New to Board – My battle with Vesitibular Neuritits

[John P.]

Hi all! I found this board recently after many, many hours of research on my condition. There seem to be many knowledgeable people here that truly understand what others are going through. Anyway, for me it began about four years ago. I remember working outside on a cool November day and getting a feeling of lightheadedness and general malaise. I came back into the house and didn’t “feel right” for the rest of the day. The next morning I woke up and everything was spinning. I had severe nausea and was vomiting. I was not able to do anything but lay in bed for the next couple of days (I couldn’t eat or drink anything for two days). The vertigo subsided after the second day or so but I was still dizzy and had a lot of imbalance. I was able to get into my GP and he told me that I probably had a viral infection of the inner ear, gave me antivert and sent me on my way. After about a week I was able to get back to some “normalcy” and return to work. This was a very scary situation for me since I’ve never experience anything like this before. A year later I had a very similar episode and it took about the same amount of time to recover.

Since that first experience with VN I’ve had approximately 10 episodes or so. About two years after the first episode my GP referred me to a local ENT who just checked my head movements in different positions and told me “there’s nothing wrong.” Well, this past August I had another severe episode. After this one I made an appointment with a doctor at a university hospital who was listed as an otologist, neurotologist, and otoneurologist. The hospital is over two hours away but I definitely knew I had to see someone about this problem. Anyway, my initial appointment with the doctor was this past October. I was seen at first by one of his assistants and after I described my symptoms the assistant’s initial reaction was VN. The doctor then came in and discussed my symptoms with me as well. He also said it appeared to be VN but he did say that the number of episodes I experience was “highly unusual.” I had a hearing test, which showed normal hearing. He also scheduled an ENG and an MRI to rule out other possibilities. I had my ENG and MRI on 11/4/04. The MRI showed nothing. However, the ENG showed that the left ear did not have the same “pattern” as the right ear. The doctor showed me the results of the caloric test that were in a graph format. Essentially the left ear had a “flat” reading, which is an indicator of vestibular weakness and is an indicator of VN. Anyway, he told me there’s nothing else that could be done and that the episodes of VN may or may not come back again. He wrote me a prescription for Valium if I do have a severe episode again. He only wanted to see me back if the episodes became more frequent.

On 11/26/04, I had another episode while visiting relatives in Richmond, VA. I was in bed all day on 11/27/04 and my balance was way off. This episode had some vertigo but mostly dizziness and imbalance. It’s over a week later and I still have imbalance especially in the morning when I first get out of bed. A month or so after the major episode in August I started having this general feeling of uneasiness and unsteadiness throughout the day. This is very hard to describe…almost like my head is in a fog. Sometimes when I’m in a crowd or a store I get this feeling like I’m going to run into somebody or something. This new feeling only started a few months ago and I’ve never experienced this even after my previous major episodes. This unsteadiness still continues. I’m getting frustrated by everything and sometimes think I’m the only one who knows what I’m going through. I think that the doctor I saw was OK but didn’t spend enough time evaluating my situation, but I keep wondering if there’s anything more he can do to find out why I keep getting these repeat instances of VN. The Cleveland Clinic is only three hours away and the Pittsburgh Ear and Dizziness Center is only two and a half hours drive away and I’m considering seeing someone there but I’m not sure yet. I’m sorry for my lengthy post but I just felt like I had to write this out and post here. I’m just hoping that someday the episodes will stop and I can return to “normal.” It’s just that I’ve had 4 episodes this year (some more severe than others) and I never really know when they will start. Has anyone ever had repeat attacks of VN? Is this something that’s more common than doctors think?

As a side note, I did run across a recent study published in the New England Journal of Medicine which suggests that methylprednisolone may be an effective treatment for patients with acute VN (here’s a link:

[url]http://content.nejm.org/cgi/content/abstract/351/4/354[/url]

Has anyone who’s had acute VN been given methylyprednisolone?

[crazylabyrinth]

Hi John. WELCOME. I have theoretically been diagnosed with VN (labyrinthitis) and have had it 2 years. I must say, your "episodes" do not sound typical of VN like the specialist said - u can have decompensation periods with VN but not repeated "attacks". Autoimmune inner ear problems spring to mine - have they considered this??? Or possibly MAV? It's just the "attacks" that gets me wondering.

Sorry youve had this so long and are still suffering. We are all here for you xxx

[jadeearth]

Hi John, Welcome to the Board. The individuals on this board are amazingly knowledgable and supportive. I would have thought I was going really crazy were it not for reading a lot of the archive and current info.

The Brain Fog and problems shopping are normal for vestibular disorders as you read the posts you'll see that for some of us they are the most difficult, as well as the anxiety and depression. Your attacks sound awful, I would check out the other clinics you mentioned.

I started getting dizzy in March, randomly and feeling foggy in head, was able to live threw it until one day it his me hard since then I have been chronic, and unable to live normally. I think it all strated with flu I had in march, my nuerotologist will not diagnose me with Labs but thinks it's BPPV. Anyway, he is willing to work step by step and I think that is important with a Dr. He perormed an epley. And we're taking it from there.

Take Care, you will find a solution!!
Jade

[treefarmer]

Hi John and welcome,

I can echo Jade's comment about the uneasiness and brain fog being just part of the drill with this stuff. You will find it hard to go into places such as stores where the brain has to go into overdrive to deal with all the sensory/visual inputs, but press on! Your inner ear has been damaged and the brain is getting wonky signals from it, and that's why you feel so weird. By pressing on and not avoiding those situations you brain can compensate for the damage and begin the process of returning to "normal." Just be aware that it can take months. Like CL, I'm into this for 2 years and there are still blips where I feel "off" and foggy/slightly drunk for a few days. I'm beginning to think it may just be par for the course for me now.

Since you are close enough to the Pittsburgh facility, are you also close to the University of Pennsylvania (I'm betraying my dodgy knowledge of geography in the east here)? You might post a thread addressed to Subs30 (if he doesn't see this and respond). He was treated at one of the balance centers of excellence at the Univ of Penn, and he swears by the facility there. They are real experts. Perhaps you can get hooked up with the docs there.

T

[John P.]

jadeearth...thanks for your support as well. My "uneasiness" just started this past September. I just can't believe that the doctor didn't seem to be too concerned after all the attacks I've had. When the severe one's hit I'm totally out of commission for at least 5-7 days. Thank goodness I have an understanding boss. I'm frightened to take any vacations or long trips since I never know when it will hit.

[John P.]

Originally Posted by treefarmer

Hi John and welcome,

I can echo Jade's comment about the uneasiness and brain fog being just part of the drill with this stuff. You will find it hard to go into places such as stores where the brain has to go into overdrive to deal with all the sensory/visual inputs, but press on! Your inner ear has been damaged and the brain is getting wonky signals from it, and that's why you feel so weird. By pressing on and not avoiding those situations you brain can compensate for the damage and begin the process of returning to "normal." Just be aware that it can take months. Like CL, I'm into this for 2 years and there are still blips where I feel "off" and foggy/slightly drunk for a few days. I'm beginning to think it may just be par for the course for me now.

Since you are close enough to the Pittsburgh facility, are you also close to the University of Pennsylvania (I'm betraying my dodgy knowledge of geography in the east here)? You might post a thread addressed to Subs30 (if he doesn't see this and respond). He was treated at one of the balance centers of excellence at the Univ of Penn, and he swears by the facility there. They are real experts. Perhaps you can get hooked up with the docs there.

T

treefarmer..thanks for your concern as well. Since my ENG showed weakness in the left ear will that ever get better. Does the vestibular system get stronger after the dizziness episodes? My main concern is that the vesitibular balance will never get back to normal The University of Pennsylvania is about an 8 - 9 hour drive away...I'll have to check into that facility.

[Subs30]

Originally Posted by John P.

treefarmer..thanks for your concern as well. Since my ENG showed weakness in the left ear will that ever get better. Does the vestibular system get stronger after the dizziness episodes? My main concern is that the vesitibular balance will never get back to normal The University of Pennsylvania is about an 8 - 9 hour drive away...I'll have to check into that facility.

Hi John

UPMC has one of the best:

University of Pittsburgh Medical Center Hearing and Balance

University of Pittsburgh Medical Center Hearing and Balance nurse by the name of Cindy

----use the toll free number of 1-800-533-UPMC(8762) and ask to be transferred to extension 72239 and either ask for Cindy or leave a message and she will call you back

Their(UPMC Balance Center) web site is located at:

www.upmc.edu/ear/Balance.htm

Also the Univ of Penn Balance Center is excellent---but 8-9 hours---long drive---not sure---about flights?

Univ of Penn Balance Center web site is located here;

http://pennhealth.com/hup/balance/

[crazylabyrinth]

Ok John - now that you have said you get vertigo with bugs etc - I understand more - getting vertigo/dizziness back with colds etc IS normal for VN. Getting attacks without a bug is NOT normal for VN.

Your balance nerve/centre will always be damaged - as will mine - it does not recover - BUT the brain compensates for the injury - this is what gets people "well" and "symptom free" not recovery of the balance system.

Yes I have heard of predisone being used. My ENT actually vaguely said he could put steroids in my ears or something....um no thanks! I think it is only useful at the ONSET of VN which for you has passed. The "attacks" are not new attacks of VN (if it is VN that you have) but "decompensation" whereby the brain forgets what it has learned. So no, in your case I dont think it would be helpful. Also I'd be wary of such a drug as there are strong side effects.

xxx

[studyin]

Hi John,

Welcome to the board!! After reading your story I was wondering if it is in fact just a nasty case of VN. It has been hypothesised that, in some, VN may be caused by the herpes virus. In your case this might explain the recurrent attacks and the viral feeling you have before the attacks. I'm a herpes sufferer too and know the feeling although I don't get full blown attacks like you describe, although I do feel much worse when an attack is on in terms of disequilibrium and mild depression.

If this is the case, I'm wondering if a daily antiviral med might work for you such as acyclovir. Or apparently St John's Wort also reduces herpes attacks.

Curr Opin Neurol 2002 Feb;15(1):5-10
Magnusson M; Karlberg M
Dept of Otorhinolaryngology, Lund University, Sweden

Peripheral vestibular disorders with acute onset of vertigo

Disorders of the vestibular nerve and end organs are the most common causes of vertigo. In acute vestibulopathy, suspicions of the activation of herpes virus infections as a causative agent are increasing, but no reports on the treatment of such infections are yet available.

or this....

Enhancement of the eighth cranial nerve and labyrinth on MR imaging in sudden sensorineural hearing loss associated with human herpesvirus 1 infection: case report

AJNR Am J Neuroradiol 2001 Aug;22(7):1380-2
Lavi ES; Sklar EM

The case of a 61-year-old woman who presented with herpes labialis, subclinical meningitis, and sudden onset of bilateral sensorineural hearing loss is presented. Contrast-enhanced MR imaging showed marked bilateral enhancement of the intracanalicular portion of the eighth cranial nerve, right cochlea, and left vestibule. Polymerase chain reaction was positive for human herpesvirus 1 obtained from the cerebral spinal fluid, which suggested the diagnosis of viral neuritis.

Cheers....Scott

[John P.]

Originally Posted by crazylabyrinth

Ok John - now that you have said you get vertigo with bugs etc - I understand more - getting vertigo/dizziness back with colds etc IS normal for VN. Getting attacks without a bug is NOT normal for VN.

Your balance nerve/centre will always be damaged - as will mine - it does not recover - BUT the brain compensates for the injury - this is what gets people "well" and "symptom free" not recovery of the balance system.

Yes I have heard of predisone being used. My ENT actually vaguely said he could put steroids in my ears or something....um no thanks! I think it is only useful at the ONSET of VN which for you has passed. The "attacks" are not new attacks of VN (if it is VN that you have) but "decompensation" whereby the brain forgets what it has learned. So no, in your case I dont think it would be helpful. Also I'd be wary of such a drug as there are strong side effects.

xxx

CL..thanks for the information. Generally between "attacks" which could be months to over a year I'm symptom free and usually feel fine up until the one I had in August. Like I mentioned previously, they are usually so severe that I cannot get out of bed for 2 - 3 days. During this time I cannot eat or drink anything and generally lose between 10-12 pounds. After the 2nd or 3rd day I'm able to try to get out of bed and maybe eat a few crackers or clear soup and that's about it. It's usually a week or more before I can get back to work and I'm still weak. I've had two of these "severe" episodes this year already. I've also had a couple of "milder" ones where I don't have the vertigo, but do have imbalance, dizziness and fatigue where I have to stay in bed for a day or so, but still have imbalance for a week or longer. I don't know if this cycle will ever stop and neither does the doctor. I'm just very frustrated that he doesn't feel that he needs to see me again...very depressing

John

[John P.]

Subs30..great info there! Always good to have a direct contact. Have you ever been treated there? Any recommendations for doctors? My parents only live about 45 minutes from Pittsburgh and I just may try and get an appointment at UPMC. I guess it would be a good idea to bring the results of my ENG, MRI and hearing tests?

[studyin]

Hi John,

Yes, it might be worth a try to have a daily acyclovir just as a trial to see if the attacks stop. A good time to experiment given the frequency of your attacks. Can you correlate attacks with stress at all? Stress of course, can trigger a herpes attack. Another thing might be to take acyclovir or famvir when you feel an attack coming on to see if it stops the attack or possibly reduces the fallout.

All the best....Scott

[studyin]

Hey again John,

I just checked out the link you gave to the NEJM article. It is an excellent paper and very current! I missed this one. Very strong study too as it was a prospective, randomized, double-blind trial. I basically gave you info above that you might have already seen in this paper as it also addresses herpes as a cause - DOH! Thought I'd write down some of the highlights for others to see of these findings as it is the most up-to-date info on VN treatment so far.

Methylprednisolone, Valacyclovir, or the Combination for Vestibular Neuritis
M Strupp et al
N Engl J Med, Jul 22 2004, 351(4) p354-61

Background: Vestibular neuritis is the second most common cause of peripheral vestibular vertigo. Its assumed cause is a reactivation of herpes simplex virus type 1 infection. [It] has an incidence of about 3.5 per 100,000 population. Currently, a viral cause is favoured. The evidence, however, remains circumstantial. Indications are that the vestibular ganglia are latently infected by HSV-1, as are other cranial-nerve ganglia. Recovery after vestibular neuritis is usually incomplete....in one study, caloric responses normalized in only 42 percent in a study of 60 patients. Despite the assumed viral cause of vestibular neuritis, the effects of corticosteroids, antiviral agents, or the two in combination are uncertain.

Results: Of the 141 patients, 38 were randomly assigned to the placebo group, 35 to the methylprednisolone group, 33 to the valacyclovir group, and 35 to the methylprednisolone-plus-valacyclovir group. The number of patients who had complete or partial recovery was 8 of 30 in the placebo group, 22 of 29 in the methylprednisolone group, 10 of 27 in the valacyclovir group, and 22 of 28 in the methylprednisolone- plus-valacyclovir group.

Conclusion: Treatment with methylprednisolone alone significantly improved the long-term outcome of peripheral vestibular function among patients with vestibular neuritis, whereas treatment with the antiviral agent valacyclovir did not improve the outcome. The combination of these drugs was no more effective than methylprednisolone alone. Replication of HSV-1 in the vestibular ganglia may conceivably have already occurred by the time the antiviral drug was initiated (thus it was not effective in this study). Furthermore, there is good evidence that the major damage in vestibular neuritis is caused by the swelling and mechanical compression of the vestibular nerve within the temporal bone, which is also assumed in Bell’s palsy. The anti-inflammatory effect, which results in reduced swelling, may explain why treatment with corticosteroids results in improvement in both disorders.

There was something written in this paper that I didn't like reading however. It said the following: "On the basis of the incidence of this condition, a substantial and permanent unilateral dynamic deficit of the vestibuloocular reflex, which cannot be compensated for by other mechanisms, develops in approximately 4000 people per year in the United States alone." I followed up the reference for this comment which said the following in its abstract (I can't get the full article yet unfortunately):

Vestibular compensation: a review of the oculomotor, neural, and clinical consequences of unilateral vestibular loss.
J Vestib Res 1995 Mar-Apr;5(2):67-107
Curthoys IS; Halmagyi GM - University of Sydney (my university!!)

Vestibular sensory input is just one sensory input involved in the control of functions such as gaze and posture. The recovery of gaze and posture control after partial or complete unilateral loss of vestibular input is reviewed. The relatively rapid and apparently complete behavioral recovery after unilateral vestibular loss was once regarded as justifying vestibular compensation being used as a text-book example of plasticity in the CNS. This review emphasizes how false that impression is: Detailed examination shows that vestibular compensation is not a single process that recovers completely at a rapid rate but is made up of a number of subprocesses that recover to different levels and at different rates. In some subprocesses there is very modest recovery; in other subprocesses there is probably substitution of other sensory input for the affected vestibular input. It also seems that in some instances new behavioral strategies appear to be learned to allow gaze and posture control to operate as if normal. Recent evidence concerning the physiological and pharmacological mechanisms underlying vestibular compensation is reviewed.

Hmmmm....can't see anything in there that says total compensation is unlikely but rather it is obviously not a simple and linear process at all, and don't we know it!!

Sorry this has been a such long post but it's info we all need to know about. Crazy Labyrinth, maybe you can ask London about the methylprednisolone treatment.

Scott

[crazylabyrinth]

May try asking them....Drugs worry me though and Ive heard bad things about that one

John - this does not sound typical VN - have they looked into menieres and MAV? being symptom free between attacks is almost certainly not VN...ummmm....anyone else got any ideas?

xxx

[Subs30]

Originally Posted by John P.

Subs30..great info there! Always good to have a direct contact. Have you ever been treated there? Any recommendations for doctors? My parents only live about 45 minutes from Pittsburgh and I just may try and get an appointment at UPMC. I guess it would be a good idea to bring the results of my ENG, MRI and hearing tests?

Hi John

Did not go to UPMC since Univ of Penn was much closer---talked to them---in the beginning quite often---think they will want to run new tests---but take old with you---not sure what their exact procedures are---how they do the exam---Univ of Penn---takes all day---if you go to the web site I sent you for them and to their staff page---you see every one of them---during that day---the last person you see---and you spend about an hour with him is the Director of the Balance Center---who coauthored the article in the "sticky" above---Chronic Dizziness"---he is the one who takes all results and decides on what it is you have and your treatment.

Good luck!

[willsmommy]

Hi,

I am in a bit of a rush so have not read ANY of the other posts. But can I just reassure you that what you describe is EXACTLY what happened to me. In fact I would get better, the have another attack of major dizzies and like you would then take a couple of weeks to recover. What I can tell you is this, VN probably started your whole thing going BUT it is not recurrent VN each time as such. Rather that you are having spells of decompensation or possibly have develeloped a mild case of BPPV as a result of VN. VN is a short run virus (circa 3 weeks) its not something that keeps recurring often. So when people say that they have had VN for 3 years, what they mean is that they have had the virus and have failed to make adequate compensation, not that they are ill as such. Hope that makes sense. Any ways I had all the tests and like you showed the weakness in my left ear. For some reason the recurrent episodes have stoppped and now I just get risiusal symptoms, this has taken a few years. Most days are pretty normal but I still have residual symptoms, maybe always will. Oh the other thing that my neuroto mentioned to me with these recurrent attacks is that its a possiblity that it may be caused by gradual vestibular failure, hence the on off nature of it. But I doubt thats the case with you as the damage like me is only on one side. Hope you feel better soon. Oh I also had all the other things you mention and likewsise they lesson over time.

[labyrinth6800]

Hello all.

I am glad to find a site that seems to have knowledgeable people experiencing a similar diagnosis as I have. I have been diagnosed with viral labyrinthitis. I am 3 months in and am wondering if I will be living with this for the rest of my life. My symptoms originally included severe cases of vertigo and nausea that would completely debilitate me for a week at a time and then slowly subside the following week. I would then relapse and experience it all over again. I have had 6 relapses and am now in a constant state of vertigo and nausea with the nausea symptoms subsiding in the evening. The vertigo is with me constantly.
I have seen a family practitioner, a neurologist, an ear, throat and nose dr., and a neuro-otolaryngologist. I have had an MRI, 2 CT scans, 3 audiology tests, ENG, and blood tests done. None have provided any additional information on my condition. I have been prescribed Meclizine, Phenergan, Reglan, Valium, and Zophran. Only the valium has seemed to relieve my symptoms somewhat during my extreme week of vertigo and nausea. The rest of the medication just seems to put me to sleep.
My neuro-otolaryngologist is now passing me on to a gastrologist because he cannot figure it out and thinks there might be a potential stomach issue. However, I do not think it is the case due to my continual experience with vertigo. I have not had any vomiting but have come very close several times. I am wondering if it is possibly Minieres Disease or something similar to it.
My current condition is partially debilitating in the morning and early afternoon and I have not worked in the past 2 months. My short-term disability insurance company has denied my claim because I cannot get a definitive diagnosis or treatment plan. I am getting very frustrated because I am far from being healthy and every physician seems to pass me on to someone else when they run out of options. They all seem to have a confused look on their faces when I surpass the time frame they said it would take for me to heal.
From what I have read on the Internet, many continue to have these symptoms for months and years. I have also read that forcing yourself to become active will cause your brain to adapt quicker and the worst thing you can do is stay in bed. With that, I have been thinking about going back to work but I am reluctant in the event I relapse and I do not know how I am going to be able to deal with the debilitating symptoms throughout the day. Does anyone have a similar condition and recommendations for dealing with it on a daily basis? Also, has anyone been prescribed any medication that helps with the dizziness and nausea or what type of physician I could see that would be able to provide some information on treatment and length of time until recovery? Are any of you debilitated to the point where you cannot work?

Any information or advice on dealing with this is appreciated!!
Thanks in advance!!

[studyin]

Hi 6800,

Welcome to the board. You're in very good company here and, you're quite right, most have us have been to hell and back with this thing and as a result have pooled a ton of good knowledge together here. In fact, as a whole I think the professionals should be logging into this site to learn about the *real* issues that come with these sorts off illnesses.

First off all that you are saying is not at all unusual for inner ear disasters such as labyrinthitis, VN and some others. Your symptoms do sound particularly nasty but again not unusual at all. I'm really quite surprised that your doctors are so dumb-founded by your sysmptoms. Just amazing how little some of these pros seem to understand about this. Makes me wonder what they study at university really.

The fact that valium gave you relief is yet another sign that it's vestibular as far as I'm concerned - it was the only thing that worked for me too. Don't listen to this stomach theory - I just cannot see where a doc came up with that. Your nausea is generated from the bum inner ear signals (and possibly anxiety).

I can only say that you'll have to just let this thing run it's course. It sounds like you are already coming down the other side of this thing with the gaps between attacks becoming longer. They get less and less and then compensation eventually happens and you recover completely. It's very hard to give you a definite recovery time but it can be a long road or you may come out of it quickly. I know a guy on here last year was as ill as you describe but was almost 100% again by the 5 month mark. For others like me it's been 15 months but I'm in the 90% region of recovery, I'm back at work and back to full capacity work-wise.

Can I ask how you are in terms of anxiety? Has it created that for you?

Hang in there...you'll be fine even though it's hard to imagine right now.

Best...Scott

[John P.]

Well..yesterday was not a particularly good day for me. As was the case for the last two weeks I awoke in the morning and got up out of bed and the off balance was there again. Not a spinning like in vertigo but an off balance where it's difficult to walk straight. I've had this same feeling since 11/26/04 when I had one of my "episodes." It doesn't seem to be getting any bettern and some days it's worse (like yesterday). As I move about through the day there seems to be some improvement but I always have this feeling of unsteadiness. The neurotologist I saw last month is over 2 hours away so I'm thinking about calling him to find out if I could see a local ENT at least for a evaluation. I certainly hope this passes because it's difficult to make it through each day.

[crazylabyrinth]

Hi Labyrinth and welcome.

I think its so sad and pretty horrific really that you have seen all these specialists and yet dont have answers. Where in the world r u?

Dont get despondent about this going on for months/years as so far uve only had it 3 - this is early days - u will prob be on of the lucky ones who gets it for 6 mths - so do not panic.

I dont work with it - cos im a teacher and its a physical job - I hope to do part time next year. I am on benefits yes.

We are all here for you so post whenever you want xxx