Meniere's Disease anyone?

[dmarie71]

I have a diagnosis of UCTD with symptoms of Sjogrens and scleroderma.  I have recently experienced a bout of positional vertigo that was followed by tinnitus and increased ear pressure ( I've had ear pressure for 3 years since my eyes went dry).  The vertigo started when I rolled over in bed.  I visited a local physical therapist the next day and he immediately stopped the spinning with the Epley maneuver.  However, I am still feeling a bit "woozy" 2 weeks later and cannot lay flat or on my side without experiencing the strangest sensations of falling or floating.  I had an appointment with my ENT last week.  My hearing test was normal and I am scheduled for further testing next week.  Of course, I've hopped on google and read way too much info and have myself super-stressed because this certainly isn't a simple case of positional vertigo.  I'm pretty convinced I have Meniere's.  Feeling so scared of what's to come and the thought of another incurable disease is just unbearable!!!!  I've looked at the treatment options and it looks like diet and diuretic meds are the first options.  My concern is taking diuretics with a pre-existing condition that causes severe dryness.  Has anyone here ever taken diuretics and if so...what were the side-effects?  thanks so much!!!!

[Carolina]

Well, dmarie, I have Meniere's, but fortunately WITHOUT the vertigo or spinning.  My older son has it with the horrible vertigo.  He has lost all of the hearing in one ear, this time it seems gone for good.  It has come and gone before now, but now he thinks it's just gone.

I have moderate hearing loss in both ears, which developed about 10 years after the first tinnitus started.  I also have pressure in one ear.

My Otolaryngologist recommended N-Aceytl Cistine for the Meniere's.  And I take it every day.  I started in 2008 taking the NAC and in 2011 part of my hearing returned in the ear with pressure.  That shows that it is Meniere's for sure, since other types of hearing loss don't reverse.  Did the NAC help, I have no clue!

My niece has severe Meniere's and has had all sorts of treatments.  There is a device you can use, for helping, but I don't remember much about it.  It is The Meniett Device for Ménière's Disease.  You can read about it.  I won't link since it is a sales pitch.

The condition involves some sort of problem with the middle ear, and probably is related to Immune Disorders in some way, or dryness....it just isn't clear, honestly what causes it.

The tinnitus can be overwhelming, for sure.  I wish I had an answer.  Most of us 'get used to it'.  But people have actually taken their own lives from the tinnitus and other effects of Meniere's.

I'm sure you'll get much better answers from others.

Hugs,  Elaine  Don't be afraid of getting more conditions.....it's not so bad.

[Rachel F]

HI dMarie71,
Just a note of encouragement- don't let anxiety get the best of you! (being rather anxious myself, I have done the same thing) I would think feeling woozy is not that unusual after a bout of vertigo and you didn't have any hearing loss noted. None of us know what is next for us, but most of the time it isn't as bad as we fear. Let us know what you find out at your next appointment and try to postpone worry until after that if at all possible.
All the best-
Rachel F.

[irish]

This sounds more like Benign positional vertigo. I have had this for many years. Little calcifications develop in the inner ear fluid and attach themselves to the little tiny hairs that help with balance and sound. This causes everything to get screwed up. Treatment is the Epley maneuver which helps to move the little tiny stones into an area that doesn't cause all those balance problems. My ENT alway takes a hold of my ears and gives my head a shake to "loosen up the rocks in my head". He then has the staff do the maneuver. I improve when this is done.

I had pressure in my one ear and lost the hearing in the same ear thanks to autoimmune disease. I also had ear surgery that relieved some of my terrible tinnitus(I still have it but not nearly as bad) but lost 50% of my balance from the surgery. So, I have poor balance to begin with, lost 50% of what I had and the got the darn positional vertigo. Makes for some interesting days and I sure can stagger. Thankfully, I don't get nauseated and it does't bother my driving at all. I do still have the pressure in my ear and the whole side of my head will feel pressure also. It is very weird.

Like you I can get very dizzy at the drop of a hat and even turning over in bed can send me off on a tangent. I have learned to not make sudden moves and not to tip my head back when I am in the shower or I am a goner. I can go for days feeling like I am in another world and sitting in my recliner is the best I can do, but I do make myself get up and about. This kind of balance issue seems to be better when I have the perimeters of the walls in my home. My last job was in a building where I had to walk a lot but there were halls and that kept me on the straight and narrow. It is not fun to live like this, but I have been doing it for 19 years. I always have to watch where I walk so I don't fall so it makes life very interesting. I don't get out a whole lot, but I still like to shop and do a few things. The balance issues just wear me out and drag me down afterwards.

I have felt that prednisone helped me some but it hasn't cured it. Don't know if there is much that will change the situation--with me at least. I used to have problems when I was on the computer and occasionally still do. The problem is that trying to keep up with the cursor will send me off on a crazy episode of vertigo and takes a bit to get my land legs. Good luck. Irish

[Carolina]

Well, I wouldn't have agreed about Meniere's except for the pressure and the tinnitus.

I have vertigo or dizziness when I stand up, and it isn't POTS because my BP doesn't drop.  It may just be the medications I take.

I've given up worrying about things.....what will be will be, but since I tend to ignore symptoms rather than notice them, if something does finally get my attention, I follow up.

So it's good to follow up, dmarie.  I take a diuretic for my Blood Pressure, and have for about 16 years now.

I don't think they make me any drier than my Sjogren's. I didn't notice any dryness until the Sjogren's/Sicca developed overnight in 2002.

Hugs,  Elaine