Sorry to start two threads in a week, but thought the "atypical" guys might weigh in. Uhhh...again. http://www.menieres.org/forum/index.php/topic,37827.0.htm I started with uni-polar hearing and then I suffered Sudden Sensorineural Hearing Loss ("SSHL") in the "good" ear on February 10. I lost all hearing, but slowly recovered some after two Dexx injections. Neuro-OT diagnosed Cochlear Hydrops and said to go on Diuretic and 1500MG sodium. 8 weeks later after first SSHL attack, I had second SSHL bout and lost most sound and all speech recognition. Hearing recovered after high dose oral steroids (but below old baseline). Doc would suggest higher diuretic if I did not show abnormal kidney and would think about continual lower dose steroids. Today, I got a second opinion from a new Neuro-OT. He said he does not prescribe diuretic and low so without Vertigo. (Yes, reduce sodium, but don't go crazy.) He would have waited the second time before starting the steroid to see how/if I recovered without some. Some caffeine is also OK. He said that each "bout" of the sudden hearing loss is not damaging the hair cells. (The liquid in the inner ear is just not functioning correctly.) I thought that each "bout" killed hair cells and permanently reduced my hearing. My quality of life improves if I can have an occasional spaghetti with meat sauce and diet coke, but I only have only one hearing ear; so, I want to do everything to preserve what I have. Their opinions seem totally opposite. Any views?
I've also heard both sides...some says your ears are getting more and more permanently damaged, and others say there's a chance for recovery. What is confusing to me is that every time after a vertigo attack, I always hear better for a period. So it doesn't seem to make sense that cells have been permanetly damaged. so you do not have vertigo?
I do not have vertigo. Cross your fingers. He said 15%. I thought it was much higher that it would develop.
I have CH too and always wondered if that's a different disease than Meniere's and if the same remedies apply. The jury is out. The fear of vertigo has always hung over my head too. My heart goes out to folks with classic MM. But for what it's worth, the neuroto I went to last week told me that she hasn't seen a case of CH turning to Meniere's and that was somewhat comforting.
I have cochlears hydrops. My hearing has not recovered fully from the loss last year but it is probably 95% there. My neuro-ot said some may get full blown but most prob won't. The prob is you don't know which group you are in. He did the dexa shot. And said low salt at about 1500-2000 mg a day. He said one caffeinated drink per day.and moderate alcohol is all ok unless things worsen. No diuretic. I also did parts of JOH staring last fall. I am definitely not as careful with the salt as when I was first diagnosed but I can absolutely tell when I go over. I also get some distortions and fullness sometimes around my monthly cycle when I am more inclined to be "bloated." Or when I have a cold or my allergies act up. I have noticed recently that my tinnitus is gone.
good news that your tinnitus is gone! i think that's the hardest thing to get rid of right? almost impossible really. can someone tell me what's the difference between cochlear hydrops and meniere's? its not the same??
http://www.californiaearinstitute.com/ear-disorders-endolymphatic-hydrops-ear-institute-bay-area.php "The symptoms of endolymphatic hydrops include the feeling of pressure or fullness in the ears, hearing loss, tinnitus, (ringing in the ears), hearing loss, and balance problems. Individuals who have Meniere’s disease have a very severe form of endolymphatic hydrops, but individuals with endolymphatic hydrops do not always progress to Meniere’s disease."
Bubba: I have no vertigo. Theory is the fluid is disturbed just in the cochlear as opposed to the inner ear using the balance. So, I keep losing my hearing. Thus, the "perhaps" different treatment.
I was dx with atypical Meniere's (CH) in 1998, but I had symptoms going back probably 15 years before that. At first, doctors told me that lo-so, diurectics and steroids were the only treatment options. A few told me that the disease was progressive and destructive, and that, yes, the longer I let the episodes of hearing loss go, the more opportunity for permanent damage. My episodes used to last for about five days and I'd go years between. In 2011, I had an episode that lasted six weeks. In 2012/2013 I had one that lasted five months. It was during this time that I saw a doctor at UNC in North Carolina. He was the first to tell me that my symptoms were completely unrelated to my diet (which I had long suspected) and that diuretics were useless. I know that some people here will disagree, but they never once did anything for me. I had my first vertigo attack this past November and wonder if I've gone bilateral. I probably won't ever know, because I'm already deaf in my left ear.
Thanks Shartsoe. At least this new doc is not the only one. Do you mean you would have no distortion/Morse Code hearing during the remission?
Until 2011 I had no symptoms whatsoever between episodes. In 2011 tinnitus made itself a permanent house guest. But that's because, for the first time, I also suffered a permanent drop in both the high and low ranges. In the 12/13 episode, I lost another small chunk. A CI in my left (deaf from birth) ear was unsuccessful so I am not thrilled with my prospects for future CI candidacy.
Sorry about the CI. I am have only one ear as well; so, maintaining the one as best I can is the course I need to take. I am not sure diuretic and very low-so is the way to go. I think part of the "disease" is changes/fluctuations to the liquid in the inner ear. By trying to maintain 1500mg evenly throughout the day, small changes will cause fluctuations. For example, a 500 mg lunch is 30% of the days sodium. What if you do 800 that meal? You are 20% over temporarilly, but much with a much bigger mid-day surge (i.e. 60%). If you are doing 2000 mg, the "fluctuation" percentage is much less.? Frankly, eating a healthy diet and not trying to be perfect seems healthier. But what do I know?
Well my head is spinning between the steroids, hearing loss, conflicting treatments and stress. In seriousness, no dizziness. I would say my balance worsened.
I have CH, and was given a pretty grim prognosis by my ENT - I had waited about 4 weeks before I went in. At the time I had about 60db loss in the low frequency range. She recommended low salt, and caffeine / alcohol elimination. Steroids (oral) helped a little - I recovered about half of my hearing. After starting the JOH and valcyclovir under Dr. Gasek's care I recovered 100% of my hearing and haven't had any symptoms to speak of in almost 6 months. I had persistent hearing loss for 3.5 months before recovering my hearing fully, so you can't say with certainty that a sustained period of hearing loss means permanent hearing loss.
i know I have read before Angry Chicken, but how long were you on the AV before you had noticeable improvement?
I did very low-so as well as avoiding caffeine and alcohol for a sustained period without noticing any difference at all - that was before I was on AVs. Now I am on AVs and JOH without any dietary restrictions at all. I do eat pretty healthy, however. The first time I tried AVs (on my own from an old bottle that I had at home) my symptoms had been fluctuating, but my hearing was consistently poor with constant distortion etc. After 3 days on a relatively low dose (1500mg / day) I noticed my hearing improve to the point that I couldn't tell the difference between my ears. I noticed that I could hear the wind in my bad ear - hadn't heard that in 3.5 months. I ran out of AVs and was off of them for a while - my symptoms returned. When I got on Dr. Gasek's regimen I had crazy symptoms for 9 days, then I got complete relief and haven't had symptoms since (other than occasional pressure in my affected ear - but much less than the "fullness" that I had before). My hearing was confirmed as normal range in my bad ear about a month after starting on Dr. Gasek's regimen.
