hello again. it has been a little more than five years since I frequented this forum. that was around the time I had a laby in my right side and thought I was through with this crap. hearing test a week ago has my oto thinking M has crossed over to my left. as you can Imagine, very upset and discouraged. when I was first diagnosed almost 15 years ago, my original oto told me that if people go bilateral, it usually happens within the first five years of diagnosis. so apparently I'm great at defying odds. I'm just curious of anyone who is bilateral, how long was it between your original diagnosis and your bilateral diagnosis--assuming, of course, that you weren't originally diagnosed as bilateral. Many thanks and I hope today was a good day. Kevin
Hi Kevin, sorry to hear that. may i know how do you know that you are bilateral? for few months, i felt like my good ear also started to have tinnitus but if I try to focus on the sound, it seems that it came from my bad ear and audiogram shows normal range. does your hearing test showed low frequency loss? did you feel any symptoms like tinnitus/ hearing loss/ vertigo prior to take hearing test? thanks
thanks for the response. I went in because I was hearing strange artifacts: some voices sounded like they were coming out of tubes and loud restaurants were a mess of distorted sound. as a musician, I'm pretty in tune to frequencies and didn't think I was dropping of the low frequencies--audiogram showed otherwise with a clear drop in the low frequencies. thankfully,I don't have any of the other symptoms yet. thanks again, Kevin
You may have cochlear hydrops in the good ear. I believe i went bilateral all at once. Hard to be sure because the 8th nerve on one side had already been severeddue to surgery for another problem. I urge you to try antivirals now at this early stage. It corrected my hearing distortion, tinnitus, returned lost hearing in the low frquencies and stopped the progression to vertigo for me.
Well.... I am sorry to hear it, and wish you the very best. I went bilateral 7 years after my initial diagnosis in 2008. Initial diagnosis of MM in right ear. Aural fullness, spinning vertigo for hours on end, etc. This was initially (mis)treated as an inner ear infection by my PCP, who then referred to an ENT. The first ENT said 50% of cases could expect this, the other 50% could expect a dissipation of symptoms after two years. My symptoms got substantially worse 2 years in. I had multiple episodes of wildly spinning vertigo that went on for hours and spanned several weeks with recurring episodes. I lost 60% of frequency range in the right ear, and my left ear would ring off the hooks with tinnitus constantly. I had to quit my band, we were working 3-4 nights a week doing big clubs, weddings, and the HLSR BBQ cook off every year for the 93Q tent. It was devastating to me, as I have been playing guitar since I was a kid and steel guitar most of my adult life. During the 4-5 years after it hit, I found the John of Ohio’s regimen to be the most effective in knocking down the symptoms. It takes a good long time to become effective, but I stuck with it until I could hear well enough to play music again. I got back into it with a couple of pretty good local bands, playing better clubs and even making it to the Hideout and the Corral Club stages one year at the Rodeo. October, 2015 my good ear went south. Started with a raging tinnitus and some minor vertigo. After my PCP gave me a shot of steroid, I got a long course of Prednisone from my ENT. But hearing tests confirmed loss of low range and higher frequency in what was previously my good ear. Bad ear has been at 50% or more loss since the onset. Had to quit the band, again... but 3 months later, in early 2016, my good ear magically? came back to almost full range. I could hear well enough that I was able to get out and play music again on a lighter schedule - earlier gigs, smaller venues, shorter drives, etc. etc. Everything was going great until 2 weeks ago. After a long weekend of hot and steamy weather and a very long Saturday night when I played on 2 shows back to back first with the opening act and then the headliner, and I then went mostly without sleep for all of Sunday my good ear started ringing again, and then Monday morning I started hearing the low end distortion and garbling of all sounds. After a disastrous outing on the 13th when I had to play by sight and feel, with a mad cacophony of distortion and wildly fluctuating pitch onstage, I finally got an appointment with a new ENT. I am now on another long course of Prednisone, just 5 days in. Some of the distortion is gone, but... I can't hear anything clearly but single voices, and only then when I am right in front of them and looking directly at them. My steel guitar sounds like a chain saw cutting through cement and rocks even at low volume... i.e. not the least bit like a steel guitar. Over the last 10 years now, I have struggled to find relief with Betahistine, Anti Virals, Diuretic, diet, etc. etc. It is maddening and completely demoralizing, and nothing seems to help - except - the John of Ohio's regimen. For me, this has been the most effective approach in knocking down the symptoms - but only IF I STICK WITH IT DILIGENTLY and watch my sodium, alcohol, and caffeine and get plenty of rest. Whenever I fall off this approach, and if I should ever get dehydrated, then I find I can expect a swift recurrence of symptoms. I fell off the regimen earlier this year when it felt like I had almost gotten over it, except for the tinnitus. I could hear well enough, the tinnitus was not as severe, and I felt good almost all the time. No dizzyness, no brain fog, and no inflammation noticable. So... I cut back on the supplments and then it comes back.... The John of Ohio's regimen has worked for me - I am back on it and ramping up again to full dosages this week. I am only hoping that I haven't damaged my hearing such that I cannot play again. It will likely be several months before I see any sort of improvement. In the meantime, best wishes to all...
Thanks all, I appreciate the thoughtful responses. I go back to my oto on Aug 3rd and will beg for antivirals--they don't have a great track record of prescribing them, which I really can't wrap my head around as a relatively safe medication that possibly could help bring relief...boggles the mind. My diagnosis on the now dead ear was endolymphatic hydrops and I guess I'm not too sure of the difference between that and cochlear hydrops, but i'll research. Steeler, sorry to hear about your struggle. I have played guitar for 36 years, but haven' played in bands since my diagnosis almost 15 years ago. I relegated myself to writing and recording when I could actually discern pitches to play well enough. After the laby 5 years ago, I was back in fighting shape with the exception that I didn't have stereo hearing--no biggie because the distortion was gone and I could discern pitch again--bliss. That all changed with this recent occurrence in my good ear. Some guitar notes actually sound like 80s tubular chimey synthesizers with no difference in pitch between adjacent notes. Oto gave me a 10-day course of prednisone along with betahistine--not seeing any difference in hearing after 8 days. Hopefully JOH continues working for you...I never had any luck with it. Thanks again, Kevin
Hey Kevin, So sorry that this has happened to you. Being a musician makes it suck even more. I started about 10 years ago with my right ear. This past year my left ear has started to die on me. Like you I did the steroids and it seemed like it actually got worse. I am now doing acupuncture which seemed to make a difference in the beginning buy it hasn't changed much now. I have a couple of more treatments to go. My ent told me last year that I was bilateral when I was having some balance issues. Saw him a couple of months ago and he says I basically have no balance system left. The good news,if there is any is that I shouldn't have to worry about vertigo. I just retired this past June but am still working at my own Pilates studio. I am an old dancer and have done and still do vestibular therapy. My ent gave me a referral to the Cochlear implant people.I am waiting to talk to them. I saw there is a newer version without all the wires and big ear piece. Everything is in the unit that is attached to your head.People on Facebook rave about it. There is hope but this really sucks I know. Good Luck!
Tell them how successful the antivirals have been for you and how grateful you are! Everyone likes to hear something they did was successful.
Going back for follow-up today with the new ENT. I expect he will confirm (again) the bi-lateral diagnosis, despite the sudden flare-up after last 2+ years of apparent remission in the left side. I am going to ask that we try an anti-viral/anti-herpes treatment for 3 months or so. In just the last 3 days I am noticing a slight improvement in hearing after the 10-day course of prednisone. I can hear and understand voices (as long as I am looking directly at the person speaking and there is no other ambient noise around), I can distinguish pitch on single notes now, but anything with multiple tones or sources of sound is still distorted and seems out of tune. Sort of like trying to hear through the water from the bottom of the pool, at the deep end. My favorite CD (by a steel guitar legend who also suffers from Meniere's) sounds almost tolerable in my truck at low volume, so definitely an improvement there. I've got an easy gig scheduled for this weekend for a private party at a winery. I am cautiously optimistic about being able to hear well enough to play single note runs on the steel, and maybe even a couple of 2-string phrases. Still ramping up to full dosages of the JOH. I am keeping careful track of diet, sodium, caffeine, etc. etc. Hoping for the best... Cheers and best wishes to all! JMC
Thanks guys! Big fat NO to the anti-virals request. Dr. says there is no evidence that AVs helps with Meniere's Disease specifically. This may or may not be consistent with what has been observed in other cases, he agrees. But he won't give it to me. He says the only thing left he can offer me is an injection of Gentamicin into the left ear... I am little scared about this, to be honest. I am waiting until Monday so I can make it through the weekend w/o having any more stuff to stress over - but Dr. says he has actually recovered hearing for some patients with this treatment, if it is done within 4-6 weeks of the sudden loss. I am just past 3 weeks now, and so I will get the shot on Monday. Also going back for a new MRI to rule out tumors. I had one 11 years ago now, it didn't reveal anything. This will be the most invasive treatment I've had yet - any improvement or otherwise will be noted separately. Thanks again for your support ...
There is no evidence that any drug helps menieres specifically. Ask the family dr, that is who prescribed it for me.
How is it possible that gentamicin, which is toxic to the hair cells, helps to recover hearing? How can you tell whether an improvement in hearing is a result of the injection rather than part of the pattern of random fluctuating hearing? I have heard and read of steroid injections being used in this way, which makes more sense. Have you considered a second opinion prior to this treatment?
Well, this is the 3rd ENT I've been to in 10+ years. All 3 have recommended this treatment at the onset of a flareup. Maybe I've got the Gentamicin part wrong? But it is a direct application of a steroid through the ear drum into the middle ear cavity. To your point though, it seems virtually impossilbe to determine what has made the difference previously. When the symptoms are at the worst, nothing seems to help. When they subside, or even go away as has happened to me twice now, what caused them to go away? JOH? Radical diet change? Stopping any sort of strenusous physical activity for a week or so and taking a long nap every day? Listening to ocean sounds on the stereo? Maybe all of these? It is maddening, frustrating, and completely demoralizing to hear specialists in this specific malady tell me "there is not much we can do... " Anyways, I'll post an update next week if I go through with it... Right now I am wavering a bit, after having seen some images of the actual procedure....
Yes, steroid injections such as dexamethasone make sense and are standard protocol at this stage of treatment. They are not toxic in the way gentamicin, which is a treatment of last resort, is. Time is important, and you should get it done as soon as possible. It may save some of your hearing and slow progression of the disease. Good luck.
Hi Kevin, You and I have unfortunately had similar experiences. I developed Meniere's in my right ear in 2006. By about 2008 my symptoms had settled down and while I had reduced hearing I did not experience any more vertigo spells until late 2011. My vertigo spells started to reoccur and became very frequent and as a result I had surgery to place a shunt in my right ear. That helped initially but the vertigo spells came back with a vengeance. So I had two injections of gentamicin. The combined effect of those injections was to eliminate the vertigo spells. Prior to agreeing to the injections I asked my doctor about the chance of going bilateral. I knew that it was approximately 80%. He agreed with that percentage, but indicated that the involvement of the other ear usually happens within the first two years. Not sure if I would had agreed to the gentamicin if I had know my condition would go bilateral. Unfortunately in my case I went bilateral in late 2014. My hearing in my good ear has gotten progressively worse. In an attempt to maintain my good ear I have exercised a lot, been on a modification of John of Ohio's regiment and watched my salt intake (I do most of the cooking and grill a lot). I do believe that changes in barometric pressure and humidity have a negative impact on my condition. Since I am retired I am looking at relocating to an area with less changes in barometric pressure.
My first presenting of unilateral Meniere's was October 2004. I was diagnosed September 2005. I first presented as bilateral June 2006. I was diagnosed bilateral January 2007.