She was waiting to give me medical clearance until after the ct scan, so I’m assuming she will give it now. I’m hoping that it goes better than 2022, but I think I will have more realistic expectations.
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It’s an unusual hearing loss. Expect that there might be a significant amount of adjustment before it is sounding right to you. Hopefully you have a good and patient and interested clinician. I’ll be very interested to see how it goes for you.
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Welcome, thanks for sharing. What a journey!
All I have to add is, your sawtooth hearing profile has me thinking, models of HA with higher bands/channels could help dial in a better fitting for you.
Well that IS a low Vit-D level, and D is a big part of the body’s immune system, so definitely supplement and get it boosted.
If you have connective tissue issues, who can you go to next? Did you ever have Covid? Long Covid seems to find a happy home in one’s “weakest link” and can trigger autoimmune reactions, and I sometimes think even the vaccines do the same - altho I’m up-to-date in all but the most recent bivalent one.
Has anyone recommended a blood workup to look for CRP or other inflammatory markers in your system? It could explain why you are the only one among siblings who have some kind of systemic inflammation going on.
I found this on Pubmed regarding your double notch audiogram:
also the notch at 2k might be a Carhart notch
The introduction to this study mentions several possible causes for it.
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Carhart notch is a conductive notch. This hearing loss is sensorineural.
Maybe but I think she is being misdiagnosed. The double notch study found that " that the low frequency notch is probably also caused by noise damage." She says she and her mother both have Raynaud’s and that is caused by occupation. The ENTs that have looked at her are looking at the original audiogram and not looking at her history. If it is caused by occupation then I am thinking she might have legal rights she can pursue to pay for her treatment. And perhaps get better treatment.
I appreciate everyone’s thoughts! I have my new hearing aid appointment on Wednesday. Will let everyone know how they turn out. I’m going to bring my husband with this time so I can test them with his voice because he was one that I couldn’t hear with the other ones.
My kids have been very sick with RSV unfortunately and it seems to have hit my sinuses 
I have had COVID multiple times, the first time in particular I reacted quite badly. I’ll try to attach a picture of my hand from that. I did get CRP and other inflammatory tests and they all came back normal somehow, but I definitely have weird stuff going on. The joints on some of my fingers are quite painful. Hoping the rheumatologist can figure something out. I’ve been getting random rashes on my chest as well.
I have been a stay at home mom to six kids, the oldest is 14 and the youngest is 2.
I’m concerned I may lose my hearing suddenly. Right before my ct scan I randomly lost hearing in my left ear for 5 minutes. Felt quite sick when it happened. I had vertigo and high pitched ringing. I don’t know if anyone else has experienced that but no one can seem to give me answers. I get random times now where my hearing seems distorted, not sure how to explain it but this is the first year that has happened.
I still have my VNG and ABR coming up at the end of this month. Hopefully more information will be helpful!
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I met a couple at a wedding a couple years ago who had long covid, had lost hearing temporarily, at least in one case and the other yet not known if they’d recover their hearing. They both had experienced severe tinnitus with their losses and a variety of other issues from the long covid. So even if your hearing issues are covid related, it isn’t certain they are permanent, as after months and months you may get better.
I hope you get the best care, and do get all better.
WH
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Does she? Or is it primary Raynaud’s and genetic?
Carhart notch, being a conductive phenomenon, would not be the result of occupational noise. Could be the result of occupational head trauma, rarely.
I think the rheumatologist is the correct next step here.
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I am thinking MD ( Meniers Disease) is a possibility Rick? Notoriously difficult to get a definitive diagnosis though, as doctors tend to sit on the fence until it can’t be anything else… Vertigo, Wild fluctuations in hearing, Extremely loud Tinnitus, combined with Distortion, and Nausea, are all strong indications it could be MD, if Visual disturbances are also prevalent during an attack, then I fear the worst…The apparent allergic reactions on the hands, kinda throws me though? Having said that, I suffer from random allergies, (extremely itchy) that hit me anywhere, but especially on my back. I have never had a Dermatologist appointment to explain why! I self medicate, I use 2 different moisturiser treatments, Aveeno Skin Relief Moisturising Lotion (The Blue Lable one, they seem to be colour coded) and Dermacool to keep the itch down… Obviously, I hope I am 100% wrong, MD is a terrible affliction, but totally survivable, as witnessed by yours truly… For me, 6 to 8 years of cluster MD attacks, before MD abated, and I experienced “burn out”! MD destroys your Vestibular, your balance is badly affected, and it gradually takes away most of your residual hearing in the process… Unfortunately, at present there is no cure, MD is for life, but you adapt as best you can, it’s a roller coaster of emotions & symptoms, your mental health/wellbeing might be badly impacted, constant MD attacks reek havoc with your mind, and depression might rear its ugly head? My apologies, I write this post not as an alarmist, but in order to live with MD, I think it’s better to know the demons you might face, forewarned is forearmed… Personally, I had no inclination or information when I was first diagnosed with MD, no Doctor sat me down and said, this is what is going to happen, I was basically left to my own devices, thrown in at the deep end, and left to sink or swim! We are all born survivors, but with the help, love & support of friends, and family, you will win this battle… Cheers Kev 
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Thanks for your helpful post.
When she described her symptoms I thought of your posts in the past.
I do hope she doesn’t have to go through what you have but on the other hand she just might have found some support.
Thanks @kevels55
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This is not Meniere’s disease.
I hope the OP doesn’t take all of this wild speculation too seriously and lets the doctors do their work.
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You are welcome Rick… Everyone is different with MD, for instance, some folks (like me) just got the severe nausea most of the time, during and after MD attacks, others are less fortunate, they will vomit continuously… Strangely enough, my brother was diagnosed last year with MD, it isn’t believed to be genetic, so the odds of 2 close family members having MD are fairly astronomical, his symptoms are slight in comparison to how I was, but MD tends to start up relatively mild, after a year or two, it starts to gather pace, monthly becomes, fortnightly, then weekly, then daily cluster attacks, some weeks I couldn’t get out of bed, unless there was a slight lull in the vertigo, there was no rhyme or reason, so you where permanently stressed out, wondering when the next attack was imminent, 2 or 3 months could go bye, and you where fine, then it started again… There are triggers, salt, tea, coffee, and alcohol should be avoided… Visual impacts, flashing lights, repetitive flooring on shopping malls, pressurised aircraft cabins where especially bad for me, if I flew anywhere, I would be ill for 3 days… Nowadays, I am fine, apart from MD taking most of my residual hearing, and my balance not being that great, especially in the dark, but vertigo is mainly a thing of the past, no distortion in my hearing, which is a godsend! Cheers Kev
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Unfortunately @Neville, none of us are physicians, I especially take exception to ENT surgeons, most probably, the ones I encountered, where a poor reflection on the good guys out there, most where bad at guessing, or permanently sat on the fence! We aren’t saying this lady has MD, I am saying, if the symptoms add up, it’s a possibility… Thousands of folks, from all over the world read up on this forum, the vast majority aren’t members! Any pointers in the correct direction, or indeed the wrong direction, help eliminate the possibility of MD… Granted MD is rare, exceptionally so, but it isn’t beyond the realms of possibility… Given, in this day and age we can’t even cure a common cold… some physicians are full of their own BS, some are full of their own self importance, and some are excellent guess makers, others are really poor… Opinions are like a/holes, we have all got one 
Cheers Kev
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Meniere’s is quite specific. It causes episodes of vertigo lasting hours to days and fluctuating progressive hearing loss. It is often accompanied by a whooshing tinnitus. It is rare for it to be in both ears at the beginning. The OP has a relatively symmetrical progressive (not fluctuating) sensorineural hearing loss with no vertigo. There are no symptoms of Meniere’s here.
The OP needs to, as best as the doctors are able, rule out autoimmune contribution to this hearing loss. But after that, it is possible that we will really never know exactly what is going on. The cochlea is a little round black box that we cannot get into when someone is alive, and so we cannot see what is happening there. Once you rule out all possible medical concerns that we know about and might be able to do something about, the answer is just 
, as unsatisfying as that might be.
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@Neville this quote from the OP is why I brought this up. It just sounded so much like kevels55 symptoms from many of his posts.
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Mm, fair fair. That still does not sound like Meniere’s. The loss configuration is also wrong for Meniere’s.
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Granted @Neville… Apologies, I unfortunately, never read the whole thread, I only read the post above Ricks post, after Rick pinged me, as an absolute layman, for what it’s worth, I agree, that is a highly unusual audiogram, so it is possible, it may well be APD? But, other symptoms are close too the onset of MD, from previous personal experience, that’s near to how my MD started out, minus that audiogram! You might have noticed, I am rather scathing of ENT 
I had numerous bad experiences with that particular department, so much so, for my sins, I was (back then) totally belligerent towards them, probably caused by a clash of opinions with me, and the head ENT surgeon, we didn’t get on… and that might have been an understatement 
A total ignoramus of a man, he talked to you as if you weren’t there, of course he was aware of my opinion of him, but such is life, we can try to get along with most folks, others are so intransigent, the only opinion that counts is their own… Cheers Kev
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