Re: Re: Meniere's Disease

[Guest guest]

Thank you. I will ask about that when I go back to the dr. I am experiencing dizziness especially when I read or am on the computer for a long time. Even if I am sitting down for a long time and go to get up I feel like I am swaying and have to get my self together. Sometimes it even feels like I am outside of myself. I know that sounds weird but thats how I feel. I am not sure what that is all about. I am also having ear pain and ringing but the drs keep saying that they do not see anything wrong with my ears. I am not sure what to do next. I will definitely ask about the Menieres.

To: Neurosarcoidosis Sent: Wed, April 20, 2011 4:34:19 PMSubject: Re: Meniere's Disease

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]

Thanks for the information, . I had a friend years ago with Meniere's. I was pretty sure that she took a diuretic, but couldn't remember anything else. I know that her symptoms were awful. She was a nurse-midwife & a couple of times I was called to take her place at a birth because the vertigo & nausea were so bad.

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

> To: Neurosarcoidosis > Date: Fri, 22 Apr 2011 13:09:31 +0000> Subject: Re: Meniere's Disease> > 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> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

I've heard of Clonopine being used, my mother could not take it though. The doctor did outpatient surgery on her ears, and 98% of the symptoms subsided. The only thing she still can't really do is hold her head up and back, and she did have it really bad. Before the surgery she would have to crawl across the floor at times because she could not stand up, and she would throw up with severe nausea. I was living out of state, which I hated.

To: neurosarcoidosis Sent: Thu, April 21, 2011 11:00:18 PMSubject: RE: Re: Meniere's Disease

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

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Wed, 20 Apr 2011 20:34:19 +0000> Subject: Re: Meniere's Disease> > 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> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

So it doesn't sounds horrible, one of my client's has menieres and Clonopine is what he has had good success with

To: neurosarcoidosis Sent: Thu, April 21, 2011 11:00:18 PMSubject: RE: Re: Meniere's Disease

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

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Wed, 20 Apr 2011 20:34:19 +0000> Subject: Re: Meniere's Disease> > 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> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Amazing Information///We also have something in common, I also work for the insurance

To: Neurosarcoidosis Sent: Fri, April 22, 2011 9:09:31 AMSubject: Re: Meniere's Disease

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.htmlSorry for the long reply.> > , what treatment if any have you had? Was it helpful?> > > Ramblin' Rose> Co-owner/Moderator

[Guest guest]

Connie, do you know what kind of ear surgery your mom had?

Re: Meniere's Disease

>

> I forget how to