Meniere's Disease Support Group

Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.

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carmelb 08/05/2015

Hello everybody, I've just joined this group as only started getting the symptoms very recently. After having some acute symptoms for a few weeks (vertigo and nausea attacks, debilitating dizziness) Im on some meds from my ENT and things are more stable. Right now Im only dealing with Tinnitus and balance problems, thank goodness.

However, I am so confused and unsure about what to expect and what is "normal". The two things which are really bothering me right now are :

1. my legs feel all weak and uncontrolled (if you know what I mean). Was always someone who enjoyed long walks and hikes, a fast walker, but since onset of this illness I tend to stagger and stumble and become very exhausted by walking at all (especially hills or uneven surfaces). Is this part of the disease?

2. Driving - was always a confident and competent driver for the last 35 years, no accidents, but have not been driving lately as we sold our car. I took a car for a test drive yesterday as we need to replace it and OMG - it was scary! I had no sense of where I was driving in relation to the right side of the road and kept clipping the sidewalk, then I actually drove right into our gate and nearly ripped off the wing mirror (in front of the dealer who was selling the car) highly embarrassing! Now I have lost all confidence in driving as Im terrified of causing a worse accident. I just don't want to even risk it again -What do you think? another symptom?

Many thanks for any advice you can give me or if anyone has had similar experiences, have found a wonderful support group on FB which is saving my sanity and its great to find you guys here too, its pretty scary when all these symptoms are so new and other people keep asking me what is wrong, hard to explain to them without sounding like Im crazy!

pattymckennahible 08/06/2015

Would you mind sharing the support group name on facebook. Your symptoms are so similar to mine but I don't have a solid diagnosis that it is Meneire's disease yet. My daughter always tells me to get my eyes checked (which I have and they see nothing wrong) because I always feel like she is driving off the right side of the road but she's not. The biggest sympton I complain about is my blurry right eye. But the spins are also getting more out of control.

Good luck to you!

carmelb 08/07/2015

Hi Patty, thanks for your answer. The support group I belong to on FB is so great , its a closed group so you have to ask to join, here is the link:

https://www.facebook.com/groups/4722666308/?fref=ts

hope that works, or just type in MENIERE'S SUPPORT GROUP into the search window, you are sure to find it.

Buradi 08/08/2015

Welcome. I'm new here, too.

SueHutch 08/08/2015

All of you that are new are in the right place if you have symptoms of Meniere's. If you read all the blogs/posts, you'll find out that everyone has similar yet somewhat different experiences. Some of us start out with vertigo and throwing up violently at the beginning and some have it daily, some have it once a week, some have it only monthly or every other...very different for everyone, Others have the violent episodes increase rather than decrease with time. Some of us have ringing or whooshing sounds in our ear or ears, others not. Some of us have luck with diuretics (water pills to reduce the amount of fluid build up in the balance nerve which causes the symptoms), others of us have low blood pressure and have no luck with water pills. Low salt diets, eliminating caffeine are other recommendations. Some Meniere's patients have fantastic ENT's and others seek help from higher sources such as neuro otologists (the latter being able to perform a surgery if necessary). ENT's or sometimes your primary care physician if they're familiar enough with Meniere's will prescribe antivert (generic meclizine) for vertigo/dizziness and either Xanax (generic alprazolam) or Valium for the panic or anxiety experienced wondering if and when you'll have another episode. Google chemical labrynthectomy and labrynthectomy which are last resorts for some of us. Hearing aides also help with the loss of hearing experienced eventually. I could go on and on, but read everyuone's posts/blogs/replies and you'll find out that we all experience pretty much the same things and there is an age range from the 20's all the way up to people in their 70's. It's mainly women, but there are some men as well. Good luck to you and stay in touch with all the support groups you can for as much information as you can get!

carmelb 08/09/2015

Thank you Sue Hutch, its nice to feel welcomed and to have the basics explained, everything you wrote has described my experience so far with primary health provider and ENT specialists. I will continue to do more research about Meniere's and driving, as its a difficult decision to make (driving or not) not knowing if my ability has suddenly got so bad following the onset of this illness.

SusieOboe 08/12/2015

I have not logged in for a long time and I am going to tell you it is because I have been feeling good. My heart goes out to you as someone newly experiencing the symptoms, but I want to tell you there are people out there who suddenly and with no reason feel completely healed for several years. I don't know if my symptoms will come back, and I still do have some hearing loss; I just wanted to give you some encouragement. I didn't have the general wobbliness you describe when walking; my attacks were acute and between attacks I just had ringing in my ears. Sending healing your way.

Olliedog 08/12/2015

you may consider have a walking stick with you while you walking and i have a two treking pole with me while i am hiking. i have one in my backpack for incase mergency during sudderly episode while i am on the trail. Also carry meregency medical card, contact information and medicine in my backpack as all time. i let my friend know my hiking trail intinerary. i try to hike with people and select popular if i hike alone with my dog. Just be more caution and listen to your body while you are driving. Stress and anxiety are very bad for meniere's disease. Just pull on the side and call somebody pick you up if you have a episode. Carry medical card info, contact, medicine, water and extra clothes incase you throw up during the episode; take good care.

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