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morninglory (@morninglory)

Meniere's Disease

Ear, Nose & Throat (ENT) | Last Active: 3 days ago | Replies (167)

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Before I get to my ultimate 2 questions, I wanted to provide a little background on my current state. I have for 7 years been trying to discover what has been happening to me, I feel light headed, nausea, dizziness, vertigo, motion causing me problems, confusion, and ultimately, I feel as if I have a permanent concussion. Most days I spend the first half of my day laying in a dark room hoping my medicine will work today and I can just be calm. With ingesting lorazepam during the day and Seroquel at night, I can’t even begin to function. I cannot drive a car and cannot work since my condition worsened in early 2018, even simple tasks are almost unbearable to perform.

I have been on over 24 different medications, seen 6 flavors of specialists (14 total doctors/specialists), and spent years trying to pin down what is wrong with me and recently (3 months ago) I finally had someone who thought they might know what is happening with me. So, I have recently been given, by two separate ENTs a definitive diagnosis and definitive denial of the diagnosis of Menieres Disease. Basically, I had one local ENT Doctor review my records and within about 15 min of asking me a variety of health-related questions, was absolutely certain that I had Menieres Disease. He conducted a variety of balance, coordination, and reflex tests (all of which I did very well at) and then scheduled for me to have an ECOG ran the subsequent Saturday to “definitively identify” whether or not I had Menieres. Even my father arrived to check in with me (around halfway through my appointment) having the ENT Doctor repeat his certainty of having discovered what has been ailing me for all these years (Menieres). The ENT Doctor discussed with me that Menieres was very curable and that treatment would consist of first cleansing the body of sodium (low/no sodium diet) and potassium (and adding back the potassium, see medications below) for a period of 3-6 months, if no improvement is had then I would receive a series of steroid injections over the course of a month, if this did not help then I would receive a specialized surgery (Endolymphatic Shunt Surgery).

He then prescribed me the following being certain of my condition (I will not take either until I have reconvened with Dr. Boston):
a. Acetazolamide ER 500 MG
b. Potassium Chloride ER 10MEQ

After having this uplifting appointment I began to review his provided documentation and look harder into the disease to learn more about it. To my growing dismay it seemed somewhat evident, based on information from multiple sources (and the Mayo Clinic’s website more specifically), that I did not fit the profile for Menieres Disease. More specifically the Mayo clinic defines 2 sets of information that made me feel uncertain of my new, seemingly premature, diagnosis:
1. The Mayo clinic defines a set of criteria in order to be diagnosed with the disorder as follows (my responses underneath):

a. Two episodes of vertigo, each lasting 20 minutes or longer but not longer than 24 hours: I have had more that 2 episodes of vertigo (an at least weekly occurrence) but my condition does not ever “come-and-go” it is ever present.

b. Hearing loss verified by a hearing test: I have had a recent hearing test and my hearing registered as good.

c. Tinnitus or a feeling of fullness in your ear: I have much more frequent tinnitus than I ever used to in my life (3 times a day or so in both ears) but I absolutely do have a feeling of fullness in my ears at all times (can pop my ears repeatedly without end).

d. Exclusion of other known causes of these problems: I am not certain what this would entail so I cannot speak to this.

2. The Mayo clinic discusses the use of the ECOG in regard to identifying Menieres Disease as follows:
"Electrocochleography (ECoG): This test looks at the inner ear in response to sounds. It might help to determine if there is an abnormal buildup of fluid in the inner ear, but isn't specific for Meniere's disease."

I now, at this point, even have another specialist who is certain I am suffering long term issues related to a series of traumatic brain injuries and certainly not Menieres. So, my 2 questions are:

1. Is there anyone else who seems to have the symptoms of Menieres Disease, but the symptoms never come and go, they are around at all time (never better never worse)?

2. I am currently already scheduled to come to see a Mayo Clinic in AZ this coming January (ENT Department), but if the Doctors in that department clear me of the diagnosis of Menieres, will they work with me as a team to ensure I get the help I need from the right (different) department(s)? Basically, it terrifies me of the mere prospect of me going all the way to AZ, have ENT issues ruled out, and then not be able to have a group of medical professionals continue to work with me until we figure this issue out (no matter what specialties are needed).

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Replies to "Before I get to my ultimate 2 questions, I wanted to provide a little background on..."

Dear @phillipflippo, I certainly empathize with your situation. It took years to diagnose my Meniere's. Regarding your hearing test, my hearing would come and go for many years. I could have a hearing test and it would be fine and then my hearing would disappear. I currently wear hearing aides in both ears. I also was taken off of potassium and weaned back on. I went off salt completely and maintain a low-sodium diet but it was also caffeine that was a big culprit for me. And I didn't drink alcohol. Meds did not help me — I was on an anti-nauseam med and diazepam, neither of which did anything. Changing my diet was the key. I hope the meds help you. Also, Meniere's can have a range of severity, Your appointment at Mayo will provide some insight into your situation. I've seen the ENT team in AZ and they are wonderful. Wishing you the best. Take good care of yourself.

What did you figure out what the problem was? Very curious

My symptoms are pretty much always present but severity does fluctuate . I have vertigo, tinnitus, feeling of pressure and hearing loss..

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