Vestibular Neuritis likely diagnosis

Ears, nose and throat
1

Hi 

Did post in the BPPV thread as this was what I was told I have. However given how my symptoms have gone my GP now says he thinks it's Vestibular Neuritis, been referred to ENT that could take up to 26 weeks which is ridiculous given I need to get back to work and provide for my family’s future. Been off for 8 weeks now.

When this started I had a dramatic onset of anti clock spinning so that I feel of the chair I was sitting on, spent 5 hours being sick and had spinning gradually subsiding over the next day.

 

Since then I have had improving degrees of light-headedness and feeling generally odd.

However the last week I have found my symptoms getting worse, sensitive to bright light and horrible headaches.

Also concerned that a kind of split in my vision that has been there for some time.

Cover one eye up then the other and a given object will jump up and right by a small degree, is this normal or part of this condition.

Seem to get so tired after not much activity or concentration.

Been challenging myself to go for walks etc. to help retrain my brain etc.

 

What can I do please to help myself? If I lose my job my life and that of those who depend on me will be in a serious place.

Positive help most appreciated. Thanks

2

There is alot of exercise you can do for this they are on u tube.i been suffering from dizziness for 4weeks now been to doc the er test all came fine.its turns out I have vertigo.but since the exercises I am 65 percent better.and the spinning is gone just a little dizzy still.also walking can help you.this stuff could last for months! Good luck

3

Hi Mike I have both VN and BPPV they often come hand in hand u need to see an ent who specialises in dizziness, I have been at this dizzy game 6 yrs and it's good day bad day, Dr's do not know enough about it I got told it was because I was pregnant but when I found my specialist I began to understand. You have to be seen on the NHS within a certain number of weeks or go private. Have you had an eye test to check your Vision out?

The more you can do the better as the brain needs to compensate and take on the new signals

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I feel for you so much. I don't think it matters that much if it's BPPV or Vestibular Neuritis. I've been diagnosed with one or the other. The symptoms are very close. Please don't wait 26 weeks. I had to wait one month for the specialist, but I thought it was important. He helped me enormously, knows all about these symptoms. He gave me hearing and eye and positional exercises to decide. Then sent me for vestibular therapy. I am very hopeful. He is a Head and Neck doctor, otalaryngologist. Can you find one of those?  People go to ENT docs too. Please try everything you can on your own. Ask at nearby hospitals if they have one; go on the internet for your area. Good luc k.

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They all kind off overlap just the Bppv is more positional. Out of the 6 yrs of being dizzy the first 2 I learnt to walk on my own again and eventually drive I had 2 yrs of vrt then I had 3 yrs of being 90% dizzy free was just dizzy by night etc and then bang have de compensated and bppv so feeling am back to square one

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Katie, likewise, i have had recurring bouts of BPPV in the past 2 years.  I am now thinking i may have to leave work because my vision is wonky, problems focusing and balance issues.   I was making a good recovery for a few weeks and then it will return when i roll over in bed or look upwards and then back to square one.  I get optimistic when i feel better and then fed up when it all comes back again.  Financially leaving work will be a problem but i don't really know what else to do as i am exhausted by the recurring bouts of BPPV and trying to work whilse it is still a problem.

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Do u have epleys or do dixi hall pikes ?

It's so up and down

Do u sleep up right ? I am back on 3 pillows and I won't lay on either side had bppv in both ears over the years.

I find the false motion hardest looking at the walls and seeing them Bob about a little hard to concentrate and it seems so much worse now after being free of them for so long ! Then there is the vestibulaopthy that causes similar symptoms.

I left my job as there was no way I could keep it up I did try I know work for mysekf so Is note suited to me.

It's so hard and I have a 6 yr old to

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i had 2 epleys done and felt neither made much difference.

Does using 3 pillows help you?  I have a neck problem which would make my neck worse sleeping on that many pillows.

I hope things improve for you soonsmile

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  Mike, Ben here,  

I'm not a doctor, so no matter what I write here please remember that.  I tend to see things in black and white and sometimes it sounds like I know too much not to be one.  With that said, BPPV and VN are not even close to the same things.

BPPV is a loose particle that can be put back into place by a maneuver, like the 

EPLY or 1/2 somersault.  VN is damage to the Vestibular nerve that requires exercises and a lot of time to repair.

BPPV can be arrested immediately by doing one of the maneuvers.  If done correctly, the spinning that BPPV causes will be gone instantly.  Vestibular neuritis takes repeated exercises over a long period of time to retrain your brain.  The relearning is called compensation.  The exercises can be looked up on the internet and on youtube under their respective names.  I would give you several urls but the moderator will hold up my post to you until they are checked out for maliciousness, which could take some time, and they are easy to find anyway.  

Meanwhile you could be doing the maneuvers yourself and make instant recovery for BPPV.  If you do the exercises for BPPV it will not hurt you if you have VN, just make sure you don't fall down or fall over, because they do tend to make you more unstable for a few seconds. The BPPV maneuvers, like Eply or the 1/2 somersault, will not affect VN, so don't worry about that.

The exercises for VN will not do anything for BPPV, they will just be a waste of time.  VN is a whole different ballgame from BPPV. You have to walk heal to toe, walk looking up and down and side to side, looking far away and then up close.  Standing on one foot and standing with both feet close together, eyes open and closed.  Looking at cards with letters on them set several feet away, at arms length and up close.  Rise from seated and sit from standing.  There are more too.  Remember, VN exercises work your eyes and help you relearn to use the damaged signals coming from the Vestibular nerve.

VN is the one that causes double vision and shaking eyes called Nystagmus.  It can give you quite a headache, and trying to function doing daily things will cause fatigue.  You will become very tired and need to rest.  There is no accelerated method to make recovery faster.  A regimented schedule that is methodical and repeated for short intervals is the best way to get back to normal.  It is going to take longer if you don't do them, but it won't speed it up if you try to do too much.

So, look them up under their names and get started on the maneuvers and / or exercises.  Just be careful and work methodically and take the time to spread out the exercises.

Good Luck to you and be patient, you will get over this, it just takes effort and time

 Ben

 

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I have a bad neck from years of sleeping on 3 pillows ! I use a neck support to is all soft and takes the strain off .

I find the bppv is less likely to come in the night as I don't slip down or onto my side

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Hi Ben I strongly disagree and feel that's false information.

I have 2 friends that after 8 years of bppv and more epleys then u can imagine have had the plugging operation so it is not just a particle to remove they often stick on the cupular and during the epley the head is shaken to try and remove them. Also they can move into the wrong canal so the epley will not help and a log roll is needed.

The nystagmus is from the bppv it's the best diagnosis as it shows the miss firing from the ears and eyes. VN is not nystagmus it is the general feeling of being drunk as is BPPV the symptoms are all very very similar.

You must not to any VRT until you have seen a vestibular physio as u can make things worse. VRT can indeed be used for BPPV once it has gone so u can compensate agdin from the miss firing signals they cause.

VRT is very specialised to each person.

Any damage will cause tiredness as our bodies fight doubly hard every day so sleep and rest is so important I first got this when I was 6 months pregnant and until my daughter started to sleep through the night age 2 I was fighting a loosing battle as was so tired. Blurry vision upon looking up and down is very common with both VN and BPPV as Is the split second delay upon head movement.

Anything from a different bed or a different room or shops with lots of colour in or restaurants the list is endless they will all be difficult, I can't swim at all anymore because of the movement of the water it stays with me for days.

I was very lucky to go private and find a consultant what people class the " best in the uk" people travel from all of the world to see him so I am 100% with what I am saying as I have experienced it all and learnt over 6 yrs.

It is good hour bad hour good day bad day sometimes my life stands still and it's great sometimes things Bob about all over the place and it's very upsetting.

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Kate, thank you for that.  I totally agree, especially about the good hour, bad hour, good day, bad day.  My vision is so wonky/blurred with this condition most days and it is exhausting.  I am going back to see my GP tomorrow to see if he can refer me to a neuro otologist as i have already seen ENT and been diagnosed with BPPV and query MAV (Migraine Vertigo0.  I don't get any headaches but have a dull pressure at the base of my neck, ears and behing my eyes.  ENT said my problem was probably caused by a head injury many years ago and i haven't noticed it until it got this bad.

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So, in summary, you see the "best in the world" and you still have the problem? Dread to think what that was costing! most people wouldn't be able to afford that.

No offence, but where's the benefit in any of this?

It  would be good to hear more positive outcomes in some of these postings. 

14

I think miss leading people with wrong info can be damaging it's had enough as it is.

MAV again presents in similar ways as all related. I suffer from peri menstrual migraine and boy the dizzies are so much worse hormones can play a big part in it.

My friend has MAV and light and movement is the worse for her she plus hormones, she has all the symptoms I do apart from positional.

You need to see a specialist an ent is great at

every day stuff but the first ent I saw said it

would all go in a few weeks mmmmmm 6 yrs

on!!!

Walking is one of the best things but can be the hardest as afterwards can feel awful and the confidence isn't there.

How do u do travelling ? Get much false motion afterwards ? Nausea ?

I have days like today when the walls are what I call " breathing " and when I look up its blurry and I feek like everything is bobbing about and I think why me 😞

I saw my consultant last week confirmed bppv on the left again which is causing me the probs again,was a 7 hr return journey 😞

Do u have friends and family that try and understand ?

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Not sure what's with the sarcasm any vestibular damage is done it can't be fixed by medication it's down to each persons brain to how it compensates if u had read my post I was 90% dizzy free for 3 yrs so it does work very well.

No I couldn't afford it either but I did what I could to get a correct diagnosis from some one who's field is dizziness.

I have lots of positiveness I couldn't walk 6 yrs ago and now run a business and have a little girl the bare facts are vestibular damage changes people's life and just when I thought I was ok and recovered i now can't walk without holding on I can't drive anymore

If u have positve experiences then great lets read it

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i have left sided BPPV confirmed by nystagmus during the epley manouver.  I also think i have something else going on as the pain i get in my neck, as have an abnormal bulging disc also affects me.  My eyes are all over the place.  I drive as a community nurse and it is probably the only time i don't notice the imbalance as my feet are off the ground but reversing is trick as if i look over my shoulder everything goes wonky with my vision.  I can't seem to get my eyes to focus some days and if i look upwards everything goes strange too. 

Thankfully i don't get nausea. It just seems that everything no longer looks of feels normal anymore.  On a good day everything looks clear and it is a lovely feeling to see things clearly but that doesn't last very long. 

It's hard to explain to someone who doesn't have it, all the different sensations because to all intents and purposes i probably look quite normal on the outside but inside everything is all over the place.

I was also on Naproxen for a trapped nerve in my neck.  I took it with good effect for months and then noticed i was feeling quite depressed, apparently it can cause depression so now i try to manage without and thankfully the pain is manageable at the moment.

I also think flying affects my ears and makes me more susceptible to a bout of BPPV.  I think i have now had about 5 bouts of it in the past 2 years.  I think i am having problems with the compensation following each successive bout and the intervals between one bout and another are becoming shorter.   I'm still hoping i can improve though.

I can't walk too far as start woblling up and down when i step up and down on uneven road, don't even know sometimes if i am walking in a straight line but try to set my eyes further afield and look forwards rather than straight ahead of me.

My work colleagues are sympathetic but management doesn't really get it and as my job involves driving and being out and about and then returning to computerwork i can be all over the place.  I have permanent tinnitus and partial deafness following the head injury assault at work 19 years ago.

Thanks for sharing your symptoms because i find i struggle to describe them in words that explain how it's affecting me apart from saying 'i'm all over the place'.  Stay strongsmile

I'm seeing my gp tomorrow to say i don't think i can continue working safely anymore. 

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Hi kate,  Ben here,

Please understand that I try to qualify my statements with " I not a doctor" and "I see things in black and white".  I do not intentionally try to mislead people, and I wouldn't want anyone to mislead me, but that is exactly what has happened with the myriad of specialists and doctors that I have seen.  They seem to be in a hurry to make a diagnosis, and then try to sell me something.  From hearing aids and drugs to rehab exercises, I have spent tens of thousands of dollars trying to get a straight answer.  That is why I said I tend to see things in black and white.  When someone who has a practice tells me one thing, then bends theri words and talks a long talk, and then tells me the opposite, I start to try to place the things that are measurable into catagories so I can keep track of what they are saying.  A lot of times they will answer a question that I ask with " yes and no".  When I hear that I go away in my mind, because I just can't have a yes and no answer.  I have to have straight forward answers and executable directions, and I can't go back and forth.  So I am sorry and I apologize if I didn't make myself clear enough to keep from misleading someone.  I am only trying to help.  When I  read Mike's account of what had happened I thought I can really relate because of my own experience.  I have had 3 different diagnoses.  I have exotopia strabismus right now as the last clinging symptom. With all of the different exercises and maneuvers, I was told by tharipists that the BPPV exercises might make me feel more of the sensation of woozyness, but that was good.  They said I need to do everything I can to bring on the feeling and my brain would learn to disregard it, and I believe it has worked.  I was also told all about diet, no salt, no caffeine, no sugar.  Then I tried some caffeine and it made me feel better, like I was more awake, and the therapist said that was ok.  So, I have extrapolated my opinion from all of that.  Please try googling ;  Vertigo Treatment - How To Treat Vertigo - YouTube and see the model of the Labyrinth that the doctor is holding, and listen to her speak on the BPPV.  I only want the best for myself and anyone who happens to listen to me, I mimic those that I think are straight shooters and I want to give the information freely that I feel is good information.  These are only my opinions and I usually try to qualify them as such.  So please forgive me if I have erred and remember that I too have a degraded ability to think clearly.  I am only trying to help.  I have nothing to sell, and care not for popularity, nor do I patronize anyone beyond what I feel is their merit.  For the past sixteen months I have not worked, I have only gone to doctors and therapy and been given tests and read upon this horrendous disease, listened to others, looked at videos and made posts on forums.  I think to this minute that what I believe is true and perhaps there are more than one diagnoises for the same symptoms and I need to see shades of gray, but right now I have made tremendous progress and I just want to share my delight with those who sound desperate.  I humbly apologize and hope I have not offended anyone nor sent them in a bad direction.  

Ben

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Hi Anne how r u ? How did it go with Dr?

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I think what I have learnt is there is a lot of grey not just black and white I am a black and white person but with dizziness it's a different story

I don't Google anything I used to 6 yr ago and it led me to a brain tumour, Parkinson's and so many other things that have dizziness as s symptom ! I suffer badly at the moment from

Health anxiety so I have stopped googling as it comes up with things that just are not true!!!

Like I say the main diagnosis for BPPV is nystagmus not for VN and if someone reads something they then believe to be true and it's not it can be damaging.

It's great to read you are making a good recovery as that's what is so important 😃😃

I to was 90% dizzy free for 3 yrs and I thought I had cracked it but am now 90% dizzy every day not driving any more and back to fighting a battle again so I to have to believe good days will come again and hurry up !!!!!

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Hi Kate

i went back to my gp yesterday.  He's now going to refer me to the 'dizzy clinic' and has given me some more tablets.  I have had about 5 bouts of bppv in past 2 years but it is the recovery from it and balance issues that are most problematic for me as my vision is also affected and find it hard to focus my eyes.  I have told him that it is having such an impact on my job that i will have to leave as i can't manage both working and trying to balance as it is exhausting.