 years ago.

@OnNaturesCourse- it was pretty horrible! I had quite a difficult childhood as my Mum was an alcoholic so I developed hypervigilance (basically being overly tuned into everyone else’s emotions) to manage that - I got stuck in fight or flight. The way my doctor described it, my body just couldn’t cope with being in that constant state. I had no idea anything was wrong until it all crashed - it happened a month after my 40th birthday. The good news is that, with time, therapy, medication and lifestyle adjustments, I am now a lot better - I’ve just given birth to my first child!

I had similar attacks for a few years that were diagnosed as Menieres but completely stopped around 15 years ago and never happened again. So long as I kept my head completely still I would be okay but any movement made me feel like the room was spinning. I was prescribed Propanolol for the nausea but it didn’t seem to help much, it just made me really tired.

My episodes were happening every few days in my second pregnancy. (My first pregnancy I suffered with bad migraines). I was feeling constantly lightheaded and ‘dizzy’ but the episodes would happen suddenly and it would be severe spinning where I could not walk or stand and have to lie down, followed by vomiting, this would last for hours. It would happen every few days through my pregnancy and about 6 months after until I started on Amitriptyline.

i have also had labyrinthitis and other unexplained dizziness earlier in life where I would wake up feeling dizzy. But this was a different kind of thing. It is so hard to explain and there is nothing physical to diagnose so it is so hard.

I’d had vertigo a couple of times (hideous) but during COVID started with permanent ‘light headedness’ and pulsatile tinnitus in one ear. The light headedness was awful, couldn’t drive, couldn’t work. Saw a private ENT and balance physio who diagnosed bilateral vestibular hypofunction and gave me vestibular rehabilitation exercises to do (made me heave) and after three months it gradually subsided. Couldn’t work or drive in all that time. Five years on, the pulsatile tinnitus remains (MRI clear).
Investigated for POTS which was negative. Also went into fast AF at the time and needed a cardiac ablation (but can’t see the link myself).
Have always been prone to travel and motion sickness but this was certainly something else. Never got an answer as to the cause.

He gets dizziness, vertigo, nausea, imbalance, ringing ears and his eyes ho a bit funny like they move too quickly.