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?

[spiderbabymum]

Been thru something similar
Try not to panic
What helped me :
Cut down stop all forms if caffiene
Drink rooibosh tea instead
Avoid dehydration like the plague
Plenty of clear fluids
Exercise like yoga
See ent again if worried

[Kundry]

Vestibular rehab really helps but takes time.

Try really really hard not to take meds like stemetil if you are prescribed them as your body gets used to them and it prolongs the problem as when you stop, it feels unbalanced and you are starting from the beginning again.

[marmaladegranny]

Oh I do feel for you! Almost 3 years I was taken from work to A&E with a possible stroke. I was barely able to stand or walk and felt dreadful -I was eventually diagnosed with labyrinthitis that was treated with stemetil in A&E and I was discharged the following day. Since then I have had various episodes of debilitating dizziness which I have treated immediately with my emergency supply of stemetil - but the intervals in between are lengthening and (crossing fingers, toes etc) I haven't had one for a couple of months. Sometimes there are triggers - stress, upset stomach or going too long without food or drink. There is no rhyme or reason to when non triggered attacks occur - I had one on board an aircraft but sometimes just wake up to a spinning room and unable to get out of bed. The stemetil are always within reach - the medical staff at my work stressed the importance of this to me.
I have never been referred down the ENT route - maybe because the stemetil does help. It is a very frightening condition and I have found it is necessary to have strategies in place in case an attack comes out of the blue. It should improve gradually and you will learn to live with it - good luck!

[marmaladegranny]

Just read Kundry's post saying to avoid taking stemetil - certainly I would agree with her regarding regularly but it is a very useful drug to take once in a while when an attack occurs.

[weegiemum]

I had labyrinthitis which didn't resolve. I actually had a lifelong neurological condition (sensory ganglionopathy) which took 3 months to be diagnosed. No think on MRI, I needed LP, nerve function tests etc.

[MoreBeta]

My DW has had it 20 years. Her brain has basically learned to balance by using her eyes.

The reason you felt dizzy when you went to the cinema is because you are using your eyes. My DW has to hold onto me if we walk into a dark cinema.

It comes and goes. She got better when she was having chemotherapy. She also got better when pregnant. Feels worse if tired and depending on what she eats. Different times of year also different as light and pressure affect balance have an effect. Uneven ground or vibration make her worse.

You will gradually get better. My wife thinks her onset was related to a virus or a bacteria she had that may be still lurking. Explains why she got better with chemo and pregnancy.

Drugs were of no use at all. Alcohol in small amounts helps but too much make it much worse.

[marshmallowpies]

I don't have it but my DH does (quite mild I think, usually 2 episodes a year) and he says early diagnosis of an episode coming on & taking medication quickly really helps.

The first time he had a recurring episode he ignored it for a couple of days, thinking he was just a bit under the weather, and of course ended up feeling much worse as a result, having delayed seeking help. So now as soon as he feels a bit dizzy, he tells me about it rather than pretend it's not happening and takes medication straight away. His last episode was over in less than 48 hrs which was the easiest one so far.

[awaywego1]

Thanks for all your thoughts that's really helpful. I have been prescribed stemetil but avoid taking it as it doesn't really help and I understand it can prevent compensation.
I'm going to try a migraine diet tommorow and see if that helps. I can cope with episodic dizziness but the way I have felt the last few days has felt a lot worse than usual..I can't even walk around the house at the moment.

[allypally999]

morebeta I am the same as your DM - I finally got a diagnosis from a specialist "dizzy clinic" and got a range of exercises which have trained my brain to listen to my ears and not just my eyes - its made a huge difference!
I only get the odd spell now and still do a couple of the exercises to keep it at bay.

Years of mis-diagnosis re labrynthitis, vertigo, blah blah before this.

[awaywego1]

It makes sense..when I saw ent last she said she thought I'd become visually dependent. However didn't tell me what to do about it..I'll Google some exercises!

[Thumbwitch]

I had transient vertigo for a while before I got labyrinthitis, which I've had twice - so my case might be different but still.

I was checked by ENT and told I had a permanently damaged inner ear on the right and my only hope was to do dizzy-making exercises for 10 minutes, 3 times a day, until my brain stopped responding to the dodgy messages.

I went to an osteopath and he corrected the position of my neck vertebrae and cured it in 2 sessions.

[SillyPops]

I had a bout of labyrinthitis when I was 11 or so, took a long time to go away and the recurrent dizzy spells remained. I had ECG's/EEG's, MRI's, blood tests, all sorts of different diets and diagnoses. After about 5 years we gave up and I got used to it. I could 'feel' them coming on and got used to it.

One thing that has come up recently (13 years since it all started) is that I have problems with my heart rate rapidly fluctuating. It goes up VERY easily (think 5 min walk getting it to 200bpm+) and also stops very low. I'm now beginning to think this could be the problem. I had a tilt test where they lie you on a bed and tilt you different ways to see what happened and I passed out, do something definitely going on with that. Just waiting for the results. The specialist also said it's not uncommon as others said for your body to start using your eyes instead of ears, so standing up quickly or staring at a tv (or cinema) screen for a long time and then moving can confuse your brain.

I am much much better now than I was in the beginning, but I still suffer occasional dizzy episodes.

[Westendgal]

Is your hearing ok? Do you have buzzing or "fullness" in your ears? I have Meniere's disease which results in vertigo and the above. Perhaps go for a scond opinion? Dizziness is horrible. You have my sympathies.

[PTAblues]

Sorry this will be long. I have had it for 15 years. Came on with a virus and left me basically totally incapacitated for about 2 years. Couldn't read for long,or use the computer , couldn't go to the cinema, couldn't exercise, bad travel sickness even when I was driving, had to give up work etc . I never got a diagnosis for mine- they didn't bother in those days just gave you an MRI ruled out anything serious and sent you on your way. I suffered a lot from panic attacks which would come on when I was about to get dizzy. The doctors from GPs to specialists were unhelpful and dismissive. A few told me it was psychosomatic which knocked my confidence so much. If I'd had the help there is available now it wouldn't have been so bad.

It took quite a few years to go back to being a fully functioning person and I basically did it by using a sort of cognitive therapy myself that I had read about on the internet. I just ignored the dizzy signals and carried on. I used to shut my eyes and feel where my feet where to sort of steady me. Eventually I would have to stop doing whatever it was but my brain started to override the signals telling me I was dizzy.

It took a while but it works. I still get dizziness but its confined to when I'm tired, if I'm sick etc. It's often the first sign something's wrong with me. My trouble was exacerbated by sinus problems.

I found the same as you with strip lighting, cinema etc. Some shops were so bad I would get instant vertigo when I went in. I couldn't use escalators and stopped drinking. I can do all those things now- sort of. Except the drinking as I never know if one glass will set me off.

It is a truly horrible thing to happen to you. Because it's invisible no one really thinks there is anything wrong with you even though you are really suffering. There is no magic bullet but everyday you will get a little bit better. The worst times are when you think you're getting better and then have a relapse. They got me down until I realised they would pass eventually and then it would be onwards and upwards.

[awaywego1]

Thanks for all the responses..I'll respond in more length once I can look at a screen for longer.

[RocknRollNerd]

I first had labyrinthitis about 13 years ago - it was horrendous and I was out of action as in off work for over a month and then on a phased return. I had VRT in the end which sorted it out and I was able to go back to normal life, driving, running, etc. Before I got to that stage (about 8 months down the line) I found it was really easy to over do it and knock me back again - I learned in the end to not rush back to full daily life and to heed warning signs. The VRT was needed because I'd been dizzy for so long I needed to relearn how to do it if that makes sense.

I had another mild flare up a few years ago and that was treated pretty quickly with rest and betahisthine (serc). I got BPPV last year and struggled with periodic dizziness from time to time - in the end I did the Brandt Daroff exercises and then had an Epley which combined with betahisthine did the trick. Again it got worse when I got tired, stressed etc. Thankfully I've been ok now for a few months.

I think the key things are to listen to your body, you can't 'battle through' this kind of thing - for me betahisthine works very well, combined with getting enough rest, taking it very easy and avoiding anything that will trigger more dizziness.

[LittleBairn]

Yes my father he's has it for around 10 years he's given up expecting it to go. He did say recently that he's so used to it now it's not such a big deal you learn coping techniques and like another poster said you learnt k rebalance yourself mentally.

[awaywego1]

Thanks for all the replies-it's really useful to hear other people's experiences. Vertigo seems such a confusing and complex area with a million different causes.
I've continued to feel the same level of vertigo over the last week which is stopping be from really being able to leave the house, I also have a permanent headache and neck pain. GP has started me on topamax as a migraine preventative to see if that helps. So far the side effects are very unpleasant but I'm willing to persevere if it helps in the long run.

[iklboo]

I've been off work since mid Jan with dizziness, vertigo. Now got an ENT referral for more tests. I'm so fed up now. I feel people - work especially, think I'm swinging the lead & taking the piss because I don't look ill.

But even sitting upright for a couple of hours wears me out. I can walk about for around 10 mins before I have to start grabbing on to things. I get tired very easily. I can't watch tv for long & flickering lights or flashing images triggers a spell of dizziness.

Serc is helping a bit. Epley & other exercises not so much. I have tinnitus & whistling in my wears that gets louder during a spell. My left ear feels like it needs 'popping' all the time.

I'm bored & frustrated with it all. I can't stay off work much longer but I've got a 1/2 mile walk to station each end, plus 20 min rail journey (often standing). Boss is anout working from home as she 'doesn't want to set a precedent'.

[awaywego1]

Sorry you are suffering too. Its a nightmare..I genuinely wouldn't wish it on my worst enemy.
I've made very little progress. I can potter around the house a bit but feel vertigoy and sick constantly and disoriented and awful when any triggers are around particularly fluorescent lighting or busy situations. I'm exhausted and can't sleep well as its like trying to sleep on a boat. I'm waiting for further tests too but they aren't until the end of March. I'm also waiting for physio for visual vertigo but I have no idea when that might be.

[BrokenCircleBreakdown]

Hi away

I had chronic dizziness/nausea/exhaustion and some ear symptoms for 4 and a half years. My ENT specialist was useless. Gave me stemetil then serc, neither of which helped.

In the end I found out about a specialist called Dr Surenthiran, and paid to see him privately locally in desperation as his nhs clinic was an hour and a half away and I couldn't manage that at the time. He was beyond brilliant and literally gave me back my life. If you google him you'll see lots of people rave about him. If you live or can get to London / SE to see him I highly recommend him. Lots of ENT specialists are crap when it comes to balance disorders.

I have a migraine variant balance disorder and was given a special diet, rehab exercises and a migraine prevention drug and am now almost fully recovered.

It's such a horrible invisible problem to have, I really feel for you.

[BrokenCircleBreakdown]

PS did your gp discuss pizotifen or propanolol as migraine preventatives instead? Dr S prescribed pizotifen for me and it made me tired and ravenous but otherwise not too bad side effects wise. I've taken propanolol in the past too for migraine prevention and had no problems with it

[BrokenCircleBreakdown]

I couldn't go into supermarkets or anywhere with strip lights either, drink alcohol or do any sort of exercise.

Diet wise I had to not eat the following for six months

Cheese and other dairy products inc yoghurt fresh cream, sour cream buttermilk

Caffeine inc decaff drinks

Chocolate or anthing with chocolate in

Chinese food (no msg)

Citrus fruits, and pineapples/bananas

Chianti and other red wines, plus some other alcoholic drinks

Also no freshly baked bread/marmite because of the yeast levels

No eggs

Rooibos tea made me dizzy so I drink tulsi tea now

Also

Regular sleep, meals

No undue exertion/exercise

Avoid stress as much as possible

It was a PITA but at the time I would have done almost anything to get better.

Apologies for multiple posts!

[awaywego1]

Thanks broken thanks for replying that's helpful I really am feeling pretty desperate right now I'm not sure how in ever going to get any better at this rate..I've been prescribed the Topriamate as migraine preventative as they do think it may be a vestibular migraine..can't take prop due to asthma. Have slowly started to cut some foods out of diet..but not made much progress with this yet although have cut out caffeine..but I'll take another look at this. I'm glad things have improved for you

[piggychops]

The leaflet the doctor gave me said that some people never recover. I've had 2 episodes in the last couple of years.
There's a manoeuvre which can be done with your head to try to help but it didn't make any difference with me.