Hello y'all (I'm in Texas) .. I'm 63 tomorrow. Just received my meneire's diagnosis this morning. Started 14 months ago with my left ear totally dropping out and coming back next day all distorted with low volume with loud intrusive tinnitus and hyperacusis. But no vertigo. 3 months later another attack but this time I get vertigo. Tinnitus has been just brutal since this started. I joined the tinnitustalk forum. I had not quiet connected the dots yet. I went to the VA but they also did not connect the dots. I went 11 months without another attack till 2 weeks ago. Hearing drops out again , twice over a 8 day period with one dizzy spell. This time I connected the dots , went outside the VA to a ENT and got the proper diagnosis. I feel lucky compared to many who have this. Over the past 2 weeks when this last episode started my tinnitus has been down allot running 3 most of the time with spikes to 7 that only last 8 hours or so.. That is far better than the last 14 months of 2 to 3 days in a row of 8 and 9 with 1 down day in between. I hoping it stays the way cause 14 months took a toll as I reclused from going out to stay away from noise. My hearing volume is typical 60 yo musician. The 4 attacks only did minor damage. I'm thankful.. ENT is taking the lipo-flavonoid approach first. Reading allot of info on here , glad to be here.
Welcome GuitarBob. Sorry about your MD. This place can get pretty quiet. But sometimes it picks up. There's some good info on the well known Dr. Hain's site below: http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Welcome Bob. So many musicians have hearing issues. Your symptoms are very much like mine were. What worked for me was antivirals which you can read about here, allergy treatment and time, in that order. I now have normal hearing again. Interestingly, i developed the cochlear hydrops (menieres which does not (yet) include vertigo) at age 59. I dont know if yours is of virla origine or not but my suggestion is you find out if it is asap by trying antivirals. You may have to find a doctor who will work with you on that. Many threads here on the subject. In the mean time, dont aggravate your condition with loud sounds, it just isnt worth it. Good luck!
Hi June and thank you for your reply. I've had herpes for 35 years and I'm highly suspicious that its viral. I already take Acyclovir but only 400mg a day. That's prescribed to me through the VA. Not sure if they will up the dose for MD. They use protocol for everything so I'm doubtful. But at least I have that and will up the dose during my next attack. Last ones were 11 months apart. My new ENT outside the VA system wants to try lipo-flavonoid pills first. I will up that. I've read JOH protocol. And others who had success with anti-fungals and anti-virals. I teach acoustic guitar for a part time living. 3 of my 4 attacks have come several hours after a class, usually when asleep. Trying to find a pattern. For now I have put lessons on hold. After my hyperacusis died down last summer I was teaching with no problems other than a slight spike in T that would last 2 hours or so every now and then. Acoustic guitar runs between 70-75 db. My attacks have also come in the spring and I do have allergies. It's a real puzzle. Noise ? allergy ? viral ? I've noticed allot of protocols are herbs and vitamins with many that thin the blood. I have afib too boot and take a blood thinner so I have to be careful. I am doing vit E now. Probably pass on ginko. I see pine tree bark has had some good results. These forums are a great place to seek info on diseases that medical community struggles with. Thank you for reaching out June.
All of the above. Try to take all kinds of stress off the immune system, allergies, noise/sound, viral assaults etc. There wont probably be an on/off switch that fixes everything all at once. But i can tell you the combination of antivirals and allergy shots fixed me over time. The antivirals seemed to fix tinnitus and the dreaded distortions of all kinds. Over time the allergy shots seemed to bring back hearing loss in the lower registers. I never regained hearing loss above 6000 dcb. I first took antivirals with the advice and cooperation of my family doctor after the specialists had basically said ‘sorry about your luck, maybe a cochlear implant down the road’. She had always suspected virus due to my history of cmv mono and said ‘you know if a mother has cmv, the baby can be born deaf’. She further said ‘if you want to try it, i will prescribe it’. Neither of us was real hopeful but she considered it a relatively benign drug. I took 400 mg of acyclovir 5 tines a day for a month and ditched most of the tinnitus and distortion which were the worst parts. I was sort of stuck at that level of improvmement and then went to dr dereber at House Ear in LA for the rest. Acyclovir has to be spread evenly across the whole day unlike the other antivirals. I think if your case is viral, you will get relief much fast with antivirals than joh though that can be a fall back if the doctors wont help you try it. Good luck! Btw, one dr who was not put off by the viral approach was a va doctor doing a fellowship at my hospital. I believe doctors are well aware of viral assaults to the ear but as soon as the label menieres is put on it, for some strange reason, they dare not call it viral. Sort of strange but many will give it a shot and many people(but certainly not all) here have had great success with it.
Just wanted to say Welcome-sorry you had to be here but there is lots of info like you said.Especially the old forum archives.