The problem of constancy

I am currently caught between a diagnosis of MAV and Uncompensated labyrinthitis, and have suffered from vestibular dysfunction for 3 1/2 years (in varying degrees). I wonder how many MAV sufferers have this problem of constancy? For me vertigo attacks are rare and related to stress/concentration/fatigue particularly of the eyes, which flutter profusely and a series of attacks are folowed by literally months of imbalance/incorrect motion sensors, sensory overload, abnormally viewed electric lighting and fluttering eyes- these symptoms feel latent even when they are gone and that feeling is constant- i have to avoid lots of activities and keep regular sleep patterns etc- this is a preventative lifestyle. Headaches are even rarer than vertigo attacks- the pain is dull and all over the back of the head- only very painful with movement. One set of symptoms is entirely constant- in back/neck tension, anxiety in crowds and in scanning with the eyes (including reading). The constancy of MAV (if that is what i have) is the major problem both in impinging on living a normal life, and i presume in treatment. If there is little pain involved and the migraine is never entirely gone, than i presume preventative medication will have no effect. Does anyone else share a similar pattern of symptoms and/or concerns regarding constancy?

Hi, I’ve now been given a diagnosis of uncompensated vestibular neuritis and have been given a VRT exercise schedule. I have never really believed that my problems were MAV, despite being told as much previously. If anyone else has similar worries, and/or symptoms to mine (as expressed above) contact me by private message and I’ll get back to you. Cheers,

Hi boris

Migrainous vertigo is not necessarily an episodic disorder, in most that suffer enough to look for treatment,
it is chronic and unremitting as you have described above.

Hope the VRT helps.

Adam

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Hi Adam, I accept that MAV is not always episodic and can be unremitting, in these cases as you’ve said meds rarely make an impression due to the abortive nature of usage. My initial post was addressing these cases- i was concerned that in my case meds were not going to have any effect. However, I have always felt that the case histories of uncompensated vestibular patients matched my problem more closely (see labyrinthitis.org.uk, veda.org). I have also found that trialling VRT exercises from the internet suggested a more mechanical type problem (e.g eye movements during cawthorne cooksey exercises gave me a creaking noise/sensation at the back of my head/inner ear).

I definitely think that some people will be diagnosed with MAV, when their problems are of an uncompensated vestibular nature. The problem seems to be that neorotologists are like gold dust. People are sent to neurologists and/or ENT’s- many uncompensated patients find ENT’s that seem poorly informed regarding these conditions and neurologists seem to naturally associate the mixed neurological symptoms with MAV.

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I’m unsure what you mean by “meds rarely make an impression”?

When the symptoms are chronic and unremitting, medications have their most benefit. In fact, that is when prophylactic (preventative) medications are usually prescribed. Abortive medications like Imitrex, analgesics etc. are useless against MAV.

I do agree that patients with pure peripheral problems are occasionally diagnosed with MAV, and vice versa.

You’ve mentioned neurological symptoms however - I’m struggling to understand how an inner ear disorder relates to neurologic dysfunction? Neurological symptoms are by definition, in the brain. Light sensitivity for example, is purely a central issue - the inner ear has no impact on visual processing - the eyes and inner ear are only connected through the oculomotor reflex (VOR).

I think you will find, if your diagnosis is correct, VRT will hugely improve your symptoms. If they continue to be a problem, and VRT is not effective it is more likely you have an unstable lesion of which migraine is one.

There is a lot of discussion on this issue on the Dizzinews mailing list (do a Google search) - it is an interesting topic and that list is even lucky enough to have the director of a neurotology clinic on board who answers most questions.

Adam

Hi, what I was questioning (as my knowledge of MAV is considerably secondary to my knowledge of uncompensated lab/v.n) was if you experience disequilibrium etc all of the time, it is chronic in the sense that it is debilitating to your life, but not in the sense that it brings you a great degree of pain (this is me). If this can be labelled as migraine, then it is a constant condition and if no medication can abort this, then i didn’t really understand how a preventative could be of any use to me…maybe i’m wrong but i thought the only reason migraine sufferers took preventatives was to make attacks less likely?

The neurological symptoms…my physio explained that: neck/pain tension is as a result of the body finding other ways to balance/or compensate for the inner ear dysfunction. Headaches that are dull etc can be caused by this tension, and the fact your eyes are struggling (many sufferers find there balance becomes dominated by their eyes and muscles etc…making them very fatigued). The dull and intense appearance of lighting is a classic labyrinthitis symptom which is retained, as is eye-flickering, the feeling of disequilibrium, and (often stress induced) vertigo attacks (not spinning, but with considerable movement). These are all symptoms which i think can crossover with MAV- which makes a diagnosis hard. MAV is what my GP and neurologist thought i had, and my GP admitted he had never heard of uncompensated lab/v.n, even the 1st ENT i saw seemed to know worryingly little about uncomepensated lab/v.n. The physio i saw said it’s uncompensated v.n within 20 mins of seeing me- case history, tests, questions- she has given me an individualised program with habituation exercises and vor, ocular motor, gaze stability exercises…I can feel them doing something. They’re making my head kind of tingly…which hopefully is a good sign…

You may be thinking of migraine in terms of episodes “attacks”… but it is not necessarily an episodic disorder, and those suffering long-term don’t necessarily have attacks… but continuous symptoms that go on for weeks, months, years. It is not known how migraine preventatives work, but the “term” preventative is only misleading because we aren’t talking about episodic migraine… we are talking about chronic migraine. A preventative may lower the level of excitability in the brain, stabilise ion channel function, prevent vasodilation (these are all theories - noone knows what causes migraine) - so a sufferer of chronic migraine may start to feel better within days. They may have ‘flare-ups’ of symptoms, which is probably a better way to think about chronic migraine, rather than episodes.

On the other hand, labyrinthitis is thought to be a one-time event - severe debiliating symptoms that get better over time due to compensation. I am not a believer that decompensation can cause “active” symptoms (ie. the sensation of rocking back and forth), but rather induces a movement-associated dysequilbrium until compensation is complete. Eye-flickering (nystagmus) is certainly a feature of all vestibular disorders due to the vestibular systems connection to the eyes via the VOR. I don’t agree that light sensitivity is a feature of any peripheral vestibular disorder - those I have spoken to with definite Labs (the easy to diagnose kind - one attack of true vertigo followed by steady improvement over time) do not report any light sensitivity or other visual processing abnormalities. This is hardly proof in itself, but light sensitivity is thought to be a migraine-specific symptom. The emedicine article on MAV actually indicates in its comparison with Menieres disease, that light sensitivity in migraine is “Often present; may or may not be associated with dizziness” (quoted), and in Menieres, a peripheral vestibular disorder “Never present unless a concurrent history of migraine exists”. I have actually never seen someone diagnosed with Labs who has gotten better if they have (what I believe) are clear migraine symptoms like light sensitivity and recurrent headaches (which they attribute to the labyrinthitis, or things like not drinking enough water).

I don’t know anything about your specific situation, but if VRT helps long-term, then your physios diagnosis of labs is almost certainly correct. If you are finding symptoms that change markedly from day-to-day (ie. feeling somewhat reasonable one day, and very dizzy the next) that would be very unlikely to be Labyrinthitis.

A trial of preventative medications is a very easy way to rule out migraine as a diagnosis in any case.

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That is quite interesting, the meds issue has been cleared up somewhat. But we are going to have to disagree on light sensitivity and decompensation in uncompensated patients. I imagine light sensitivity in migraine patients to be a complete inability to look at lights, for me it is an uncomfortability in viewing lights because they seem intense, sometimes duller in colour than normal and larger than they actually are…at it’s worst, i.e on first bout labs they look like stars do in van gogh’s starry night painting (van gogh having suffered from menieres disease). Also with the headaches…each time i have these dull headaches it has been after trying to read beyond the capacity of my eyes to do so, which to me says it is as a result of VOR/ocular motor overstimulation…I wouldn’t think such a mechanical trigger would be migrainous in origin? I am interested to know what confirmed MAV sufferers experience when try VRT style exercises such as Cawthorne Cooksey exercises?

As for the compensation issue, i have decompensated twice for long periods and never regained a 100% compensation…this in itself is debilitating to a normal life…as the body absorbs the balance deficit in other ways, such as how you walk, sit at computers etc, and you begin to avoid doing things (sometimes consciously and other times uncosciously) that you know will be of detriment to you. It seems to me that it is highly unlikely that i had an intense labs episode, cured by stemetil, and then suddenly attained a long term MAV condition which retained a similar set of symptoms. Once again if you take a look at labyrinthitissupport.org.uk this is not an exceptional case.
One point where I definitely will agree with you on labs is the seeming lack of people around with a definite success story who have decompensated, and then recompensated. I find this a little worrying, even though labs patients do seem to rave about the effectiveness of VRT.

Stemetil is a powerful anti-nausea drug - it doesn’t actually have any utility in preventing or improving vertigo. It is used to reduce nausea and prevent vomiting in many conditions, one of those being during acute vertigo. It is likely your episode of vertigo resolved spontaneously.

I’m definitely interested in this topic, and would like to continue discussing it. You are always welcome to talk about these issues on here.

Overall, your symptoms sound very difficult to diffentiate between MAV and labyrinthitis. The only reason I would lean towards MAV is the visual abnormalities you describe - they are classic amongst migraineurs - visual processing abnormalities. If you can find some explanation of how these visual issues can be explained by a peripheral problem, I would be very interested to read it. In migraine it is clear that abnormal levels of activity occur in areas like the cerebellum and visual cortex (shown through PET scans etc.) I would really like to hear someone that is a proponent of visual processing abnormalities being possible in peripheral disease explain the relationship or any theory as to why this could occur.

(PS. if you want to look up Stemetil, its name is prochlorperazine. I use this drug myself during periods of intense nausea)

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Hi, I think this dialogue is definitely a positive addition to mvertigo.org and should help raise awareness of the problem of diagnosis.
I’m not particularly knowledgeable about giving mecial explanations of phenomena related to labyrinthitis/migraine, I don’t have that kind of in-depth medical knowledge, I try to look at this area purely rational. In my experience case histories seem to be the best indicator to judging your own personal case.
On the stemetil issue, it cured the nausea and the balance/spinning vertigo followed it. This 1st lab bout was short, it was different to my constant and long uncompensatory periods (nausea not a problem and stemetil has no effect)- it’s best summed up as 1/3 labyrinthitis- it’s dampened down, but you cannot escape it, and trying to live normally with it brings problems of anxiety, neck tension etc . I think viewed from an entirely rational perspective- these separate incidents must be linked, and the differentials in there occurrences, ,in my opinion fit the notion that my brain has not compensated for the inner ear damage that the virus has caused. I’ll change my opinion if this pattern changes.
I would definitely be interested to hear how vrt exercises are experienced by confirmed MAV sufferers…because this may be one way of finding a point of differentiation that people in my position can trial.

Generally what neurotologists say about VRT is that it is extremely useful - if the problem causing the vestibular dysfunction is stabilised.

In labyrinthitis - this is a given - the problem is stable, having occured once and not likely to reoccur. Some of the “top guns” in this field actually don’t call it labyrinthitis or VN, because the cause is not known. The evidence for a viral cause is still weak. They generally call it ‘acute unilateral vestibulopathy’. I’m sure it can’t be far away when they elucidate the cause of Labs. One thing they do agree on though, is it is definitely not a recurrent event.

In MAV - a person is usually stabilised on medication or lifestyle changes. When headaches (if applicable) and/or vertigo is under control and symptoms are remaining fairly static, VRT helps clear up the remaining problems of potentially many years of vestibular dysfunction caused by migraine. It is clear that nothing will “cure” this illness - in fact, there is no cure for any vestibular disorder. Achieving the best possible control is the name of the game.

In Menieres disease, if episodes of vertigo and hearing fluctuation can be reduced by normal therapy (low sodium diet, diuretics, calcium channel blockers), VRT is a logcal step.

However, it is impossible to come to a diagnosis from the response to VRT. It may give clues - but in general labyrinthitis should always respond well to VRT - it should not stir up worse symptoms (except perhaps
initially). If someone has been doing a VRT program for 3 months and had no benefit for example, it’s time to look elsewhere.

I am definitely a confirmed MAV sufferer (my case was not too difficult - history of migraine with aura, recurrent vertigo episodes, visual abnormalities (flashing lights in the corner of my vision), then eventual chronic problems with dizziness and headaches). My response to medication is also very dramatic - once you’ve had such a dramatic response it leaves very little doubt in the sufferers mind that migraine is the cause. The commonly used drug Verapamil, for example, had an almost immediate major effect.

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Your case is clearcut…do you mean that verapamil has an impact on your condition outside of headache/vertigo episodes. I.e does it change the inbetween disequilibrium, light sensitivity etc. When I was under the impression my problem was MAV i took propranolol which did nothing at all, and took buspirone (which i was told was like a sedative) which also had no effect at all on my anxiety.
When I was talking about VRT trials, I didn’t necessarily mean long term. I meant how do the mechanics of undertaking the exercises make you feel. For example, moving my eyes side to side and into the corners holding my focus makes me experience a creaking, (almost a tiny tremor sensation). As though the movement is irritating something. This is especially effective when placing cards with words in front of your eyes in the corners of your vision and/or following the words in a back and forth movement. Another example is throwing a ball hand to hand above your eyeline makes me heave. Moving my head up an down quickly (particularly up) makes a slight squelching sound/sensation on the back- left side. These feelings are it seems showing up an almost mechanical fault.
I’ve now had this bout if u like since June last year…i did the cawthorne cooksey exercises for 6 months and i have had an improvement generally in my motions (but it’s hard to judge when I’ve been quite inactive/stress free, for a period of time this may have happened anyway to this extent)…I’ve only had my VRT schedule a week…

I’m really interested by the sensations you are describing… the “creaking” etc… it’s something I have heard from others before once or twice but haven’t experienced myself. Not sure what they were diagnosed with.

Yep the name of the game with the preventatives is to stop the constant dysequilibrium, light sensitivity etc. These are by far the most debilitating symptoms for most people.

When I was younger I had VERY long episodes of vertigo (72 hours of non-stop violent rotational vertigo) - I would vomit for those 3 days almost continuously and have a terrible nausea and inability to move my head. But I would be completely back to normal shortly thereafter. However these episodes of vertigo pale in comparison to the chronic issues I suffer from now - simply because they take such a big toll on quality of life compared to a few bedbound days.

I also had zero response to propranolol - made no difference whatsoever. Verapamil had a huge effect though - my vision cleared up, light sensitivity disappeared, and I had no sensation of dizziness at all. This lasted about a week until my doctor suggested I stop taking it (and find something else) because of chest pain I was experiencing. That has been a big downer as I haven’t found anything as effective yet, except for Acetazolamide, but it is quite hard to tolerate (makes me feel like not eating).

It’s interesting that you have had short attacks and then developed a long term condition. It’s also interesting that you too express the disequilibrium, light problem as more debilitating than the episodes. I can see why my case has gained a dual diagnosis. It doesn’t help as well having migraine on one side of my family. I have always had the impression that this form of MAV is extremely rare…regardig the case history’s on this site…people seem much more focussed on episodes. Even my neurologist looks at me gone out when i talk about the constant disequilibrium, and changes focus to what the headaches are like (when this is really a tiny aspect of the problem) etc. More than anything this has given me the impression that MAV is not what i have. I am still technically under a dual diagnosis, and am awaiting a 10mg a day prescription of amitriptaline…but on the other hand the balance physio i’ve seen said confidently that i had uncompensated vestibular neuritis and seemed both knowledgeable and unsurprised by my symptoms and case history (it’s also worth mentioning I also have barotrauma and that increases the likelihood of other inner ear problems).

I agree that the creaking is interesting, it is also interesting that all three headaches during this uncompensated period (preceded by reading) and the vertigo episodes i had 7 months ago (preceded by head movement up and left, changing focus and a period of eye concentration beforehand) appear to centre on a mechanical trigger.

I’ve got a wealth of new articles on MAV to put up shortly… one of them has a study regarding migrainous vertigo and how many had episodic symptoms and how many had chronic symptoms. I believe the number was about 15% of the total had chronic symptoms.

However, given the fact that migrainous vertigo has a 2% prevalence in the general population, its not a terribly uncommon thing to have chronic symptoms.

I’ll be interested to hear if the amitryptiline works for you - its usually a pretty effective drug.

I want to add something here. If I repeat what has been written please forgive me. I am not nearly an intelligent about the mechanics of migraine or ear disorders as you both and don’t want to butt into your great conversation. I tried reading all that is written but my eyes couldn’t handle it. I grayed out on it.

I have experience as a person with long time migraine and equally as long with ear problem.

I spoke with a man that wrote the latest issue of On the Level. He does testing and VRT at Mercy hospital in Chicago. I have been told I have bilateral loss. I ask him if migraine could cause that. He said yes it can. Explained that migraines can be ongoing and that VRT is only as good as your next migraine whether you feel pain or not and having migraine. I explained to him I have less vertigo than I use to but have daily neck pain. He said neck pain can be the equivalent to the vertigo. And that until I get on meds and a diet that brings the migraine syndrome under control I will not recover. I get the understanding that migraine is not a thing that happens like doctors use to believe. At least not in some people. Just as diabetes isn’t something that happens on occassion it has to be monitor and controlled daily like an illness. I have the same kind of visual problems you describe. As far as dull light. I ask him about my different problems with light. I have a lot of diffuculity being outside in crowds and feeling like my vision goes gray or that I am looking through the sides of my eyes. It can all be migraine. When migraine happens it releases a chemical that can destroy surrounding cells. Over time it stands to reason that damage coming from migraine is going to leave a person with permanant damage. I don’t think after 25 years of migraine happening and testing showing I have bilateral loss that meds or VRT is going to make me normal. I do think had I been given a diagnosis in the beginning stuck with it and then had VRT to bring back my balance my life could have been better. Mainly I think we need to stop thinking of this as an event that happens with aura, vertigo, pain. But the lesser degree of it is constantly with us. My doctor put me on anti inflammatories. I haven’t taken them yet as I have other meds I am taking and will only try one at a time. He said with migraines the nerves can become inflammed and these can help that part of migraine puzzle.

Linda

Hi everyone,

I have been away from the board for a while, trying various medications. I’m back again because I am back to square one. Boris, your symptoms sound very much like mine. I have been to so many ENTs and neurologists now - about a third say I have migraine, the other two thirds say I have a peripheral vestibular disorder. The eye symptoms are the most debilitating for me. I have problems tracking moving objects, being in crowds, reading sometimes etc. These activities make me feel dizzy and disoriented and sometimes nauseated. I also have imbalance on walking and ever since this began, electric lights have looked different to me - some colours seemed more intense, and all electric lights have a halo around them.

I am a doctor and so I have researched this problem in search of an answer. My difficulties began after a minor head injury during which I broke my nose. Testing showed a definite vestibular loss on one side after the accident, however this has been normal on some follow-ups, abnormal at other times. I have tried a number of MAV drugs including topamax, lamictal and verapamil and they either did not work or I couldn’t tolerate them. It seems so clear to me that my problems originate from my ear, as I have tinnitus on one side, hearing soudns different on one side and worsening of the tinnitus coincides with worsening of the other symptoms. My symptoms persist constantly for months. I did have a period of recovery lasting about three months after the problems began, but since then they have never remitted completely.

In my conversations with various neurologists and ENTs, I have come to understand that there is a link between eye movement control and the inner ear. The vestibul-ocular reflex is a complex neurological network that controls balance and eye movement. People with peripheral vestibular lesions do get eye movement abnormalities. For people like Boris and I, eye movement control woulod be worse whenever there is any movement of our head (and most of us are never 100% still). You need your vestibular apparatus to maintain focus and fixation when your head is moving, so this applies to times when you may be walking, driving, or even nodding your head or moving in the normal way that you do during a conversation or everyday life.

I have a paper which I can send you Boris if you like. The authors’ hypothesis really makes sense to me. They believe that people vary in how quickly and how completely they will compensate to a vestibular injury. A big factor is whether or not the individual is “visually dependent” ie some of us depend more on vision for control of balance than others. In people who are visually dependent, vestibular injuries can be extremely debilitating. They also believe that it is generally the mild vestibular injuries, as opposed to severe ones, which cause the most debilitating symptoms in these cases. I suspect you are in the same boat as me, Boris.

The other person who has interesting ideas about this is John Epley (the man who invented the Epley Maneuvre). I went to see him at his clinic in Portland Oregon. He believes that the problem is situations like ours is that the inner ear becomes hypersensitive to pressure and movement after an injury. This means that there is excesive and confusing input from the inner ear to the brain so that balance and visual control becomes very difficult. He uses intratympanic steroids to treat these kinds of disorders. I believe it was hs treatment which gave me my first and only remission. I am going back to see him in October. He is retiring this year, so if you want to go, be quick. I can send you the details if you want.

A couple of other suggestions: Prof. Adolfo Bronstein in London is a world authority in visual balance disturbances. He apparently runs extensive visual rehabilitation programs. Also, have you tried Stugeron? I have been told that some people find it very helpful. It is a motion sickness drug which at doses of 25mg three times a day can apparently be helpful. I am just about to try it.

I would be really keen to talk with you some more about your situation. Any thoughts Adam?

RS

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— Begin quote from “robsydney”

also have imbalance on walking and ever since this began, electric lights have looked different to me - some colours seemed more intense, and all electric lights have a halo around them.

— End quote

— Begin quote from ____

In my conversations with various neurologists and ENTs, I have come to understand that there is a link between eye movement control and the inner ear. The vestibul-ocular reflex is a complex neurological network that controls balance and eye movement. People with peripheral vestibular lesions do get eye movement abnormalities.

— End quote

Hi Rob

Absolutely agree… the key word there however is movement. A peripheral vestibular lesion most often causes nystagmus, and even a deviation of the primary position of the eyes. These are clear eye movement (oculomotor) abnormalities that can be associated with peripheral lesions and have never been disputed.

The contradiction is when people describe visual abnormalities which are unrelated to the oculomotor system such as pattern discrimination issues, blind spots, scotomas and other auras. I would like to hear a description of how a peripheral lesion can cause these issues? You have even described visual changes yourself in the first paragraph quoted above which are not eye movement abnormalities but rather visual processing abnormalities. I don’t believe I have found any claim in any of my reading that proposes why or postulates that peripheral lesions can cause visual processing changes. They are of course, commonly associated with migraine however.

Adam

Hi Adam,

yes those kinds of visual abnormalities can’t be explained by peripheral lesions, I don’t think. I am not sure what to make of the difference in colour perception in my case. I have, however, had contact with people at a major balance centre in Sydney who have told me that people who have a structural defect in the labyrinth somewhere, so that it is sensitive to sound and pressure, will see a “shimmer” around objects. As a medico, I have come to accept that our diagnostic distinctions are often very artificial and thing are often much more unclear than they might seem. Is it possible that there could be a migrainous component and a peripheral component both simultaneously causing problems in some cases. A neurologist I spoke to told me he thought that inner ear disturbances might trigger migraine activity. I have also read that migraine events could potentially lead to vestibular injuries due to vasoconstriction. So I think its probably a very messy mixed bag of interrelated factors. The aim of the game of course is to find agents that work. If a migraine prophylactic works, that is fantastic. But in some cases, like my own, they don’t. And if there is a suggestion of a peripheral lesion, maybe some treatment focussed on that could help. Or maybe both treatment for migraine and of the peripheral lesion would be helpful in cases like mine. I think the answer is: your guess is as good as mine and as good as that of many of my experienced medical colleagues.

Rob

How many migraine treatments have you tried?

It took me 15 different drugs to find the one that works for me - that being Neurontin.

Adam