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BPPV and Labrinithitis

Linguo

Hi,

Was just wondering if anyone was suffering from long term labrinithitis and BPPV and how they cope with it?

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Dizzyblonde

I am - not BPPV, but I have uncompensated vestibular neuritis which is like labyrinthitis but without hearing loss. It's almost 20 years now for me and one of the things that helps me to cope is being in touch with other dizziness sufferers. There's a link to a great online dizzy community in my signature, we just support each other and share our experiences.

I'm very lucky because I've just been accepted to take part in a study of long-term sufferers here in Ireland. It involves having the tests redone, and then having 6 weeks of intensive vestibular rehabilitation.

Send me a pm if you'd like any information on the website or the study, or even just to be in contact with another sufferer because only other dizzy people really understand what it's like to live with this awful condition.

Linguo

Dizzyblonde wrote: »

I am - not BPPV, but I have uncompensated vestibular neuritis which is like labyrinthitis but without hearing loss. It's almost 20 years now for me and one of the things that helps me to cope is being in touch with other dizziness sufferers. There's a link to a great online dizzy community in my signature, we just support each other and share our experiences.

I'm very lucky because I've just been accepted to take part in a study of long-term sufferers here in Ireland. It involves having the tests redone, and then having 6 weeks of intensive vestibular rehabilitation.

Send me a pm if you'd like any information on the website or the study, or even just to be in contact with another sufferer because only other dizzy people really understand what it's like to live with this awful condition.

Thanks that's great, got it very bad for a few months but am thankfully feeling better now but of course it can come back any time and can still feel strange with it sometimes! I'll check out the website, I didn't know anything about it until I got it!

foxinsox

Hi,

I woke up one morning last May, was violently ill and my room was spinning, it was very frightening, never experienced anything like it. Long story short, I was diagnosed with Acute Labyrinthis.

I was out of work for 5 weeks, most of that spent in the bed/house. I was so dizzy/disorientated most of this time, though thankfully the vomiting stopped after 2 days.

It is a miserable horrible feeling and makes you look like you are drunk, when you are just trying to walk down the street.

I was told that it was probably caused by a virus, I do remember feeling a bit run down, but nothing out of the ordinary.

I have been to A&E in The Eye and Ear Hospital, had my ear "hoovered", that really hurt. I've been attending physio there.

I was also referred to the Ear Nose and Throat Department in Waterford Hospital. They checked things also and my hearing is perfect.

So here I am months later, I still experience being disorientated/dizzy at least once a day, sometimes more, I am exhausted a lot of the time, no matter how much sleep I get.

I also notice that my diet does/seems to effect how severe the dizziness is. As does the amount I smoke. If there is any chance that I am slightly under the weather or getting a cold it seems to get worse also.

There are days when crossing the road can seem daunting or even just walking along the path

I do drive, but haven't driven more than a mile or two, just local. I don't feel that I would be able for anymore.

Apart from when I was actually vomiting I have tried medication (Serc) I did not find that it made any difference whatsoever.

It is hard having this, I feel like people think that I'm just a moany cow, or being a hypcondriac, there are no visible symptoms and it is so hard to try to explain to someone who has never experienced it.

I feel the word disorientated works better than dizzy, as I would feel dizzy if I feel faint or get up very fast, dizzy is more light headness, but disorientated = out of it, unaware of surroundings, unable to judge, drunk feeling (without the fun bits)

That's my story, it's been good to read your experiences too!

Onwards and Upwards and a wobbly sideways to us all!

Linguo

Good to hear another story and sorry you're still affected my it.

I still feel residual effects of it and I got it at the start of July, some days I'm grand, some days certain things make me feel a bit strange or dizzy. I tend to get lightheaded a lot more often as well.

I do the Brandt Daroff exercises once a day (although sometimes I'm naughty and forget) which seem to help things as well but I'm beginning to wonder if it will ever fully go away! Thankfully things have improved vastly which is a relief, it's a very strange experience though and hard to describe to people!

Dizzyblonde

Hi foxinsox, I share a lot of your symptoms and find I'm dizzier when I'm under the weather too. The fact that it's an invisible illness really does make it worse.

I've replied to your pm.

foxinsox

Linguo wrote: »

Good to hear another story and sorry you're still affected my it.

I still feel residual effects of it and I got it at the start of July, some days I'm grand, some days certain things make me feel a bit strange or dizzy. I tend to get lightheaded a lot more often as well.

I do the Brandt Daroff exercises once a day (although sometimes I'm naughty and forget) which seem to help things as well but I'm beginning to wonder if it will ever fully go away! Thankfully things have improved vastly which is a relief, it's a very strange experience though and hard to describe to people!

Yeah, fair play to you for posting in here. I had thought of starting a thread but just never got around to it!

I agree with you it is good to hear other people's experiences.

I must admit that I am a disaster at doing the physio excercises, do you find them the most boring thing in the world?

I think that when I started them I was still in a pretty bad way, one of the excercises was to stand on a cushion in bare feet fold my arms and close my eyes - horrific feeling.. because I was still so dizzy at the time. I've avoided the physio since then - I should really get my ass in gear and get back into them.

I also wonder sometimes, will this ever get completely better.

Great to have this thread now so we can share our experiences

Dizzyblonde

The exercises are defnitely mind-numbing. I did them a few years ago and gave up, which I regret now. This time I'm doing everything I'm told to in the hope that it works. The thing is, if you're one of the tiny minority of people whose brain doesn't compensate naturally for the damage done to your inner ear by labyrinthitis or vestibular neuritis, you need exercises to provoke mild dizziness in order for your brain to learn how to compensate. A trained physiotherapist will tailor the exercises to suit you.

Also, the earlier you start them the better. Having said that though even people like me who've been dizzy for a long time benefit from them, it can just take longer.

Linguo

Yeah it's the fact that the exercises are boring that makes me let them slide but I really need to keep them up, I feel so much better when I do and if I don't do them for a while I can really feel the difference with the level of dizziness I feel when I start them so it's really in our best interests to keep them up!

Did your specialists do the special move on you both when you had it originally?The one where they pull you down on one side turn you over and pull you back up and you have to keep your head level for a day or two?

Linguo

Dizzyblonde wrote: »

The exercises are defnitely mind-numbing. I did them a few years ago and gave up, which I regret now. This time I'm doing everything I'm told to in the hope that it works. The thing is, if you're one of the tiny minority of people whose brain doesn't compensate naturally for the damage done to your inner ear by labyrinthitis or vestibular neuritis, you need exercises to provoke mild dizziness in order for your brain to learn how to compensate. A trained physiotherapist will tailor the exercises to suit you.

Also, the earlier you start them the better. Having said that though even people like me who've been dizzy for a long time benefit from them, it can just take longer.

So are those exercises forcing our brains to compensate? I actually thought it was moving the crystals in the inner ear into the right part?? I need to look things up more carefully!

Dizzyblonde

Linguo wrote: »

Did your specialists do the special move on you both when you had it originally?The one where they pull you down on one side turn you over and pull you back up and you have to keep your head level for a day or two?

That's the Epley Manoeuvre, it's used to put little crystals back where they belong in the canals in your inner ear if you have BPPV. I didn't have it done because I never had BPPV.

Linguo wrote: »

So are those exercises forcing our brains to compensate? I actually thought it was moving the crystals in the inner ear into the right part?? I need to look things up more carefully!

Yes, the exercises help our brain to cope with the mixed messages coming from a damaged vestibular system.

There's reliable information about all these things, plus peer support for dizzy people on www.dizzytimes.com
I'm an admin on that site, it's non-profit making and free to join. Nobody can diagnose you on there but it's a very useful site. It's really helped me.

Linguo

Ah yeah that's where I was getting mixed up!

I've already been diagnosed by a specialist as having both labrinthitis and BPPV but will defo check out the site, interesting to hear other people's experiences!

foxinsox

Linguo wrote: »

Did your specialists do the special move on you both when you had it originally?The one where they pull you down on one side turn you over and pull you back up and you have to keep your head level for a day or two?

Never had that move done on me.

I had the one where they make you drop/fall back suddenly and they look at your eyes.

The physio in Eye and Ear Hospital did a great trick with camera on my eyes. Basically like fancy (very fancy) glasses and then he recorded/filmed my eye movements - like when my brain was trying to compensate.

It was the wierdest thing ever but it really helped me understand exactly what was going on in my head, when I saw it on his laptop.

The way he explained it to me was:

For balance you need three things:

1. Eyes - they see where you are in the world.

2. Ears - they do their magic thing in the labryinthis - inner ear.

3. Brain - magic signals from both above

If there is damage in the labryinthis (ear) then the signal to the brain is a bit messed up, which therefore messes up the signal to the eyes.

The messed up eye reaction (trying to compensate) is what the camera was able to show with me.

This wiki page illustration for vertigo shows what I am talking about when the camera thing was done on me:

http://en.wikipedia.org/wiki/Vertigo_(medical)

I really need to get back to doing my excercises as I had a horrible dizzy day today!

By the way this post is just my own words trying to explain how I feel and it is only my personal experience

Dizzyblonde

Linguo, unfortunately BPPV can sometimes occur along with other conditions.

Foxinsox, sorry to hear you had such a bad day. I've had a rough week myself, and I often find the weather has an effect.

One of the best websites for information on dizziness is Dr. Timothy Hain's www.dizziness-and-balance.com

foxinsox

Have any if you ever tried a Cranial Osteopath?

I was in the health shop today and just was chatting to the lady and she suggested this: she gave me a contact number, so I'll keep you updated if I go to see him.

I found this on the web:

http://www.helium.com/items/1217395-treatments-for-labyrinthitis

Dizzyblonde

foxinsox wrote: »

Have any if you ever tried a Cranial Osteopath?

I haven't, and I've never heard of anyone being helped by one. I had a lot of sessions of reflexology at one time and they were very relaxing but didn't do anything for the dizziness.

Unfortunately damage to the inner ear by labyrinthitis or vestibular neuritis is permanent and can't be repaired, we just need our brains to learn to compensate.

I'd love to hear how you get on.