1. < Neuropathy

Neuropathy and Motion Sickness

Posted by Debbie @dbeshears1, Oct 3 6:44pm

Does anyone ever experience a feeling of swaying for a period of time after a long car, plane, boat, or train trip? I have been finding that for hours after disembarking from a trip that I feel like I’m on a ship. Everything seems to be swaying - I fear falling and have to hold on to things to walk, and hold onto the bathroom counter while brushing my teeth. I’m not dizzy, and I do not feel nauseous. I can go sit in bed and read. It’s just that I feel like I’m on a boat in the choppy ocean when I’m standing. I’m fine when I get up in the morning. It’s tough because my first evening of a trip , then the day I come home, are very bothersome and I fear falling.

I wonder if this might be common with anyone here with Neuropathy? I have an appointment with an Inner Ear specialist next month but would love any thoughts!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Debbie | @dbeshears1 | Oct 6 7:45am
In reply to @julbpat "Here is an inexpensive option to try. I discovered that the motion sickness bands actually work..." + (show)
@julbpat

Here is an inexpensive option to try. I discovered that the motion sickness bands actually work for me for motion sickness. They have pressure points on the inside of the wrist. Maybe something like this would work? It’s worth a try. In fact, it just occurred to me that I could try these for my morning dizzy spells. Since my spell should occur in about 2 hours, I’m going to put them on right now!

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Thanks for thinking this through with me! I don’t have a trip planned for about a month, so please let me know how this works for you!

REPLY
afriend | @afriend | Oct 6 11:45am

It’s called Mal de Debarquement (MDdS); a rare vestibular syndrome that has limited research and no clear path to remediation.
Mal de Debarquement Syndrome (MdDS) was first described by Erasmus Darwin in 1796, but it wasn't recognized as a clinical syndrome until 1987.
There are only a few medical facilities where physicians are truly knowledgeable about MDDS. There aren’t many books or reports on the subject.
It’s NEUROLOGICAL, not psychological. Sadly, drugs for anxiety or other psychological or psychiatric disorders are often prescribed which don’t help with the rocking or poor balance. It’s not vertigo which is a spinning sensation. It’s not dizziness. MDdS IS ROCKING SENSATIONS and POOR BALANCE that often occur after getting off a ship, boat, train or plane that doesn’t go away after about a month. Most physicians don’t know exactly what it is or what to do about it. ENTs are called upon to rule out causes that can be fixed. It’s not motion sickness or nausea, so seasick meds don’t help. Some people with MDDS also have migraines and migraine meds help their migraines. MDDS is not fatal. There are people who have it for life and some only for months. There are some physical therapy eye exercises, many relaxation techniques and many balance exercises that can help some people.
It is frustrating to suffer with MDdS. I encourage everyone with these symptoms to not become discouraged with the lack of awareness and treatment. Make sure your symptoms aren’t medically something else that can be treated, do breathing and relaxation techniques, exercise and consistently do balance exercises.
My best to you in this uncommon journey!

REPLY
slkanowitz | @slkanowitz | Oct 6 4:30pm

Sometimes the simple things are overlooked by the medical community! I do hope it helps you. Let us know since there are others in the same “boat”. 😀

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1 reply
Debbie | @dbeshears1 | Oct 6 4:49pm
In reply to @slkanowitz "Sometimes the simple things are overlooked by the medical community! I do hope it helps you...." + (show)
@slkanowitz

Sometimes the simple things are overlooked by the medical community! I do hope it helps you. Let us know since there are others in the same “boat”. 😀

Jump to this post

Sometimes “we” overlook simple possible solutions too! That’s why this forum is great - we can bounce off ideas. I will certainly let this thread know if it works for me.

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