Constant sensation of motion

Member Nancy describes the following:

When sitting, standing, or walking, I experience the sense of motion you usually experience riding on a bus or subway.  I experience this motion constantly during waking hours.  I also have a constant sensation of plugged ears.  I've seen seven Doctors about it without any diagnosis.

What helped you or do you have any suggestions?

Comments

agvogel

One of the many ways my Meniere's disease manifests itself is in the way you describe. My symptoms as as to motion and balance are not always the same and have varied over the years.  When I was first diagosed in the 1990's with tinnitus in my right ear, spinning- often more like my brain was spinning in my head rather than the world around me- fullness in the ear, and hyperacusis, many docs didn't consider this Meniere's disease. Fortunately, my doctor is a well respected neurotolaryngologist from a top medical school, and he was adament that I had what he called atypical Meniere's disease. From my point of view and the reading I've done, my doctor's viewpoint has gained favor over the years. Yes, there are the "classic" symptoms experienced by many, but Meneire's is now viewed in a more general light by many doctors. I'm an attorney not a physician, so this is just my opinion. I think you should find a specialist who is not wedded to the black and white world of diagnosis, reecognizes that in medicine (as in law) there is a large "gray" area and can hopefully, at the very least, help you find a proper diagnosis.

donna lee

I have a similar sense of motion.  The motion is a rocking, bobbing, constant feeling of walking on a surface that is moving.  The only time I don't feel it is when I am in a car that is moving.  Once the car stops I feel the same motion.  I have had no nausea or hearing loss which indicates it is not Meniere's.   I have allergies which cause my right ear to be full and I have allergy headaches.  Sleeping because of the sense of movement is the most difficult problem and I have been prescribed 0.5 mg of klonipin to reduce the feeling of movement. I have had this sensation constantly for 2 1/2 years and the diagnosis is Mal debarquement.  I have seen 10 doctors(neurologists, ENT's, physical therapist's) one of which is at Johns Hopkins.  There is no cure.  Sometimes it goes away for some people but has not gone away for me yet. I hope you find a doctor that can help you.  If you get an answer write back.

Phoenix999

Hello donna, this is another donna, a dizzy one. I too suffer from sense of constant motion. I'm sorry that you also have to deal with this problem every day of your life. It's so tiring. I also have problems sleeping. Has the Klonopin helped you? I'm taking Xanex which does help me sleep, but if i sleep too long and wake when the medicine has worn off, I wake wildly dizzy and stay that way for the rest of the day!                 Have you had sleep testing done? I want to know if dizziness shows up on sleep test results?      I lived on the East Coast for a long time and also went to johns hopkins for eval. Did you go through the full team testing with the dizzy neurologist, ENT and psychiatry?  Did they help you with suggestions for improvement? Do you live on the East Coast? I lived there for a long time, but now live in WA state and have found no help here either. I wish you well. Hope to hear from you, your v-pal,dizzy donna

netti49

progressive hearing loss in one hear, full ear, constant tinnitus, and 4 bouts of vertigo---I guess I accept now that I have Meniere's. The first time i had an attack of vertigo was 2.5 years ago and then nothing until two weeks ago. The vertigo was sudden and with vomiting, weakness and fatigue. I flew to MN for a conference and wrapped a vacation around that---i got dizzy (not so much vertigo) while driving, and then it went away. Two days later after eating in a public place the room started spinning--I made it to my friend's home, literally staggered like a drunk into her house where i immediately thought I would throw up--that didn't happen, so I went straight to bed and didn't move anything. Two days later the same thing happened--same scenario---but didn't make it to my other friend's house---I vomited copious amounts on the curb, then said OK help me get inside--almost made it and vomited in her garden. Then to the bathroom where I sat vomiting for about 1.5 hours. It was awful, awful. the next day I was OK and though very anxious about flying home I made it back. I woke up thing moring with a bad headache and vertigo but remained very still and didn't get nausea. This tires you out!! My first thoughts after these last three episodes was --I have to retire, I can't go anywhere in public, what kind of life will I lead. I'm almost 64 so it's not as if I haven't led a very good life, but any suggestions or words of wisdom will be appreciated. When i was in NM I saw an ENT and had a MRI to rule out an acousitc neuroma--it seems there was nothing there. That's good. I'll a new ENT in a week and am going to try acupuncture and start on John of Ohio's alternative supplements too.

CreativK9

Hello! My name is Emma and I live in a constant state of possible movement as many of you have described. Some days I feel almost normal but most of the time I feel movement of some kind: some days more so than others. This started about three years ago and have yet to be diagnosed. Honestly I am sick of going to doctors with yet no diagnosis. My question is how do you all live? I lead a very busy life and am incredibly frustrated that sometimes I have to cancel plans because of my head. Usually I just push on probably putting myself in less than desirable circumstances. My biggest issue is that I have written books on dog training and I lecture around the world. Although I have yet to cancel a seminar, I fear that one day I will not be able to teach. And flying..well sometimes I have to take a Xanax and just sleep because otherwise I would be vomting in my seat. I would love for you to tell me how you cope in real life doing your activities and/or point me to some resources. I keep praying that it will go away...maybe I should just give up but now I refuse to...thank you all for your time and for reading this!