Something has changed in my brain.

[connie26]

Sixteen months ago, I went to bed and woke up with the most extreme dizziness. Everything was bouncing and I couldn't walk or lift my head off the pillow without vomiting. It carried on until I ended up in A&E the following day. CT scan was clear. I had anti sickness and fluids and eventually the sickness stopped. Since then, my world has not been the same. Walking is unpleasant as I feel constantly slightly dizzy and unbalanced. Everything I look at when I'm walking moves slightly. Going up and down the stairs feels a bit hazardous and I have to concentrate. Postural vertigo tests are clear. Vestibular neuritis may be the cause apparently but an MRI scan on my left ear showed nothing abnormal. I've been given exercises to do but it's exactly the same as it was the day after it happened. I feel like I have no energy. I'm wondering whether to go for a private MRI scan of my whole brain. Hospital have just left it that there's nothing they can find so that's that but I'm miserable and also worried that it might happen again but even worse.

Yes I second this! I also have hearing loss on one side which is how my MD started.

The fact the OP isn’t complaining about hearing issues makes me think she has vestibular migraines!

🤣

Place marking as I have similar problems

''Dizziness has many possible causes, including inner ear disturbance, motion sickness and medication effects. Sometimes it's caused by an underlying health condition, such as poor circulation, infection(including past covid infection) or injury.''https://www.mayoclinic.org/diseases-conditions/dizziness/symptoms-causes/syc-20371787 I assume they already ruled out POTS: https://www.ksat.com/news/local/2023/03/29/disorder-causing-dizziness-fainting-now-associated-with-covid-study-shows/ https://www.ncbi.nlm.nih.gov/books/NBK325/

Thanks very much for your replies.
I don't have any hearing issues and my eyes were tested and the optician said they were fine.
I've started taking supplements called 'neuromind' to see if they help but so far I can't tell a difference although it's only been a couple of weeks.
Tests for BPPV were negative. It was so sudden when it happened although I did have a slightly similar experience 12 months prior during the night. It feels like I've had some kind of stroke but without the physical effects.
I'm wondering if I have a full MRI of my brain, it might reveal something even if there's nothing they can do to fix it?

This sounds like what happened to my mother after she contracted bacterial meningitis and it was due to what this poster has said and she wore special glasses with a prism for a while.

It could be worth going a specialist option route.

I have the dizziness, absolutely horrible. Light headed and breathless too. Sympathies x

How's your blood pressure? You can get dizzy with low blood pressure and weird sensations with high blood pressure sometimes.

My father had something very similar sounding which was misdiagnosed as labyrinthitis at first, but eventually they concluded he had had a minor brain stem stroke due to dehydration from a vomiting bug.

Sorry you are experiencing this, it is an awful thing to live with every day.

I had this due to COVID infection. Was diagnosed with labyrinthitis, vestibular neuritis and BPPV which caused vertigo. Occular vestibular exercises helped but very slowly, it took over 9 months for it to be better and I still get return of mild vertigo when I get a virus or a migraine 3 years later. I took prochlorperazine for a while when it was bad just so that I could function, but long term it slows the recovery so I stopped. Sumatriptan taken early in a migraine helped manage the worst episodes of spinning, visual disturbances, lights and tunnel vision that came with the onset.

I also have hearing loss and POTS due to the same infection. POTS management helped me massively so that might be worth looking at re: improving the dizziness standing and breathlessness, although it didn't help the visual issues when turning my head or looking up and down.

The CT of your brain should have shown up if you had a clot or a bleed on the brain which caused a stroke.

I should also say I developed Long Covid at the same time (acute stage was room spinning and vomiting as part of symptoms) and having no energy, being fatigued was a feature of this, is this something you have considered? Some people with very mild COVID infections end up with Long Covid and you can be referred to Long Covid services without a positive test based on history and symptoms by the GP after 3 months which may provide some other avenues of support for fatigue and dizziness.

One of our best mates had this, turned out he had labyrinthitis

I've DM'd you.

I got this after taking the hormonal contraceptive. Had to stop after 2 days of swooshing around....
Could it be that?

I had exactly the same. MRI and ENT consults were all fine.. Low iron was put down as one cause but it’s still going on and that’s several months later. I sympathise as it’s a really unpleasant feeling.

Your balance system has been damaged by an unknown cause , you need to ask your GP to refer you for balance function tests , but what I suspect has happened is that your brain has failed to “compensate “ for the damage caused , which leaves you with a constant feeling of imbalance .
it’s very distressing but can be helped with vestibular rehabilitation exercises which re train your brain to ignore the “dizzy “ signals .

MRI will not diagnose vestibular damage , you need specialists vestibular function tests , they aren’t pleasant but once you know what’s going on you can work to get better .
This happened to me 20 years ago , I sourced a private specialist after being fobbed off by my gp , balance function tests showed my left vestibular side completely damaged .
I had vestibular function tests which really helped although if I’m tired/ill it stressed I do get symptoms again x

Does your local hospital have a falls clinic? Might be worth checking that out.
There’s a fantastic guy in the North East who specialises in vertigo symptoms, he works for the NHS but also does private clinics.

Have they checked for peripheral vestibular disorder

The same happened to me. Came on fairly quickly. Lasted about 6-9 months. Anti-depressants massively helped as the brain gets tired trying to balance itself and they provide the brain with much needed energy. Queen Square Neurological Hospital in London did the full gamut of vestibular tests. As PP says, not pleasant but with the anti-depressants and exercises it went away and hasn't really come back.

I had exactly this too. It has also left me with tinnitus. I was so light headed and unbalanced I could barely function for months. Tests revealed bilateral vestibular hypofunction and vestibular rehabilitation exercises were key. I saw a balance physio privately who gave me exercises and gradually over several weeks I improved, but was physically ill and couldn't work for three months. You can Google them. They're not pleasant and involve invoking symptoms.
I dread it returning. Took Betahistine for a short while and cyclizine although meds are not really encouraged - you literally have to push through to allow your brain to learn to compensate.
I've also had vertigo twice. It wasn't the same.

I have an absolute plethora of shite conditions. Every day is like this for me and worse. All my MRIs were relatively normal, although I have issues with my neck.
I saw a neurologist regards my neck - I have Ehlers Danlos Syndrome and we often have shitty spaghetti necks. Anyway he ordered a CT Venogram to look at the blood vessels. It showed a load of things and MRI never did. If you can afford, it might be worth getting one of those.

I had almost exactly the same thing happen to me. Four years ago, out of nowhere while on holiday in Slovenia, I developed tinnitus in my right ear and was suddenly on the floor with rotational vertigo. I was so sick that my DH called and ambulance and I went to hospital. It took 24 hours for the vertigo to pass and weeks to regain my balance. At the hospital, the ENT diagnosed menieres, which terrified me. While I’ve never had another attack, I do frequently suffer from being off balance, which is often accompanied by a motion sickness feeling and pressure in my ear. I’ve noticed it’s worse in the spring and summer, when we have stormy weather. I’ve been to the ent since and they have tested hearing etc and says that it’s impossible to actually diagnose menieres with only one attack and no hearing loss, so while I may well have another attack on the future, at the moment it’s a mystery. Super interesting to hear that low iron could cause the dizziness though…

Look up PPPD - I had this after Covid related vertigo x

Could it be labyrinthitis? I had that once. Woke up, got out of bed, fell over. Tried to get up, fell over again. Felt really nauseous. As it cleared up, it felt like I was walking on the deck of a ship or moving train. Inner ear infection. Very weird.