Mal de debarquement or vestibular disorder

[Anonymous]

Anyone know any doctors familiar with mal de debarquement or vestibular disorders? I’ve seen an ENT and neurologist who didn’t have much advice. I’ve done vestibular PT which definitely helped but symptoms are continuing. I’m willing to go anywhere within a few hours (say Baltimore to Richmond). Wondering if John’s Hopkins would be worth trying. Appreciate any advice.

[Anonymous]

Have you had a head MRI?

[Anonymous]

Anonymous wrote:Have you had a head MRI?

OP here. Yes. Neurologist said it was normal for my age (50s) and wasn’t concerned about mild lesions in the white matter. Actually found a great DCUM thread of people with similar results that reassured me about the lesions. But not sure where to go next for help with the dizziness.

[Anonymous]

I feel like I read an article about this a few years ago and there was one clinic in NYC that had a special visual treatment that “unwound” the sensation. Not sure if legit. This was in the context of cruise ship passengers and maybe a Navy nurse with mal de debarquement, iirc. Might be worth a google but hopefully you get first hand recs here.

[Anonymous]

Get a pair of Virtual reality goggles and you can set up the therapy by yourself. First you have to know which way you are swaying when you feel the symptoms and then try to reverse it.

[Anonymous]

Try upping d & b vitamins. I had to see a specialist at Hopkins who said I have vestibular migraines. Usually triggered by food, dehydration, stress, and vitamin deficiencies.


Dr. Wade Chein. Hope I spelled it right.

[Anonymous]

Anonymous wrote:Try upping d & b vitamins. I had to see a specialist at Hopkins who said I have vestibular migraines. Usually triggered by food, dehydration, stress, and vitamin deficiencies.


Dr. Wade Chein. Hope I spelled it right.

Thank you! I am tempted to try the JH clinic but couldn’t find any reviews. It’s much closer than the NYC one also mentioned. My symptoms seem similar to vestibular migraines, so may be worth it even if just to rule out.

[Anonymous]

How long has it been?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Have you had a head MRI?

OP here. Yes. Neurologist said it was normal for my age (50s) and wasn’t concerned about mild lesions in the white matter. Actually found a great DCUM thread of people with similar results that reassured me about the lesions. But not sure where to go next for help with the dizziness.

Make sure they did MRI with contrast

[Anonymous]

Was this a result of being on a boat?

[Anonymous]

Yes, it started after being on a boat over a year ago. Main trigger is any movement (car, walking) or being in crowds. I avoid big events, face a wall at restaurants, and sit in the back for long car rides. I also have trouble with flickering lights, scrolling screens, and ceiling fans. Vestibular PT really helped me manage it but hasn’t resolved it. MRI was with and without contrast (and made me really dizzy). I can function but would rather not be stuck like this forever.

[Anonymous]

Anonymous wrote:Try upping d & b vitamins. I had to see a specialist at Hopkins who said I have vestibular migraines. Usually triggered by food, dehydration, stress, and vitamin deficiencies.


Dr. Wade Chein. Hope I spelled it right.

He is my doctor too. Thank you for sharing the triggers. I had a slightly different problem and didn’t know about these triggers for vestibular issues. Interesting about stress…

[Anonymous]

Anonymous wrote:Yes, it started after being on a boat over a year ago. Main trigger is any movement (car, walking) or being in crowds. I avoid big events, face a wall at restaurants, and sit in the back for long car rides. I also have trouble with flickering lights, scrolling screens, and ceiling fans. Vestibular PT really helped me manage it but hasn’t resolved it. MRI was with and without contrast (and made me really dizzy). I can function but would rather not be stuck like this forever.

I have a friend with this, she got it in her late 50s after going on a long cruise and also scuba diving. The bad news is her doctor said there is really no cure for it, the good news is she has learned to manage it, and now it is mostly in the background, and she hardly notices it. She doesn’t have any pain or migraines. It’s just the feeling of always sort of being on a boat is how she describes it, but again she has learned to kind of put it in the background, and it doesn’t affect her nearly as much as did at first.

[Anonymous]

Looks like Chien may see patients in Bethesda as well as Baltimore.

https://www.hopkinsmedicine.org/profiles/details/wade-chien

[Anonymous]

My friend has repeated episodes and doctors concluded it is likely caused by a recent concussion (car accident) that loosened crystals in her inner ear. The PT only helps for a few weeks then symptoms return. She started taking low does Valium and claims it has helped her. She lives outside of DMV area so I can't recommend her specialists.