Possible Menieres Disease

Hi--

I saw your post and just wanted to reach out to you because I have been experiencing very similar symptoms for 14 months now (since 7/29/22). I also experienced a major vertigo event (spinning for an entire day, worst day of my life) out of nowhere and have since dealt with a constant "floating" feeling. It also kind of feels like I'm in an elevator. Many days it's in the background, but it's really difficult to operate normally in the world when this feeling comes more into the foreground. From what I've been reading about Meniere's sufferers, it seems like the feeling comes and goes. You're one of the first to mention this constant feeling of floating, so I knew I had to reach out. I also suffer from tinnitus and the feeling of fullness in my ears.

I have a lot of information about what I've tried/learned over the last 14 months and I'd love to hear what you've tried/learned. I'm still relatively early in the process because my doctor believed this was BPPV and that it would subside, but it hasn't.

I'm interested in your ENG/VNG test (I haven't had one). What does a lesion in the ear mean? And have they figured out a plan for treatment accordingly?

The next step for me is another MRI (the first one was healthy) to check blood flow at the base of my brain and also betahistine, which is what they often prescribe for Meniere's in the UK/EU. Results are mixed, but it's a very low risk drug.

Anyway, happy to share information. And sorry to hear you're suffering like me through this. I don't have to tell you...it's not fun.

Sound like were experiencing very similar things. My first major spinning even lasted 3-4 days and I floated for 3 months then subsided. I’m going on five months of goatee currently. I’m unsecured about the less ion in my left year except that’s my issue and I guess ruled out BPPV. Due to my ear fullness and tinnitus (only two weeks) makes them think Ménières. In the last 14 months have you felt normal at all? With Ménières I was under the impression once the sac in the ear heals you go back to normal. I have no clue and it appears the doctors don’t have many answers as well.

My doctor has no clue either. And there hasn't been a single day in 14 months that I haven't felt the floating. Most days it's mild...and I can do most things.

Here's what I've noticed seems to make it worse: when I'm fighting off a cold/sickness, weather fronts.

Here's what hasn't worked at all: Dramamine, Meclizine, Acetazolamide (high altitude sickness drug), Diuretic (water pill), Epley Maneuver.

In general, the last 5-6 weeks I've had mostly good days, and over that span I have made some changes. First, I've started following a Meniere's diet: lots of hydration (over 100 ounces), lower salt, minimal alcohol, and slightly smaller dose of caffeine (I have a cup of coffee in the morning and a small one in the early afternoon).

One of the surprising things that has really helped clear my head is regular cardio activity. I do a rowing machine for about 20 mins and then run up and down our hill for about 10 mins. Getting my heart rate up (something I hadn't done much in the last two years) has really improved my headspace. This is something I now do every day.

Next step for me is Betahistine and an MRA. I'll keep you posted on whether those do anything.

I have had ménière's disease since 2008.
This the first time anyone has talk about floating (little tear). It is so hard to explain how is feels, I compare it to my heads catching up to my body,lol.
My first episode was at my mums 90th birthday. I start throwing up like I had food poisoning.
It took months of room spinning, going to hospital to have injection to stop being sick. Sleeping for days cause room spun, walking like i was a thunderbird. Then after 3-4 yrs I was told I had ménière's with Vertigo, this is the worst thing. Stress is the biggest tick to start Vertigo but the biggest thing is there is nothing they can do to fix it. I started to have drop attacks, scaring the bejuese out of me 3 in two weeks. But I did know what to fix it 14 months ago, I quit my job, 1 Stress gone. After 1 month off work with lots of sleep and no stress the Vertigo got less and less and stress is what triggers the floating. I also found if I focused on something there less floates feeling.
Now I don't work, I feel better and the attacks still happen but I can control them better. Most doctors don't know much about ménière's even ent don't know what to do for it. But there may be hope on the horizon.
Sorry it's nice to know it's just not me......

I have had hearing aid 6 months as left ear is deaf. It helps with balance and can hear on my left side. See my post.

I still feel off with lots of anxiety. Still no true vertigo since my last and no ear issues either. My doctor things maybe VM/PPPD.

April was my last vertigo attack. I think allergies play a role since I got vertigo in once in March and once in April.

What is this “floating" all about? I think I have been getting it with my vertigo . My vertigo is a constant issue. I have to carry a cane because sometimes I get the feeling that I need it so I don’t fall down. Whatever way I lean I use my cane to stop me from falling over.
I think it’s coming from my psychiatric meds. I’m basically on a permanent vertigo.
I went to a neurologist but he seemed to want to check my memory. 2 years in a row I was sent to a neurologist and it was always regarding memory. This neurologist seemed to be for memory loss, dementia, altzymers only to come up that it was psychiatric meds. No problem with my memory.
Vertigo therapy made me feel worse. Laying down on a bed and turning my head from left to right didn’t help. I was doing it for nothing.
If “floating “ means lightheaded then I have the floating you talk about. Aggravating because I have to live with this. I am always swerving from the position if I stand up straight and off balance when walking. Feels like my feet are too heavy.