i visited my first ent dr yesterday with a sub specialty in 'otology'(neuro otology?) i was very optomistic on finding the cause of a ten year balance problem.id seen nuerologists but never ent.anyway he performed a few physical tests(laid me on the trolley with my head hanging off the edge and twisted myhead slowly from left to right,while looking at my eyes) checked my ears,my tongue,asked me to fill my cheeks with air like a gold fish,enquired if my ears ever caused pain ,i replied No) then confidently insisted my ears were not the problem and to see a neurologist.should i accept this or seek a second opinion,it doesnt seem right,maybe i'm unwilling to accept the truth after months convincing myself this dr would answer all my queries.has anyone here seen an ent dr and had a more thorough examination/investigation?

Any problems with your hearing?

A 10 year problem is a very long one - any history of migraine headaches? In yourself or your family?

He checked for BPPV which would make that unlikely, Labyrinthitis always gets better eventually (and certainly wouldn't be a continuous problem at 10 years), Menieres usually burns out inside 10 years and causes hearing loss.

A neuro is probably not a bad idea. If it is unlikely to be migraine (ie. you have no history, family history, no visual problems), there are a few very rare causes of imbalance like high frequency tremors in the legs, progressive supranuclear palsy -- but these are extremely rare compared to migraine as a cause of dizziness and imbalance which is very common.

Adam

Just wanted to add that vestibular dysfunction from labyrinthitis could and does last 10 yrs in some people if not treated with VRT....My hospital told me they see many people like this. So dont rule it out.

Otology is an ENT basically. You need NEUROTOLOGIST. Could you ask for a referral to one of these? xxx

Adam:Not wanting to disagree, but about 40% of people with stable vestibular dysfunction (aka labyrinthitis), fail to improve significantly untill they recieve VRT (as CL says). And there are a small number who VRT fails to help (panic/anxiety or other secondary health problem being the main reason for failing to compensate). And even those who are essentially recovered sometimes have minor residual symptoms... similarly menieres can be a lifelong ailment (though it can burn out - and even then it can leave people chronicaly imbalanced - which can be also addressed by vrt)... BPPV can be missed (especially by an ENT)..... of course migraines a possibility, but as CL says tiago should get to a neurOTOlogist

I agree with all the above.

However, I do not believe that residual symptoms after 10 years post-Labyrinthitis would be severe enough to be making daily life miserable and needing to seek help. I just believe other diagnoses need to be considered if that is the case.

I agree that without VRT that positional changes, anxiety etc. could result in life-long problems after Labyrinthitis, but that they would rarely if ever result in severe imbalance.

adam: Don't want to turn this into an argument, but there is a small percentage of people who fail to show ANY improvement or compensation after labs (even with VRT), and there is almost 40% who fail to significantly recover (and are severly disabled - imbalance being the most common symptom) without VRT, and it's been shown those within this subset may *NEVER* improve until a course of VRT is undertaken. There a a few studies on pubmed which backthat up - but I'm not sure I can put the links on here....

Agree with BG - I know many people via the work I do with long term problems after labyrinthitis.

BG
Long time no hear - how are you doing? xxxx

Don't know if I am following both sides of this, but sounds as both sides are arguing the same thing. I have to say that in Adam saying that after ten years there has to be something else going on, I'd have to agree that something else is going on that is not allowing someone to fully compensation and the body to heal. I really don't think there is enough information on this for someone to be right or wrong. There are so many components to the whole central, vestibular, vision and neurological system to know what is what or what is actually happening. Most of the people on this board know more than the doctors out there. While one test supports one theory there are other tests that support otherwise. These balance tests don't seem to really support anything as they can give false negatives/positives and just because it is showing something for one thing, reseach turns around and says well it can do this but not necessarily mean this.

If someone is severly imbalanced after such a long period of time, then there has to be something going on that is stopping them from compensating. Is is possible that there is damage to more than one of their balance structures, therefore, there is something else going on other than just damage to their vestibular system. (I feel so sad for people living like this for years.) It amazed me the other day that I mentioned to someone meniere's disease (I was not diagnosed with this, but merely speaking about it in my conversation) and they asked what is that. This junk has been my life for over a year and I can't believe someone didn't know what meniere's is. Just proves how much this inner ear stuff and the whole balance systems is unknown to people until you become one of us.

I don't think we will know anytime soon, but the best we can do is work on doing every positive thing we can do and I know that VRT is a good start as it has worked for so many others.

Sorry for chiming in, but this stuff has been on my mind all year and since it was brought up, I thought I'd throw my two cents in as I'm sure everyone else out there feels the same way on this whole inner ear head monster thing. I'm suppose to be given orders on my next neurotogist visit for an ENG, but I've already had so many other tests including the rotary chair so I'm really debating on weather or not this actually will tell the doctor anything new. I'm really wondering if I should put myself through this.

Gloria

I agree its not worth arguing about as none of us (nor any in the medical profession) even know what Labyrinthitis is.. whether it is even viral in nature, for example.

Response to VRT will tell a lot about whether there is an active process still occurring, or whether it is simply a compensation issue.

Just to add my five pence worth re - there is a small percentage of people who fail to show ANY improvement or compensation after labs (even with VRT),

As Gloria says, half the time it's impossible to know if someone actually has labs and therefore if that is what they have failed to compensate from. You can respond to migraine meds 100% when an ENG indicates a peripheral deficit. I have a friend who is free of her symptoms on pizotifen who had an initial VN diagnosis after her caloric test.

I think this is worth saying as until someone has pursued every avenue, including migraine meds, it would be wrong to assume that they are someone with labs who has failed to compensate. They might, for example, be someone with migraine who has got the wrong diagnosis.

best,

Yeah, agree with all the above....

Just to clairfy, I suspect those who fail to compensate have a secondary problem interfering with compensation (including lack of stimulai), and most who fail to compensate at all propably have serious interferring factors (stroke victims etc)... and as adam says VRT is quite effective, so failure of VRT is indicative of either an interferring factor (panic/anxiety or other illness) or an unstable problem (migraine/menieres..).. but I do think VRT should be the first point of call for most people who "fit" the general labs picture (once interferring factors have been dealt with)..



hbep: afaik, I thought it was possible MAV can cause caloric weakness (in the same way migraine can damage the eyes). Also there is often a onesided caloric weakness in the general population, which is why ENGs only see the part of picture...

CL: Hi yeah, it's been a while, things are pretty much the same here, I'm just going through a bad spell lately, which is a pain, but it's not as bad as it's been (though I've never really been as good as I was a few years ago).... I've been working a lot (I work from home) which can't be helping things.... How are things with you? are you still teaching?

I think this is an excellent discussion and there should be more of it..

I apologise to the thread creator though - maybe we should start a new thread!

It's a terribly hard thing to understand. Someone with a diagnosis of Labs who feels dizzy years later when sitting completely still - do they have Labs? The vestibular system is inactive when a person is completely still - so does this mean the issue is compensation (over or under-compensation), or is something actively occuring (vestibular neurons firing when they shouldn't be).

It wasn't long ago it was really hard to find anything in the literature about chronic dizziness that wasn't related to panic/anxiety. It seemed as though the belief was that vestibular symptoms were always episodic in nature. I'm glad that has changed.

Adamw,
I agree - excellent discussion - your last paragraph about not being able to find anything in literature about chronic dizziness that wasn't related to panic/anxiety - I am very glad that has changed too.

Can I ask what you know about the success of treating MAV with nortriptyline? It is what my oto-neuro is suggesting - just wonder if you have any helpful info in this area?

Thanks,
Sheri

Hi Sheri,

Nortriptyline hydrochloride is a tricyclic antidepressant (obviously used for migraine in your case).

From the MIMS database:

Allegron is administered orally in the form of tablets. Lower than usual dosages are recommended for elderly patients and adolescents. The doctor should initiate dosage at a low level and increase it gradually, noting carefully the clinical response and any evidence of intolerance. Following remission, maintenance medication may be required for a longer period of time at the lowest dose that will maintain remission (they are referring to depression here).

The usual dose is 25 mg three or four times daily; dosage should begin at a low level and be increased as required. Doses above 100 mg/day are not recommended.

Included in the following list are a few adverse reactions that have not been reported with this specific drug. However, the pharmacological similarities among the tricyclic antidepressant drugs require that each of the reactions be considered when nortriptyline is administered.

Cardiovascular. Hypotension; hypertension; tachycardia; palpitation; myocardial infarction; arrhythmias; heart block; stroke.

Psychiatric. Confusional states (especially in the elderly) with hallucinations, disorientation, delusions; anxiety, restlessness, agitation; insomnia, panic, nightmares; hypomania; exacerbation of psychosis.

Neurological. Numbness, tingling, paraesthesiae of extremities; incoordination, ataxia, tremors; peripheral neuropathy; extrapyramidal symptoms; seizures; alteration in EEG patterns; tinnitus.

Anticholinergic. Dry mouth, and rarely, associated sublingual adenitis or gingivitis; blurred vision, disturbance of accommodation, mydriasis; constipation, paralytic ileus; urinary retention, delayed micturition, dilation of the urinary tract.

Allergic. Skin rash, petechiae, urticaria, itching, photosensitisation (avoid excessive exposure to sunlight); oedema (general or of face and tongue), drug fever, cross sensitivity with other tricyclic drugs.

Haematological. Bone marrow depression, including agranulocytosis; aplastic anaemia; eosinophilia; purpura; thrombocytopenia.

Gastrointestinal. Nausea and vomiting, anorexia, epigastric distress, diarrhoea; peculiar taste, stomatitis; abdominal cramps; black tongue; constipation, paralytic ileus.

Endocrine. Gynaecomastia in the male; breast enlargement and galactorrhoea in the female; increased or decreased libido, impotence; testicular swelling; elevation or depression of blood sugar levels; syndrome of inappropriate ADH (antidiuretic hormone) secretion.

Other. Jaundice (simulating obstructive); altered liver function, hepatitis and liver necrosis; weight gain or loss; perspiration; flushing; urinary frequency, nocturia; drowsiness, dizziness, weakness, fatigue; headache; parotid swelling; alopecia.

Withdrawal symptoms. Though these are not indicative of addiction, abrupt cessation of treatment after prolonged therapy may produce nausea, headache and malaise.
Sounds like the effects above are unlikely to occur but wanted you to be "in the know". Hope it works well for you.

Best...Scott :cool:

Hi Benny

Re - hbep: afaik, I thought it was possible MAV can cause caloric weakness (in the same way migraine can damage the eyes

Apologies, not sure if my last post was very clear. That's what I was trying to say. Many people assume that if they have a caloric weakness they must have VN/labs. This can lead to a situation where VRT fails and migraine isn't thought of as a diagnosis either by the doctor or the patient. Before they give up on the hope of recovery, in these situations migraine meds are always worth a shot.

I didn't know about the one sided caloric weakness in the general population, interesting. Although now I think about it the neurologist I saw did mumble something about this.

best,

Hi Swirlygirl,

Nortiptyline is commonly used, as well as amitriptyline for the treatment of migraine. A neurologist a friend of mine saw did say that the only problem with this med for people with vestibular migraine is that it can be sedating. This can counteract the positive effects it might have otherwise as sedation can exacerbate the dizziness. Then again, it is one of the less heavy drugs out there and is definitely worth a shot in the first instance. You will probably know fairly fast whether it agrees with you or not and some people have a lot of success with it. I know Wowweee on this board got rid of all her symptoms on amitriptyline (very similiar drug) but she had a pre existing reflux problem and it stirred that up so she had to stop it. I had to stop it for the same reason funnily enough. If it wasn't for that I would have stayed on it. In fact I wish I could take it as my hunch is it was helping a little.

best,

hbep: Anything up to a 30% difference between sides is considered "normal", but I guess there are probably quite afew people out there who naturally have a greater difference than that - in the same way one arm can be weaker than the other, or one eye can be weaker other, then one ear can be weaker than the other....and until there is mass eng testing of asymptomatic people we'll never really know...

Adam: Apologies for "jumping in quick", it's just that I've been ill for over seven years now (!!) , and one of the ENTs I've seen over the years refused to believe it's possible to be ill this long and proclaimed that "it can't be inner ear related" (before writing a long letter back to my GP explaining that I was a timewaster which gets wheeled out by my GP at every opportunity...), I've since seen better people who have been (marginally) more helpfull. In my case it's either caused by Labs/VN and the compensation process is being hampered by other ongoing health problems, or there something causing fluctuating function (due to family history of hospitalisation from migraine then mavs at the top of the list)....but I don't think there is a time limit on any of it...

Your right... we should probably move off this thread...

Ditto re: having this a long time and being frustrated when the medical profession or public say “you’ve still got it?”!

The fact is people do have inner ear dysfunction from years and yes sometimes its down to the wrong diagnosis or treatment, or something stopping them from compensating but sometimes it is just down to the fact that not all inner ear disorders can be cured and noone knows why this is. I think if things don’t work out or get better with regards to anything in life particularly health, people are quick to question the cause but the fact is sometimes even the cause does not guarantee a successful outcome. We are all different and there are not always answers unfortunately.

As for the balance system not being in operation when sitting – not sure about that am afraid – even with babies, balance is present to enable them to sit and crawl…And it is a well known fact in the world of vestibular disorders that a sufferer has symptoms 24/7 whether walking, sitting or lying down. If an inner ear is damaged it is damaged 24/7, not just when the person is standing. Balance is involved in everything we do. So 24/7 symptoms, not always relating to head movement, are still part of a vestibular problem. A bit like a broken leg – it may be worse if we walk on it, but the pain is also present if we are sitting or lying down. I never get a break from my dizziness – it is there when I open my eyes in the morning before I’ve even sat or stood up. Many vestibular sufferers even find that sitting still can exacerbate symptoms.

Just some thoughts! xx :)

BG – sorry you are having a rough patch. Any success with getting back to London? I am plodding – same old – but London v supportive…

Cl xx

Hi Scott and Hbep,
Scott - thanks for making the time to respond to my Q? re: nortriptyline - lots of info - hopefully side-effects will be a non-issue - I hope to start within the week - as soon as the oto-neuro report finds its way to my GP's office! I appreciate you taking the time for this as I know you're going through a rough patch yourself right now ... good luck to you...
Hbep - thank you too for your info - I have been on a low dosage of nortriptyline (10 mg/day) for the past few months, so I think that's why she chose to start with this particular one first. From what she said, I should feel "something" in 4 - 6 weeks - positive or negative. Knowing that it has helped others is a big positive for me right now - thanks for the info and the hope!
~Sheri