Hi there,
Just back from a visit to my GP. She is convinced I have Labs as they saw loads of cases last autumn when I came down with it. (My ENT says it's BPV). I was kind of cheered at this as I thought once you had recovered (eventually) from Labs you were OK and it was BPV that could recur. However she said once you've had Labs you're more likely to get it again!!!!
Is this true????? :eek:

Hi Hilley,
I share a similar diagnosis with you (uncompensated vestibular neuronitis) - though I'm certainly no expert, everything I've read thus far tells me that it's not that you're likely to get another case of labs, it's just that once you've had the initial vestibular injury, it will always be there. Though your brain will, most likely, learn to compensate for the damage that's taken place, there are times when you will feel like you have another case of it due to the fact that your symptoms have come screaming back. This is called decompensation, and can happen for more obvious reasons, like illness or stress, or for reasons that you might not even be able to figure out. Do a little research on this whole process and it will help you better understand it. (Have you taken a look at the video clip that Scott posted? I'm looking forward to viewing it as soon as I post this to you, and hope to take away an even better understanding of this very complex process.)

If I'm not mistaken, there are several here who have had a combination of BPPV and other vest. dysfunction combined - it can be difficult to diagnosis, given the fact that access into that tiny, tiny area of the inner ear to see just what's going on is impossible, tests can be inconclusive, and often treatment and diagnosis is based on the symptoms you present with.

Best of luck to you as you process through this maze of vestibular "joy"- we are all walking it with you!! :)
Robin

Thanks for your post Robin. It's nice to know people here understand as it c.an be hard to explain to friends and family. For no reason that I can see things have got much worse since last wednesday and i feel very scared and confused about it all. I'll go check out that video clip and see if it help...

Take care,
Hilley

>>>However she said once you've had Labs you're more likely to get it again!!!!
Is this true?????

Hi Hilley,

No, not true and highly unlikely. Your doctor was likely confused with the compensation process. If you go to the archive (first post) and click on Dr.Rauch's Online Otology Clinic, you'll find a good explanation video there titled "Vestibular Compensation". That should make it all clear.

Best...Scott :cool:

I WAS GIVEN THIS UNOFFICIAL DIAGNOSIS AS WELL IN OCTOBER...AFTER A SINUS INFECTION I STILL HAD MUCH LIGHTHEADEDNESS AND IT WAS HARD TO FOCUS IN CERTAIN SITUATIONS.......WHAT WERE YOUR SYMPTOMS? I HAD BLOOD WORK DONE AND ALL CAME BACK FINE..DOC WANTED TO CHECK MY THYROID, SUGAR AND CHOLESTEROL. SO...HE ASSUMED SINCE ALL CAME BACK NORMAL, HE WAS GOING TO TREAT ME FDOR ANXIETY.....NOT SURE IF THIS IS THE CASE HOWEVER, BUT I'M SURE I'M ANXIOUS SINCE I STILL unfortunately HAVE THIS LIGHTHEADED SYMPTOM AND HAVE A HARD TIME BEING OUT ON MY OWN IN PLACES .....EVEN WHEN I'M WITH MY HUBBY, I STILL GET THIS 'OFF FEELING'....WANTING TO KNOW HOW YOU FEEL NOW AND IF YOU'RE EXPERIENCING ANY OF THIS SYMTPOM?

WHAT WAS DONE FOR YOU?

THANKS.

Hi Scott,
Thanks for your reply. I thought Labs didn't recur but my GP was so sure of herself she really scared me.... I guess I'm in decomp now and just not handling it as well as you guys - I'm only in month 4 and some days don't think I'll make it thru to a year.
Sorry you are in a bad patch too - I hope it gets better soon




Hi Manchak99
Yes - I get the lightheaded feeling a lot. My symptoms started in the middle of the night with vertigo and nystagmus. If I kept my head still it subsided but as soon as I angled me head to either side it came back. I was told it was Labs by my doc and given Stemetil, which I took for a day. I also had headache, fatigue and couldn't read or watch TV as my sight was off. This seemed go after 3 weeks and then I rolled over in bed and a new set of symptoms occured - no true vertigo but dizziness, lighheadedness, brain fog and lots of visual disturbance (things look wrong, perspective is wrong , colours are wrong and things seem to move around and shift). This had been going on for 3 months and not really improving - much worse at the moment but don't know why..... I'm in the UK and lots of people seem to have this - apparently there were lots of cases in the South East in Autumn. I've had loads of blood tests done and all are clear. Yes, one of my GPs did say it was all in my head!! I went to see an ENT and he said it was BPV and the compensation would take 3/4 weeks. After 2 months I saw a different ENT and he said it could take 6 months..... I've had no excercises or suggestions of anything to do to help. No meds have been offered either so I'm currently not taking anything. I'm also not sleeping (for about 3 months now) and am sure this is contributing to my symptoms but I can't seem to sort it out. I have Zopliclone to take but try not to take it too often. To be honest, I feel like I'm my own with this and the most help I've found is this board! I really hope you are feeling better soon, and if you don't think it's anxiety chances are it isn't......
Could you go and see an ENT?

Hilley

I dont know if I quite agree with everyones opinion on this matter -- considering that I dont think I am going through a decomp myself.

This is my 4th time having symptoms relating to the inner ear, I do believe 1 of those 3 other times was a decomp event, but not necessarily each time. This current bout seems to be lasting forever... I hate it... I dont however think it is decompensation.

I would agree that 'once you get this' you are more susceptible to further trauma. Ofcourse this is all speculation.... and even best guesses by the top doctors/scientists are just that.

All I can say is that from my experience -- yes, once you get it, you can get it again more easily... Does that mean you will? Nope....

Tummy

It's been a while but I thought I'd chime in...

Tummy: If the cause of the inner ear problem was a virus (as is usually the case in labyrinthitis), then to get it twice you need to catch a second virus which specifically effects the inner ear - it's not just any old virus, and while I guess it is possible to get two viruses both of which are targeted at the inner ear, but it's quite unlikely (in fact if the viruses are structurally similar then the first virus may give you immunity to the second).

Most damage to the inner ear is permenant but recovery occurs through your brain learning and adapting to the deficit (compensation), decompensation is when your brain "resets" itself or become less good at this process. Decompensation commonly occurs due to stress, inactivaty, or other illness - and something as simple as a cold can cause a return of the all symptoms, but the injury has remained stable, your brain has just forgotten how to work around it - luckily, normally after decompensation the brain is quicker to learn and adapt and recovery is much quicker than after the initial episode. But some people actually suffer more severe (and sometimes more protracted) symptoms with decompensation than the first time around.

Of course there are other conditions (menieres, migraine, certain types of herpes virus etc etc) which can cause fluctuating/unstable deficits,where a person may suffer a number of attacks - and it's not uncommon to improve and be symptom free between attacks. If someones caloric responses are continually dropping then this would indicate that labyrinthitis is not the cause.

Hilley: It's not unusual to get BPPV as a secondary problem caused by labyrinthitis. I guess it's probably something to do with scarring on the canals making it easier for the crystals get to where they shouldn't (which is what BPPV is - misplaced crystals). TBH, I wouldn't take either your GPs or your ENTs word for it, GPs may have read a paragraph in a textbook, and even ENTs spend less than a few days learning about the vestibular system as part of their training. Really you need to see an neurOTOlogist (as opposed to a neurologist) but that's easier said than done in the uk.

Given the choice I'd choose BPPV over labs anytime...it's very very common and 60% of BPPV cases recover on their own and pretty much the remainder are easily (and instantly) treated with repositioning manuavers (epley etc).. Labs can be a tricker beast... ;-)

One thing I noticed about your post is that you say "when I rolled over in bed I got really dizzy", which is very very very (and I repeat "very") typical of BPPV. In fact most descriptions read "attacks occur when the patient rolls over in bed", as labs is caused by a virus then the dizziness/vertigo is constant to some extent though it is exacerbated by movement (and occasionally position change).. where as with BPPV it can produce constant symptoms but they tend to triggered by positional changes (lying with your head back and moving it to an angle is the most common). There's loads of good info on web about bppv (REMOVED website is a good place to start - but if you fancy trialling some home manuavers the new modified epley manuaver from the archives of this board is now considered better than the exercises he recommends). Of course in your case it could be labs, but I thought I'd mention it... out of interest did the ent do a dix-hallpike manuaver on you, what about other testing?

Bennie
Just wanted to say that that was one of the most comprehensive explanations on labs/bppv I have read...well done.
Having had both, first the labs (37%loss in right ear) and two years later a big bad case of BPPV, I often worry about recurrences. I cured myself using the MEP, both my doctor, an ER doctor and my ENT did nothing to help me, all of them told me I would be better in 6 weeks...go figure.
Thanks again for the clear explanation
FC

Hi Bennie,

Glad to see you back too - your explanations are brilliant. How have you been on the dizzy front?

Best...Scott

Hi Benny,
Thanks for your explanations - when my symtpoms first started I think you are right - they definitely sounded like BPV e.g. started when i rolled over in bed and if I kept my head still the vertigo stopped. This slowly disappeared over 3 weeks. Then when i rolled over in bed a second episode happened with out any positional vertigo (constant dizziness, lightheadedness, sore neck, visual problems etc). I saw the ENT during this period and the Dix manouevre didn't bring on any vertigo. Does this mean this current episode wasn't BPV? It's been going on for 3 months now and I'm at my wits ends. I don't understand what's happening to me and i struggle through every day. I have constant feelings of movement - e.g. being pushed, pulled around or feeling like I am swaying or turning when i am not. The docs are fed up of me - I can't go back to the ENT until Easter ..... I don't have any suggestions of what to do. I am paying privately to see a therpist who has had BPV too, just to have someone to talk to....
Any thoughts gratefully received!

Hilley

Hi Hilley
Even after the crystals are out of the canal, you can and may experience "feelings" of dizziness without having any vertigo. This is your brain adjusting to a messed up vestibular system. Some people have none of this after getting the Epeley done, they just go off and everything is normal. But even after BPPV there is a compensation period needed as your vestibular system has been messed about with and there may have even been some damage done. THis doesn't mean that you will always feel this way, it will come and go with the good times lasting longer and longer and the bad times being shorter and shorter. The recovery from my labs was very similar to my BPPV, I don't know how much the damage from the labs affected how I have recovered from the BPPV, but the feelings were pretty much the same. THat lightheaded, foggy, off balance feeling. I often explain it to my husband that I feel like my brain isn't getting any oxygen. So this isn't another problem like labs by the sound of it, it appears that your brain is going through the compensation process and it has to work so hard it can actually make your brain tired!
Meanwhile, keep moving, get outside when you can and walk, ride a bike if you are able, whatever you like to help your brain relearn some new balance trick. You may feel this way for a couple more months (or you may recover even faster) but either way I can pretty confidently say you will get better...think where you were two months ago!
Hope this helps
FC

Hilly: BPPV doesn't just cause vertigo on positional change, it can cause more constant symptoms (possibly something to do with the crystals getting stuck on the tiny hairs - I think I read somewhere.. but they disapate eventually anyway).... Firechicks right, in that compensation needs to occur, keep active and things should improve.... but if you're symptoms start to worsen on positional changes - rolling over in bed for example, then it might be worth performing the modified epley "just in case"...

Scott: Hi, thanks for asking, I seem to of had a bit of a bad run lately, and I've got some other "unidentified" health problems which seem to be aggravating the dizzies..

I have constant clogged ears and pressure and all tests came back fine for me too except for a retention cyst in the sinus area which I was told was no big deal everyone gets them. I had my doctor tell me I had anxiety disorder and wants me to take meds for that, I do not think that is it. I am now taking an antibiotic for a bacterial sinus infection according to my ent. I asked what happens if this doesnt work. no answer as yet as I only spoke to a nurse as doctor wasnt avail to speak to me . Going for an allergy scratch test on Friday, meanwhile I am miserable, not even looking forward to Christmas. Any advice would be appreciated.

A new study has been made available to answer this question definitively titled:

Low recurrence rate of Vestibular Neuritis: A long-term follow-up
Neurology. 2006 Nov 28;67(10):1870-1

In summary:


Acute unilateral vestibular neuritis (VN) is a common cause of peripheral vestibular vertigo and accounts for about 8% of cases who present.


Molecular biological studies have presented strong evidence that VN is caused by a reactivation of latent herpes simplex virus type 1 (HSV-1) in the vestibular ganglia.


The long-term recurrence rate of VN for the entire follow-up period was 1.9%. In both patients, the second occurrence of VN affected the contralateral ear with respect to the initial manifestation (one left, one right).


Patients rated the clinical degree of symptoms of their second occurrence of VN as 70% and 50% less severe than the initial complaints.


So, the chance of a recurrence is less than 2% and even if you were this unlucky, the symptoms are far less severe anyway. Not to be worried about.

Cheers....Scott :cool:

Hey Scott
Glad you found this. Even though I pretty much knew my chances of getting labs again were very low, it's nice to see it in black and white.
I can handle the recurrence of BPPV because I am constantly on the lookout for it and know exactly what to do if I suspect any crystals are out. Would love to be like subs and not have had any recurrences since the initial attack, but the blip in july was so mild and lasted about 10seconds, did the MEP and it was Gonzo without much residual symptoms.
I think a lot of the anxiety labs/VN sufferers deals with is related to the possibility of it coming on again. I know when I first went back to work after my labs I was just dreading it, possibly because it happened in the station the first time. I would be feeling very foggy and gross and would think it was coming back. I wish I knew then what I know now (thanks to you guys with all of your wonderful research).
Hope you are doing okay, sorry to hear about your GF. Esp hard with the Season approaching. I hope you have lots of family and friends to spend the holidays with and have some good times. (don't know how you do it in a warm climate, (mind you, we are losing our snow as I type as it is plus 5 and raining today!))
FC

Scotsman...thanks so much for that study. Noticing that I have seen some improvement...my shift then started to worrying about it all coming back. Funny how that goes.

Your source is great! Good to know. Thanks so much.