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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Calee00 03/14/2018

Hey there,

I'm 39. Have low blood pressure.

Been to multiple ent doctors. After many tests regarding menieres I was diagnosed with it 3 years ago. CT scan, mri came out clean.

For most of 3 year span I got sporadic attacks. My symptoms lasted 7 -10 days. Woke up middle of the night with vertigo. Couldn't go to the bathroom without throwing up. Lose up to 10 lbs during each attack because I can't keep food down.

I make low (no salt additives) sodium homemade lunches and dinners. And doctor put me on water pill. Having low blood pressure, gave me lowest dosage. It didnt work. Acetazolamide, Verapamil all separate times. These two gave me weird side effects.

I was living on Meclizine and that wasn't a solution to me. Most of the time it didn't work enough for me to carry out daily activities. I was immobile. I was downcasted. I prayed a lot. It was frightening time for me. I'm one of those people who hate being helpless. I'm used to doing things on my own.

Last ent told me I should take food allergy tests. Some allergies can aggravate menieres symptoms.

So, I'm allergic to wheat and fugus (cheese). I researched online and many foods contain wheat or use wheat of some sort as substitute, aka filler. Now I read ingredients as well as nutritional facts.

Since going wheat free (gluten free) my attacks have been shorter and less frequent. I still am on low sodium diet. I keep a food log.

My requirement: low salt, wheat free, no alcohol, no caffine. Eating out is a challenge, especially being that current social skill requires one to be either an alcoholic, a foodie and coffee addict. Friends don't call me out anymore and treat me differently. I feel utterly alone. I'm frustrated and sad.

Using sick days and other health benefits is wearing thin, also my boss and colleges patience. I feel terrible missing so many days at work. I'm afraid I'd be fired anyday. Im scared.

Has anyone had luck with any medications or procedures?

Thank you for taking the time to read my story. I very much appreciate any input.

tankapoet 05/29/2018

hang in there, i will pray for you. i was recently dx with MD. i live alone, so, i get
scared too. i take antivert (OTC) when sx get bad. i don't want to go on a Rx diuretic; i am on too many meds already. one thing you can try: i bought earplugs to use when i shower, so, water doesn't get into the ears. i know the fluid build-up is internal, but, i thought it couldn't hurt.
i will do low sodium, i don't drink, but, i can't get up caffeine-it's my only vice.

many blessings

Fire150 06/07/2018

I tried all of that and none of it helped. My doctor did three steroid injections in my ear and that helped more than anything I could ever take.

msink 06/25/2018

Has your doctor mentioned getting a tube inserted and using a meniett device to push the pressure out of the inner ear?

spinningouttacontrol 06/26/2018

I feel ya, I was diagnosed 2 years ago and have super bad bouts of loud ringing, pressure and extreme dizziness.
I was put on a water pill not sure if that helps or not as I still get the attacks.

I am interested in the Meniett device..I go to an ENT and there is not much he said that can be done I get so emotional when I get an attack not sure why other then I feel so incapacitated with these attacks.

I was also told no or low sodium, no caffeine, no alcohol, no lunch meat, no seasoning really of any kind. really nothing that makes life worth living it seems.

Any help would be so much appreciated.

Calee00 06/26/2018

Thnk you tankapoet. Sending many prayers and blessing~

Calee00 06/26/2018

Hi Spinningottacontrol. I mentioned steroid injection amd the device. They dismissed it and said they are drastic measures to take. And they did not recommend it. Fyi, been to 4 ents.

Hangn' tough! You're not alone.

Calee00 06/26/2018

Hi Fire150.
I've been to 4 ents. And all advised me its a drastic measure given my age. But you and I know how debilitating and stressful this is regardless of age.
In anycase, they said that option is recommended further along down the line. Thank you for your suggestion. Btw, what was the name of steroid?

dragonlover 07/19/2018

The one thing that did help, at least as far as controlling the vertigo, was the shunt procedures I had done decades ago. The right ear was done in 1975 and the left in 1993. The other symptoms still go in and out of remission with periods of complete remission sometimes lasting as long as several years. But from what I understand, this procedure isn't being done any more due to lack of long-term success in many people, so I apparently lucked out. I also still have most of my hearing, something that no one can explain. I am somewhat hard of hearing, but can get by fine without hearing aids. I have tried everything else such as the low sodium diet, cutting out caffeine, diuretics, had allergy testing, etc but none made any difference whatsoever so I will not bother with those things again. One thing I do find somewhat helpful is to get extra rest, and avoid getting overly tired. Stress makes this worse but it's pretty hard to not be stressed when we have these symptoms and can't live our lives as we would like to. Often our illness is not taken seriously, and that doesn't help matters. Unfortunately, the symptoms stress us out, which can make the symptoms worse--which in turn makes us more stressed out. t's a vicious cycle. The symptoms may become less severe over time but this can take a long time. Over the years I have heard MD attributed to any number of things--hypoglycemia, candidiasis, gluten intolerance, etc, etc. You name it, and someone somewhere has probably named it as a cause for MD. I have learned to take this information, or misinformation with a grain of salt. I wish you all the best.

Calee00 07/20/2018

Hi dragonlover. Thank you for your input and information.
I really appreciate you taking the time. You're so right ablout doctors making light of this disease and vicious stress cycle. Lack of research and western medicine ignoring natueal remedies limits our productivity to regain our health. We will conquer in numbers one day and more variety of research will come to light. We will get answers and right treatment we need. Thank you for your kind words and Best to you as well.

Canuck99 07/29/2018

Hi Calee00, I'm afraid I don't have any strong suggestions aside from the usual avoiding salt, caffeine, alcohol etc. I do try to drink a great deal of water on the theory that it may clear the system out and in some way help manage sodium levels. I don't know if it helps or not - but it's a theory. Anyway, just thought I'd reach out - I hope you're finding some sort of success managing things - good luck!

TaleMasterTOV 11/04/2018

The gluten allergy seems to me to be a red herring. Something that is high on the list of "popular topics" for doctors, so they think it is connected to everything. I have a doctor that is convinced I have a wheat allergy, but my food journals show absolutely no pattern to my vertigo attacks and what I eat (if I eat anything at all). I'm not saying it's a red herring for everybody, but I recommend trying elimination diets and food journals before buying in to that explanation.

If you have reason to suspect that your symptoms may be related to a spinal injury (whiplash or spinal tap) from your past, a cervical collar and therapy for "cervical vertigo" may be something to look into. The cervical collar is the immediate-but-temporary fix (mine stopped the vertigo immediately and enabled me to go back to work) and therapy can help to make sure it doesn't come back.

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