I read often, chime in every once in awhile and am grateful yet saddened to relate to so many of you. I live in Utah and after dealing with dizziness for 3.5 years I have not had much success with the doctors I’ve seen here. My first caloric tests were extremely abnormal 40% loss on my right side, but now my tests are all normal and I still suffer from dizziness every day. I finally have an appointment with Dr. Baloh in January and am not sure what to expect. I’m sure many of you have traveled to see doctors. My question is: how long should I plan on staying, should I plan on extra days for testing? I really don’t have the budget to travel back and forth so I’d like to get the most bang for my buck. I’m hoping that Dr. Baloh would be willing to speak with me over the phone if additional visits are needed. What’s your experience? Any thoughts would be appreciated.
I hope Dr. Baloh can help you. Traveling distances for health issues can be grueling and nerve wracking! I have not gone as far as you will be traveling, (Utah to UCLA ?), but have traveled 4 hours from where I live to Seattle to see a doctor at the University of Washington. I stayed over a week there, at a hotel, so that any tests or follow ups could hopefully be scheduled in that time frame. I made sure the doctor knew about my out of town situation before my appointment. I also sent all my past medical history regarding this illness before my appointment so that it could be reviewed before I got there. It worked out pretty well. The the doctor and staff were very accommodating. I was able to get a few tests and two other appointments for follow up while I was up there.
University medical centers are notoriously hard in scheduling timely appointments,(6-8 weeks lead time!), unless it’s a crisis situation or like one described above. At least this has been my experience. Despite this I have found the effort worthwhile.
I hope this is helpful info for you, and that all goes well in your travels.
Thanks Robbi for the reply. Your information was helpful. This visit is kind of a last resort for me before I start thinking about having another baby. I just hope I can get everything squared away with all the craziness of the Holidays and such. I have a good feeling about it. I doubt I’ll leave my appt. in tears as I have with so many other doctors. Wish me luck.
I saw Dr. Baloh in Novemeber 2006 and he diagnosed me with “Migraine Equivalent”…which is basically the same as MAV. I first walked into the room and his Assistant Dr. Cha sat with me and reviewed some of my past records with other doctors and wanted to know more about my condition. She was with me for about 15-20 minutes and then Dr Baloh came in and within just a few minutes he said “I know what you have…a condition equivalent to a Migraine”. It was like he could see right thru me. Basically after i left…Dr. Cha talked to one of my doctors who i was seeing at the VA Hospital to decide what medication to be put on. A year later i saw Dr. Cha once again for about one hour. It is very rare that Dr. Baloh will see you a 2nd time. Unfortunatley a couple of medications that i tried did not work.
Joe, I wonder if that is the same Dr. Cha that is going to begin research on MdDS with money from the NIH. She has published articles on MAV and other vestibular disorders. Does anyone know where there is MAV research going on?
If you don’t mind sharing, what area are you from? I am located about 4 hours east of Seattle, so I’m wondering if we are neighbors. Are you north, south, or east of Seattle?
I live just outside of Portland. We are NW neighbors! Which MAV doctor do you use? I see Dr. Black in Portland, but that is for hydrops…Meniere’s, (some use these terms interchangeably while others don’t. I guess I could say inner ear disorder!). I’m still trying to figure my next move for MAV. You can PM me if you wish.
Hey Lisa…i believe i tried Amtriptyline. I stayed on this med for nearly a year but no cigar. Then I stayed away from the doctor circuit once again …then returned about a year later to see Dr. Cha…and adventually tried Topamax…but this was prescribed by a Neurologist at the Veterans Hospital…not Dr. Cha…she said it was on the lower list of her choices for MAV. But I tried it anyay. That did not work either. Dr. Baloh is pretty much out of the picture but i e-mail Dr. Cha on occasion and she will return my e-mail.
Sally…yes…Dr. Cha is the one who is in charge of a pretty good size study group on Mal de Debarquement Syndrome. I actually should e-mail her soon and see what the latest is. The research is going on is at UCLA and possibly other cities in the country.
Hi Joe,
Sorry you have not found any relief in a preventive medication! What dose of topamax did you go up to and for how long did you stay on it before pulling the plug? Did you not receive any relief from either ami or topamax or did you stop because of side effects? Is rocking a main symptom for you?
As i recall i didnot even make it to half way with Topamax because the side affects were very difficult for me and made me feel very depressed. Plus trying to get off this medication was a total nightmare…but for someone else it may not be as difficult. As far as the Amitriptyline…i was on a full dose but as i recall it was giving me some side effects with urine retension. Neither medication gave me any help as i recall.
I have the rocking sensation but the main issue now after having this conditon for 17 years is the squeezed-tense like feeling that i deal with daily on the right side of my head. It’s like my head is not relaxed…and i don’t know how to relax it. It’s like trying to get a cube of ice to melt…and i take my medication and the cube of ice melts only enough so that i can take on a part-time job and some of the daily things in life. Feels like a mild to moderate squeezed fist in my head. With that squeezed feeling that brings on waves of motion or a rocking sensation. I very rarely have severe vertigo anymore but if i become overstressed or don’t watch my diet or lack of sleep i can end up with some vertigo like feelings.
Some people refer to the squeezed like feeling in the head as having there head FULL of cotton and i can certainly understand that symptom…my head (not ears) feels full but with a squeezed feeling too.
Yes Joe - Thanks for the response. I also sent you a PM in return, not sure if you got that but it had many thanks. Your info was very helpful and I’m looking forward to the appointment. I’ll keep everyone posted on the results.
