Oculogyric crisis - eye/neuro symptom linked to B12 deficiency

[Sleepybunny]

Hi,

Found this article about oculogyric crisis where eyes get stuck in a particular position.

The patient had a low B12 result.

eyenews.uk.com/features/oph...

[Nackapan]

Very interesting.J had all sorts of problems with my eyes and vision.

I still get a sticky feeling when not sticky.

Heavy eyelids.

Blurred vision

Print disappearing from 5he right as I read or type with tinnitus up a notch

Dry eye

A heaviness across to my ears that I've always described as heavy metal spectacles clamped to my face ,causing pain behind my ears and across the bridge of my nose .

I realise the head / skull pains ate worse when maintaining balance .

Definitely led by eye to brain nerve damage.

I hoped a neuro Opthalmologist wouid give explanations.

However nothing .

If anything he just added to the 'in my head '

A mental health disorder like illusions .

I totally disagree with him and turned down

CBT ect.

Then afterwards I discovered he 2ax a locum opthalmologist .

As neuro not on his signature.

I'd asked him face to face as getting nowhere and he looked confused at my question??

Also 'pattern glare ' very disabling .

Even recently I managed a train journey.

The stairs were my problem.

Enough stamina but the glitz in the concrete and stripes set my head off.

On getting to the street my balance gone .

I looked lije s drunk staggering until my brain adjusted.

Leaves a head pain

A5 my worst I dreaded opening my eyes as triggered pain and visual difficulties.

Also couldn't put on prescription glasses as brain simply couldnt do it.

I had something similar to what's described as id fix for too long .

Thus phone with one eye shut wax my lifeline with communication as I couidnt read much on paper.

Words jumped about. Head pains.

Frustration.

I'd take 2 lines at a time .

The realised the phone worked as only 2" wide.

And a very dim light setting .

TV and a lap top I coukdnt watch use for 3 years

Still csnt use a laptop.

In that article the B12 level was alot higher than mine .

More research yet again .

Like in that article only thing found was low b12.

I'm renown for my typos on here and occasionly critised for .

Thise affected by eye issues.

It's not in your head.

Convinced nerve signalling damage .

Also nerves in my Scalp cause itching .

Nothing to see until a small bump appears under the skin then goes again 🤔

Glad you found this sleepybunny

[Narwhal10]

Thank you Sleepybunny

‘Basic investigations such as blood tests should not be dismissed.’

‘B12 deficiency can present with a spectrum of haematological, gastrointestinal and neurological features. The neurological features of B12 deficiency in adults can occur at different serum levels of deficiency and are well documented. They typically include paraesthesia, fatigue, ataxia, and syncope. In advanced cases, cognitive impairment, sub-acute combined degeneration of the dorsal and lateral columns and optic atrophy are known presentations.’

Best wishes

[Cherylclaire Forum Support]

Involuntary upgaze looks an awful experience and must have been disturbing.

Worth reminding people here of how much greater impact one photograph can bring to an appointment with a GP/consultant - especially where symptom/s may be cyclical or unpredictable in occurrence. We often only get the one chance.

Interesting to note that, at 151 ng/L, bloods were described as showing "significant" B12 deficiency. In some areas, this is still not recognised as such. We have all seen how punitive cut-off points can be around the UK.

I was aware that B12 could affect sight but lists are not always specific about how that might manifest.

Even at my worst, I was lucky. Yes, night vision impaired- especially colour: everything I tried to paint came out the wrong colour (blue/ green problems)as I would find dishearteningly the next morning. So no more painting in the autumn/winter evenings.

Would also get eye-shiver at night, even with eyes shut, I could feel it : guessing tired eye muscles.

I do also recognise a milder version of Nackapan 's "heavy metal spectacles clamped to my face" - mine being just my actual varifocals becoming very tight and painful behind ears and marking across bridge of nose.

But that was it, nothing else, nothing worse.

Sometimes, I believe that going to see a variety of consultants can offer help, often from unexpected quarters: my ENT senior consultant was well aware of what B12 deficiency looked like within his speciality. No tests necessary. He encouraged me to keep going with the EOD self-injecting, advising that it would take a very long time to recover.

I am convinced that there is also a consultant somewhere out there who would be able to immediately recognise the particular set of symptoms Nackapan describes, and what best to do about them.

[jimmel196]

I was having brief episodes of double vision but never anything as you are describing, thank goodness.