Vestibular Neuritis

[QAQA]

About 5 years ago I was sat at work when out of nowhere my vision went like I was seeing stars.
I felt awful and had to leave work and go home
I was hit with Labrynthitis / Vertigo and was off work and bed bound for about 3 months.

Fast forward to this year, towards the end of January and I had a terrible cold which dragged on in to February. I had some dizziness kick in and thought is this the tail end of the cold or the start of labrynthitis, I suspected the latter.
Mid Feb I went to the doctors they told me labrynthitis. This was a sensation of feeling light headed dizzy and movements would make it worse / feel sick.

One night in mid March for whatever reason I slept on my left side which I never do and since then I've been constantly feeling awful, like I'm floating around on choppy seas, retching and very close to being sick due to feeling sick a lot.

I spoke with the doctors again as no improvement, they carried out a simple test and told me it was labrynthitis / bppv and I had Vestibular Neuritis and they would refer me to ENT for vestibular rehabilitation therapy. That was some time ago and my first appointment isn't until mid August. So in the mean time I've just got to live in this hideous state and there is nothing I can do about it

I've been pushing myself on doing what I can within reason and still working.

Today I'm really struggling and considering leaving work to go home and sleep, I think other emotional issues are contributing to make me feel so much worse today

I've had enough of this no, I don't want to be sick any more

Im sorry to hear it op. Iv not experience of vb but i sympathise.
Had a bout of scary optic neuritis and have other health issues that make me feel fed up so i can in some ways relate.
Are there any support groups irl or online you can get in touch with as maybe others with this can offer some advice?

I left work in the end and came home
I think the emotional trauma I've recently suffered intensified my illness
I was was just sat there feeling sick, shakey and fighting back the tears

I don't think there is much support for this kind of thing in the UK and most the online stuff is groups on Facebook with people complaining of being this way and getting no answers or getting better

It's really hard to explain to someone who has never felt this way what it's like, you might look fine but your not

It's exhausting

I’ve had vestibular issues for around 30 years. It’s exacerbated by stress. Friend also diagnosed at a similar time goes here

www.vestibular.co.uk/

I hope you get some answers. I’ve just had to learn to live with it, as has my friend. It’s not so bad now I wear a bite guard at night.

I had same
There is stuff you can do. Don’t wait to go for therapy.

Just google it an£ all the exercises are on line

It’s the thing that is happening to your brain that is making you feel dreadful. The brain doesn’t know what is happening so it want you to lie down

I felt like I had the flu every single day and depressed. Physio said it was the illness causing it

The excercises were th3 only thing that worked.

I was same waiting 3 months after diagnosis to see physio

She was brilliant. But all the exercises are on line and on YouTube

I was also told that being bed bound was the worst thing.

You have to retrain the brain

Brain says no lie down in bed. As it is confused by the messages

But it doesn’t get better you kinda have to force the brain to get used to it
When you do the exercises you keeping upping the ante each time

Thank you for the link I will look in to that

This is the first time since the beginning of Feb I've left work, I'm emotionally exhausted right now so the stress has probably intensified it all. I've been pushing myself to do more as I know movement and to keep going is best

I went to see someone privately last week that doesn't Applied Movement Neurology which was good and he had managed to help me stop feeling sick and retching all the time which was a massive bonus but stress has kicked in
I need to make another appointment but will see if my step dad can take me this time as I can't drive on the motorway to get there

It’s shit isn’t it?

Totally suck
I just don't feel like me anymore
for you too x

I feel so sick today
And the smallest amount of emotional pressure sends my head off in to a further spiral of extra dizziness

It’s good to do the exercises but I think it’s important to realise that your brain is struggling

I kind off of looked at my brain as something that needed help and the physio told me it’s really normal to feel depressed and it’s the brain that is causing it

I was told told to only do the exercises till the nausea started. And do more each day. So retraining the brain bit by bit
It really works. Though I did cry the first time I had to walk the line with eyes shut. I could only do one step.

It gets better. It does. Go on YouTube and google for the exercises.