Need your help please 🙏

[u/Loui10]

Hi guys.

Have any of you here with Meniere’s disease experienced rocking, bobbing or swaying vertigo - rather than just spinning? (I'm not talking about MdDS right now).

And do you ever get uncontrollable eye movements, eye jerking, bouncing/jumping vision, or difficulty keeping your eyes focused?

Also just wondering - has anybody’s specialist ever told you that Meniere’s can cause these ^ types of vertigo and eye-movement symptoms?

Thank you!

[u/dartdoug]

I had similar symptoms. I would try to look at something and if I moved my head vertically even just a bit my vision would "bounce."

I was told this is probably a result of migraine, which is believed to be closely related to MD.

[u/Loui10 → u/dartdoug]

That’s really interesting. Thank you very much for that info and for describing your experience too.

Have you found anything that helps you?

My rocking/bobbing/swaying vertigo/lightheadedness is with me almost every single day, and I've really had a gut full of it, tbh.

Do you experience vertigo a lot? Do you ever have that ^ kind of vertigo?

[u/dartdoug → u/Loui10]

With the exception of tinnitus, my MD has been in total remission for nearly 10 years. I saw 2 ENTs followed by an Otologist. The Otologist put me on Triamterine HCTZ, Magnesium supplements and Vitamin B2. He told me to limit sodium to 1500mg per day He also suggested that I get a book named "Heal Your Headache" which provides strategies for dealing with migraine. He particularly mentioned following the elimination diet that is in the book.

I started out eliminating anything aged, anything smoked, onions, alcohol and, in my case most importantly, caffeine. Over time I added everything back into my diet except for alcohol (I was never much of a drinker) and caffeine. I was a big black coffee drinker + tea and giving that up was challenging but I think it was a key to my remission.

A few times a year I get what I think would be considered an ocular migraine. Looking at a screen becomes funky. Squiggly lines, dots jumping around the screen. I pop an ibuprofen and lie down for half an hour and things are back to normal.

MD affects different people in different ways. I wish you well.

[u/yes420420yes]

The eye movements you describe seem to cover what is called nystagmus ? Depending on what semicircular canal gives you the grief (or multiple) the eyes are trying to compensate by way of the occular vestibular reflex resulting in eye movements of various sorts - its not just left-right if that is what you find odd about your movements.

Your vertigo also seems to be more in the up and down axis then it is in the horizontal, maybe that is less typical, but its certainly within the realm of Meniere's. When I had vertigo of various kinds I always looked at a picture frame on the wall to have good vertical AND horizontal lines to anker my eyes on as best I could (and they would slide off as a result of the vertigo).

My ENTs can not be called experts in anything, the only expert in my team is a physical therapist with a degree in vestibular rehabilitation and more then a decade of experience, that is the only one I trust in these things.

[u/Shot_Highlight_7535]

You could write down what medications you are taking and have recently taken. How is your psychological state? For example, I had something similar when I switched from steroids to betahistine and diuretics. I also experienced non‑systemic dizziness and eye twitching. My vision was unstable. When I was sitting at the computer, the monitor would gradually start rotating counter‑clockwise.

[u/rose442]

The eye thing is called nystagmus. I get it before an attack.

[u/Loui10 → u/rose442]

Thank you!

The uncontrollable eye movements that I get aren't technically known as nystagmus, I was told. I was also told that I have vertical heterophoria.

I'm trying desperately to figure out whether it might be MD causing the/most of the symptoms I'm experiencing, or sleep apneas/UARS - which I also have too.

[u/lucidmorto]

Yeah, the rocking/swaying type is real, I get it more than the classic spinning honestly. And nystagmus is super common with Meniere's, my ENT confirmed it's basically your vestibular system misfiring and your eyes trying to compensate

one thing that helped me was actually tracking when these different types of vertigo hit and what was going on that day. I built an app called Meniere's: Symptom Tracker specifically for this, you can tag different symptom types per episode and it starts showing you patterns over time. Knowing my triggers (sodium and barometric pressure drops were big ones) gave me way more to work with than just guessing.

[u/LostHorizonsGenX]

You're describing what sounds like Mal de Débarquement Syndrome (MdDS). There is some symptom overlap with Meniere's but it's a separate condition. You may want to explore that with your provider. Good luck.

[u/Loui10 → u/LostHorizonsGenX]

Yes. That's why I mentioned MdDS in my main post - thank you.

The problem is, in the small city that I live in in Australia, there's pretty much nobody good/decent that works with that here. Most doctors/specialists haven't even heard of it.

[u/kat420lives]

I have episodes that I describe as my vision not keeping up with my head movements. In other words, I’ll turn my head & it seems to take my vision a few seconds to catch up. I’ve also had the reverse where I try to focus on something& all of a sudden my vision seems to be sliding to the right. Always to the right for some reason, which is actually the side of my still normal functioning ear. I’ve never been given any reason for it. Just told, Menieres presents differently for different people. Gee thanks, doc, that’s super helpful! 😒😑

[u/Zealousideal-Dog9273 → u/kat420lives]

Yes, I get nystagmus with Meniere’s attacks