For a while now I’ve been noticing that if I look at certain things like edges, or signs at night, my vision vibrates subtly. I’m wondering if anyone is having this as well?
Yes, my vision vibrates as well. This vibration began well over 40 years ago at age 15 .
I also have “bouncy vision”(oscillopsia) Everything appears as if I am looking through a bouncy video camera.
My diagnoses is MAV and bilateral endolymphatic hydrops although not diagnosed with Menieres.
Have you seen an opthamologist? I’ve been told that sometimes vibratory vision can be a retinal issue.
Hope you get some answers!
NYGAL, do you know the cause of your hydrops? Has that got any better over time? Did you get tinnitus?
I see. I have seen an optometrist last year that did retina checks with a specific machine and everything was fine. They’ve diagnosed me with “cochlear hydrops” at hearing and balance center. But I don’t have significant hearing problem just the constant on the trampoline feeling and tinnitus, neck muscle fatigue, and occassionally some hearing loss in either ear for 5 seconds then it goes back to normal. Maybe the vibrating vision has to do with the hydrops since the eyes and balance are connected, hence the term “vestibular occular reflex”
I notice the visionary bounciness the most when it’s night time and I’m looking at a sign or night lamp, only the sign/lamp will bounce around if I focus on it. For you it sounds like everything bounces not just lights, hmm
I’m curious to know if you have the on the trampoline feeling too?
They believe that Migraine has caused the damage to inner ear and resulted in hydrops. One neurotologist believes I have bilateral fistulas. I’m not so sure and am not prepared to have exploratory surgery at this point. I am on a diuretic and try my best to adhere to a migraine diet.
Yes, I now have constant tinnitus in my left ear and occasionally in right. Some mild high frequency loss bilaterally.
My symptoms wax and wane. Remember I have had vestibular and visual problems since age 15. I think my Brain adapted somewhat.
Interestingly enough my VOR is within normal limits. They don’t know why my world bounces and moves 24/7. Migraine ? Perhaps.
Are cochlear hydrops different than Endolymphatic? Do you have any hearing loss at all?
When you say trampoline feeling, are you describing a visual bouncing sensation or a off balanced dizzy feeling?
Yes perhaps your bouncing vision is migraine related.
These terms cochlear hydrops, endolymphatic hydrops and menieres among a few more like “secondary endolymphatic hydrops” are used interchangeably by some professionals when they shouldn’t be. Cochlear hydrops has more of a hearing oriented symptoms but when I did the tests they didn’t find any hearing problem the same day I was diagnosed cochlear hydrops, which they also interchangeably call meniere’s. The only hearing loss I have is sometimes that comes for 5 seconds, maybe once a 1 month or once every two months and after 5 seconds it goes back to normal.
I’m describing an off balanced dizzy feeling that is there all day and night. It feels like you’re walking on a trampoline, if sitting/sleeping it feels like I’m tilting a bit like on a boat Do you have this as well?
Yes, I have that off-balanced dizzy feeling as well 24/7. Some days better than others. For example today I am having an extreme positional like vertigo. Can’t look up or down . Can’t lay flat and turn my head either way. I called my physician with the obvious question of “Is this BPPV” his response surprised me. He thinks it’s coming from migraine. He thinks hydrops would not present this way.
Will see him tomorrow.
I share this as these disorders are so confusing . It’s disturbing…
Nygal, in addition to having the off balanced dizzy feeling 24/7, I did have symptoms of turning left or right in bed causing mini spins about two years ago when all of this became noticeable. The day prior to it I had Doritos chips which contains MSG and no matter which way I turned I would get mini spins, so then I called in a Doctor to check for BPPV and it wasn’t BPPV despite the fact it is similar to it (positional). It cleared on its own, and I attribute that to the MSG leaving my system. I have avoided MSG for the last two years to my best ability and never got those mini spins ever again, so since MSG is a thing to avoid for migraine sufferers and MAV suffers alike, I do believe it is Migraine related as well.
Also a week or two prior to the vague positional vertigo, I experienced real BPPV which happened only on one side like clockwork there was nothing vague about it and it was very clear cut and intense, everytime I turned to the left, fast room spinning vertigo occured. It also happened as I was about to get up, which is textbook BPPV. I did the Epley maneuvre for that side and it was resolved with one try.
Something for your awareness map is, MSG is a calcium channel opener, it sets calcium loose. Magnesium is a calcium channel closer, it helps absorb calcium. It’s interesting to note that migraine suffers seem to benefit from magnesium intake and this coincides with with the migraine cause. Take away from this is try to take everyday magnesium with your doctors approval of course, and see if you improve over time. Perhaps you won’t get the positional vertigo as much or with less intensity or hopefully never again. Liv from this forum which Im sure you’re familiar with, takes magnesium everyday along with some other supplements and she said she’s doing well.
MSG is also sometimes masked under different names, you can check out the truthinlabelling website to check what other names it has. If you don’t think that was it, did you have a lot of sodium intake the day before?
What did you have the previous day from morning to night if you don’t mind? Maybe I can catch something for you.
I had been on a strict migraine as well as hydrops diet . I began to deviate off my diet regimen in the past month as I had lost 22 pounds since February. I was losing way to much weight . Yes, it is very possible that my excess sodium and sugar and all the other potential food triggers caused this.
It’s difficult to maintain both a migraine and hydrops diet at the same time. I take a diuretic . The recommended foods to keep my potassium levels in the normal range are forbidden on the migraine diet. Not many good choices. I believe that I should be prescribed a potassium supplement.
I was advised to take magnesium supplements as part of the migraine vitamin regimen but was having terrible stomach issues. It really made me feel sick. I decided to eliminate. Perhaps, another type could work.
The day before this episode, I ate all trigger foods. Cake, chocolate and yes, pizza. We had been to my nephews Birthday and I did indulge. I guess I am paying for it.
Thank you for all the information. Greatly appreciated!
Sure thing Nygal. Just be careful with the splurging because if it happens to be menieres and not MAV somehow, the little mini spins could cause further damage and balooning of the tissues and sometimes even cause full blown meniere’s if it’s secondary endolymphatic hydrops we have, and not MAV.
Also regarding potassium, I drink coconut water Grace brand , has very little sugar and very high in potassium, about 500mg of it for 250 mL.
I wish we could figure out if this is really a different tyep of menieres or MAV. There is a youtube video I’d want to share about secondary endolymphatic hydrops but sharing links, disabled me the ability to write replies so I won’t try again, but you can check that on youtube, it shows a 3d model and explanation by an ENT.
My theory too that many cases of MAV are actually Hydrops (but not full blown Menieres) with migraine as a result of the brain freaking out at the mixed messages. It makes sense because it explains the continuous rather than purely episodic symptoms. My episodic attacks are now pretty rare and minor now that I’m on migraine prophylaxis and I believe this exposes the residual underlying condition causing the migraine. Salt diet efficacy is contentious and some don’t believe it helps and is a result of confirmation bias. Then there are those that point out the migraine diet is suspiciously similar to the hydrops diet. But even I will admit that mini-spins have sometimes coincided with unusually high salt intake, but maybe they would have happened anyway? They could also coincide with episodes of stress, which could explain increases endolymphatic pressure or indeed a migraine cause or some kind of deficit in fluid regulation system? Could hydrops be due to a minor fistula leak that causes the body to compensate with more pressure? The science and definitive diagnostics are incredibly, frustratingly lacking despite decades and decades of research. On the plus side both migraine and secondary hydrops can often go into remission? This is somewhat born out by evidence from this site. It seems several contributors appear to get much better over the course of a couple of years or so? Could that be partly down to a reduction in stress reaction through habituation to the condition? Could it be healing or compensating? Improving symptom management? Maybe a combination which breaks the viscous cycle. Who knows but here’s hoping!!
I did have one ENT say I could have ‘a touch of hydrops’ but that it should ‘improve with time’ … really? bring it on!
I think that there is a difference between MAV and menieres because people with MAV can get to 90% or higher in feeling better, while meniere’s patients don’t (this is assuming they’re properly diagnosed and exhibit episodic vertigo attacks, ringing in ears, hearing loss etc). For proof of this just check one of the recent threads called “MAV Poll” Moreover I know that real meniere’s patients on menieres dot org which I been a member of for nearly 2 years, tend to get better with antiviral medications like acyclovir and valtrex which are anti herpes medications. Herpes attach to nerves so if it gets into the ear somehow or is activated there it would cause inflammation and hence vertigo attacks.
Since herpes also is a virus that can be in remission and then come out of remission it explains meniere’s very well.
Stress and such things tend to activate that virus. While in MAV stress is more neurological stimuli to deal with causing headaches and other symptoms. Also people with MAV seem to always complain about lights or grocery store isles or crowds, if you don’t have those and just have the headache then it might be meniere’s with an overactive brain trying to compensate then resulting in a headache but that doesn’t originate from MAV.
Where it gets obscure is when we don’t get full blown vertigo attacks, feel a constant unstableness 24/7 that could be meniere’s but just not full blown. I think to know what one has we have to pay attention to the details of our own condition. For example, every morning I get up from bed for the first 1-4 seconds I feel properly grounded, then all of a sudden the feeling like I’m walking on a trampoline comes on. As of today this leads me to believe that I have meniere’s because when lying down the inner ear fluid was at rest and when getting up it takes a few seconds to move about and where the dysfunction occurs, so hence for a few seconds I feel perfectly grounded but then it comes back as the fluid moves to its trigger point areas and then I feel the constant unstability. In the past I used to try inverting my head over the couch for a few seconds, and when I got up, once again I felt very grounded and balanced for a few seconds, and then it came back. So this is either fluid OR maybe better circulation. I want to make a thread asking real MAV sufferers if they noticed this exact thing or not, if not then it has to be either menieres or bad circulation, or perhaps something else. Nygal and Turnitaround if you have noticed this let me know too. We can figure this out. Researchers for the most part are not heavily invested into this disease because they haven’t felt it, so there is no real need for them to really put their brains at work, otherwise I think making distinction between these disorders should be more simple, the devil being in the details!
Turnitaround regarding mini spins resulting from unusually high salt intake, that could be true because when I had a doritos chip bag intentionally to figure out if I had menieres or not, it also was high in sodium of course and not just MSG. However I’ve had half a medium pizza and coke from time to time and I didn’t get mini spins at all. Sometimes I buffered the high salt intake with coconut water which has the potassium (we are supposed to have twice as much potassium than salt), I did notice hearing going down for a few seconds and come back however after these indulgences. The pizzas had pepperoni and bacon crumble and pineapple, so nitrites had to be there and maybe a little msg from pepperoni but not much I think. If I were to eat a whole bag of doritos I’m sure I’d get mini spins again, wether it’s from too much salt or MSG I still don’t know.
Let me know what you guys think about the getting up from bed theory. Also I DON’T recommend anyone try eating Doritos to try to figure out which one they have, as I said before it can cause further damage and ballooning of the cochlea or semicircular canals.
No, I don’t have that feeling of groundedness, I’m very slightly dizzy from the word go in the morning. However, on some mornings I do get muffled hearing on standing up which lasts for a few seconds, then disappears. I’ve wondered if this is down to a fistula leak (which would explain secondary hydrops)
As you say, I also never get full blown vertigo attacks in the way I’ve heard meniere’s patients describe them, mine are sort of short feelings of dizziness without violent spinning, no nausea, and definitely no noticeable loss of hearing, although I DO get loud tinnitus on some occasions. So I call them mini-spins because they are short duration and not that violent. Also they almost never happen when i’m standing up, only happen when lying down. When they do happen sitting, I feel a slight lightheadness for a second or two, then it passes.
My theory, is this is just a spectrum condition, and meniere’s patients simply have an extreme version of it.
However, in my case I get constant imbalance, so my thoughts are that the dizziness is due to pressure in the inner ear which is different to the other healthy ear and is changing, so the brain can’t accurately read it. And this confusion leads to migraines were I not on prophylaxis.
My journey all started with trauma to my left ear, with a period of severe imbalance which cleared up after 5 weeks completely, then 5 months later, bam I felt really light headed and my imbalance returned and a few weeks later, tinnitus and migraines arrived. So I personally conclude I have secondary hydrops from the original incident, though my neuro would tell you I don’t
That is exactly how I’d describe my dizziness episodes.
When you walk does it feel like you’re walking on a trampoline? That’s how it feels like for me, and when I sit it can feel like I’m on a boat that is rocking side to side.
Also how did the trauma happen to the ear?
The trauma, very embarrassing - i had a lot of compacted wax build up and pointed my shower head into my ear in an attempt to clear it. It wasn’t very powerful and only slightly warm, but I felt uncomfortable at the time and then dizzy 15 minutes later which got very much worse by night and following day… My theory is it created barotrauma, hence my suspicion I created a fistula. It took 5 weeks to pass and was very scary. I thought i’d dodged the bullet. I was wrong ;(. Both my neuro and a well respected ENT don’t believe it would have been enough to hurt my ear, but the co-incidence is just too compelling - you don’t spend all your life without dizziness, then the one day you point the shower in your ear you get dizzy shortly after, without the two things being connected - you just know. Amazing how delicate the ear is! I had almost no symptoms for the following 5 months after recovering, then bam! I’ve not been investigated for a fistula yet … its tempting but they are known to heal eventually but I believe my dizziness is down to secondary hydrops - its very different to the severe imbalance I had the first time around. Tragically I have auditory symptoms now that I didn’t have originally, together with the mini-spins, which also didn’t occur the first time.
My dizziness on meds is much less than walking on trampoline and I no longer have that whooshing feeling when turning or moving through tight spaces. My feet feel the ground firmly now, but prior to amitriptyline the ground felt soft … perhaps a bit like a trampoline.
Very interesting! I too have had compacted wax build up several times, it’s nothing to be embarassed about because some ears produce more wax or is hard for it to get out of the ear canal while for some it’s no problem. I had several ear cleaning where they fill a syring with water then squirt the pressurized water in my ear to get it out. I’ve always been wondering if having done that is what contributed to my imbalance since. And what exactly happened, you know?
One thing to note is when cold water goes into the ear or warm water it can cause vertigo, they do this test in audiologist office, it’s called a caloric test. So as you said you were using slightly warm and the issue has persisted for long periods of time while a caloric test comes then goes away in a minute. So it wasn’t a caloric thing obviously, it may have been pathogen related which would require the ear drum to be ruptured. I’m not sure what you mean by barotrauma, do you mean the change of pressure in the ear while it was under water caused some kind of pressure changes in the inner ear and thus some sort of damage? Also please explain what you mean by fistula in your case.
Next question I have is have you ever heard a whistling sound in the affected ear while blowing your nose or whatever prior to getthing these symptoms and even today? This could indicate a rupture that may not be visible.
One ENT thought I might have induced a caloric reaction and the rest was shock/psychological. Not sure I buy that.
I more conservatively cleared the wax with drops and had my clear ears examined within 4 weeks of the event: no sign of trauma to the ear drums whatsoever. So I’m assuming there was pressure trauma to the inner ear.
The other thing against it being pathogenic is apparently vestibular neuritis almost never strikes twice.
Also if it’s a fistula I would assume positive pressure outwards like a semiconductor fab, so hard for a virus to go inwards? Also I just don’t believe the body is so fragile to pathogens.
That Dr. who said caloric reaction then rest may have been psychological makes no sense at all.
The thing with pressure trauma is people get their ears cleaned by handful through the syringe method and that has much pressure than a shower stream would unless you got a very powerful power stream. So I don’t really see that this could be the cause, given the above.
I’ve seen a video where a guy got his local hose water in his ear and next day he was dizzy and lost some of his hearing. The conclusion was some kind of pathogen got into the ear when this happened unfortunately causing his issues. The body is pretty good with pathogens yes but the inner ear is not so much, seems way more fragile. But how it would enter is something I don’t understand given your ears were clear of trauma. Mine were checked and didn’t have any trauma either. Maybe it is the barotrauma but its seems highly unlikely because there is the middle ear and eustachian tube in between the ear drum and inner ear. Also people pop their ears all the time doing the valsalva maneuvre when on airplane and such and that doesn’t give people these kind of issues.
What is a fistula exactly in the case of ears?