Seeking Advice for Sensorineural Hearing Loss and Drinking Question

Posted by peter21 @peter21, Aug 3, 2023

Hi everyone,

My mom has been experiencing some very puzzling symptoms that might be related to hearing loss that we can't figure out. I'm hoping somewhere here will have insights, experiences, or advice that might shed light on her situation.

Background:
My mom has dealt with severe sensorineural hearing loss in her left ear for the past 15 years. Over the years, she has also struggled with on-and-off issues related to depression and alcohol consumption. In the past few months (as far as I can tell, and my baseline is healthy skepticism), she has stopped her drinking and is now in a much better mental health state.

Current Symptoms:
Despite these positive changes, she still faces some baffling symptoms:

- After car rides longer than 15 minutes, she experiences nausea, confusion, irritability, and forgetfulness about 1-2 hours after returning home.

- These symptoms are followed by a bout of hypersomnia, during which she randomly sleeps for extended periods over the next 36-48 hours.

- She emits a peculiar fragrance during this period. It's hard to describe but it smells sort of like a wilting flower, like something that smells good but is a tad off...

- Certain smells, particularly fishy odors, become extremely bothersome to her during these episodes.

- Her blood pressure tends to rise during the more severe instances.

- The symptoms generally subside within 36-48 hours, but these symptoms also tend to appear during cloudy weather or periods of low atmospheric pressure.

Additional Context:
- She had been drinking for about a decade - she would usually go out to buy liquor, drink at home, and exhibit the above symptoms. So when we first found out she was secretly drinking, I assumed all these symptoms were a result of the drinking. Therefore, when she stopped drinking a few months ago and these symptoms persisted, I initially suspected some conditioning might be at play, given the car rides usually preceded the drinking and hence symptoms.

- However, since these symptoms persist even when she's in good spirits and not consuming alcohol, I'm suspecting if it might have more to do with her hearing loss - riding in a car, throwing off her balance, etc.

- She had experienced hearing loss in both ears as a child, and she believes it's linked to streptomycin shots.

- Around 15 years ago, she was diagnosed with severe sensorineural hearing loss in her left ear, with her doctor indicating the inner ear's neural hairs were all non-functional. Interestingly, she recalls hearing a loud bang! in her left ear and subsequent ringing during the exam - she thinks maybe the assistant accidentally cranked the device to max, but either way her hearing has since deteriorated.

- Her hearing loss has hampered her speech as a kid (not dramatically at all but the difference in some of her pronunciations are noticeable). This is also in her native tongue - it's impossible for her to learn English and I think that has been a huge weight on her psyche and confidence over the past 25 years.

Has anyone here seen or been through similar situations? The interplay between sensorineural hearing loss, previous depression, and drinking might be wholly unrelated or maybe they're all tied together. I feel like I can't even figure out what's what at the moment, let alone what the best path forward should be. But I have to get to the bottom of this and help my mom get her life back in order. Any insights, personal experiences, expertise or advice would be greatly appreciated!

Interested in more discussions like this? Go to the Hearing Loss Support Group.

Your mother has a very baffling set of symptoms. I hope someone here can provide information. I recommend seeing an expert at Mayo. They are well versed in unusual conditions. Best to you and your mother, and kudos for being so proactive and helpful to her.

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Yes, this is very baffling. A strange set of symptoms to be sure. If anyone has any experience with something similar, I hope they will share that experience with us.

Is your mother seeing a specialist?

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I just did a quick google search and found Maple Sugar Urine Disease which is a genetic disease that prevents making enzymes that breakdown amino acids. There are several forms of this syndrome that can appear at any age. Some of the symptoms might be what your mother is experiencing. Mayo Clinic is definitely a place for testing her to clarify what her true diagnosis is which may or may not be involved with hearing loss. It can be difficult to tease out the strands of a rare condition like this. Proper diagnosis can lead to treatment. Good luck in your search for an answer and its wonderful you are helping your mother to feel better.

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@julieo4

Yes, this is very baffling. A strange set of symptoms to be sure. If anyone has any experience with something similar, I hope they will share that experience with us.

Is your mother seeing a specialist?

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Thank you, Julie. She is starting with an ENT that her primary doctor referred her to this Thursday. We want to ask the ENT to test her hearing and see if there have been any advancements over the past 15 years that would be suitable for her situation.

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@sunnyone

I just did a quick google search and found Maple Sugar Urine Disease which is a genetic disease that prevents making enzymes that breakdown amino acids. There are several forms of this syndrome that can appear at any age. Some of the symptoms might be what your mother is experiencing. Mayo Clinic is definitely a place for testing her to clarify what her true diagnosis is which may or may not be involved with hearing loss. It can be difficult to tease out the strands of a rare condition like this. Proper diagnosis can lead to treatment. Good luck in your search for an answer and its wonderful you are helping your mother to feel better.

Jump to this post

Thank you sunnyone. I will look more into this disease. Do you have any advice on how to get her to be seen at the Mayo Clinic? They're certainly our number one choice but I've had this notion (perhaps wrongly) that it's almost impossible to get seen at Mayo.

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@mpeters

Your mother has a very baffling set of symptoms. I hope someone here can provide information. I recommend seeing an expert at Mayo. They are well versed in unusual conditions. Best to you and your mother, and kudos for being so proactive and helpful to her.

Jump to this post

Thank you mpeters! Do you have any advice on how I can get my mom seen at Mayo?

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@peter21

Thank you sunnyone. I will look more into this disease. Do you have any advice on how to get her to be seen at the Mayo Clinic? They're certainly our number one choice but I've had this notion (perhaps wrongly) that it's almost impossible to get seen at Mayo.

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Mayo does have certain specialties and they do treat rare diseases. There is a thread on Mayo Clinic Connect about why its so hard to get an appointment:
https://connect.mayoclinic.org/discussion/cant-get-an-appointment/?pg=7
Persistence and perhaps some testing to support your appeal may help but there is a long waiting list. This may well be the rare disease above which might help get their attention but your mother needs treatment now. So a double pronged approach to get diagnosis now while trying to get accepted to Mayo may be the way to go. Also if there is another university medical center near you that is worth exploring. Nothing is easy about health care these days. Let us know how things go!

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Have you considered that she might have a Vistibular migraine? The strange smell doesn’t fit but the other symptoms are compatible with that diagnosis

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@mpeters

Your mother has a very baffling set of symptoms. I hope someone here can provide information. I recommend seeing an expert at Mayo. They are well versed in unusual conditions. Best to you and your mother, and kudos for being so proactive and helpful to her.

Jump to this post

I sincerely wish I had an answer to your question. There are a lot of people who are in the sane quandary. I’m assuming you asked the question because you have already tried to get her an appointment with Mayo Clinic. Perhaps one of the moderators can give you an answer.

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