Does anyone have this type of off balance feeling?

This happens to me after trying ear plugs, using ear buds or earphones, after loud live music, and also when I played rain sounds all night to try to mask tinnitus. My body didn't know what was up and what was down but the room was not spinning. (I can also get room spinning but for different reasons).

ENY and Neuro are no help. They will say it's a vestibular migraine, or from your neck. They will say your ear looks fine. I have given up and avoid triggers. Hearing aids inside the ear would probably trigger me.

Do you think it is the new hearing aids? Do you have tinnitus or hyperacusis as well?

I thought it might be my hearing aids but I tried wearing my old ones and I get it when wearing them too. I also thought it was from the RSV vaccine. Then I realized I wrote in my diary about my first episode and it was the day before the vaccine. That day it was a brief episode after being out and about all day feeling fine. Usually it doesn't bother me while I am sitting but today I can feel it sitting here typing. Loud music annoys me but I cannot say loud sounds bring this on. I do get a slight weakness which I think got me the neurological referral. I actually thought maybe I was over it this week because I had several days of feeling just fine but then yesterday it was back pretty much all day and now after being up for a while I feel it back again. I am wondering what the 2 hours of audiology testing will be like this week, no eating for 4 hours prior.
We shall see. Along with hearing loss I have tinnitus 24/7 and extreme pain when flying but that sums up my ear issues at this point….
Thank you for your response!

I get the weakness as well. I don't really pursue this anymore. I have gone to top doctors and clinics with no answers. I think it is related to tinnitus and may be coming from the brain, but won't show up on imaging.

Do you wear hearing aids outside the ear, like the ones that hook n the ear? Do they make noise (my mother's had that loud high pitched squeal and that would send me into a state of imbalance for sure.)

Have you considered a balance center? There are exercises we can do. I suggest the most helpful thing for me was a PT who specializes in vertigo. They can eliminate BPPV, inner ear, and decide if it is most likely brain-based.

The audiologist should also discuss the best hearing aid for you.

I have never heard of a balance center. I will look into it. I live near Baltimore there should be something around.
I actually went to a new audiologist for my recent hearing aids. However I’m still going to the ENT associated with previous audiologist and that is who will be testing me. She was not much help with hearing aids. So I’m skeptical about this testing. I wear Oticon Real hearing aids outside ear with wire and dome inside ear. Sometimes I feel my ears get tired of them or I feel slight discomfort after wearing them all day. I tried others before I got these. I was not impressed with either. These were supposed to be so much better than my old Oticon, lol. 🙄 They were so expensive too. Ridiculous

The problem may be in your brain via nerves in your auditory system. There are neuro- otolaryngologists but have not found ENT, neurologist or neuro-otolaryngologists to be helpful. Physical therapists who specialize in vertigo and balance could at least eliminate some things pretty easily in one session.

My balance issues are sporadic depending on triggers (I am keeping a list). I also have left facial numbness which was worked up to see if I had an acoustic neuroma. Your problem seems more constant so I understand why you are pursuing answers.

Can’t comment on ever had “off balance” experience when I wore my single sided Phonak hearing aid over the course of 3-yr’s; however, when I transitioned to my OSIA2 bone conduction implant last August (2023) I did start experiencing occasional off balance moments which continue at this time. I’ve discussed with my Neuro Otologist and he indicated it would be a rare occurrence and to keep him updated if this continues. To be honest, taking into consideration other med’s I take I can’t rule out that being the cause; albeit a high coincidence it started following my OSIA2 surgery (which went flawlessly I need to mention)

Ask your PCP, or someone, about the possibility of you having started to develop either Neuropathy or early Parkinson because they both have your symptoms. Good luck!

I sure hope not. I have a neurology referral in a month or so…..

I would get checked for Ménière’s disease.

This is an interesting discussion. I can relate especially to the first comment with the side step while walking down a hall or across a room, also walking on uneven ground outside. Lately I've been feeling a bit disoriented when looking left or right occasionally. I had one bad vertigo episode a few years ago, but none since. The balance issue started as my hearing loss has become severe. I've read that three things that may occur with moderate to severe loss (and aging) are cognitive decline, loss of balance and depression, so I've chalked it up to "goes with the territory". I do balance exercises I've seen online with no notable improvement, but having read the above discussions I'm thinking it would be a good idea to check with the otolaryngologist or look for a PT who specializes in balance and vertigo. At a minimum it would quantify and give me a record of balance.
@sag