Ear, nose and Throat

[TaraAmy]

I have been suffering with a sensation of "moving, or the sensation of being in the back seat of a moving car", for about 3 years now. It took ENT doctors almost 2 years to diagnose me with BPV(benign positional vertigo). I do Cawhorne exercises for it, but it only makes it mild. Doesnt take it away. I've had MRI's done and an ENG test. The ENG test is what gave the doctor his diagnosis. Its my left ear. He said my balance system is not functioning properly. My question is.. Is there anything I can do to relieve this dizziness? Its constant. Some days are more severe than others. I lost 25 lbs because I couldnt eat from nausea. Is there a cure or is there a vitamin I could take to help. I was living on dramammine's for 2 weeks just to keep me from vomitting. Do u recommend that I go see a new doctor or medication or a vitman/mineral supliment?
Thanks for your time

[Londres70]

Sorry to say there is NO cure for this.  I have been living the same nightmare like you.  I was told sometimes this spontaneously disappears on its own and sometimes it is permanent.  

[RadioAstronomyObserver]

Two years to diagnose it? By chance did they look for superior semicircular canal dehiscence?  This will give the same feeling since it also directly effects the balance system and it's still making its rounds to the knowledge of ear specialists.  I.E. the first paper was published only 12 years ago on this condition and not all specialists know about it yet.

[TaraAmy]

When I first felt the dizziness, I immediatly went to my family doctor. She kept giving me antiboyotics for an ear infection or sinus infection. She didnt know. I took 8 rounds of antiboyotics in a year's time. 7 out of the 8 times, I felt better after I was done the meds. Then, within a week or 2 it was always back. My doctor was stumpped. She sent me for an MRI of my brain to check for tumors that would cause vertigo. The test came out normal. Then I went for an MRI with contrast of my brain and inner ear canals. Again, all normal. My doc was again stumpped. She gave me meclizine and antihystamines. Nothing worked, allthough the meclizine helpped with the nausea believe it or not. I never threw up, but was usually nauseus. I never fell, but almost did a few times, especially when I got a real bad ear infection. The ear infection seemed to make the imbalance(dizziness) worse.  I went to 3 ENT doctors before I got an ENG test which showed that my left ear's balance system wasnt working properly. Apparently my right ear is trying to make up for what my left ear cant do. The doctor said I had BPV(benign positional vertigo). He is making me do Cawthorne exercises. It seems to help the severity, but does not take it away. I dont know if this diagnosis is correct tho. BPV is aggervated by sudden movements or head changes. Thats not my case at all. Im dizzy all day all the time. Mildly, but I feel it. Like Im sitting in the back seat of a moving car. If I sit in a chair with wheels on it tho, I get real dizzy if someone bumps the chair. Its like a shockwave of dizziness. Can anyone suggest exercises or vitamins that I could take to help? These cawthorne exercises Im doing are supposed to retrain my brain to see this "wrong" as a right now. After a year or so of doing these exercises 2-4 times a day, my brain is supposed to relearn how to be balanced again without correcting my ear problem. Does anyone know if I could ever get on an airplane with this? I've had motion sickness all my life. I have never been on a boat or a plane, but would like to know if I could now even with this condition.

[Londres70]

Yes, I would have to agree about the possibility of BPPV not being th correct diagnosis.  It is definitely an inner ear problem.  The other possibilities it could be are Chronic Labyrinthitis or SCDS (the other poster mentioned this).  

It is difficult to say whether the airplane ride will make this worse or do nothing.  I would recommend discussing this with your ENT Specialist.  Make sure your ENT Specialist is competent in treating balance disorders because some are limited in their knowledge of this.  

I am living with the same nightmare.  Mine started two months after I moved to France. I feel better, but not 100%.  I feel like I am on a boat 24/7; rocking and bobbing in water.  
I have been diagnosed with BPPV and Chronic Labyrinthitis.  So, I understand you perfectly.  I notice my diet affects this; salty foods, sugary foods and caffeine.  Like I was told there is NO cure for this.  

[TaraAmy]

Thanks for the information Londres70. As terrible as this is, its comforting to know that someone else is dealing with my same condition. The first 2 ENT docs kept telling me that there was nothing wrong with me. That it was "all in my head". I cryed constantly. I thought... Im not making this up. If u hear of anymore information about this that might help, please let me know. I would give anything to make this go away. What do you do for this? Do u do any kind of exercises? And.. do you smoke? I smoke. I thought if I quit it might help. I've been smoking for 23 years. I would love to quit, but it really has a strong hold on me. Plus, I suffer from Panic/anxiety disorder (since I was 17 years old), so smoking seems to calm my nerves.

[Londres70]

Yup, your story sounds similar to mine.  I was told by one physician I was sick because I drank too much caffeine and had to calm down and get all the stress out my life and then I would be better.  Another physician said it was Meniere's, which it did not fit the pattern.  Two other physicians stated it was a "mental issue" related to me trying to adjust to living in France.  I got very upset after being called "nuts."  Finally, I got pausible diagnoses.

When this all started, I gave up cigars, yes I smoked cigars. :)  So, no alcohol, no smoking, watch the sugar and salt.  Get plenty of sleep.  I love to ride my bike and walk.  Any balancing exercise will help.  Stay as active as possible.  Rest when you must.  I take a medication called Betahistine as needed.  I try not to depend on this med because I want to recuperate faster from this.  My nightmare started in August 2009.  I am beter, but not like my "old self" yet.