Anyone with any experience of on going dizziness following bbpv/labyrinthitis?

[awaywego1]

So I was diagnosed with labyrinthitis Dec 14 ..felt awful and was totally incapacitated for weeks..off work for 2 months. Lots of dizziness, nausea unbalanced feeling, constant headache and tingling sensations.

Basically I've never recovered although got back to functioning ish on and off. Saw ENT in Sept who did dix halpike manoeuvre and epley and said it was bpbv in my right ear. Had mri which ruled out anything sinister. ENT said epley would resolve symptoms and I've continued to do this and other exercises at home however I've still been continually dizzy although to a lesser degree so i've been managing to go to work.
Last week I went to the cinema and am basically back to square one ..feel horrible, can't function, off work again..I've got a follow-up with ENT in 3 weeks but I'm no longer convinced by the diagnosis tbh as the many epleys and related manoeuvres have done nothing for me.
I'm really at the end of my tether..I can't have another extended period off work..I'm already coping with a couple of other long term health problems and am starting to feel really worried that I'm stuck with this now.
I've wondered about it being some kind of vestibular migraine as things that make me worse include strip lighting, alcohol, lifts and uneven flooring..but who knows!

Sorry that's so long but I'm just wondering if anyone has experienced this or similar and had any advice?

Sorry just read your post properly and realised you've had the manoeuvres done...

It's alright ladies! FIL definitively knows what causes it!! He knows it's due to

Using computers!!!

Even though Ménière's was first classified in 1860s, our collective dizziness is caused by computers.

iklboo how kind of him to share that pearl of wisdom

I know right? Shall I call the Nobel Committee now?

iklboo Good to know fil has figured it out eh! yeah sadly I had the epley last year to no avail and it seems more triggered by visual stuff than head movements at the moment. Oddly at first ent appt I tested positive for bppv but at 2nd I didn't but I guess that could have just passed or I could have been having a good day or what have you.
I've had such a dreadful day today I really hope tommorow is a bit better along with swaying and dizziness etc my head feels constantly really pressurised and like it's shaking from side to side and I feel like I'm not very with it but I guess some of that could also be the topamax.

DH has just had a tantrum moaned that we won't have time to nip to the shops for stuff we need for tea tonight between the driving lessons HE has arranged himself (he's an instructor).

But he's had time to go to the gym for an hour and a half this morning. And has just spent 40 mins on the loo BEFORE getting in the shower - and after it he'll spend another 45 'having breakfast' (which means playing on his phone while he dawdles over some porridge).

Sorry to whinge. Not in a good mood today - lack of sleep.

How infuriating

kill him

Can you have a rest/nap in the day iklboo

Power naps/lying down keeping my head still for an hour or so half way through the day really helped me, it usually stopped the dizziness/nausea from getting too bad

Thanks Broken - I did have a nap this afternoon. Felt a bit better.

Phoned work to tell boss about tests next week & she was lovely. Said to get a note for next week as well until after I've seen specialist and then we'll talk about a phased return to work. I cried .

I'm glad your boss was helpful and kind. It's such a difficult thing to live with, not least because it's invisible to everyone else.

I hope your specialist is knowledgeable about balance disorders/dizziness and can give you some answers and help you.

Walked into town & back today. BIG mistake. Even hanging off DH.

I couldn't walk the school run (5 minutes) without feeling hideously unwell. It's so frustrating and miserable I know ikl

I hope everyone here isn't feeling too dizzy today.

Hard as it is can you take it really quietly until you've seen the specialist ikl?

I'm trying to make myself walk around the block every day..it about 4 minutes walk but I feel awful by the time I get back so disoriented and sick. Other than that I'm basically trapped in the house on my own which is making me totally miserable.
I find looking out to the horizon really helpful rather than the near distance if that makes sense but it a hard to do.
In good news finally got appt for eng tests and physio at end of March..I'm hoping I can get cancellations sooner but we'll see. Hope everyone has a good day.

I was off work for a month last year with vertigo, it was hideous so I totally feel for you.

I'm much better now, but still have the odd moment. We went to the cinema recently and I had to cling onto the handrail.

Mine was diagnosed as migraine related triggered by grinding my teeth. I have a splint to wear at night which has helped enormously.

I'm doing my best to rest . DH is obviously channelling his dad as he announced yesterday I should be going out for walks every day as it will stop me being dizzy (apparently I will get used to it & then won't be dizzy any more). I must have missed the day he got his medical degree.

He wants me to go to DS's away rugby match today. It'll be about a 4-5 hour 'event' (journey there, waiting round, match itself & return). He's got the garden chair out of the shed 'so that's alright'.

Sigh. I should 'pull myself together' then shouldn't i?

I have read that gradually moving around will eventually help, but GP has advised bed / home rest as much as possible until I've seen the specialist. The blocks round here are really large as well with nowhere to sit & rest - I'm scared I'll look like I'm drunk!!

Iki it's wierd because when I first got ill 15 months ago I just kept moving in an attempt to compensate as I read that was the advice..so despite looking drunk and feeling bad I went to supermarkets, walked a lot, did the physio etc...6 months in I even went to go ape as I was determined just to work through it. This time it feels different I think because I have so many more visual symptoms it is making it much harder I feel I could deal with being wobbly and unbalanced much better than this so I'm struggling much more this time and needing to rest much more this time and am now in bed for 4 hours every afternoon. I don't know whether that's right or wrong to be honest. I'm sorry you dh is pushing you so much. I do think there is a case for continuing to challenge your vestibular system in order to retrain it but you have to do it in a graded way I think to make it manageable and that big trip does not sound manageable at all!

I was guilt tripped persuaded to go. The match was abandoned due to the weather. So I'm cold, wet, dizzy & nauseous for 20 mins play (u9s so matches are 2 x 10 min halves but they normally play 2 or 3 matches). Plus side is that DS got the Players Trophy

(And the mums had a go at DH for making me come out ).

DS making quiche for lunch after his bath. I'm back in bed with a cuppa.

Hope everyone else is wrapped up indoors in this 'orrid weather!!