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Less stable seated?


#1

Hi all… since Ive had MAV im very on edge when I go places like restaurants or coffee shops and am seated. I feel asif im agitated and moving all the time just to distract myself from the vestibular workout I am battling on with in secret. I feel less stable sitting down and moving my head/eyes all together is too much. I suppose its anxiety and the MAV all together so when I feel overwhelmed I make an a excuse like needing to use the bathroom just so I can gather myself and oddly feel better upon standing. Maybe because my brain knows im moving and when im seated im not supposed to be moving? Not sure… same when driving I cant keep still. :thinking:

Can anyone relate?


#2

Hi there. Thought I was the only one! I feel worse sitting down and funny enough feel better,although weird, when walking and when I am a passenger in the car don’t feel as bad. My symptoms do change though.


#3

Yep, I’ve never been on psychedelics but I’ve been around people that are on them and sometimes I feel like I’m acting like that. :grimacing: It feels like you are observing an uncomfortable movie that you can’t simply get up and walk away from. I no longer fidget around - I’ve graduated to the stoned look - spacey and disconnected. My wife keeps grabbing me and asking if I’m okay. I have to remember to smile, because actually I’m usually OK, just feel weird.

The best thing is to strike up a conversation about fun and interesting topics. Once you are in conversation I think you will find the symptoms will fade a bit in the moment.

Oh and yes, sometimes its worse sitting. Symptoms change though, sometimes walking slowly is the worst for me.


#4

Isn’t it strange? Im sat in the chair like leaning forward then leaning back then curling my hair… then touching my face!! So agitated! I think its definitely anxiety but due to this condition for sure as when im having a “good day” im not perfect but much better and can engage alot more. Need to start having good days then I guess :triumph:


#5

yup, I do relate. I feel almost normal standing and walking now, but sitting, specially in front of computer is still a challenge, I rock a lot for a while until it moves to the background. I can manage restaurants now without needing to run to the bathroom, but mid year last year it was awful.


#6

Its very odd and often puts me off doing social things but I have to live and so carry on doing what I can. For me I dont tolerate being a passenger very well - esp when they heavy break or take corners too quickly. The pressure fills in my head when breaking is applied and well corners… sure I dont have to elaborate with that one!! :see_no_evil:


#7

Dizziness abating with distraction is indicative of PPPD which one could think of, for some people, as being the psychological end result of a protracted vestibular disorder with its accompanying anxiety.

I was told by somebody - VRT or Alexander Technique bod, not sure which - doing anything ‘slowly’ is far more difficult for the brain. Guess that’s one reason Tai Chi is said to be good balance training. Helen


#8

I’m not saying the dizziness goes away exactly, but the brain is focused elsewhere. Distraction works for all kinds of conditions. :grinning:

Distraction not going to stop a room from spinning or a broken leg from hurting, but anything is better than focusing on how awful it is.

Yeah, that PPPD is a tough one for me to grasp, not sure what to think about it.


#9

Yep, can relate to sitting position being unstable. People tend to think that once I sit down, the dizziness is gone and I’m comfortable. Nope. Discomfort carries on, my head feels full and heavy and it’s an effort to stay sitting still. I find I have to hold my head between my hands or rest it against something to be a bit comfy… makes me look funny…
I echo ander’s advice in striking up a fun and interesting conversation to distract yourself (and treat yourself to sth nice!). Would also add: don’t overdo the length of time you stay; stay a bit but don’t push yourself to stay very long, as that will make it harder next time to want to go out. Just build up your tolerance to sitting and socialising gradually.


#10

So glad its not just me. Everytime im out rather than enjoying myself (although I look asif am) im trying so hard to integrate and be present. It is very much like an endurance test and im always willing it to be done so I can go home and rest my heavy swimmy head :confounded:

Next time I go I will take your advice and just go for a short period. See how long I can tolerate before it starts becoming too uncomfortable :face_with_raised_eyebrow:


#11

Apparently not so. I was as surprised as I expect you’ll be but I have read this is used as one of the criteria to establish PPPD. With PPPD distraction will appear to stop the dizziness. With true vestibular disorders, like MAV, it won’t. It’s certainly never stopped mine. Helen


#12

I was finding it difficult to relate to sitting feeling more unstable. Theoretically it shouldn’t be but now I see some confusion because different people describe the same symptom differently. I think I grasp it now.

This surely isn’t anxiety. This heavy head, ‘oh, I don’t know where to rest to be comfy’, is a balance issue. I found for years I need something to rest my head against for total comfort. For years I’d lean against a wall sideways to eat a meal in my own home as my balance was so bad and dining chairs have no headrests. Now, after years, I can tolerate maybe 30 minutes hence I never ear in retaurants . It would be too much for an impaired balance system. Bear in mind in a restaurant/bar there are so many triggers, movement, noise, lights etc. Concentrating on peoples faces to talk, it’s just pushing the balance system over the top. I’ve spent a week flat out in bed unable to stand following a restaurant meal. My balance system just took a break. Until the meds really kick in, could be good idea to practise some trigger avoidance. It is part of the care package. Helen


#13

Hi all, I also feel less stable while sitting and also kneeling in church. I have always chocked it up to the balance sensors in my feet not being able to provide my brain info. I also read somewhere that restless legs syndrome is very common with MAV, which I have had for years. So in a nutshell, I’m a fidgety mess :joy:


#14

I thought I was alone with this. I’m doing so much better, I can make dinner, serve and even clear the table after, but I can’t sit and eat in my dining room yet. I feel a bit reassured knowing I’m not alone and I look forward to getting well enough to eat at the table again!


#15

I’m the same! Our dining room seats are very soft and plush. I’m better on solid seats than deep, cushy seats… but not great on either.


#16

And better on solid floors, than plush carpets and springy boards, for same reason. Upset balance needs terra firma and the ‘firma’ the better. And how I hate those trainers with that memory foam material! May as well put me on a trampoline! A physio once sat me on a gymball! Helen


#17

You will. Tiny bit at a time. I’ve found the ability to sit up, without head support, is directly linked to how good/bad your balance is at the time. Listen to your body and don’t push it. Move soon as it starts to tighten and you start to feel it in your neck, I’ve eaten many meals on a laptray sitting in a fireside chair with high back and head rest. Helen


#18

Not wishing to cause discontent. Sure you must be happy with Ami and your success so far but what’s the drug that treats both MAV and Restless Legs. @janb told me but it’s slipped my memory. No doubt she’ll remind us in due course. Helen


#19

Helen…i take Gabapentin and i think that is used for RLS.


#20

Thanks Jo. Could well be, Gabapentin. Helen