For those that rock and sway

Hi guys

Just wondering how many of you rock and sway front back or left right 24/7 whilst walking and does it get worst as the day progresses? for me i start off with no rocking or swaying when i first wake up in the morning for about 30 mins and then it begins and remains constant throughout the day until 6pm afterwhich i start getting hammered until i go to sleep. I attribute the symptoms worsening to me gertting tired by 6pm. I was wondering if any of u face this false sense of motion especially when u walk and does it worsen with time like me? My symptoms im still able to manage bcz of the drugs. Without the drugs i know i would b screwed all day all night

I have this from the moment I walk up until I go to sleep, it never lets up. I rock side to side as I walk and sometimes feel like I’m being pushed to one side…I also sometimes feel like the ground is rocking beneath my feet…I have no times where I am free of it nor any times where it eases. it’s miserable…xx

I also have it from the moment I wake, getting worse throughout the day until I can lie down in the evening. It never goes but lying down lessens it a bit. I don’t notice it too much when walking, or in any motion, thankfully, only when still.

I have always felt it is more like bouncing, like I float up and down, sometimes it feels like my whole body and sometimes it feels like the top of my head is lifting off while my bottom half is left behind! I still don’t really understand the physiology behind it and don’t really believe the official line about it being our balance system working normally and we are just aware of it when the healthy aren’t. Why would it continue when lying perfectly still? It is quite a slow cycle, every few seconds, not insync with heartbeat or anything else.

Does anyone have another explantion of what causes it?

It is relentless and drives me nuts. What drug was it that worked for you?

Wow nubs that is very strange. I feel the best when I am completely still. I have no symptoms when lying down, sitting down or standing still. As soon as I am in some kind of motion like walking that’s when the rocking/swaying/bouncing begins. This really is a weird illness with everyone having so many different symptoms

I rock 24/7 too. It gets worse as the day progresses for sure but I do wake with rocking too. At it’s worst, I will rock all night long and find sleep difficult. I was wondering if anyone considered Mal de Debarquement as a diagnosis? I always wonder if this is what I have instead of MAV.

24/7 better in the morning after a long nights sleep, worst at night, if anyone has been cured of this feeling through drugs, please let me know which drug was effective.

Rocker girl I have considered mal de Debarquement on several occasions but it just doesnt make sense cz I had 3 continuous random attacks out of the blue that lead to the 24/7 rocking after the third attack and has not left ever since. My attacks did occur after a plane ride or train ride or ship ride. Moveover I have 24/7 visual issues which is not common with mal de Debarquement hence I am convinced its migraine

When I sit still I bob foward and backwards constantly- Nortriptiline has significantly reduced this though- I still feel a little movement- but way better than before. I don’t feel this when I lay down. When I walk, I don’t feel the rocking, but it more like I have no coordination and forgot how to walk- I guess I sway a little but I know it is because I am moving side to side instead of foward because of the imbalance.

Has Cymbalta reduced the rocking when walking? Do you feel like you are going to fall ever? Has your imbalance basically stayed the same since you have had this, or has it gotten any worse or better (without meds)?

Without meds my baseline balance for the first 1.5 yrs was probably about 75% of normal- so not perfect but I could definitely get around ok. Last summer for some reason it went down to about 10%- so basically housebound-can barely walk- in tons of pain from limping and wobbling. Don’t know why this is still looking for the right med to help this- but currently being treated for lyme also.

I think being tired at the end of the day makes sesnse as to why it gets worse. For me when I am tired (especially if I have to get up in the middle of the night) my balance gets worse becaues I need to be 100% alert and concentrate on what I am doing when I walk. Mine kind of fluctuates throughout the day though- if anything it gets a littel better after I have done some walking- its like my brain gets it temporarily and will cooperate with me???

Have you tried pizotifen? I would love to try it but we dont have it here it sucks…same with flunarizine.

Sarah,

I’ve seen you post about Pizotifen and not being able to get it here in the US. Have you considered getting Pizotifen from someone in Canada? Getting drugs available north of the border that can’t be prescribed here in the States is done all the time. Not necessarily advocating it because it would not be under doctor’s supervision, but it is an option.

Andy

Hi Apace,

I have thought of it, but I would have no idea how to dose myself. The other issue is that I am on other meds for other conditions, and my drs. and pharmacists here would have no idea if there would be drug interactions. The other thing is that my drs. for my other issues would ask me what pizotifen was, who prescribed it for me, etc.- I think if I told them they would probably think I was insane. If I had no other health issues and took no other meds and also knew of pharmacies that were definnitely safe, I would consider it- but it doesn’t seem possible in my situation.

— Begin quote from "Simon90"

24/7 better in the morning after a long nights sleep, worst at night, if anyone has been cured of this feeling through drugs, please let me know which drug was effective.

— End quote

Hi Simon,
Pizotifen has twice (once in 2010, and now) reduced this 24/7 disequilibrium/rocking/false-sense-of-motion down to a level where I can hardly notice it, and almost forget about it all.
Tony.

Amazing news about the pizotifen working for so many, but i just wanted to say that lots of other drugs have worked for other people, so don’t despair if you can’t get hold of it! There is still hope!

Thanks TeeCEe i hope the medication can completely eliminate this feeling so i can feel like i used to feel completely still :frowning:

Hi Simon,
have you started on the Pizotifen…?

I rock, forwards and backwards, all the time. Usually I’m ok when in motion, but when I stand still I start going.
I’m sure people think I’m putting it on!

The bouncing sensation when it feels like the floor is moving, I get that too! Think it’s called Oscyalipsa or something spelt remotely like that!

Stress and tiredness are the worst, plus walking, I’m ok for about 15mins, then it gets going.

Oh the joys :lol:

Stress, exhaustion, anxiety all contribute to my ‘standing on a canoe’ feeling.

Funny it usually goes away when I am driving.

Effexor seems to be helping quite a bit, but it’s early days yet.

For some reason I no longer feel the rocking and swaying…
ever since starting topamax, it has completely wiped this symptom out for me
Before topa, it was the most awful feeling…I felt it the most while in bed… felt as if the bed was moving, like on a boat, back and forth

Now if only the rest of my symptoms would magically disapper… :roll:

Hey! How are you all doing with the rocking sensation? I know that this is a old thread but I am curious about the progress you did or didn’t make. I am rocking 24/7 and my GP just put me on Effexor, so far no relieve…but I am in my first week. The rocking feeling is horrible!

ive had mav for 3 years since the birth of my son-its a constant rocking feeling- but since taking the meds pitzofen and nort its much less-still constant but much milder.when im walking and lying down i cant feel it but when im standing still its the most noticeable.But im doing so much more now then the beginning.I just need to get rid of the final bit! Lack of sleep,stress,too much screentime and illness are my worst triggers.