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!!
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
I’m not saying the dizziness goes away exactly, but the brain is focused elsewhere. Distraction works for all kinds of conditions.
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.
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.
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
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
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
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
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
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!
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.
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
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
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
Helen…i take Gabapentin and i think that is used for RLS.
Thanks Jo. Could well be, Gabapentin. Helen
Hi Helen! Happy so far with Ami but hoping for more… it’s only been 9 days on the dosage Dr Goebel wants me at so I am hoping for more improvements obviously.
As far as my restless legs… I cannot sit still and always sit indian style when I can. Have done that for years. The restless legs really get me when I am trying to fall asleep.
I’ve always found distraction really helpful. So long as you are not suffering debilitating neurological symptoms at the time (like a spell of brain fog) doing something involving is really great to help you escape from your predicament (if only temporarily.). At least it can give you some mental respite.
Happy New Year everyone! Here’s to 2019 health improvements!!
I am not sure which drug this was - maybe it was Amy? I wish Pizotifen helped with restless legs as I think I have this too. I find that I have an odd feeling in my legs in the evenings and just have to keep moving them - very annoying.
I had similar problems when this kicked off - still do occasionally - my head felt too heavy /uncomfortable for my neck, so in the end i got a neck pillow from Amazon with 3 prongs - J-pillow - which I found supported my head at home and when I was a passenger in the car.
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Sorry James @turnitaround - I didn’t know about the neck pillows available via this site then - maybe this one could be added to the list? I would definitely recommend it.
Yes - I get that too. My husband thinks he is on the racetrack and tries to get around corners at top speed. It’s alright for him he has the steering wheel to hang on to!
Now that’s a funky one!! Thanks Jan! (added)
I tried couple neck pillows ages back. Unfortunately they were sheepskin lined and far too hot for comfort. Obviously we all have to be as comfortable as possible and have to travel by car/sit upright etc and aids have their place. I cannot imagine how I’d have survived without wraparound dark overglasses but I think one has to be careful masking some symptoms because of the risk of pushing the vestibular system too far. They do say ‘Death is Nature’s Way of telling us to slow up’. Discomfort sitting upright is our balance system’s way of indicating it’s struggling. Helen