It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-31-2011, 03:09 PM   #1
Newbie
(female)
 
Join Date: May 2011
Location: Devon, UK
Posts: 4
beeboo HB User
Not-Meniere's deafness/pressure/tinnitus

Hello everyone this is my first post so please be gentle!

My poor husband is right at the very end of his tether from his not-meniere's symptoms. He was initially diagnosed with Meniere's but after all the testing (water in the ear and all that) he was told it's not meniere's because he has no hearing loss and has been referred for hearing therapy and physiotherapy (his neck muscles are quite stiff - can't quite touch his chin to his chest).

He has been almost deaf in his right ear for 10 days now and the tinnitus is unbearable loud. He describes it as a high pressure water hose noise along with at least two different whistles. He can't hear low tones at all and other sounds are muffled, some sounds hurt. He has a feeling of pressure or fullness in his ear that comes and goes. He has little to no vertigo this time.

This is the longest he has ever had an "attack" and the time between attacks is shortening each time. It's been like this for two years. Each attack is different: during the last one (which lasted a week) he spent a day in bed with top to bottom vertigo (his vertigo had always been left to right before). In between attacks his hearing is normal. During an attack his hearing gets gradually worse and then gradually better. This time it's constantly bad.

He has been prescribed valium and now beta-blockers and neither are helping. He is sad, depressed, angry and tense. He has stopped taking the betahistine on advice of his GP and refuses anti-depressants because the depression symptoms will go once the deafness goes.

Basically the problem is the deafness. He has dealt with tinnitus for many years but the deafness makes everything worse.

Any ideas? Any help? Does any of this sound familiar? Anything we can ask to be tested for? We are quite desperate.

Thank you for reading.

 
Sponsors Lightbulb
   
Old 05-31-2011, 05:28 PM   #2
Member
(female)
 
Join Date: Feb 2011
Location: Massachusetts USA
Posts: 51
leleoh HB User
Re: Not-Meniere's deafness/pressure/tinnitus

I have been trying to solve an issue with my hearing. I had stumbled across SCD. Here is the short description of symptoms from wikipedia:

Superior canal dehiscence (SCD) can affect both hearing and balance, to different extents in different people.
Symptoms of SCDS include:
Autophony - person's own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
Tullio phenomenon - sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
Pulse-synchronous oscillopsia
Hyperacusis - the over-sensitivity to sound
Low-frequency conductive hearing loss
A feeling of fullness in the affected ear
Pulsatile tinnitus
Brain fog
Fatigue
Headache/migraine

It seems it is often thought many sufferers have Meniere's at first.
__________________
Lele, I do not advise landing on your head! It can seriously screw up your hearing! Fell New Year's day 2011, had surgery 5/12/11 to fix the ossicular chain dislocation, I have a new stapes now.

 
The Following User Says Thank You to leleoh For This Useful Post:
beeboo (06-01-2011)
Old 05-31-2011, 10:33 PM   #3
Veteran
(male)
 
Join Date: Dec 2010
Location: San Francisco, CA
Posts: 458
bindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB User
Re: Not-Meniere's deafness/pressure/tinnitus

Meneires does not guarantee the presence of hearing loss during non-symptomatic periods of time.

It sounds like they did the caloric test for the vestibular system, did the test show that he has vestibular damage?

The symptoms fit Meneires disease perfectly, and there arent other possibilities.

Last edited by bindar; 05-31-2011 at 10:34 PM.

 
The Following User Says Thank You to bindar For This Useful Post:
beeboo (06-01-2011)
Old 06-01-2011, 04:32 AM   #4
Newbie
(female)
 
Join Date: May 2011
Location: Devon, UK
Posts: 4
beeboo HB User
Re: Not-Meniere's deafness/pressure/tinnitus

He has some but by no means all of those symptoms but we will mention it to his GP. Thank you.

Quote:
Originally Posted by leleoh View Post
I have been trying to solve an issue with my hearing. I had stumbled across SCD. Here is the short description of symptoms from wikipedia:

Superior canal dehiscence (SCD) can affect both hearing and balance, to different extents in different people.
Symptoms of SCDS include:
Autophony - person's own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
Tullio phenomenon - sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
Pulse-synchronous oscillopsia
Hyperacusis - the over-sensitivity to sound
Low-frequency conductive hearing loss
A feeling of fullness in the affected ear
Pulsatile tinnitus
Brain fog
Fatigue
Headache/migraine

It seems it is often thought many sufferers have Meniere's at first.

 
Old 06-01-2011, 04:44 AM   #5
Newbie
(female)
 
Join Date: May 2011
Location: Devon, UK
Posts: 4
beeboo HB User
Re: Not-Meniere's deafness/pressure/tinnitus

Thank you for your reply.

The test showed no significant vestibular damage.

Having a diagnosis and then having it taken away was quite a blow for him.

I don't know where we turn next.


Quote:
Originally Posted by ichbindarren View Post
Meneires does not guarantee the presence of hearing loss during non-symptomatic periods of time.

It sounds like they did the caloric test for the vestibular system, did the test show that he has vestibular damage?

The symptoms fit Meneires disease perfectly, and there arent other possibilities.

 
Old 06-11-2011, 09:26 AM   #6
Newbie
(female)
 
Join Date: Jun 2011
Location: New York, NY
Posts: 9
Sethwoman HB User
Re: Not-Meniere's deafness/pressure/tinnitus

I can imagine you stress as I am currently been experiencing sudden onset hearing loss and fluctating symptoms. Have things gotten better? Can you give us an update?

 
Old 06-11-2011, 11:22 AM   #7
Newbie
(female)
 
Join Date: May 2011
Location: Devon, UK
Posts: 4
beeboo HB User
Re: Not-Meniere's deafness/pressure/tinnitus

I'm sorry to read about your problem.

It has been over a month now since my husbands latest "attack" started. In the two weeks since I posted the tinnitus has got slightly better/quieter and the pressure in his ear still comes and goes. He hasn't had any vertigo for a while now. Some days he thinks it's getting better; the tinnitus is almost gone and the pressure is less and the following day it's back to square one.

After some research into alternative remedies he is taking a multi-vitamin, gingko and vitamin c and making sure he gets 2L water daily. He is doing exercises for his neck. It remains to be seen if these have any affect.

He is coping much better with the stress of it all, however. He isn't taking any depression/anxiety meds but is finding his own ways to relax. He plays computer games to distract himself. We are walking more so that he is more tired at the end of the day and able to sleep. And at his VERY worst moments he has taken himself off for a hot bath, with music, bubbles, scented candles and (although I absolutely wouldn't, couldn't and shouldn't recommend it) a certain substance that he smkes a (truly) tiny amount of. It's only been bad enough for that 3 times but frankly I would rather he did that once in a blue moon than take daily meds that make him feel detached and slow his speech and reactions.

He goes for physio on monday and hearing therapy the following monday. Hopefully there will be more help there. We are also going to ask for a referral back to the specialist.


Sethwoman, I doubt if any of this has helped you but I do hope you can find answers to your particular problem.


Quote:
Originally Posted by Sethwoman View Post
I can imagine you stress as I am currently been experiencing sudden onset hearing loss and fluctating symptoms. Have things gotten better? Can you give us an update?

 
Old 06-11-2011, 01:03 PM   #8
Newbie
(female)
 
Join Date: Jun 2011
Location: New York, NY
Posts: 9
Sethwoman HB User
Re: Not-Meniere's deafness/pressure/tinnitus

Thanks. Actually it does help because I myself need to find ways to deal with the problem. I live alone and at night I just lay here thinking about the tinnitus and if my hearing is getting worse or better. I'm worried that this will never get better and I will fall into a deep depression, so if I know that other people can see some relief it does give me encouragement. I don't have vertigo, but do have fullness, ringing, and hearing loss in my left ear. One doctor suspects Cochlear hydrops but there is very little information out there regarding quality of life and coping mechanisms.

I hope your husband continues to see some improvement.

 
Old 07-08-2012, 01:17 PM   #9
Newbie
(male)
 
Join Date: Jul 2012
Location: leicester uk
Posts: 2
xcop HB User
Re: Not-Meniere's deafness/pressure/tinnitus

Hi, my first time on this message board. I joined as wanted to comment on this post. since sept 2011 I have had problems with my left ear. started with some sounds which hurt and echoed, kids and womens voices especially, and when listening to phone with that ear it sounded robotic, its like the treble is turned up full whereas the right ear is lovely and bass sounding.
Since this time the problem has developed to fullness /pressure in that ear, ringing and roaring tinnitus and various degrees of deafness.
For past 6 months been under the treatment of a specialist ear doc (luckily i have private health through my old work) By the way I am a 56yrs male retired police officer in the UK - now run my own one-man courier business) and apart from ear I am in good health and have an active lifestyle.
It appears i have cochlear hydrops which is too much fluid pressure in the cochlear part of the ear. this gives all the symptoms of meniers disease apart from dizzyness and nausea (thank goodness!) If fluid pressure is in the inner ear that gives all the symptoms and is the full meniers.
I have been given a low salt and caffeine diet and been given 3 months of diuretic pills which are supposed to reduce the fluid pressure in the ear. I am doubtful about the diagnosis as i cant understand why only one ear affected. however i have tried to stick to the diet and am almost at the end of the 3 months and have appoinment next week.The trouble is the symptoms come and go so irregularly. i seemed to get a few good days then a week or so of bad. I tried to keep a diary to see if i could work out what triggered a bout of bad but it was so irregular. sometimes i had over 2 weeks of bad and would just about give up hoping it would ever go away then it was ok again - usually after a VERY bad couple of days. Anyway about 3 weeks ago i was booked to go on a cruise to the meditteranean. Ear was bad for ages before and i was upset that i would be suffering on holiday, we flew to barcelona and got on the ship. well i relaxed and had about 3 days of sleep. I found the problem was not cured but certainly better and i kidded myself that the slight hum i could hear was the ships engine throb. we were away for 12 nights and they were the best time regarding my ears that i had had for ages, it was bliss. the pressure feeling dropped and i could hear properly again. what a relief - i savoured the feeling as its true you dont appreciate things until you suffer. Anyway we flew home on thursday and i got home to all the usual crap. kids, mother, mother in law,work problems you know the drill. anyway as the stress built up - so did my symptoms ! As soon as i felt that hint of fullness creeping up - i began stressing about that too and sure enough back came the deafness and the tinnitus. i feel now just like i did before i went away. so will be glad to get to doc later and see what he thinks. The trouble is the stress feeds the ear problem and that causes more stress.
To further this theory i find that i can spend hours worrying and fretting about it and the ear is 'roaring' away and i am feeling miserable and depressed - even when i am trying to concentrate on something else like watching the tv but it does not help - THEN something unexpected happens - the door bell goes and a neighbour calls to ask if i can feed the cat - i chat to him about the holiday - we chat for half an hour about all sorts of stuff and then he goes off and i go back to the tv. i then think about my poor ears again and suffer suffer suffer again, BUT then I think - I did not suffer at all when i was talking to the neighbour because i was not thinking about my ears as i was too busy chatting ! I think its a bit like the trouble I get with eye 'floaters', Bits of debris in the eye fluid that nearly everyone has but you have to ignore as there is nothing they can do and they are not serious. Trouble is when you do start seeing them you cannot stop seeing them all over the place and it can get very depressing. You really do have to train yourself to ignore them, and its easy if you are occupied with something else. When I was a police officer - some days i would start fretting about my eyes and seeing spots all over the place. It was because i had nothing to occupy my mind. then suddenly i'd get an emergency call and i would race off to be a hero and save someone 'Ha ha' - anyway i would get so occupied running around that i could spend the next few hours very busy. I would not have any problem with my eyes during that time! yet my eyes were exactly the same - the same debris was there but i just didnt see any of it. of course as soon as i thought about my eyes - back came the spots !!! One advantage about all this worrying about my ears has stopped me worrying about my eyes (lets look on the bright side). Sorry this has been such a long possibly boring story but hope it helps your husband cope a bit. I would like to add that i have found a bit of a secret helper to my symptoms. not a cure but it does help me. I happen to have one of those vibrating back massagers. it is shaped like a hand with a thumb and 4 fingers and runs on 2 small batteries. it is supposed to be for aching back and shoulders. However i have used it before on my head when i had a sinus headache rubbing the vibrating fingers into my scalp and forehead near my nose and eyes. Anyway I thought i would try it on my bad ear and you know what - it does help a lot. i press a finger into my ear and the other fingers and thumb sort of surround the bone bit of the skull around the ear. The buzzing sound drowns out the tinnitus and the vibration through the skull and ear goes right through to even make my teeth and jaw judder. it sort of 'tickles the spot' just right. I have even gone to sleep lying on it between my pillow and my ear. Might be just me but i know you get so desperate you will try just about anything. as i say not a cure but a great relaxant. Suppose i could book another cruise but thats getting expensive! all the best fellow sufferer. Cheers Nick

 
Old 07-08-2012, 01:35 PM   #10
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,994
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Not-Meniere's deafness/pressure/tinnitus

Hope you all have had an MRI, as tumors, usually benign, can occur on the auditory nerve causing these symptoms. As for the hydrops, there is an old time diuretic called Diamox that works well by reducing the formation of inner ear fluid. It keeps the inner ear pressure lower. Something like meclizine may help as well, when vertigo/nausea is present. It is an antihistamine that decreases sensitivity in the inner ear, (used for motion sickness). A stronger such med is Atarax (hydroxyzine) if meclizine doesn't work, but causes drowsiness. I would definitely ask for an MRI and if done already, some Diamox to try.

 
Old 07-08-2012, 03:47 PM   #11
Newbie
(male)
 
Join Date: Jul 2012
Location: leicester uk
Posts: 2
xcop HB User
Re: Not-Meniere's deafness/pressure/tinnitus

yes i had MRI initially - at least that ruled out the more nasty causes. my 3 month supply of tablets are 16mg betahistine hydrochloride ( 3 a day) - i dont know how strong they are in relation to the ones you have just mentioned but they dont seem to have helped much. hopefully they are the 1st try and he might give me something stronger next week

 
Closed Thread

Tags
meniere's, pressure in ear, tinnitus



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:40 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!