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Old 05-28-2012, 02:40 PM   #1
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Question Meniere's Disease: 4-8 week long episodes of vertigo?

I have been having episodes of vertigo, headaches, fatigue and some other, more minor symptoms for the last 9 years. The episodes each last 4-8 weeks, and all but the last one have been characterized by constant rocking vertigo (not spinning) for the entire 4-8 weeks. Even at night, with my eyes closed, I can feel the rocking as if I'm on a boat. In between episodes, I'm pretty much fine. My attacks have been in 6/2003, 9/2008, 9/2009, 6/2011, and already in 3/2012. (The month is the month it started; you can assume it went 4-8 weeks out from there).

I have had one drop attack recently that was NOT during one of my long attacks. I got disorientated and fell out of a closet (it felt as if the closet turned on its side and dumped me out). I also have difficulty balancing at night when I can't rely on visual cues.

I have a hearing loss in both ears at 1000hz, but it is worse in my right ear. I get high pitched ringing tinnitus for 10-60 seconds every day or two, usually in my right ear (I would classify that as "not often"). I also have those ear spasms that make a rumbling sound (I've had that since I was 14 at least).

I have super low blood pressure (at the doctor on Friday it was 95/54, and I was tense because I hate going to the doctors: they rarely believe me or take me seriously because whatever is going on with me isn't easily identifiable). I don't know if this makes any difference, though it could explain some fatigue and dizziness (not vertigo; I have dizziness AND vertigo).

I looked into Mal de Debarquement Syndrome but that would only account for the rocking, and none of the other symptoms. But I do closely relate to the Mal de Barquement sufferers because of the TYPE and DURATION of the vertigo they experience.

The doctor I saw on Friday was a neurologist. I had an MRI and everything else and passed my neuro exam without issues. She is confident it isn't MS (after 9 years and 2 MRIs, *something* should show either in my neuro exam or on the MRI) and suggested I may have Meniere's Disease.

I was screened in 2009 for Meniere's Disease with an ENG test, that indicated it was not my inner ear causing issues.

I do relate a lot to the descriptions of Meniere's Attacks, except for one thing: My attacks are of constant vertigo for up to 8 weeks. It comes on slowly over 2-3 days and fades away over a week. No medications help with the vertigo in the slightest, it just runs its course and goes away by itself. That's the #1 issue for me in believing I could have Meniere's. Everything I've read says Meniere's attacks only last for a few minutes to a few hours. Not 2 months!

I desperately need a diagnosis. I nearly lost my job last month while suffering from an attack, and I DID lose a job in 2009 due to my inability to sit in a chair without falling out, inability to drive, to look at a computer screen, to read at all, etc. If I have a diagnosis, I am protected by law due to having a disability. Also, with a diagnosis, I know closer what to expect or if there are treatment options. I may be close to having my diagnosis or I may still be looking in the wrong place. But it's driving me crazy to have gone so long with no one having any idea what is going on with me.

I am pursuing another appointment with another ENT (my 3rd ENT in 4 years). I really liked my second ENT, the one who did my ENG test. I felt he was very thorough, but perhaps he ruled out Meniere's too early? Also I was thinking if most Meniere's attacks are only a few hours long, the chance of them having their ENG test at that very time are slim. So perhaps my test results could have been skewed because I was in an attack at the time of the test? I don't have the answer, of course, and I don't expect any of you to either. I don't even expect the ENT to have that answer. I'm just asking it to feel heard, I guess.

 
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Old 09-25-2012, 09:06 PM   #2
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Re: Meniere's Disease: 4-8 week long episodes of vertigo?

Hi,

My wife has the exact symptoms as you do. With some minor differences. She has not suffered any hearing loss as you have. She actually tested with above average hearing ability(i buying a dog whistle to test ) However, she suffers from periodic periods of long term dizzyness. She is currently trying meclizine with no improvements. She suffers from Migraines, and a left temporal irritation, that showed in an EEG. We are not sure of what the issue is (doctors neither). One of the suspects was Menieres Disease. However, her neuro has rxed lamictal for the irritation and migranes. Some of the doctors suspect that the basilar migranes could be the culprit. We are also clueless and in search of answers. Her MRI shows a venous malformation but otherwise there is no correlation to the malformation and the dizziness. They say that the malformation was an incidental finding that should be left alone. Our search continues....

 
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Old 10-05-2012, 09:43 AM   #3
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Re: Meniere's Disease: 4-8 week long episodes of vertigo?

So, I saw a few more doctors, including Dr Jeffrey Brown, the doctor who named the syndrome, Mal de Debarquement Syndrome (MdDS). He is pretty sure I have MdDS. When your wife gets it, is it after traveling (airplanes, boat rides, long car trips?). If so, MdDS is likely. If not, vestibular migraines sound possible. My doctors are suspecting that I have both, and the MdDS triggers MAV (migraine associated vertigo), so that once I get MdDS symptoms, it's a spiral to other symptoms. For me, they are wondering about auto immune hearing loss because it's progressing and unexplained. My inner ear antibodies are fine, though, and AIED (Auto immune ear disease) usually happens faster than my loss is going. So, I'm still without a diagnosis, but MdDS + migraines is probably it.

Last edited by Administrator; 10-05-2012 at 10:06 AM.

 
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attacks, hearing loss, mal de debarquement, menieres disease, vertigo



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