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New hearing aid molds and sudden onset of vestibular dysfunction

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Hi! I’m new to this forum but not to hearing loss and hearing aids. In fact, I’ve worn hearing aids since my mid-40s, over 20 years ago. About a year and a half ago, I got a new pair of Oticon hearing aids and my audiologist suggested custom-fitted molds because my hearing loss is severe. The following day after wearing the new molds, my whole world was reeling and I ended up in the ER thinking I was having a heart attack. Bottom line: there was nothing wrong with anything physically that was causing my vestibular issue. It appears that my feelings of being off-balance are somehow related to these new molds, but my audiologist has never heard of such a thing and I can’t find anything about hearing aids causing vestibular dysfunction online. I went to a vestibular “specialist” who diagnosed me with Dandy-Walker syndrome (when I looked it up, I had to laugh) and he basically sent me on my way, prescribing vestibular rehabilitation which hasn’t done a bit of good. I’m still dealing with these feelings of imbalance on a daily basis but I try to work through it. Has anyone else in this community had anything like this happen to them?

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I have been wearing aids 20 years. Always either cutom aids and now cutom ear molds. I haven’t even heard of what you are experiencing. I do have to ask a few questions. First are your cutom ear molds vented? And second are you experiencing and discomfort for poorly fitting eae molds?

In reply to @cvkemp

I know. This is the standard reply I get. Lol. Yes, they are vented and they are property sized. I even sent them back to be sized a wee bit smaller to cut down on the occlusion. No discomfort, unless you consider walking around looking like you’re inebriated. But that’s a whole different level of discomfort I guess.

In reply to @user490

It seems to improve with domes, but not right away. It’s like my system needs to recalibrate over a couple of days. Unfortunately, my hearing ability diminishes significantly with just the domes. So do I focus on my hearing or my balance as an older adult? It’s a conundrum.

@Candice_H said:

prescribing vestibular rehabilitation which hasn’t done a bit of good.

Welcome to the forum!

I had PT after surgery a few years ago and they had playing cards attached to the walls all over the hallways. When I asked about it, they told me it was for vestibular rehab. They said it is typically very slow (even for PT, which always seem to take forever) and patients are generally unhappy with it. They see some success, but… Sounds like torture to me.

Best wishes,
WH

In reply to @Candice_H

Have your audiologist work with Oticon to make you new and different molds, possibly in a softer material. See what Oticon suggests.

If that fails, try another brand of hearing aid. Perhaps the receiver shape doesn’t work for your ear. Are your ear canals smaller?

You might also want to consult other audiologists to get some suggestions even if you take those ideas back to your current one.

In reply to @WhiteHat

Thank you, WH. I did go through 2 bouts of vestibular PT. Lots of $ and no discernable difference. And considering that the “specialist” concluded that I was “missing” my vestibular apparatus after caloric testing, I’m wondering what he hoped I could get from PT. It is an area of the human body where there isn’t much in the way of medical help. I was just wondering if I’m the only one who has experienced this.

In reply to @user490

Thank you. We did make new molds and they didn’t make a difference. Oticon didn’t offer much help. After this set of $6k hearing aids, additional $ for two rounds of custom molds, , scans, and a vestibular specialist who threw out an absurd diagnosis of a congenital disease, I’m reluctant to keep subjecting myself to the medical community. This post was mostly to see if anyone else had experienced something like this so I don’t feel quite so alone. Lol.

Can you provide some detail on hearing aid model, receiver power, mold material/type? Did you try a softer mold material?

Are there nerves that can be irritated by pressure from a mold? What happens for you when you speak and eat?

I have had several friends develop vestibular neuritis and while very debilitating it was self limiting. The longest duration I recall was roughly a year. That you were diagnosed with DWS is very strange as it is my impression that this is a congenital condition and really does not sound related. Not knowing exactly where the vestibulocochlear nerve is in relation to custom in ear molds such as you describe, I would nonetheless wonder if there was some compression of that nerve or sympathetic pain/inflammation that could have triggered this. Is the balance issue present at all times, even when not wearing your aids? I am very sympathetic–I am actually getting ready to post to this group with a question about trigeminal neuralgia and hearing aids–and I would encourage you to get a second opinion. No matter what is causing this, and it could be entirely coincidental as far as your hearing aids are concerned, but it seems to be chronic and I would push for more information.

I’ve worn hearing aids for a number of years now, and two years ago suffered an episode with balance and other issues. After an and extensive testing and consultations at a reputable medical center, the diagnosis was vestibular dysfunction. Not very satisfying as an explanation, but I believe this is the best I’m going to get. Vestibular rehab helps some. After two years, it has gotten somewhat better, but I still have moments where I don’t walk a straight line. When I asked where the dysfunction was, inner ear, proprioceptors, vision system, nerves, brain, etc. the answer came back that it was the brain. Makes sense given some of my other symptoms. In my totally non-medically trained opinion, I’m leaning towards long covid. I had contracted that before the vaccines were available, and was hospitalized.
So you are not alone, and you have my best hopes and wishes. But unfortunately, I can’t point you towards a solution.

In reply to @user490

My hearing aid model is Oticon More 1 Minirite R but I doubt it’s the aids themselves. The custom molds are a hard plastic that go deep into my ear canal. I sent them back to be refitted once, to get a different configuration the second time. I have suggested that there might be a pressure problem that has exacerbated the imbalance, but I just get incredulous looks from both my audiologist and the physician who tested me – who happens to be approved by the Vestibular Disorders Association. It’s been frustrating, to say the least.

In reply to @SigoEsperanza

Thank you! The balance problem is now chronic. I am functionally deaf without the hearing aids, so going without them as a test really isn’t an option. I was hoping to find someone else who had experienced this to get some further insight. The misdiagnosis leaves me even more frustrated since there aren’t many vestibular specialists to get second or third opinions. I got the name of this one from the Vestibular Disorders Association. sigh Here’s hoping you and I both get some answers.

Edited

@Graywolf did your issue improve when you stop wearing aids or try domes?

@Candice_H when you say chronic does it no longer improve when not wearing the aids or using domes?

Can you hear enough to get by with domes even if it’s not as well? The timing of the molds could be coincidence but as you feel better with domes it sounds like the molds and/or how sealed up the fit is with the molds is connected and maybe causing the problem to continue.

How is your hearing with the molds? Did they consider that maybe a hearing aid is no longer the best option for you and they might be sending so much power to your ear to disturb your balance? This could be something unique to your ear canal shape. Do you make lots of wax which could be plugging the mold vent? Have your trialed another brand of hearing aids? Did you wear Oticon before this pair? Have you tried warranty replacement in case the aids are defective somehow?

Another idea which is likely not the issue but was to test for. Which hearing aids did you wear previously? For the Oticon, try putting them in flight mode to turn Bluetooth off at the aids. You will hear the same but not be able to stream or use the phone or control them remotely. You have to enable flight mode each time you remove them from the charger. Test this for a few days and see if it makes a difference. There’s a post about EMF being high with Bluetooth on compared to older hearing aids.

How are your aids setup in terms of directionality of the mics or is it the standard open setup for Oticon? Are any of the other hearing aid modes less problematic?

Doctors often don’t know about many possible issues and mostly won’t spend the time for one unique case. You have some data and can do experiments to find what helps even though you can’t prove why it helps or gain endorsement from your doctors. It’s one thing when a person is adjusting to an aid and doesn’t like the new sound. It’s another when experiencing physical symptoms which could lead to injury.

I have not found much correlation with anything. Stress possibly, but generally not much else. One day a month things might be close to what used to be normal. Other days, a mild headache (more an annoyance than an ache) and weak balance. No correlation to wearing aids or not.

As far as referrals for specialists are concerned, when dealing with something that is rare like this and can have multiple etiologies, you really have to go to a research/teaching hospital IMHO that has specialists in this area. I would research/read the bios of the treating physicians and look for someone whose credentials and length of experience seems solid. I might also mention that one of my friends was very successfully treated with a medication that calmed the inflamed nerves they thought responsible for her condition. Since this is a forum first and foremost for I don’t want to engage in a medical discussion, but maybe there is a way to exchange some private message here and I can tell you more about that. Again, you have my sympathies. Once as a child I had swimmers ear and the accompanying vertigo was truly horrible. I know from my friends experience with vestibular issues that it is equally awful, so I hope you do find answers and relief.

Friend with excellent hearing had increasing balance issues and went through specialists and testing to no avail. Ended up with a doctor that specializes in neck area muscles and diagnosed the issue as muscle tightness, specific ones in this case, that connect near the ear so created undue pressure in that area. Could it be that the ear molds exacerbate a similar issue for you? Physical therapy created relief but it took a few months.

I use Phonak hearing aids and suffer from dizziness so I was interested in all the answers you received. My audiologist didn’t address it when I asked, my doctor suggested vestibular PT. I think it’s weather related in severity, but daily even if it’s mild. I’ve worn for a year now and it’s getting worse, not better. My tinnitus has worsened as well. It’s difficult to find anything to support this because dizziness seems to go away after a few days of wearing aids, or aids actually help people’s balance. In my case, and seems in your case, that hasn’t happened. I wear headphones over my hearing aids and it helps sometimes, so I was considering molds. But you have molds… I have profound loss in one ear, severe in the other ear. I have had loss for over 20 years and hearing aids for only a year. I think maybe my brain just isn’t wired for the noise anymore.

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