Update on Appt. with Dr. Baloh

Had an appointment with Dr. Baloh two weeks ago and he diagnosed me with Mal De Debarquement Syndrome. Mine started spontaneously, not by travel, shortly after the birth of my first child 3.5 years ago. I was highly anxious at the time which may have triggered it. He said that when dizziness occurs spontaneously it is often related to migraine. I have never had the debilitating headaches associated with migraine, and no family history of migraine either. The reason he diagnosed be with Mal De Debarquement is because I did have an episode of “sea legs” about 5 years ago that lasted for about a week when I got home from a vacation to Lake Powell (2 days is the usual duration and anything above that is abnormal). So I must have had a predispostion to this type of motion mix-up. He did say that drugs like valium and klonopin have been one of the better drugs in treating the symptoms - but not in all cases. I currently take 2mg of valium when I need it and it works wonders for me. Unfortunately, there’s no cure and no magic pill to take it away. When it comes to drugs with chronically dizzy patients, it’s mainly a process of trial and error - what works for one doesn’t work for another. He completely ruled out inner ear damage which was what I was worried about and said that I should stop investigating that avenue because I would just end up frustrated (which has been the case over the years). I think I’m just going to bring my family practioner up to speed - have him do a few more drug trials in regards to Migraine - and stop wasting time and money going elsewhere. He did mention that their neurology clinic is currently conducting studies for all sorts of dizziness, including MAV. Since I’m in UT I don’t think I can travel that often, but for those near LA you might want to look into it. Hopefully their research will shed some light on our cases.

I’m optimistic. I practically live a normal life, I have to try harder than the average person, but realize it could be a LOT worse. In the 3.5 years since I’ve had it I’ve improved, slowly but surely. Hoping that one day I can say “remember those years when I was dizzy?” And hope you can say that someday too.

Have you tried amitriptyline or nortriptyline? Does can fairly often be effective with mdds. What are your symptoms?

I have not tried either of those. I’ve tried verapamil and zoloft but neither helped. So far the only thing that has helped is the valium. My symptoms are basically a feeling of rocking or exagerated motion. The symptoms are most noticeable while being still. Sometimes I have a sense of pressure or water in my right ear, and I have minor tension headaches. My symptoms are are exacerbated by weather changes, menstrual cycle, stress, lack of sleep - (all triggers for migraine as well). I also feel pretty good while riding in the car - it’s the aftermath of a long road trip that really ups my symptoms. I try to keep my symptoms under control - I exercise regularly, get plenty of sleep, and meditate/nap every day for at least 10 minutes. All of these things have helped me tremendously - but there’s just too many factors out of my control. I would eventually like to find a medication that keeps the symptoms at bay - even if I have to take it for a long time, instead of taking the valium as needed. I guess I’ll just have to try and see. My doctor is pretty open minded - he doesn’t know anything about Mdds, but he’s willing to take my word for it if I want to try a medication.

If I were you I would start by taking amitriptyline. If you get too sleepy or suffer too many other sideeffects, switch to nortriptylien (a metabolite). Those are sometimes effective with mdds, usually at doses around 50mg, but Ive read some going up to 150mg.

The other availible med is klonopin, which tends to help diminish symptoms for most people. However it can be addictive (altough keeping doses at or below 1mg is usually not a problem with physical dependence), whilst amitriptyline is not, so I would try that route first.

Thanks for the tips. It’s so nice get advice from people who “get” what I’m talking about.

Hi,

I’m going to see Dr. Baloh on Wednesday. Dr. Hain told me to see him.

Emma

Hi Emma,
Why did Dr. Hain tell you to see Dr. Baloh?
Thanks,
lisa

Hi Lisa,

I live in Los Angeles and I never saw Dr. Hain in person and since we haven’t had any success with the drugs I tried so far (except Celexa; feel 50% on that) they thought it was time for a follow-up. Rather than flying to Chicago they thought it was better to see Dr. Baloh who is 30 min from my house.

Emma