Meniere's Disease

[Guest guest]

I can't help noticing that there have been numerous post from some of you about

dizziness. My neuro did an ecog test and found out I have Meniere's Disease in

both ears. They suspect it is secondary to the sarcoidosis but all linked.

This is a good site for information about Meniere's

http://www.menieres-disease.ca/index.htm.

Once they found out I have Meniere's they put me on a low salt diet and ran

steroid profusions in both ears. I also had surgery on both ears to relieve the

pressure.

Vertigo is horrific with Meniere's. Has anybody else been diagnosed with

Meniere's? If you are having problems with dizziness, vertigo, nause, ringing

in the ear, trouble hearing or pressure in your ears, you might ask your doctor

for an ECOG test. ENTs or neuros should be able to check this.

Becky in Alabama

[Guest guest]

Thanks Becky,  That's great information, and something to look into.  I don't have too many issues with my ears, but If I were to, it's nice to know this.  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

I can't help noticing that there have been numerous post from some of you about dizziness. My neuro did an ecog test and found out I have Meniere's Disease in both ears. They suspect it is secondary to the sarcoidosis but all linked. This is a good site for information about Meniere's http://www.menieres-disease.ca/index.htm.

Once they found out I have Meniere's they put me on a low salt diet and ran steroid profusions in both ears. I also had surgery on both ears to relieve the pressure.

Vertigo is horrific with Meniere's. Has anybody else been diagnosed with Meniere's? If you are having problems with dizziness, vertigo, nause, ringing in the ear, trouble hearing or pressure in your ears, you might ask your doctor for an ECOG test. ENTs or neuros should be able to check this.

Becky in Alabama

[Guest guest]

Does the dizziness come and go? I'm having debilitating headaches originating in my right ear, and sometimes, all of the sudden, the world seems to take a big swoop to one side and I have to grab onto something to keep from falling down. I tried to make an appointment with my PCP, but he is on vacation and I am loathe to see anyone else at his office.Would it be better to see an ENT doc? I don't need a referral to see a specialist.From:

H. Whitaker To: Neurosarcoidosis Sent: Mon, April 18, 2011 3:37:14 PMSubject: Meniere's Disease

I can't help noticing that there have been numerous post from some of you about dizziness. My neuro did an ecog test and found out I have Meniere's Disease in both ears. They suspect it is secondary to the sarcoidosis but all linked. This is a good site for information about Meniere's http://www.menieres-disease.ca/index.htm.

Once they found out I have Meniere's they put me on a low salt diet and ran steroid profusions in both ears. I also had surgery on both ears to relieve the pressure.

Vertigo is horrific with Meniere's. Has anybody else been diagnosed with Meniere's? If you are having problems with dizziness, vertigo, nause, ringing in the ear, trouble hearing or pressure in your ears, you might ask your doctor for an ECOG test. ENTs or neuros should be able to check this.

Becky in Alabama

[Guest guest]

, I would save time & just call an ENT. Maybe I'm biased because of my experience with the hearing loss & vertigo back in 1999.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: rkelty99@...Date: Tue, 19 Apr 2011 17:09:47 -0700Subject: Re: Meniere's Disease

Does the dizziness come and go? I'm having debilitating headaches originating in my right ear, and sometimes, all of the sudden, the world seems to take a big swoop to one side and I have to grab onto something to keep from falling down. I tried to make an appointment with my PCP, but he is on vacation and I am loathe to see anyone else at his office.

Would it be better to see an ENT doc? I don't need a referral to see a specialist.

To: Neurosarcoidosis Sent: Mon, April 18, 2011 3:37:14 PMSubject: Meniere's Disease

I can't help noticing that there have been numerous post from some of you about dizziness. My neuro did an ecog test and found out I have Meniere's Disease in both ears. They suspect it is secondary to the sarcoidosis but all linked. This is a good site for information about Meniere's http://www.menieres-disease.ca/index.htm. Once they found out I have Meniere's they put me on a low salt diet and ran steroid profusions in both ears. I also had surgery on both ears to relieve the pressure. Vertigo is horrific with Meniere's. Has anybody else been diagnosed with Meniere's? If you are having problems with dizziness, vertigo, nause, ringing in the ear, trouble hearing or pressure in your ears, you might ask your doctor for an ECOG test. ENTs or neuros should be able to check this.Becky in Alabama

[Guest guest]

I forget how to reply to a specific post, but this is in response to the

question.

Yes it comes and goes. It causes headaches, vertigo (dizziness) and you don't

realize it is even your ears causing it most of the time. Ear aches and hearing

loss comes later in the disease course. It too is an autoimmune and frequently

accompanies other autoimmune diseases. When a bad attack comes, it will put you

on the ground fast. You can't raise your head without throwing up or passing

out.

My neurologist did a ecog test and found it then he sent me to an ENT. If you

are having problems with dizziness, have an ENT check for meinere's if your

neuro won't.

For a long time my neuro thought it was part of the damage from the NS, but it

kept getting worse. So he thought the ecog would be worth the effort. It is an

easy test in the office.

>

> I can't help noticing that there have been numerous post from some of you

about dizziness. My neuro did an ecog test and found out I have Meniere's

Disease in both ears. They suspect it is secondary to the sarcoidosis but all

linked. This is a good site for information about Meniere's

http://www.menieres-disease.ca/index.htm.

>

> Once they found out I have Meniere's they put me on a low salt diet and ran

steroid profusions in both ears. I also had surgery on both ears to relieve the

pressure.

>

> Vertigo is horrific with Meniere's. Has anybody else been diagnosed with

Meniere's? If you are having problems with dizziness, vertigo, nause, ringing

in the ear, trouble hearing or pressure in your ears, you might ask your doctor

for an ECOG test. ENTs or neuros should be able to check this.

>

> Becky in Alabama

>

[Guest guest]

I had bilateral mastoidectomies and endophyliac (?) sac decompression after

steroid profusions (1 in each ear). That helped for about 5 years. I take

Lozol (diuretic), decadron daily to control it, and ativan for the drop attacks.

I recently had a series of three bilateral steroid profusions and that has

helped. Evidently these profusions need to be done every 5 years.

I am able to drive again something I could not do for the last year.

Fortunately, the doctor wrote a medical justification for me to telework so I

have been able to keep working. I develop webpages for children for a

government agency so it is easy to do from home.

He has been pushing me to go on disability but I work for insurance.

I still have three lesions from the sarcoids near by brainstem, sarcoid

inflammation in my hands, joints and eyes. But getting the Meniere's diagnosed

and treated helped my situation immensely.

I have also found an amazing technology for joint and muscle pain.

Check it out: http://www.warp-heals.com/applications/pain.html

Sorry for the long reply.

>

> , what treatment if any have you had? Was it helpful?

>

>

> Ramblin' Rose

> Co-owner/Moderator

[Guest guest]

I will see if I can muster the will to go to yet another doctor. Yikes!To: neurosarcoidosis Sent: Wed, April 20, 2011 3:49:49 PMSubject: RE: Meniere's Disease

, I would save time & just call an ENT. Maybe I'm biased because of my experience with the hearing loss & vertigo back in 1999.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: rkelty99@...Date: Tue, 19 Apr 2011 17:09:47 -0700Subject: Re: Meniere's Disease

Does the dizziness come and go? I'm having debilitating headaches originating in my right ear, and sometimes, all of the sudden, the world seems to take a big swoop to one side and I have to grab onto something to keep from falling down. I tried to make an appointment with my PCP, but he is on vacation and I am loathe to see anyone else at his office.

Would it be better to see an ENT doc? I don't need a referral to see a specialist.

To: Neurosarcoidosis Sent: Mon, April 18, 2011 3:37:14 PMSubject: Meniere's Disease

I can't help noticing that there have been numerous post from some of you about dizziness. My neuro did an ecog test and found out I have Meniere's Disease in both ears. They suspect it is secondary to the sarcoidosis but all linked. This is a good site for information about Meniere's http://www.menieres-disease.ca/index.htm. Once they found out I have Meniere's they put me on a low salt diet and ran steroid profusions in both ears. I also had surgery on both ears to relieve the pressure. Vertigo is horrific with Meniere's. Has anybody else been diagnosed with Meniere's? If you are having problems with dizziness, vertigo, nause, ringing in the ear, trouble hearing or pressure in your ears, you might ask your doctor for an ECOG test. ENTs or neuros should be able to check this.Becky in Alabama

[Guest guest]

You can just add to your collection of "ologists." Kind of like collecting stamps or coins.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: rkelty99@...Date: Fri, 22 Apr 2011 18:39:31 -0700Subject: Re: Meniere's Disease

I will see if I can muster the will to go to yet another doctor. Yikes!

To: neurosarcoidosis Sent: Wed, April 20, 2011 3:49:49 PMSubject: RE: Meniere's Disease

, I would save time & just call an ENT. Maybe I'm biased because of my experience with the hearing loss & vertigo back in 1999.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: rkelty99@...Date: Tue, 19 Apr 2011 17:09:47 -0700Subject: Re: Meniere's Disease

Does the dizziness come and go? I'm having debilitating headaches originating in my right ear, and sometimes, all of the sudden, the world seems to take a big swoop to one side and I have to grab onto something to keep from falling down. I tried to make an appointment with my PCP, but he is on vacation and I am loathe to see anyone else at his office.

Would it be better to see an ENT doc? I don't need a referral to see a specialist.

To: Neurosarcoidosis Sent: Mon, April 18, 2011 3:37:14 PMSubject: Meniere's Disease I can't help noticing that there have been numerous post from some of you about dizziness. My neuro did an ecog test and found out I have Meniere's Disease in both ears. They suspect it is secondary to the sarcoidosis but all linked. This is a good site for information about Meniere's http://www.menieres-disease.ca/index.htm. Once they found out I have Meniere's they put me on a low salt diet and ran steroid profusions in both ears. I also had surgery on both ears to relieve the pressure. Vertigo is horrific with Meniere's. Has anybody else been diagnosed with Meniere's? If you are having problems with dizziness, vertigo, nause, ringing in the ear, trouble hearing or pressure in your ears, you might ask your doctor for an ECOG test. ENTs or neuros should be able to check this.Becky in Alabama