Starting to worry this is neurological

[Anonymousxo]

I've posted a good few times about this now but I feel alone in this matter, I keep having episodes of dizzy spells and I don't mean spinning, more like swaying/on a boat sensation and my eyes have started to go a bit funny when it happens, it's almost like I'm about to faint. Blood pressure is fine and heart is also fine.
I'm also suffering from headaches on and off and my ears feel blocked however ear has been checked and looks normal - I'm booked in for an MRI on inner ear and audiology appointment with ENT.
Had an appointment with community ENT and all balance tests were normal.
Can someone tell me if they have experienced what I am experiencing, it's consistent and so debilitating, I get worried to leave the house because of the episodes, although I do....
I'm so scared, I keep thinking it's to do with my brain instead of my ears :/

@TaraR2020

Vestibular migraine?

Can that be constant? It never goes away and gets worse at different times in the day

@ThatSunnyCorner

My 'seasickness' turned out to be vestibular neuronitis (think it's more commonly called neuritis these days). I felt so ill it was awful. It hasn't ever gone away fully but I can manage it.

No-one can tell you what's going on, but there are plenty of diagnoses that aren't sinister. Best of luck with getting a diagnosis

This is what people often mean when they talk about labyrinthitis. It can go on for a lot longer than 2 months - the fact you have had the symptoms for a while definitely doesn't rule out an inner ear problem, OP.

You are having an MRI, so hopefully will know more soon.

I have similar, not often thankfully but my dr told me it's my ear (I have reduced hearing in one) and peri menopause can cause it too

@gogohm

I have similar, not often thankfully but my dr told me it's my ear (I have reduced hearing in one) and peri menopause can cause it too

My hearing seems ok but everyone is always telling me that sometimes they have to talk a bit louder cause I won't hear so I'm curious to know whether my hearing is ok or not.

Noticing my head keeps swaying side to side as if I am losing my balance, sometimes I think it could be vertigo but I just don't have that spinning sensation that comes along with it

@Anonymousxo yes it can be
See how you're ent conduct goes but you might to try for a neuro one afterwards

Sorry only just seen your question. The swaying boat feeling was constant and occasionally more severe dizziness. I also couldn't walk in a straight line - I would always veer slightly to the right. I was sent for vestibular rehabilitation before I was diagnosed but obviously it didn't help much. The tumour was on the brain stem and was pushing my brain over to one side thus causing the dizziness and inability to follow a straight line.

I had these symptoms with severe B12 and foliate deficiency

I felt so awful that I thought something was seriously wrong with me, or I was going mad

Have you had any blood tests?

Folate, not foliate!

@sarahc336

Could it be anxiety? Have a google of panic disorder, if all health related checks come back negative then it is likely to be anxiety related. I'm a therapist and work with people with these symptoms all the time but obviously we would always recommend that the symptoms are ruled out being from a health problem first xx

How many women in this country have suffered with actual health issues for years as it's put down to anxiety?

Loads. Too many.

Also there is no such thing as ALL health related checks. You could have all routine or common health checks but that's not nearly the same thing as investigating everything possible!

Why are women more likely to be diagnosed with anxiety than men, do you think? Is it because we're more anxious or because we live in a sexist society where people listen to and believe men more than women, without even realising they're doing it?

@crumblebug

I had these symptoms with severe B12 and foliate deficiency

I felt so awful that I thought something was seriously wrong with me, or I was going mad

Have you had any blood tests?

Hey, yes I have had blood tests, they've all been normal. I've had this before and it was 'apparantly' an inner ear infection although they never seen me in person (covid and all) I have such head pressure, ear pressure awful fainting feeling, it's so scary and concerning just want it to go :(

What was your b12 level? The UK guidelines for 'normal' are much lower than elsewhere in the world

I get symptoms even when my level is in the UK 'normal' range

Including light-headedness, headaches, anxiety and a strange feeling in my ears- like pressure and it's blocked but I can hear my breathing really loudly.

@crumblebug

What was your b12 level? The UK guidelines for 'normal' are much lower than elsewhere in the world

I get symptoms even when my level is in the UK 'normal' range

Including light-headedness, headaches, anxiety and a strange feeling in my ears- like pressure and it's blocked but I can hear my breathing really loudly.

I'm not sure! They didn't tell me, they just said all my bloods were normal and in healthy range

Hi OP, I had the same symptoms, plus:

Tingling scalp.
Feeling of a 'shadow' over my head (hard to explain).

My neurologist said something I kept with me afterwards, "a migraine isn't a headache, it's a neurological attack". The headache was the least of my problems 😅

It turned out to be Vestibular Migraines.

You asked upthread if Vestibular Migraines could be that consistently... I had one from Feb to June.

It wasn't the same every day, but I cycled through symptoms without a single day's break for four months.

Oh and by the time they called me in for MRI results (which showed little calcifications on my frontal lobe, which often coincide with migraine sufferers) I'd convinced myself I was dying.

If you do Botox, Dysport or another one of the botulism toxin injections - these are the same side effects when the toxin goes systemic.

Nothing shows up on any medical test.

Have you thought about meniere's disease as I know someone who had this and felt like that constantly until diagnosed and treated

@Pinkychilla

Have you thought about meniere's disease as I know someone who had this and felt like that constantly until diagnosed and treated

From looking at Ménière's disease it seems to be more associated with a spinning sensation rather than a 'falling' sensation so I don't think it's that

@MyNameForToday1980

Hi OP, I had the same symptoms, plus:

Tingling scalp.
Feeling of a 'shadow' over my head (hard to explain).

My neurologist said something I kept with me afterwards, "a migraine isn't a headache, it's a neurological attack". The headache was the least of my problems 😅

It turned out to be Vestibular Migraines.

It is very worrying isn't it, seems to be such a long wait just to see someone about it aswell :( that's reassuring though that it could well be something treatable because so far I've been getting betatistine and it hasn't done anything :(

Agree with PP -you need to know your B12 and ferritin levels not just whether they are in what NHS calls 'normal range'.
Remember the NHS is looking for disease ... it may be that you are deficient in B12 or iron (very common).
I also wondered about POTS. I have this. It is particularly common among young women who tend towards hypermobility - are you especially bendy, OP?
Many GPs (and even cardiologists) are not even aware of POTS. Heart tests will need to come back normal for the diagnosis to be made - the tilt table test is the gold standard for this.
Do you notice a pattern for when you get the dizziness - when standing, sitting, lying down, after or before eating , etc?

Everything is to do with brain.

It is most likely that you have a middle ear problem. It wouldn't show up on a routine ENT examination, you need an audiological physicians opinion after doing some audiological investigations.

I hope you recover before too long, things like that are unpleasant while they last.

Good luck.

@TiddleTaddleTat

Agree with PP -you need to know your B12 and ferritin levels not just whether they are in what NHS calls 'normal range'. Remember the NHS is looking for disease ... it may be that you are deficient in B12 or iron (very common). I also wondered about POTS. I have this. It is particularly common among young women who tend towards hypermobility - are you especially bendy, OP? Many GPs (and even cardiologists) are not even aware of POTS. Heart tests will need to come back normal for the diagnosis to be made - the tilt table test is the gold standard for this. Do you notice a pattern for when you get the dizziness - when standing, sitting, lying down, after or before eating , etc?

I have never heard of POTS, initially I didn't notice a difference when the dizziness came and went but now I'm starting to notice when I am walking it's not half as bad as it is when I am still, sitting down, lying down, standing still it really is worse lately

Hmm, with pots you wouldn't generally get it when lying down (this is likely to alleviate dizziness) , mainly it's standing still or sitting up which causes heart to need to beat faster and loss of blood to brain, causing dizziness

@TiddleTaddleTat

Hmm, with pots you wouldn't generally get it when lying down (this is likely to alleviate dizziness) , mainly it's standing still or sitting up which causes heart to need to beat faster and loss of blood to brain, causing dizziness

I've just checked now, it actually does sound very close but it does happen when I'm lying down just not as bad I would say.. but I did have a heart monitor on for a few hours and did have ecgs which were normal so I'm not sure it would be that