Anyone have Meniere's Disease as well? Any correlation?

abrub

Yesterday I was dx'd with Meniere's Disease (after seeing 3 different ENTs; the first 2 wouldn't hear what I had to say, and only heard what they wanted to hear.)  I've had episodes of true vertigo (spinning dizziness, not just unsteadiness) over many years.  Now my ear feels full, is painful (not infected) and I have constant tinnitus ranging from mild to severe.  First 2 drs couldn't put that together - told me I was fine; it was pure sinus.  One dr wanted to do surgery on my sinuses.  3rd dr heard me out, sent me for a hearing test (I was convinced that my hearing problems related only to my clogged ear, but no, I have low-frequency hearing loss) and told me that my symptoms add up very clearly to Menieres.  Yes, to be on the safe side, he's sending me for an MRI, but...

Does anyone else have Menieres?  How do you cope?  I would have thought I'd been through enough stuff...  Meniere's is incurable and as I understand, symptoms are difficult to manage.  DamN.

Alice

 

 

Trubrit

BPPV

I don't have Menieres but I do have BPPV - Benign Paroxysmal Positional Vertigo. I was diagnosed after a canoe accident, where I was hit twice around the head with the oar and canoe. 

I was doing well, keeping symptoms to a minimal until I started on the chemo, which set it off again. I spent my whole treatment feeling like I was falling over sideways. 

I am back to keeping the effects to a minimal, but it never got back to where it was before chemo.  

I know, this probably doesn't help, but I had to have my say. 

I am sorry you have a new diagnosis to deal with, and hope you can find some relief from the symptoms soon. 

TRU

abrub

Trubrit said:

BPPV

I don't have Menieres but I do have BPPV - Benign Paroxysmal Positional Vertigo. I was diagnosed after a canoe accident, where I was hit twice around the head with the oar and canoe. 

I was doing well, keeping symptoms to a minimal until I started on the chemo, which set it off again. I spent my whole treatment feeling like I was falling over sideways. 

I am back to keeping the effects to a minimal, but it never got back to where it was before chemo.  

I know, this probably doesn't help, but I had to have my say. 

I am sorry you have a new diagnosis to deal with, and hope you can find some relief from the symptoms soon. 

TRU

Dizziness in any form is nasty.

I hate the unsteadiness, and have much empathy.  I tend to awaken in the middle of the night to a spinning room.  Not fun.  But at least we now know why.

Take care, TRU

ron50

My father and mother

    Both suffered from acute vertigo. My mother often fell from a sitting position. Dropouts they are called. I have had tinnitus for years as has my brother. I have been to er twice with severe vertigo. My dad was the same , he was bedridden for days at a time . Every time he would try to get up he would vomit. He always described it as being sea sick on dry land. My hearing is impaired , in a crowd or with background noise I cannot hear. I have been to an ENT doctor three times and they just fob me off  . My only relief is anti histamines. They seem to stop the onset of the worst attacks. I fall over on a regular basis. Ron.

abrub

ron50 said:

My father and mother

    Both suffered from acute vertigo. My mother often fell from a sitting position. Dropouts they are called. I have had tinnitus for years as has my brother. I have been to er twice with severe vertigo. My dad was the same , he was bedridden for days at a time . Every time he would try to get up he would vomit. He always described it as being sea sick on dry land. My hearing is impaired , in a crowd or with background noise I cannot hear. I have been to an ENT doctor three times and they just fob me off  . My only relief is anti histamines. They seem to stop the onset of the worst attacks. I fall over on a regular basis. Ron.

Sounds like Meniere's

Ron, if your vertigo is the spinning vertigo, then you've mentioned 3 of the 4 the components of Meniere's:  tinnitus, hearing loss, vertigo; which don't have to occur simultaneously.  The 4th is feeling of fullness in your ears (I feel like my ears are plugged.)  Symptoms occur independently of each other.  I've had spells of vertigo for about 30 years.  It took me going to 3 ENTs to find one to diagnose me.  The other two fobbed me off.  If you go back to an ENT, ask specifically about Meniere's.  However, there isn't much to do about it.  They recommend low salt diet; anti-nauseants or motion-sickness tablets.  I'm just learning my way through this.  I've found that decongestants help me with the vertigo, but the recommendation is for meclizine or dramamine for vertigo.  That never helped me.  Alice

Ruthmomto4

abrub said:

Sounds like Meniere's

Ron, if your vertigo is the spinning vertigo, then you've mentioned 3 of the 4 the components of Meniere's:  tinnitus, hearing loss, vertigo; which don't have to occur simultaneously.  The 4th is feeling of fullness in your ears (I feel like my ears are plugged.)  Symptoms occur independently of each other.  I've had spells of vertigo for about 30 years.  It took me going to 3 ENTs to find one to diagnose me.  The other two fobbed me off.  If you go back to an ENT, ask specifically about Meniere's.  However, there isn't much to do about it.  They recommend low salt diet; anti-nauseants or motion-sickness tablets.  I'm just learning my way through this.  I've found that decongestants help me with the vertigo, but the recommendation is for meclizine or dramamine for vertigo.  That never helped me.  Alice

I have Meniere's

i am a caregiver though. My last bought was in August it was awful, and I had some definite hearing loss this time. I don't find the meclizine to really help, in fact this time  it seemed make me worse. I always have an episode  in August not sure why. Decongestants do help because it's fluid and it gets rid of fluid, water pills help. Learning what side is your trigger side during a bought is helpful, once you figure that out do not sleep on that side for at least a week. I also found a site that helped me do the Epley maneuver and I had some relief from that. You just have to learn to work around it and make sure you move up down or side to side very slowly.  A few more things I also remembered for me when the spinning starts staying still and closing my eyes helps me, not tipping my head back for a week also helps, let the water just pour over you when you wash your hair, and sleep as propped up as possible even sitting up.

abrub

Ruthmomto4 said:

I have Meniere's

i am a caregiver though. My last bought was in August it was awful, and I had some definite hearing loss this time. I don't find the meclizine to really help, in fact this time  it seemed make me worse. I always have an episode  in August not sure why. Decongestants do help because it's fluid and it gets rid of fluid, water pills help. Learning what side is your trigger side during a bought is helpful, once you figure that out do not sleep on that side for at least a week. I also found a site that helped me do the Epley maneuver and I had some relief from that. You just have to learn to work around it and make sure you move up down or side to side very slowly.  A few more things I also remembered for me when the spinning starts staying still and closing my eyes helps me, not tipping my head back for a week also helps, let the water just pour over you when you wash your hair, and sleep as propped up as possible even sitting up.

You describe much of what I've found

tho the Epley maneuver doesn't help.  I, too, have noticed that August tends to be the worst.  And yes, decongestants can help; meclizine does nothing, and I stay as upright as possible during the vertigo.

Annabelle41415

Bummer

Sorry to about that diagnosis.  You have been through so much and I'm sorry you are now battling another problem that you have.  I'm sorry that I'm not able to help but hope you can get some relief from someone.

Hugs!  Kim