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On walking...


#1

I’ve noticed an imbalance felt when walking, but not when I’m still. It eases a bit when I take off my glasses but it’s still a damned nuisance. I have all the other classic mav symptoms and have researched endlessly. It does seem triggered by visual stimuli and movement… All the well known phenomena. Nightmare.


#2

Imbalance while walking is annoying as hell and my single biggest non-stop nonsense. It takes a long time for my MAV to morph out of this into something else. When it morphs out of this i have tilting.

My other biggest nuisance is the bedtime rocking which subsides after a while.

As i was telling my friend emily @flutters you can get used to MAV like an old dress.


#3

Imbalance is the pits and seems to be one of the symptoms most resistant to improvement. I’m not even sure the medication makes a dent in it, unless over the very long term.

I’m glad to report mine has improved significantly over the two and a bit years but relapse will bring it back if less intensely.

It’s a waiting game unfortunately, but on my evidence does improve over a long period.

Btw goes away for me cycling. Anyone fancy a bike ride?


#4

James, When i am tired at the end of the day i am more dizzy and notice the imbalance more. I have heard many folks share the same experience.


#5

Yep that figures. Mine gets worse in evenings sometimes. I had a phase recently where it got very much worse about 8:30pm local time. This has recently mellowed and it fluctuates far less.


#6

Haha, I need stabilisers on the back of the bike like a child!!!


#7

Awwwwwww


#8

Hi

Just to pick up on your feeling a bit better when you take yr specs off. Presume prescription is up to date. Don’t know yr story but have you looked into Vertical Heterophoria as a cause of dizziness. Check it out when next researching on line. You will find a post on this forum relating to it together with a link but there’s enough on line. Not all opticians hv the necessary equipment to spot it. It wouldn’t necessarily show up on regular eye test.

Interesting. For you it seems less without yr specs. There must be a reason for that. Are you light sensitive? Have you tried wraparound sunglasses outside? Do they help? Or an FL41 tint? A brimmed hat? Using a walking stick?

With regards the imbalance. It really does get you down. I coped with MAV for a decade in episodic attacks, it’s the relentless of imbalance that finally gets to you. It is the very essence of MAV though, surely. That is MAV. Only another manfestation of the chronic 24/7 dizziness that is MAV. Yet another sign of the underlying vestibular upset, the hyper sensitivity to environmental stimuli etc not that that helps much I don’t suppose.

It’s annoying to hear the meds don’t seem to be able to control it either. Guess maybe we cannot take sufficient to do so maybe. Surely the imbalance is our body’s way of letting us know our vestibular system is still not working correctly. It really does get one down.

The migraine specialist neurologist I saw wrote of me ‘her current imbalance is probably partly due to migraine but also compounded by lack of compensation due to her current reduced level of exercise’ She was at the time referring to my constant 24/7 dizziness even though on meds. That was more than a year ago. Although mine did appear to stop I am currently back to experiencing breakthroughs of imbalance which, at this very moment, seems to be a less severe version of the 24/7 dizziness referred to above. I can understand her statement in relation to my case but when I read of those who really can exercise, ie jog miles etc, if that’s the case, what’s making them feel imbalanced still.


#9

Yes, I get that rocking thing in bed too! Especially when I wake up or after a nap. Feeling like I’m on a boat, but it stops after a few minutes. Weird


#10

Yes, I get that rocking thing too, as if I’m on a boat, especially after a nap.


#11

I haven’t really tried any meds. Well, I tried Betahistine/Serc about 4 years ago but it made me feel worse so I sacked it.


#12

Thanks for this great reply. I’d not heard of this Vertical Het thingy, but I’ll look into it. I actually had an eye test last week and all was well. I’ve even had cervical spine x-rays thinking my woes were emanating from the neck or a curvature, but they came back good too… as do my many blood tests. It’s the same old story with MAV I think - all tests are normal but you’re just not ‘right’.
The Vert Het sounds interesting to me though because there are indicators all thru my life whereby that could have been my actual problem, so I’m gonna explore that possibility forthwith. I imagine tests have to be done by some specialist optician? I’m in the UK (North) and I wonder if you kindly could recommend any?
The other thing you mentioned was special specs, which I have bought from Migralens in London (aka Mediview) which are green tinted. These are clip-ons that fix over one’s normal glasses but again, I have noticed that I’m better off without them in real terms. If my problems could be fixed with prism glasses for Vert Het, I’d be as happy as Larry.


#13

Ah, well then there is scope yet for you to try something else that might be more effective?


#14

Can’t really recommend. Don’t know yr area at all. Only ever been to Liverpool once a cousin went to uni and got married there. Suggest you search on net for an optician who advertising Vision Training, not to undertake that, but one that offers that should be proficient in diagnosing VH as they would hv had extra training, Otherwise if yr local optician is sociable they may recommend. Worth a pop in to see first maybe. Personally I avoid all the big chains but that’s just IMHO. Eye Department of NHS Hospital is an option but waiting lists!!! or specialist Eye Hospital but then again, it’s the waiting lists.

VH is a definite condition that can be diagnosed. You’ve either got it or not. Success rate with prisms for those that hv it must be very high. Would imagine recovery would be pretty quick too. Worth a look.

I returned MIGRALENS. I hv Theraspecs but they aren’t for me either. Brought them in from USA. Trouble is with tints. When do you take them off. Same as you I think I’m better off without them.

Go search out VH. Pls come back and update on yr progress. The 2 conditions have a lot of similarities so it’s possible you’ve had a misdiagnosis. Worth a look anyway. Good Luck.


#15

If proven positive more grist to the mill for the theory of ‘yes, but what causes the migraine in the first place’, at least in a few cases. I’m sure MAV is a ‘… ‘failing all else’ … put them in the ‘ MAV bucket’ type diagnosis quite often. VH and MAV do share a range of symptoms. At least VH is physical. It can be seen by a trained eye. You either have it or you don’t and it has its own treatment - Vertical Prisms.


#16

Very interesting all this. There’s a site called Mr Lexy which lists a host of secondary symptoms of meniere’s disease, which are all familiar if not identical to mav manifestations. It seems that many of us thrash around endlessly for a diagnosis, only to be given some placebo that alters brain chemistry in a deleterious and addictive way. I agree also that mav is a catch-all diagnosis and there are no easy answers. With the same symptoms as meniere’s, we can only be grateful and hopeful that it’s not something more malign. Anxiety also plays a big part in this even for those who are keen to deny anxiety and stress for fear they’ll be branded as whack jobs. Anyone who has a nervous system would be anxious at the onset of mav or meniere’s.


#17

Yes I need to find someone in the UK. My gp is extremely reluctant to make referrals. They’re trained to give patients the brush off.


#18

GPs are pains in the butt but You don’t need a referral. Just go straight to specialist optician. Saw yr post, phoned my friendly optician who’s brilliant and always available to speak to me. He said Search BABO.co.uk and under ‘Liverpool’ you’ll find one in Atherton. It’s a behavioural optometrist. That’s who you want. My pet optician did say yr own optician should recognize the condition but would refer you on to hospital for confirmation. Looking forward to hearing you’ ve managed to get an appointment soon.


#19

Thank you onandon… The depth of your nobility rivals that of any ocean. I’ll look and be back…