On my way home from a glaucoma test on August 3 last year, something in my left ear seemed to "pop" which caused a wooshing sound, distorted hearing, and an echoing of higher pitched sounds (violin, whistling). Later, in a hearing test, I found that much of my low frequency hearing disappeared from that ear. I make my living as a musician, and this really was a scary experience. A few days after this happened I had to leave the country to tour and struggled to play well and not let anyone know there was a problem. When I returned 3 weeks later I saw an ENT and he told me I had Cochlear Hydrops, told me to avoid salt and put me on a diuretic and a steroid, wait 6 weeks and come back. Nothing changed. Next visit he sent me to get an MRI (came back normal), and suggested I see a neurotologist. I visited one in Dallas who was happy to let me try antivirals. Did that for a month and 1/2 or so. Nothing. Tried the JOH regiment. Serc (the neurotologist gave me a small dose compared to what I've read others are taking here). Fasted for several days. Blair chiropractic (though to be fair, I went 6 times or so and it didn't seem to be doing a thing, though I did like it and will continue when I can). A couple of other notes: 1. My hearing loss is not fluctuating. It's been basically the same for 9 months. Low frequency hearing loss, and a wooshing tinnitus sound. Nothing I do seems to touch it much. 2. I am so thankful that I'm not dealing with any dizziness or other problems that many others have. I pray for people suffering from that. So, as I indicated in the subject, I'm running out of ideas, and it doesn't seem like the doctors I've been able to visit have a great idea of what's going on either. Frankly, I'm not even sure I have the right diagnosis, because it seems that most people have good/bad days. So I'm writing for any "next steps" someone might have for me to try (I've been considering visiting an acupuncturist to be doing something). As it's starting more and more to look like I may have this the rest of my life, I'd love to do what I can... I've really appreciated the information and support found here, and thank anyone for any thoughts. Andy
I have cohclear hydrops. Antivirals and allergy treatment restored my hearing. The antivirals worked fast weeks to months, the allergy treatment was slow but long term. I urge you to try antivirals asap. It can also stop the progression from ch to classic menieres (vertigo). Good luck.
I started with just 'hydrops' but mine developed to meniere's when the vertigo began. I do hope yours does not do that. You have alot of help here on this board--so please keep us informed and look here for support and understanding.
I am so sorry that you are going through this. The starting with a "pop" made me wonder if you might have a perilymph fistula: http://american-hearing.org/disorders/perilymph-fistula/#whatis. I don't know much about that condition because I don't have it myself, but it came to mind, so I thought I'd mention it in case it helps. I also wonder about the lack of fluctuating hearing loss. My hearing loss definitely fluctuates, but I don't know how universal that is. I am also fortunate to have little vertigo from Menieres (though I do get it from Migraine Associated Vertigo and BPPV sometimes), so my Menieres (that's what my doctor calls it) is more like what you and June are calling Cochlear Hydrops. Anti-viral medication helped me very much--it reversed some of the hearing loss, made my tinnitus much mellower, and helped my ear clear better. It also reduced my dizziness and left me with more energy. I believe the JOH components I take have helped too. I am on most, but not all, of the JOH. I have not taken the Serc.
I have cochlear hydrops and I have tried NUCCU, serc (48mg/day), diuretics, MRI scan and NOTHING worked. I had been on less than 300 mg of sodium for the past month, loss 10+ lbs in a month and it is just not working neither. The intense pressure and tinnitus in my ear drove me crazy and made me extremely depressed then I stumbled across this website and saw many people suggested antiviral. Found myself a doctor who was willing to experiment with me and I've been taking antiviral for 4 weeks now (Valtrex, 3000 mg/day to be exact) and the aural fullness just suddenly disappeared on the 3rd week. Week 1 on antiviral- Nothing change. Still have good/bad days while the bad days lasted 4 to 5 days out of the week Week 2 on antiviral - Symptoms worsen. I felt there were more pressure in my ear and head and lasted longer. At that point, I was feeling really depressed and hopeless thinking that the antiviral just isn't working for me. Got some encouragement from our fellow members in this forum telling me to keep taking as many people experience worsen symptoms before getting better and 2 week on antiviral is just too short of time for the meds to start working. Week 3 on antiviral - Had a really bad day on Monday and Tuesday and BAM on Wednesday when I woke up, the aural fullness suddenly disappeared!! and my ear has been "behaving well" since then! I have never gone this long without a clear ear. The tinnitus is also getting more and more mellower. I highly recommend taking the antiviral and see it helps!
Hi Andy, I started out my Meniere's disease with the low frequency hearing loss and the ringing, roaring, hissing whatever it wanted to do about 5 years before the vertigo came. The ENT referred me to an otolarynologist after 5 years, the OTO recommended the Meniett Device immediately. I did not pursue it, then the Vertigo Started! Yikes! He also recommended this site, Meniere's.org, I tried the acyclovir and JOH regime, I was already on a diuretic for 5 years, the vertigo did not go away, I went on the Cure your headache diet, and because I needed to keep my job, I called the otolarynologist and he wrote a prescription for the Meniett Device. It has worked for me, no vertigo since Dec. 30, 2015, I continued with the acyclovir until a month ago, I still continue on JOH regime, but have now added the Lauricidin instead of the Lysine. Taking supplements with meals is easier for me to remember than between meals. I saw the audiologist 3 weeks ago and my hearing has improved. Not Cured, but managing this disease! I followed the Cure your headache recommendations for 4 months while using the Meniett device, then introduced everything back into my diet, even coffee. I still have fluctuating hearing loss, but more good days of hearing than bad days. I did get hearing aides 5 years ago, still use them, but there are some days I have to turn them down, or even take one out! Remember, there is no cure, but keep trying to see what works for you. I have heard there is another device that is much less expensive then the Meniett Device but works the same way, but I do not have that information.