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As many of you know I’m in the middle of getting a diagnosis for my dizziness, and associated symptoms. My timeline is:

  • 12 years ago (or so) accident caused severe whiplash to my neck and jaws, and tinnitus in both ears.
  • For last 3 or 4 years I’ve had intermittent fullness and fluttering in my right ear. I never really thought it was anything serious. Tinnitus has gotten steadily louder and alternates between a high pitched Ring/Roar to loud low/high tones in both ears.
  • Since March this year I’ve been bothered with off and on merry-go-round dizziness, fullness in both ears, increased tinnitus and hearing loss, more in the right ear.
  • I have been hospitalized overnight to rule out stroke and TIA, with a CT Scan, Carotid Artery scan and MRI (with and without contrast).  Followed up with a neurologist who diagnosed me with BPPV, although my reactions to certain maneuvers wasn’t typical for BPPV. (BPPV is a medical abbreviation for Benign Paroxysmal Positional Vertigo. It is a form of vertigo that is thought to be caused by calcium deposits within the inner ear. Click here for more info.)  He sent me to physical therapy, which I tried for two weeks with no resolution. He mentioned Meniere’s disease also (Click for more info on Meniere’s Disease.).
  • After the physical therapy didn’t work, I was sent to an ear nose and throat (ENT) who did a hearing test which told us there is mild to moderate hearing loss in both ears. Which he said was ‘normal’ for my age. He said I was suffering from migraine induced vertigo.  I wasn’t convinced and said that the neurologist had mentioned Meniere’s and that I’d researched it and found it matched exactly my symptoms. He adamantly opposed that and proceeded to tell me what Meniere’s was and it was completely out of the question. He suggested an antidepressant which I know I made a face at. When I asked him what the side effects were he was rather snide about it and said ‘Lots of them’ and when I just looked at him he elaborated.  Then he prescribed 50 mg of amitriptyline.

I’m not a difficult person. But one thing puts me off more than anything else I think. When a doctor refuses to listen and then advises you with completely out of date and dispassionate information. To talk to a patient like he did to me was insulting and frankly ticked me off. I will NOT see him again.

I’m not a doctor hopper just looking for a quick fix!  There is something definitely wrong with me!

WP_20130612_001I followed up with my neurologist on Monday this week and he again mentioned Meniere’s. I’m not convinced its migraine induced vertigo – although MAV frequently bothers patients with Meniere’s. Every symptom I have, from the episodes of horrible merry-go-round (rotational) vertigo, tinnitus, fullness in the ears and so on, mimics what so many Meniere’s patients are experiencing. So far, I’m not having vertigo so bad I’m throwing up (thankfully since throwing up is the most awful thing in the world to me!) but it is significant and makes me so nauseous. All I can do is sit still or lay down and be still as possible, then I’m exhausted after. My neurologist isn’t inclined to disagree with the ENT I saw at this point. But he took me off the amitriptyline which gave me horrible side effects and increased my dosage of verapamil (which I take for keeping migraines at bay).

I’m also starting to follow the recommended low/no caffeine, low-sodium diet, as well as no MSG diets (I was already following this because MSG brings on migraines for me). Its absurd how much sodium is in food! I know I’ve ranted before about how much hidden MSG is in our food.

I swear the food manufacturers of America are killing us with their additives that they don’t even have to list! (ok, this is a rant for another day).

I was told about an ENT doctor at Johns Hopkins in Baltimore by a friend who said he’s extremely good. I researched both Meniere’s and doctor and found out this doctor is also one who specializes in and has written several papers about Meniere’s.

I have an appointment October 21st.  I can’t wait to see if he can help me. Meanwhile, I’ll work on the things I can to lessen the effects of what I’m feeling, and pray it helps. Meniere ’s disease isn’t something one wants to have, its progressive – it will get worse, and there’s no known cause (lots of theories though) and no known cure. There is only treatment for the symptoms which can be completely disabling, or permanent if it takes your hearing.

Frankly, I’m very scared. I already have very bad eyesight (with glasses I’m nearly legally blind – without glasses definitely legally blind), I don’t want to lose more hearing too. Its better to get this figured out now!

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