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Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/2/2010 9:21 AM (GMT -7)   
Hi, just wanted to say I got a hearing test yesterday (not just a 10-minute screening, like I've had before) and it was very interesting.  This was at Miracle Ear and it took almost 2 hours.  The tester said she doesn't think I have Meniere's, because I don't have bad dizzy spells...I am dizzy alot, can't ride a bike or swing on a swing or look out the window in a moving vehicle, but I've never had the really extreme episodes where you vomit and can't get off the floor, like I've heard about
 
An ENT doctor told me about 20 years ago that the only thing that causes low-frequency hearing loss (which I do have) is Meniere's, so I must have it, just a mild case.  So all these years, I've worried that it would get worse.  Well, maybe not!! cool  
 
Of course, there's still the problem of the hearing aid - affording it and getting one that doesn't drive me crazy.  I was going to try out the tester for a few days, but it was so uncomfortable I had to take it out!  When she showed me what it looked like, I couldn't believe it.  It felt like a big, sharp object was sticking way down in my ear, but it was just little plastic knob!  She said she'd never had anyone who said that.  rolleyes I blamed it on fibro, which I think is accurate.)  Anyway, we're going to try a smaller one when it comes in, or maybe I'll have to have one custom-made.
 
I just wondered if anyone else has any knowledge about this?  She said in 9 years of doing this, she's only seen about 6 cases of reverse, or low-frequency, loss.  I know you have Meniere's, Donna.  You must have those awful spells, then?
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 5/2/2010 9:46 AM (GMT -7)   
I don't have Meniere's but I do have a severe hearing loss.  Mine is high frequencies...I'm profoundly deaf in those.  I do wear two hearing aids and one of them drives me batty.  My ear itches and now I'm having some problems with the skin inside the canal.  As Roseanne Roseannadanna used to say, "It's always something!"
 
I will get dizzy if I look up.  I almost fall over when I am trying to turn off my ceiling fans.  I don't get on ladders anymore and step stools either, unless I have something to hang on to.  I never used to have a problem with dizziness.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 5/2/2010 10:36 AM (GMT -7)   

Hi Achey!  I was dx'd with Meniere's in my mid twenties...my father had it, my grandfather and we think one of my son's has it now although he has never had the testing, just some of the symptoms.  Yes, I have the whirling vertigo that can last for a few hours or a few days.  The longest episode I ever had was a week.  Salt and MSG will trigger an attack almost immeditaley.  I'm talking very salty restaurant food or canned soups and other proceesed foods with nitrates.  Bacon willl bring me to my knees.  I also have 'spells' with some visual triggers...like Austen does.  Driving along a road where the sunlight flickers through the trees...watching a movie with a lot of movement.  I have never vomited...knock on wood, but I do sit still with a waste basket near me 'just in case'.

I may be wrong about this but I was told that the deafness caused from this disease cannot be helped with a hearing aid because the little ciliae actually die off during an attack and these little hairs transmit sound.  I have lost a great deal of my hearing.  Maybe Austen, who has this also can shed better light on the hearing aid thing.  I also have constant ringing in my ears and have to have background noise around me so I don't hear it as much.

Good luck to you and I hope you get some answers.

 

Donna

 


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/2/2010 1:10 PM (GMT -7)   
Thanks, guys, for the replies. Donna, I also have the flickering sunlight and action movie problems, big time. (Wouldn't even TRY Avatar 3D.) One kind of class I have never subbed in is PE because I know the bouncing balls coming from all directions, or just the screaming kids running around the echoey gym would do me in!! (Plus, it takes me forever to understand game rules!) :) What kind of test did you take for Meniere's? I sure don't want to buy a hearing aide if it's not going to do anything. Too bad your son has symptoms too!

Sherrine, how did they diagnose your autoimmune inner ear disease? I know just what you mean about ceiling fans - the fact that they're up high and the fact that they're spinning around make them very tricky. At church, if there's a ceiling fan anywhere in my field of vision, I sometimes have to cover up that field with a paper or something. Of course, I would never remember to bring a hat!

Gilda Radner was such an inspiration! Have you read her book by that name, "It's Always Something"?
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/2/2010 1:12 PM (GMT -7)   
P.S. Sherrine - - sorry about your itchy ears! I had an infection once in my ears and couldn't sleep at all. Can you do anything for it?
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 5/2/2010 1:30 PM (GMT -7)   

I think they can test with an MRI now.  Back when I was dx'd, they did a bunch of things like shoot water and air in my ears, then waited to see how long I recovered from the spinning by watching my eyes.  They also spun me around in a chair in a room with checkered walls then made some observations about recovery time.  The tests aren't so grueling now.  I did not finish the entire round of testing because I got too sick and started barfing.  Because of the family history and all my symptoms, I was just told it was Meniere's.  I take a valium when I feel it coming on.  There is a condition called Benign Positional Vertigo which is the dizziness brought on only by head and eye movement and the symptoms only last a few minutes.  Has your doctor ever mentioned that?

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/2/2010 1:38 PM (GMT -7)   
No, but I will check it out. Thanks much!
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 5/2/2010 2:35 PM (GMT -7)   
Autoimmune Inner Ear Disease (AIED) is very similar to Meniere's.  We have a bilateral hearing loss, have hissing, ringing, etc. in the ears and have some dizziness.  I don't have the dizziness to the extent that Meniere's patients have.  But, I do get dizzy because my inner ear is involved.  I also can eat products with sodium in them.  It doesn't affect me.
 
about 20 years ago I started telling my husband to stop mumbling.  He would tell me to get my ears checked.  We bantered back and forth with this for months.  Finally I was soooo sick of his mumbling that I decided to have a hearing test so I could wave the results in his face and tell him to STOP MUMBLING!  Well, the test showed that I had a hearing loss in one ear and that I should consider a hearing aid. 
 
Humph!  What did this doctor know!!!  He was just a little suburban doctor.  I decided to have my hearing checked at the Cleveland Clinic, since I lived in Cleveland at the time.  I got an appointment for the following month.  When checked, I now needed hearing aids in both ears!  They set up an appointment for the next month and, when checked, my hearing had fallen off a lot more!  I was devastated.
 
I was sent to the specialist there and he put me on megadoses of Prednisone....80 mg a day for one month.  Many times this will stop the progression of the disease.  If it did, I would stay on a low dose to maintain my hearing.  Unfortunately, I was one of the few this didn't help.  Blood work was done, too, and it was determined that I had AIED.
 
I was fitted for hearing aids and, Achey, it brought my hearing back to 96%!  I could hear the birds again and I honestly didn't realize how much sound I was missing.  But, two weeks after getting the aids, I woke up, put the aids in, and couldn't understand what was being said on the television.  Again, I was ticked.  You spend all that money for hearing aids and they break in weeks!  I called my audiologist and she had me come in.  She tested the aids and they were working fine.  She tested my hearing and I had lost nearly all my high sounds...overnight!
 
I got digital hearing aids and they do help with crispness of sound but I do have to lip read.  My low sounds are still good but 96% of speech is made up of high sounds.  I also need closed caption on televisions, barely can use a phone, and can't go to movies.  I saw a specialist here in Tampa who wanted to do the cochlear implant on me.  He said, "It's not IF you get a cochlear implant, but when because you WILL lose all of  your hearing."  I told him that he hadn't factored God in that equation and he smiled and agreed.  That was 11 years ago!  I'm holding my own and am praying for medications or adult stem cell research to help me.
 
Now, you can try hearing aids out before you buy them and I highly suggest you try it.  My hearing loss is extremely similar to Meniere's except  you shouldn't lose yours so fast...if you lose it at all.  But, the difference was amazing.  You do have to decide to wear them.  They were really irritating at first but I wore them anyway.  Usually I don't even know I have them in...except for that itchy ear.  I haven't had it checked out but I will.  I probably have a skin infection because, when they itch, I will stick my finger in my ear to scratch it.  Not too smart but....  Anyway, give it a try.  You don't want to miss the wonderful sounds if at all possible.  Oh, how I would love to hear the birds sing again.......
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 5/2/2010 3:22 PM (GMT -7)   
After reading all your posts, I'll never take my hearing for granted... what a reminder
to be thankful for everything I do have. Wishing you all well!
 
Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 5/2/2010 5:26 PM (GMT -7)   
i just got hearing aids a few weeks ago. they said i was probably born with some of the hearing loss, but that it might have gotten worse over the years. the last full test i had was about ten years ago.

i think mine are digital. they are expensive and the insurance didn't pay for anything, but they help so much. i have never heard so clearly before and now i don't really hear "funny things" anymore. I actually hear what the person said and not something that has nothing to do with it!

mine is a bte (behind the ear) with a small receiver/ microphone going into the ear. right now the receiver is too big and falls out all the time (im getting the smaller size this week), but i don't really notice that they are in my ears anymore

one tip is that if you get hearing aids, you should use the steps (slowing getting to your hearing loss, and not going straight to the loss as soon as you get them). my dr decided to go straight to the loss so it would help me alot in class, and she said that since i was young, it wouldn't take my brain as long to readjust, but i can't wear them when there is alot of noise. since you aren't used to the noise, it can get to be too much

-Aliza
"never regret something that made you smile"

fibro, GERD, IBS, and appendicitis alot of times, finally removed

Meds:

prevacid, zofran, mircogestion , and ultram ER,


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/2/2010 7:20 PM (GMT -7)   
Well, you've all given me some good food for thought. Thank you!
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 5/2/2010 7:29 PM (GMT -7)   
Meniere's is difficult to diagnose, even for ENT's, so I would be hesitant to fully trust the opinion of an audiologist.

There is a something called atypical Meniere's, when only some of the classic symptoms are present. Often, the others develop later. I was diagnosed with this initially because I didn't have the tinnitus or hearing loss. I now have developed both. The tinnitus is intermittent, but the hearing loss (low frequency) is permanent. Like Donna, I was also told by my ENT that a hearing aid won't help Meniere's associated hearing loss. Right now, it is mild, and I hope it will stay that way.

I was diagnosed a few years ago and had some of the same tests as Donna. I, too, had to quit half way through because I couldn't take it. One test that was done was called an ECOG. It wasn't too bad, and my ENT felt that this was the best indicator of Meniere's. Apparently, certain patterns show up in people with Menniere's. I don't know about an MRI. My doc. didn't offer one.

Do you live near a research hospital or near an ENT that treats a lot of Meniere's patients? There are lots of other inner ear disorders that can cause some of the same "yuckies" as Meniere's, including BPPV. You can also have more than one thing going on at a time. I guess I would want a definitive diagnosis before I spent a ton of money on a hearing aid.

Good luck! I hope you get a good diagnosis soon. :-)

Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
 
 
 
 
 
 


luvskermit
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 5/3/2010 11:53 AM (GMT -7)   
Wow, I'm having testing for vertigo on Wednesday. I was excited to see this ! My testing is going to be the whirling and water stuff that vestabula described above. I'm scared out of my mind, but I have to get it done. They have to find out the cause and FIX IT NOW!! lol!

When it first started, I did the vomiting thing. Now I just get that motion-sick feeling. But Friday was a VERY bad day. I cannot take much more.

Does any of this get linked to fibro? I didn't think so.. but???

I'm sorry for anyone that feels this way, but I do feel a bit better knowing I"m not alone. :)

luvskermit
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 5/3/2010 11:59 AM (GMT -7)   
I also want to add that one of my biggest fears is to lose my hearing. :( I've already lost one ear to nerve deafness in childhood (thanks, measles) and I'm VERY concerned now that tinnitus is present. Am going to hope for the best!!

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 5/3/2010 9:07 PM (GMT -7)   
cry  Wow, I don't think I could take that whirling and water kind of testing!  A little turbulence on a plane about shoots my stomach up through my mouth.  I don't vomit easily (well, I used to when I got severe migraines) but I sure do get nauseous and dizzy easily.  I hope it's not too bad for you, luvskermit!  You are brave...
 
I'm not going to jump into anything.  I'll try the hearing aid though, as long as it's free turn if I can find one that doesn't make me miserable.  I really hate being the most sensitive kid in the class!!! Thanks to everyone who answered this and gave me your wonderful insights - - it means so much!
 
 
  Achey 
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis,   lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.

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