Odd sensations when walking

Hi everyone

I’m a new member to this site.

I have been suffering from a strange ‘dizziness’ for the past 2 years. It’s a swaying sensation that I have constantly, from the time I wake up, to the time I go to bed at night. The horizon seems to bob up and down when walking.

These symptoms have remained constant, but then I started getting other strange symptoms, such as my legs feeling like they were being pulled into the ground; feelings like I was lop sided to the left; feelings as though my lower half was on a moving sidewalk like at the airport but my bottom half was veering away from my top half in another direction…

The strangest of all is a feeling of detachment from my left leg when walking - it feels like it’s disconnected from my brain, and it thrusts forward when walking and that it’s kind of ‘lost in space’ when it’s in the air during a walk.

I was diagnosed with Mal de Debaurquement Syndrome in August 2006 in Sydney, however I have since moved to the UK and saw a neurologist here last Friday and he thinks my vestibular dysfunction is caused by migraine. I am now starting on tablets to see if anything will work.

Does anyone else suffer from this feeling of detachment from their legs when walking??

Thanks for reading this - this is really concerning to me so I would be really grateful for any response…

Thanks

Cat

HI catlee.

I get these sensations too!! It’s good to hear someone feels these strange things too and I am not going crazy. I have had this dizziness/swaying thing for almost 3 years. I have been to several nuerologists, etc. All don’t seem to know what this is, but do mention perhaps migraine. I used to get painful migraines years ago, but I don’t get them anymore. It’s weird to think migraines could be doing this…
My main symptoms are an imbalance, swaying lightheadness pretty much all the time. Some days worse then others. Sometimes it’s not there at all. Do you also feel the weird sensations in your arms? I do. They feel like they are not there, or they feel tingly.

I am not sure what Mal de Debaurquement is. What are the main symptoms? I am worried all the time that I have MS. Even though neuro says it probably not, it can take years to show up. I had an MRI and it showed non-specific white dots that are more consistent with Migraine than MS…

thanks,
Mae

Hi Mae

I totally know what you mean - I have experienced this so called ‘dizziness’ for two years and during that whole time, even now, I am scared to death I have MS.

However I’ve been to 3 neurologists now, AND 1 oto-neurologist and they’ve all said that I don’t have it. All my MRIs, eveoked potentials etc are normal.

Mal de Debarquement sydnrome is a condition where you have a constant feeling you’ve come off a boat - rocking, swaying, bobbing. Most people get it after coming off a cruise ship, long plane/train ride; for others, like me, it can happen spontaneously.

My oto-neurologist diagnosed me with this in Aug 2006 and he said this strange detachment feeling is consistent with Mal de Debarquement.

Now that I’m in the UK, my neurologist over here has suggestsed Migraine. However some believe Mal de Debarquement is a variant of a migraine.

When I told my neurologist in London about my funny detached feeling in my leg when walking, he said that it is possible migraine could cause this because it causes such a vast array of strange symptoms.

In answer to your question, I don’t have the detached feeling or tingling in my arms.

Like you, I’m scared it’s something worse, but I think we need to listen to what the neurologists are saying and believe them…

Cheers

Catherine

While walking, when my vertigo is bad - it feels as if none of my joints are connected - like the scarescrow in the Wizard of Oz.

My strangest symptom of all, though, are the bedswings - both horizontal and vertical. The vertical bedswings are scarey - it feels like the bed swings 180 degrees, quickly, my feet are up in the air and then it quickly rights itself. I hate that the most.

How did we ever get this way :frowning:

Julie…over the years (with this condition)i have felt like i am walking on a Waterbed, other times it feels like my feet/shoes feel kinda of heavy so i don’t walk as fast. Really slows me down.

Joe

Julie - when you say you’re walking and your joints feel disconnected, do you mean that when you’re walking you feeling like your leg swings out to take the next step but you don’t really feel like you’re controlling it?

It would be interesting to see if that’s what it feels like because that’s what I’m experiencing…very odd.

Thanks!
Cat

Joe - yes, feeling like i’m walking on a waterbed sounds right - nothing feels solid, and even worse when i’m standing still.

Cat - no i wouldn’t describe it like that. it just feels like everything is disconnected, and it’s random. If i turn to the left with my feet, the tip portion of my body may swing to the right, etc. it’s just a feeling of disconnect.

Thanks for your reply Julie.

It’s amazing the strange sensations that MAV causes…

At least I know I’m not alone in feeling odd sensations as a result of MAV…

Cat

Cat, what you and others have described here is pretty much exactly what I feel like when walking. There is one additional sensation that I get on really bad days that no-one has described. It is like walking down a flight of stairs and thinking that you are at the last step only to reach for the floor with your foot and discover that the floor isn’t there yet. When I experience this, my body reacts the same way as if the floor isn’t there yet and I fall.

I also have strange feelings in my legs when walking - similar to the ones you all describe. Some days I feel like I’m walking on thick foam and my legs feel quite weak. A few years ago I had a vibrating sensation in my legs, like a tremor when standing. My neurologist at that time told me there was nothing wrong with me and I should pull myself together. After several months this sensation finally disappeared but it’s only been replaced by other odd stuff over the years.

I can connect with the description of legs not being well controlled too - it’s like the legs want to go in a different direction to the body. Very weird!!

Christina

Brian, i’ve had the exact same experience, when walking downstairs. It’s so strange for my judgment to be that impaired. I used to be a ballet dancer and now i can’t even walk down a flight of stairs with confidence.

— Begin quote from "Julie"

Brian, i’ve had the exact same experience, when walking downstairs. It’s so strange for my judgment to be that impaired. I used to be a ballet dancer and now i can’t even walk down a flight of stairs with confidence.

— End quote

The thing for me is that I don’t have to be going down steps to get that feeling. Actually I do fine with stairs, but hills are another story, they can work my balance system so hard that I can start at the bottom of the hill feeling OK, but at the top I have to call it a day because my balance is gone. I don’t do elevators either for similar reasons. Went for a ride in one a while back and when it stopped I didn’t, not only leaving me on the floor, but shot my balance the rest of the day.

I’ve had that experience with lifts Brian - the lift has stopped, the door has opened and I’ve fallen out onto the floor much to my embarrassment. My brain hasn’t taken the stop into account - I’ve just kept going!!

Christina

— Begin quote from "Christina"

I’ve had that experience with lifts Brian - the lift has stopped, the door has opened and I’ve fallen out onto the floor much to my embarrassment. My brain hasn’t taken the stop into account - I’ve just kept going!!

Christina

— End quote

I think that the best response here is LOL :slight_smile:

Dear Cat,
yes I most definatly have that same feeling, that is why over this 13 years of swaying type mav I started to believe I had MS.
so at first did the Dr’s.
I believe it could have been some freaky type of aura.
ive even had my legs go from under me they felt as if they werent there.
I knew my brain wasnt working them.
yuck.
jen

Hi Cat,

I sometimes feel like i am walking on sandbags.Walking doesnot feel smooth like it use too. I use to have a feeling where i was beig pulled in one direction and then the other…but that has calmed down the last few years. I don’t walk as fast as i use to either.

Joe

jennyd -

What is your official dx? I’ve had this thing for 4 years. Mine is pretty much all the time (swaying, dizziness)…some days I get relief. I also have the weird thinngs when walking and my arms feel weak sometimes too.
I wonder everyday if I have MS and it just hasn’t shown it’s face yet. It’s hard to beleive migraine is the cause. I have been seeing a nuero for the last few years and he keeps leaning toward some kind of migrane disorder, but wants to see me every six months.
Over the 13 years you had it, was it all the time?

Looking foward to your response.

Hi Mae, Mine is basilar migriane, here is an article on it.
some times it can be called other things mav,silent migriane , bicerstaffe syndrome,confusional migriane.considering it’s supposed to be rare by gingo’s it has so many names,
and yes sometimes it dose feel much like ms is described, some of the symptoms that linger causing weakness ect.
explaining it to my mum the other day and she said wow that sounds like what her sister in law has , my aunty has MS,
for me MS was ruled out.

healthcentral.com/migraine/t … 278-5.html

I now believe Ive had this most of my life, but in the past 13 years has progressed to (dizzyness)
hope this answers your Q;
jen

— Begin quote from "Julie"

While walking, when my vertigo is bad - it feels as if none of my joints are connected - like the scarescrow in the Wizard of Oz.

(

— End quote

Been reading old posts-- I felt like that today when I was walking, I felt like my arms weren’t connected to my sides so I crossed them in front of me.
Second time out I said screw it, and took a cane. :shock:

Heather

Dear Heather, Aura can give this type of sensation, its altered body position, other people have vision changes that cause body parts seem too big or small, others just feel these odd sensations, like detachment.
I have the jelly legs.
You might want to check this HUGE!!! Site out. It could explain some of your symptoms.
I feel like a, marionette with some of the strings cut.

jen

migraine-aura.org/content/e2 … ex_en.html