Scott, I read your recent post that contained a passage from Dr. Rauch stating that permanent vestibular damage can occur from vestibular migraine. Did I misunderstand? By what mechanism does this happen? By vestibular hypofunction, I assume he means peripheral.
Does anyone know what happens after a virus damages the vestibular system? Does the damage remain, or can the body repair itself? Or is recovery always attributed to vestibular compensation, not resolution of transient damage? If that’s the case, does it then follow that the more vestibular neuritis one experiences, the more damage accrues and the more the central nervous system has to do to compensate for the peripheral vestibular loss until it uses all its neuroplasticity? Does it matter where the damage was done: central vs. peripheral?
As someone with vestibular migraine of 23 years with worsening 24/7 symptoms AND recurrent vestibular neuritis from HSV, I’m concerned about this possibility (probability, I would say, given how much my vestibular function has decreased in recent years). Medications (I’ve tried so many FDA approved and non-FDA approved) are not effective anymore. Besides caloric testing (ENG? I dare not go through another of those tests yet again in my condition), what would be the most accurate way to determine whether one has developed vestibular hypofunction?
Scott, if you have a chance to address this, I’d really appreciate your input.
Would appreciate any responses. Thanks.
(I moved this post after I accidentally sent it to the Vestibular Migraine Archive.)
Hi, I’m obviously not Scott, but am very interested in your questions and hope you receive some input. I suffered from a “virus” in the inner ear in 2009, and although I’ve made tremendous recovery (85%), I still am unable to run, jump rope, or do anything that involves that type of motion, or I will fall over from balance loss, which could last 24 hours. The last vertigo attack I had flattened me on the couch unable to move a muscle for 24 solid hours. Because I’ve heard people say they had viruses that affected them permanently, I am concerned that I will never be back to the somewhat “normal” person I was just a few years ago.
Hi, butterflygirl. So sorry to hear of your experience. I can certainly relate to the disabling nature of vertigo attacks. It seemed even shallow breaths would cause the room to spin faster. I read vestibular neuritis can take up to 2 years to resolve and in rare cases, may not resolve 100%. Have you completed vestibular rehabilitation? Do you know the cause of your VN? It is a possibility that VN triggered vestibular migraine or left some motion hypersensitivity in its wake. I can say that my motion sensitivity (already fairly extreme at baseline; not sure how to describe it now) increases after each attack (now series of attacks). When you say you cannot jump rope or jog, is that because it causes you to fall from imbalance, triggers vertigo, or causes you to fall because it triggers vertigo?
If anyone has any information (or speculation; that’s also welcome) relating to my questions, please share. Thanks.
I just scanned your prior posts and read something that sounds very vestibular migraine to me. The part where you describe “walking on marshmallows.” That is strikingly similar to my first symptom. I was a competitive swimmer in grade school. When I got out of the pool, I felt like I was still in the pool. When I walked, I felt like I was walking on moving water (not in a divine sense) or walking on a moving elevator or rocking boat/bobbing buoy. People also describe it as being on a trampoline, etc. Sometimes the floor zooms up and I trip over my own feet. Same when the floor suddenly drops 10 stories. I broke my left great toe twice when that happened in college. Suddenly, without warning, the floor came to meet me at neck level. I don’t know why vestibular neuritis triggers vestibular migraine in susceptible people. I wish I knew. I have recurrent VN after onset of VM, and every time it happens, my VM gets so much worse. Have you been able to find a good doctor in your area? Dr. Rauch is reasonably close…sort of, depending on how well you can travel. Right now, I can’t even travel across town to get to work. It’s pretty ironic that traveling to doctors is the last thing motion intolerant people can do, and good VM doctors are not easy to find. I hope you find some answers and relief.
serendipity, sorry for the late response. I believe I’ve always suffered from migraine vertigo. As a youngster, I went through severe motion sickness during car rides, amusement park rides. I also had chronic vomiting as a child. Then as a teen, I suffered terrible headaches. In my 30’s, I had my first dx of labrynthitis, after seeing doctors from Princeton to Philly. It lasted close to a year. :x I was “normal” until about 25 years later. By normal, I mean, I ran every day, I swam several miles a week, I could live a normal life, except I still got sick on boats, amusement rides and in the car (if I didn’t drive). Very normal until about 6 years ago. Out of nowhere, on a gorgeous day, doing my normal run, I became so imbalanced, I had to sit down and the world spun horribly for 24 hours. I couldn’t move. I’ve been to many ENT’s and neurologists, with no definitive diagnosis. I can’t run anymore, can’t jump rope and can’t do flip turns or yoga inversions.
I supposedly had another bout of either Labs or VN a year later following a bad upper respiratory infection, which, once again, lasted almost a year. I couldn’t swim at all, and I definitely could not run. YOu’ve read my posts, so you know all the symptoms I had–heavy head, foggy brain, anxiety, imbalance, walking on marshmallows, floor coming up at me, couldn’t walk in the dark. There are days when I feel the waves in the pool more than other days, and sometimes I feel a little “off” swimming front crawl, but I am much better now. I have some hearing loss in left ear, which was dx’d in the 70’s. That’s remained the same. Now, I just learned I have hearing loss in the right ear. All docs have said my hearing loss is not typical of Meniere’s. So, I still really don’t know what is wrong, and for some reason, none of the doctors here seem to think it’s migraine. If you have any questions, PM me anytime.
I think I read somewhere what if you run the vestibular test on someone more than once you would get a different reading each time. Also they don’t know what the patients vestibular reading was before MAV. They don’t have a baseline to work against
butterflygirl, I’m not a doctor, but I’m not sure why your doctors have been hesitant to diagnose vestibular migraine. Your normal sounds great. I hope you can get back to that and resume the sports you enjoy. I understand the sadness of giving up one sport after another due to this monster. Our VM symptoms are similar. I cannot be a passenger in a car unless I’m in the front seat, almost completely sedated, the terrain is flat with minimal, if any, traffic, and in a car that is very low to the ground. I can’t stand the “bobbing” of cars with big tires like SUVs or Jeeps. Buses? Haven’t set foot on one since I got sick on one in college almost 15 years ago. I could never tolerate water movement after I gave up swimming 20 years ago. Now I can’t even look at anything on the water because the mere sight of bobbing on the horizon amplifies my (false) internal sensation of bobbing. I can’t sit on couches with other people. My husband had to get another chair because any movement on the same couch intensifies the elevator and rocking. When I was flying 2-3 years ago when I was MUCH better, two very large passengers just moving around in their seats next to me caused me to be incredibly motion sick on top of my usual motion sickness. So much so that I had to politely ask (beg) them to stop moving because I was getting dizzier! Of course, they looked at me like I’m completely crazy. It was awful. Can you relate? I know I definitely have VM. That’s not in dispute at all. The secondary diagnoses are what the doctors are not sure about, though I am certain it’s peripheral and CNS damage from repeated herpes reactivations in at least the ear and CSF (I read that the inner ear shares the same fluid as the CSF). Not sure if this could be a factor in your case, but it doesn’t seem so given that your VN attacks have been so far apart. VN attacks so far apart are more suggestive of migraine, in my humble opinion. Sometimes I would be lucky to go years without a vertigo attack when I “only” had VM. I’m a sufferer of many years, so I feel I can comment with some degree of certainty. “Typical” VN shouldn’t last a year unless you have uncontrolled viral indication, and there’d probably be some other symptoms you can’t overlook. Anyway, that’s just my theory. Why your symptoms persist right now–I wish I had an answer. I’d love to know why mine are too.
robertgreen99, you raise an excellent point I hadn’t thought of. No person in her right mind would undergo the battery of debilitating balance testing for no reason (I mean…get a life!!), so by the time she has to, she has no baseline against which to compare. Your post reminded me of something I read on this site from one of the VM specialists that the testing is actually very crude. My local ENT admits there is no “true” way to test the inner ear (he meant it’s a postmortem type of undertaking). Thanks for your replies. Much appreciated.
Scott, if you’re here and you see this, I’d really appreciate any input beyond what’s been discussed! Thanks.
Hi Serendipity,
I recognise the symptoms you are talking about with regard to swimming – the first time I went into a pool since this all began, I was scared to death that I would lose balance and drown, but I was quickly surprised to find that my symptoms went away as soon as I gained buoyancy in the water. And they came back really badly as soon as I stepped out of the pool – extremely dizzy once again. I was recenty diagnosed with mal de débarquement, although “silent migraine” was mentioned by one vestibular therapist.
I thought the caloric test was horrific and feel like I permanently worsened from it, even though the results were fine. I wonder if I became worse because of it but I would never go to have another one to prove that.
butterflygirl, I’m not a doctor, but I’m not sure why your doctors have been hesitant to diagnose vestibular migraine. Your normal sounds great. I hope you can get back to that and resume the sports you enjoy. I understand the sadness of giving up one sport after another due to this monster. Our VM symptoms are similar. I cannot be a passenger in a car unless I’m in the front seat, almost completely sedated, the terrain is flat with minimal, if any, traffic, and in a car that is very low to the ground. I can’t stand the “bobbing” of cars with big tires like SUVs or Jeeps. Buses? Haven’t set foot on one since I got sick on one in college almost 15 years ago. I could never tolerate water movement after I gave up swimming 20 years ago. Now I can’t even look at anything on the water because the mere sight of bobbing on the horizon amplifies my (false) internal sensation of bobbing. I can’t sit on couches with other people. My husband had to get another chair because any movement on the same couch intensifies the elevator and rocking. When I was flying 2-3 years ago when I was MUCH better, two very large passengers just moving around in their seats next to me caused me to be incredibly motion sick on top of my usual motion sickness. So much so that I had to politely ask (beg) them to stop moving because I was getting dizzier! Of course, they looked at me like I’m completely crazy. It was awful. Can you relate? I know I definitely have VM. That’s not in dispute at all. The secondary diagnoses are what the doctors are not sure about, though I am certain it’s peripheral and CNS damage from repeated herpes reactivations in at least the ear and CSF (I read that the inner ear shares the same fluid as the CSF). Not sure if this could be a factor in your case, but it doesn’t seem so given that your VN attacks have been so far apart. VN attacks so far apart are more suggestive of migraine, in my humble opinion. Sometimes I would be lucky to go years without a vertigo attack when I “only” had VM. I’m a sufferer of many years, so I feel I can comment with some degree of certainty. “Typical” VN shouldn’t last a year unless you have uncontrolled viral indication, and there’d probably be some other symptoms you can’t overlook. Anyway, that’s just my theory. Why your symptoms persist right now–I wish I had an answer. I’d love to know why mine are too.
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Serendipity, how do you know that you have the herpes virus? I’ve had tons of bloodwork – would it show up that way?
Swimming requires the utmost focus for me. I can’t look at the surface of the water–it makes me feel very off–so I concentrate on a fixed spot (end of the lane or the bottom line in the pool depending on what stroke I’m doing) and that works for me. This disorder has actually improved my swimming technique – I have to keep my head very still except of course, when I need to breathe. No excess movement. I didn’t think VN should last as long as it did, and I was quite skeptical of the diagnosis, but it’s all I could get. I hope you get back to “normal” for this disorder.
Isn’t it strange how vestibular migraine symptoms can be so similar to mal de debarquement? Being in movement usually masks the rocking and imbalance. It’s worst for me when it’s still (except during acute vertigo attacks when I can’t be anything BUT still).
There are 8 known human herpesviruses, but for vertigo and chronic disequilibrium purposes, HSV-1 and HSV-2 are the main culprits. Possibly also VZV (chickenpox virus). A positive IgG test will tell you your status. I have read of 1 lady who had vertigo and hearing problems from CMV acquired as an adult, but that’s much less common. She had an excellent sustained response to the antiviral Famvir. The reason HSV 1/2 can cause vertigo is because it infects neurons (something peculiar about alpha herpesviruses).
Serendipity, what is CMV? Yes, my symptoms mimic mal debarquement, but the symptoms never occur after travelling, although I’ve never been on a boat, only a plane, car, and long ago, busses, or trains. Train made me very dizzy. Hated that experience. I imagine a bus would do the same now. However, the motion sickness occurs while I’m in the car, plane, bus or train, not afterwards. Isn’t that what mal debarq is?
My apologies for my late reply to you on this topic.
I wrote Prof Steve Rauch about this in March of this year. This was what he had to say to me about this.
Scott 8)
Steve,
Vestibular damage appears to have been reported in the literature as a possible outcome of migraine disease. I was wondering if this is something you’ve come across in your practice in migraine patients?
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Scott,
This is actually very common. Remember that approx 20-30% of patients with migraine headache exhibit VM. About 20% of VM patients develop hearing loss on one side – evidence of “endorgan damage” in the cochlea. Those patients with VM who mimic Meniere’s syndrome — episodic vertigo lasting 20 min-24 h plus hearing loss — nearly all gradually develop evidence of endorgan damage (a.k.a. “vestibular hypofunction”) in the form of reduced caloric response and/or reduced VOR gain and increased phase lead on rotation testing.
Some patients with VM who do not look like Meniere’s disease can also develop peripheral hypofunction, too. The challenge in studying and/or assessing this issue is that VM patients tend to have very labile vestibular function test results. In other vestibulopathies, we see test abnormalities on a vestibular test battery that “cluster” — peripheral disorders, such as Meniere’s, labyrinthitis, and vestibular neuritis, show peripheral hypofunction (reduced caloric response, direction changing paroxysmal positional nystagmus, reduced VOR gain and increased phase leads on rotation testing) and central nervous system disorders, such as stroke, cerebellar degeneration, and TBI, show central dysfunction (direction-fixed position-insensitive spnotaneous nystagmus, vertical nystagmus, poor optokinetic nystagmus, impaired fixation suppression, etc). The hallmark of VM is that the test abnormalities do not cluster well (i.e. there is a mix of peripheral and central findings) and there is poor test-retest stability (i.e. every time you repeat the test battery, you get different results). Since vestibular function testing makes migraineurs very ill, it is nearly impossible to test them at all, let alone repeatedly. However, in those with a lot of vertigo, repeat testing often shows a more and more persistent and worsening unilateral peripheral hypofunction in the symptomatic ear (same as we see in Meniere’s disease).
I’m not convinced you are having repeated attacks of “vestibular neuritis”. Like you I also have HSV. When I get particularly bad attacks I am heavily affected in the vestibular system. The last nasty one was in Canada about 4-5 weeks ago now. It started with me feeling anxious for no reason that morning. Turns out I had to drive that day about 200 km. The highway driving was a killer because my potential for visual vertigo was through the roof. I had to stop every 30 min and rest my eyes and head. The dizziness was kicking in by now too. There is a very specific type of dizziness I get that is associated with HSV attacks – it’s not the same as any other type of viral attack such as a common cold. That evening with friends I was on the verge of a panic attack, my face was white (according to my GF) and I basically had to fake the night with friends. And I had no valium dammit. :shock:
After these sorts of attacks that last no more than 36 hours everything returns to normal. When I realise what it is I totally calm down and don’t react to it because I know it will stop. VM began for me after what I am certain was a full blown case of VN. And I do wonder if that was because of HSV. Very probably but I have no evidence. I had HSV before that attack. Did it migrate? Maybe.
According to the literature VN does not normally reoccur … if it does it’s unbelievably rare to my knowledge. It would be like catching chicken pox twice (don’t even think that’s possible because you have the ABs after the first round). How do you know that your attacks are not migraine in nature? Just putting out different scenarios for you.
After a virus damages the vestibular system, damage is dependent on the severity of the attack and for how long it was inflamed in there. I’m not sure there is ever total repair from any assault but obviously the less inflammation, the less damage and the quicker one should recover. In most circumstances a person should completely recover unless there is something complicating recovery such as having a migraine brain (which was my problem post VN) or a visual problem requiring correction with glasses to allow the brain to compensate successfully.
But who knows, you could potentially have HSV repeatedly attacking your vestibular system leaving damage and with VM that would be really had work on your brain to continuously compensate. I know from the science literature that HSV RNA has been extracted from vestibular cells in human cadavers. It does and can get in there. I sure as hell hope it’s not in mine. I think my attacks are simply that the virus throws my brain out because of the overall systemic effect from my immune reaction.
Your aversion to caloric testing etc is textbook VM of course. I can’t handle it either. Brings me to my knees that test – never again. :shock:
I didn’t think VN should last as long as it did, and I was quite skeptical of the diagnosis, but it’s all I could get. I hope you get back to “normal” for this disorder.