Atypical Meniere's Diagnosis — Is This My New Reality. I Can't Take It.

[LongislandGuy]

I have atypical Meniere's Dx. Meaning, I have tinnitus, fullness, hyperacusis and autophony (hearing myself speak). I DO NOT HAVE vertigo.

Duration of the this problem almost one year.

MRI, blood work are all normal.

I have seen 2 ENTs and 2 Neurotologists.

I have tried:

-Zyrtec

-Neomycin ear drops

-Amoxicillin

-Ginkgo biloba

-Sudafed

-Vitamin E

-Warm compression on the ear

-Lipo Flavonoid Plus

-Acyclovir

-Prednisone twice

-Diuretic for over 7 months.


I am still getting attacks.


The latest Neurotologist is telling me that I don't have Meniere's Dx. It is either:

1- Eustachian Tube Dysfunction which ear tube would solve the problem 75% of the time.
Tympanostomy should be done


2- Otic Migraine: is also know as Vestibular migraine. According to the Johns' Hopkins Medicine guide "Vestibular Migraine," conditions which may be confused with otic migraines include a series of small strokes, Meniere's Disease. The triggers for the otic migraine are largely food related. Red wine and dried fruit with sulfates are major migraine triggers. Foods with large amounts of caffeine such as coffee and soda must be avoided, as well as monosodium glutamate (MSG), a common component in Chinese food. Otic migraines can also be caused by too much salt in the diet, low blood sugar or a lack of sleep

I am now on a Migraine diet to avoid trigger that cause my attack.

3-TMJ (temporomandibular joint syndrome) I will need to get a face massage done.



I got the tympanostomy done and it was hell. The results were disastrous. I immediately had a major reduction in my ability to hear. Bass sounds were gone and low level ambient sounds were also gone. In fact my ears felt more plugged than ever and everything sounded like I was under water. Having conversations was a chore as people had to repeat themselves to me. My own voice sounded like I was hearing myself with a bad cold and not like it was coming in through the air. Sounds like I'm underwater. When I speak, I can only hear my voice in my head, as it does when you put your fingers in both ears to speak. I cannot hear my voice 'from the outside'. Feels like my right ear is completely plugged! Everything was muffled



IS THIS MY NEW REALITY? I am at the end of my ropes. Sometimes I do want to kill myself. I don't know if i can deal with this for the rest of my life. I want to be normal again. Please God help me or someone. I am having an attack right now while I am writing this.

 

[Scared111]

how long ago was it done? did you talk to your doc about this? maybe it takes some time to heal? did anything get better with the surgery? the tinnitus? fullness? anything?
this sounds tough. Maybe get a second opinion by a doc to see if it's part of the healing process? wish u luck!

 

[Jkph75]

I have these symptoms and it has been going on for a year for me too. I've tried all of those things too and the only one that has worked was Prednisone. Now I'm on a high dose but it's not doing anything. I'm going to get a hearing aid. I hope it gives some relief. Drs don't seem able to diagnose anything that isn't a text book example. Which one of those things do you think is wrong with you? Trust your gut and don't get any procedures done unless you are pretty sure that they will help.

 

[lymebite]

@LongislandGuy

Have you considered trying the John of Ohio regimen?

http://www.zoominternet.net/~kcshop/JOH.PDF

 

[PaulBe]

Atypical Meniere's? He may mean Cochlear Hydrops. if its atypical it isn't Meniere's by definition. Meniere's is a criteria-based diagnosis.

 

[glynis]

@LongislandGuy,
If your having some hydrops symptoms similar to Menieres you could try the following medication.
Proclorperazine, Betahistine or high dose Cinnarazine 15mg tablets.
Some can be taken together so have a chat with your doctor.

Keep pushing till you have a correct diagnosis or on a medication that helps you.
Injections in to the ears can be done with steroid but gent injections will destroy your middle ear function.

Love glynis

 

[LongislandGuy]

The Neurotologist doesn't think it is Meniere's Dx. I am still suffering with the procedure she did.

 

[PaulBe]

The Neurotologist doesn't think it is Meniere's Dx. I am still suffering with the procedure she did.

Why did she do it?

 

[LongislandGuy]

Like i wrote above she think it might be three things....she is the expert...not me. and she did a tympanostomy

 

[PaulBe]

I'm struggling from that to see a good reason for an invasive procedure. OK, Meniere's is often characterized by obvious inflammation within the middle ear tissue on the rare occasion someone needs to look in there so maybe she was looking to exclude it, but as for the other things?

Was she doing it as a therapeutic procedure or a diagnostic one? Just seems all a bit overkill.

 

[LongislandGuy]

She is trying to find out what is causing the tinnitus, fullness and echo.

She thought it was Eustachian Tube Dysfunction hense...she did a Tympanostomy .

Now we know it isn't ETD

 

[brownbear]

Have you had a CT scan of the temporal bones to look for the rare possibility of superior semicircular canal dehiscence? Might be worth doing. I'm an otologist and have had some success with treating sscd. Are you able to hear your eyes moving? Does loud sound ever make you feel dizzy?

 

[LongislandGuy]

Loud sound doesn't make me dizzy. I don't hear my eyes moving.

 

[brownbear]

Fair enough. Is the autophony quite persistent? Do you feel "foggy headed" as some people describe things? Is your hearing ok?

As with most things it might depend how far you want to persue it but I would proabably get a CT.(mri won't rule it out). There are surgical options for sscd.

 

[PaulBe]

There are surgical options for sscd.

How much SSCD goes un-diagnosed simply because most Medicos don't know to rule it in or out?

 

[brownbear]

The problem with sscd is that it certainly also exists as a coincidental finding in patients with no symptoms. Therefore attributing symptoms to sscd, especially when there is wide overlap in symptomatology with other more common conditions, is difficult. Personally I would never just treat a scan. The symptoms need to fit, scan findings need to be there and I would also always request VEMPs.

 

[Blue28]

@LongislandGuy, i sympathise. I have been having the same symptoms as you for a year now following an acoustic trauma. I still don't have a diagnosis. The only thing that I have found to even remotely help is prednisone...but it's not something I want to take long term.

 

[LongislandGuy]

Hearing is OK.
The low sodium diet and water pill hasn't really help. I still get attack.
This is why she think it isn't Meniere's Dx or Cochlear Hydrops.

Thank you Blue28. The first round of prednisone did help...the second round didn't.

I don't even think the mirgrane diet or even the Meniere's Dx diet even help. I have lost so much weight. I write on my Meniere's Dx Symptom Trigger Tool. I don't see any pattern

 

[LongislandGuy]

Today it is so bad....i want to want to take me. This is so unbearable. Everytime i have an attack ...i wonder if this will be with me forever.......and never leave

 

[glynis]

@LongislandGuy ,
Go to your emergancy care AnE,
Don't suffer and go get help.

Love glynis

 

[LongislandGuy]

ER won't do anything........
I have tried everything

 

[glynis]

Have you tried out of hours doctors?
Samaritans?

Love glynis

 

[Jkph75]

@LongislandGuy
What are your attacks like?

 

[PaulBe]

ER won't do anything........

They aren't much help. I got told that it was "just the kind of thing that happens at your age" as I was being shown the door.

 

[LongislandGuy]

innitus, fullness, hyperacusis and autophony (hearing myself speak).

I tried Naprosyn for the first time and it helped

 

[LongislandGuy]

when you get a cut in your skin. Aside from the pain, you have a tear, breaking up the skin. It will heal. Eardrums generally heal within two months (A torn (perforated) eardrum will usually heal by itself within 6-8 weeks)

To me...that seem like a long time... I can hear my own voice rumbling in my own head too much, low bass sounds don't sound right, etc. People going through this temporary but awful experience know how it feels & how the time seems to drag

 

[glynis]

Keep your ear dry if got a perforated ear drum...
Love glynis

 

[LongislandGuy]

thank you

 

[LongislandGuy]

It 3 weeks since the tubes where take out. I still have the echo and pressure difference...it is better..but still there. I developed an atrocious low frequency humming / vibration sounds in my right ear. The only things I can attempt to compare it to would be the sound when you are inside a building and someone drives by with very loud bass in their car. Or, I could sometimes describe it as a car running off in the distance, or someone strumming a low frequency note on a bass guitar. It's devastating affect on my mood and sleep. A low-frequency loud roaring sound. the noise feels like it has a throbbing pulse

low-pitched vibrating type of sound,I find that it increases when I lie on my bed - especially when I put my ears against my pillow. This makes sleeping really uncomfortable and makes me really anxious and self-aware the whole night, and I am really distressed by it. Has anyone suffered from the same thing? Does anyone have any advice?

One way I would describe it is perhaps machinery running continuously in the distance, or the rumble of a loud car exhausted in the street. I can almost 'feel' the sound in my head, its so unnerving at times especially at the moment as its been pretty bad for a few days now. I also find that sometimes it can just go away, often for a few days and then it will be back. I simply cannot understand it,

 

[PaulBe]

I can almost 'feel' the sound in my head, its so unnerving at times

I'm with you on that.