Hi, I'm a newcomer here and have been struggling for the past year with cochlear hydrops manifested by moderate SNHL (low frequency) in my right ear; aural fullness and tinnitus (both ears), and some dizzyness. I have an informed ENT doctor and have gone through all the proscribed steps, ie low salt diet, diuretics (no effect), no alchohol, betahistine (no effect), prednisone pills, and just 2 months ago 2 intratympanic injections of steroids (no effect, just slight pain in ear). Now I am investigating using a hearing aid in my right ear to help with ear pressure and moderate hearing loss (low frequency). I am a retired musician and I am constantly making and listening to recordings. I am so frustrated with the bizarre low frequency booming, crazy ear pressure and disorienting difference in my 2 ears. It's like being crossed-eyed in my hearing all the time. Does anyone have any experience with this problem and can you recommend a particular hearing aid? I am looking at the Phonak Paradise (or similarly the Kirkland Signature 10.0) as well as a cheaper version (Relate 3.0) made by the same company offered by my health insurance provider. I know that reverse slope hearing loss is difficult to address with a hearing aid but I am running out of options. Just looking for any tips or experiences you can send my way. Thanks!
Not sure I can recommend much, but I am a (former) musician and can totally relate. I have a lot of original music that I can’t mix because Of this condition. All hearing aids do is amplify sound so that means the shit sound gets amplified as well. The one ear I have left is like hearing through a blown speaker and the aids only make that worse. Research this forum and get on some antivirals as soon as possible, be they prescribed (acyclovir) and/or supplemental( l-lysine, oliv leaf extract, etc.). I live with pitch shift no hyperacusis and ar times music is so very hard. The more you can do to try to prevent that the better. Some days I can’t tell the difference between a C chord and a D chord and that really sucks. But a lot of good help on this forum if you take the time, to research. Wish you the best! btw I am completely deaf in right ear and left is going bad. I use the cros system by phonak and a cochlear implant at times.
Hi Kevin003, I really appreciate your reply. The more I learn about this disease the more I am inspired by others who persevere through these ungodly symptoms. As a fellow musician I am devastated by the loss of partial hearing in my right ear and fear further deterioration. My ENT says the hearing aid might help with the blocked/stuffed feeling in my right ear so I will try it out. I met with the audiologist yesterday and she is experienced and understanding of my particular problem. We will meet next week to try out the Phonak 90 and experiment with EQ and compression settings. My expectations are low but hopeful. I will update my post here to tell the story. I will do the research on antivirals as you suggested. This forum seems fantastic. So glad I found it. Warmest wishes!
We talked for about an hour. She said we can give it a try and recommended the Phonak 90 because it has 20 EQ bands and a separate Music program (which doesn't constantly alter the hearing aid response) that could possibly help. She understands the complexity of the problem and offers no guarantees. It should be interesting next week. I'll check back in after the visit.
I have a Phillips from Costco ($900.00) in my (good ??) ear only and with out it I can't hear much at all. The guy at Costco told me don't waste money on your bad ear .
Yes I know it has a slim chance of working but I've already paid for the consultation with my audiologist, which includes a trial of the hearing aid, so might as well go for it. Also, if she can find the right settings for the Phonak 90 she will give me all the details so I can go to Costco and get the same hearing aid for much cheaper. I'll let you know how it goes.
Well it's been 4 days since I went for the hearing aid fitting. Now I have a Phonak P90 in my right ear which has moderate low frequency hearing loss. During the fitting we tried a few different settings. Unfortunately there doesn't seem to be any effective way to augment the gain in the lower frequencies so all we could do is fiddle with the curves in the mids and highs. I've never had a hearing aid before so this is all new territory for me. I'm at home most of the time, and for the past few days I have been diligently trying out different settings while watching TV, talking to my wife and listening to music (there is a phone app that comes with the hearing aid that gives tweaking ability to the bass, mids and treble, as well as noise reduction, sound direction, and compression for the various pre-programmed settings). I have found that there are very narrow margins varying between no affect; to an almost imperceptible gain in the highs that does improve intelligibility; and then to an annoying mechanical harshness with a dash of latency. They say it can take some weeks to get comfortable with the sound so I'm reserving judgment as to how this will all play out. It definitely has a bionic man aura to it when I slightly increase the settings and can hear my wife walking in a room on the other side of the house. One positive note is that the hearing aid automatically compensates for loud noises or even those that aren't so loud but can cause discomfort (like plates clanging together or on hard surfaces, etc.). To be honest I need to get out and see how this thing works in a social environment because that's where I really can struggle at times. There is a perfect test coming up on my calendar in 2 weeks, a friend's art opening, complete with a jazz quartet playing in the background in a room/s with probably terrible acoustics. In the meantime I'll go to a coffee shop with my wife and see how that works out. Before I went to the fitting I did as much research as I could about hearing aids and LFHL. I found some interesting videos, this one being probably the most informative . Originally my goal was to alleviate the aural fullness as well as improve the quality of my hearing in my right ear, I hope that I can improve those of course but at this juncture it looks like improving intelligibility is the most attainable goal. Any comments are welcome. I did begin the JOH regimen of Lysine a week ago and will add bioflavonoids this week. I have an appointment with my ENT on Monday and will ask for an antiviral prescription. Thanks for your feedback.
Did you go with Costco ? How much was it ? My basic Phillips was $ 900.00, my guy felt most of the bells and whistles are wasted on Menieres sufferers. They are all "tinny". I have 4 programs in mine, regular, wind, noisy place (isn't everywhere ?) and "meeting" for when they are blue toothing it. I really see no difference in programs, I think it just a "feel good" option. Frankly is real noisy places I take it out sometimes, sounds like shit. I can't take part in most conversations anyway so I'm better not hearing anything in those places. The main thing it's good for is getting phone calls, before my aid I missed too many as I can't hear my phone unless I'm in my truck -even when the volume is full up. I would give away all my hearing for the peace and quiet of no tinnitus.
Yellowboy I read about your hearing aid adventures and that inspired me to try them out as well. I haven’t bought the hearing aid yet, I’m trying it out through my audiologist. If I decide a hearing aid will benefit me I will then go to Costco to try the Kirkland Signature 10.0 (which is basically the Phonak P90) and also go to another provider through my insurance company that offers an even cheaper version of the Phonak (but with fewer bells and whistles – more like the P50). I like that Costco has a long trial period and free adjustments, but the P50 through my insurance is only $450 so that is a major consideration. Looks like I’ll be spending the summer trying this shit out. Costco lists the hearing aids for $1399/pair. I hoping they will sell one aid for half that plus the charger. Is that how you got the Phillips? As you mentioned I don’t think that all the different programs make much difference. I don’t need the Bluetooth for my phone calls because my left ear is still good (I do need it for the app though to adjust the damn thing). At 5 days into this, I can detect only a very small benefit to having the hearing aid (it slightly lessens the muffled feeling in my right ear – which is better than nothing). I’ll know more over the next weeks of experimenting and if I can get used to the sound quality. If it can help in social situations that would be huge. I have tinnitus as well in both ears but for some reason I can mentally screen it out most of the time, but it is always there. The loss of silence can be devastating and I always think about the last scene in The Sound of Metal when he disconnects the cochlear implants just to be relieved of the noise and sit in silence.
Yes one at Costco is half the pair price. This Phillips has good battery life but is just a basic unit. I can never stop thinking about my tinnitus , but it is maddening when the fullness and tinnitus are both high. If I could lower the fullness I think the tinnitus would be tolerable, unfortunately I cannot find a trigger for either - they are random. Good luck with the aid, keep us posted.
When I got my hearing aid almost 5 years ago, it was for my left ear which was being attacked agressively by Meniere's; my right ear was already gone (although I do hear a little from it). I chose the Oticon hearing aid because my hearing aid guy said it seemed to cope better with music. He was so nice to me. I took in my clarinet, and he fiddled around with the hearing aid settings to see if I could hear a scale correctly, etc. One of my programs on my hearing aid was especially for when I played my clarinet. But now I have not played for two years. My pitch distortion is so bad that many times I can't even tell what song is being played. Huey Lewis retired from his music career because of Meniere's. When Meniere's goes to the second ear, sometimes there's a sad ending.
Sounds like you had a caring audiologist for your hearing aid. I'm still on the fence whether to get one or not at this time. I'll know more in a few weeks.
I saw my ENT yesterday after another hearing test. He said I should now consider a cochlear implant as my bad ear is now "useless". I would be interested in hearing from anyone who has had this done. Does it reduce the tinnitus ? He told me in most cases it does.