Is it Meniere's? Doctors cant agree. Help!
Posted , 4 users are following.
In late January i woke up hearing like I was wearing ear muffs. All sounds were muffled like i was underwater when being spoken to. I had ringing, pain, fullness in both ears. No vertigo. I went to an ENT who gave me an anti-biotic and said it was a sinus infection with ETD and sent me home. No hearing test, No steroids. About a week later i went to another ENT and he gave me a medrol 4mg dose pack. By then, the hearing was feeling better, but the tinnitus and the pain continued. The pain in my ears was so bad i couldn’t sleep on them at night. I had all the standard tests including, MRI, CT, Autoimmune etc all negative. My hearing test about a week after i finished the dose pack was normal in right ear and only a small notch in the left at 4K (35db). My tinnitus continued. I went to another ENT who said the Steroids were not strong enough and gave me 20mg prednisone with taper for 3 weeks plus we did three injections of the left ear. After the first couple days on steroids i started have speech distortion. I would hear certain letters scratchy, primarily the letter S. My ENT had no good explanation. The tinnitus came down significantly, gone in right ear and 95% gone in the left. one month after finishing treatment i had another hearing test and was told it was the same and therefore stable, thus no further treatment was necessary. I continued to have daily fullness, pain, and itching in both ears at variable intensities, and tinnitus in the left also at variable levels. No low tone tinnitus. On June 1 i had a relapse. My left ear suddenly got a very high tinnitus with a lot more fullness. My hearing also dropped. I could tell because i could hear about 25% less in the left ear when speaking on the phone. The next day i went to my ENT and he gave me a medrol 4mg dose pack and within 24hrs the hearing was better and back to normal in a couple days. He did an in office hearing test and I had lost the 2K frequncy down to 50db from 10db. The 3k and 4k were only down 10dbs, all others same. He wouldn’t say its Meniers but did say this would continue to happen and eventually my hearing loss would be permanent. He put me on a low salt diet with the usual no caffeine, alcohol, chocolate. I went to a top expert in the area and he said it wasn’t meniers. Couldn’t give me a diagnosis though. He said the first attack was most likely a virus and the second attack was "wierd". One other ENT said it might be cochlear hydrops. So here’s my issue. I have had no vertigo, no low frequency hearing loss, and my understanding is that Meniers to appear at the first attack bilateraly is very rare. I would love to hear anyone’s thoughts.
0 likes, 8 replies
tanney SD1976
Posted
Wow, that's quite a story SD. The classic symptoms of Meniere's Disease are:
1. vertigo that lasts at least 20 minutes and comes on unexpectedly.
2. hearing loss in low decible range in affected ear
3. fullness and sound distortion in affected ear
4. tinnitus either continuous or pulsatile in affected ear.
5. MD almost always initially affects one ear not both.
I have had MD for 40 years in my left ear. Last August it developed in my right ear.
Since you have not had vertigo and do not have low frequency hearing loss and you have problems with both ears, it appears that you do NOT have the classic symptoms of MD and most likely do not have MD. Certainly there are possible exceptions to the rules and you may be one of them but your symptoms appear to be pointing elsewhere. You mentioned that you can not lay on your ears do to the pain and that there is itchy feeling in the ears.....does the pain in your ears feel like it's coming from INSIDE your ears or from the OUTSIDE?
SD1976 tanney
Posted
Thank you so much for your reply. The pain started out like someone was stabbing me in the ears but has subsided considerably. The fullness continues primarily in my right ear, maybe because I didn’t have injections in that ear. I have pain outside the ear as well. The ear itself hurts and the behind my ear where its connected to the skull also hurts. Any further thoughts would be appreciated.
tanney SD1976
Posted
because you mentioned that pain was in the ear canal and the external ear has your doctor ruled out Swimmer's Ear which is an infection in those areas brought on by bacteria entering the ear canal and setterling in a skin tear? It's a long shot but if it is SE it can be easily cured via antibacterial ear drop (Cipro) and a few days on prednisone to reduce swelling in the ear canal which would improve hearing, etc.
SD1976 tanney
Posted
i have been to multiple ENTs. I would have thought one of them would have mentioned it after looking in my ear?
eleftherio33095 SD1976
Posted
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
SD1976 eleftherio33095
Posted
The doctor is at the House Ear Clinic in Los Angeles. I don't feel comfortable giving their name. Do you have any thoughts on my condition?
SD1976 eleftherio33095
Posted
aj2017 SD1976
Posted
Hi there,
I have the exact same symptoms as you, except I also have the vertigo. I was told it was fluid in the ears, a sinius infection, possibly Miniere's, TMJ, and migraine associated vertigo. I am here because I see a lot of people on this forum have some of the same symptoms as I do and I am trying to find a solution and/or relief from the itchy ears and pressure in the ears. I will continue to watch the answers that you receive in hopes that the information may benefit me as well.
Take care!
AJ