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Ongoing vertigo issues by a newbie

#101

I’ll hazard a guess. The golf distracted you, then totally absorbed you. You relaxed, started walking naturally. No longer tense proprioception improved, muscles working correctly being without stress-type tension improved yr balance which lasted for return journey. Sometimes happens to me out walking and I can feel completely as per pre-illness. Unfortunately does last long enough. Usually lasts back home for an hour or two and you start to wonder … what’s all the fuss about, I’m OK. It’s gone! … For a while.

Oh, guess it wasn’t the ‘falling asleep’ that did it, it was the ‘going to bed’, ie the lying down. Affects the ears. Need to look at pillows, number, arrangement maybe.

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#102

It’s possible I guess, you are bang on how it feels. You just wish you can bottle whatever is causing the normality. A mate also suggested something about adrenalin but that’s hardly going to be produced in golf!!! As for the sleeping all week I have tried sleeping on left, right, on my back with no change it’s weird.

Since January things were copable. With my motion intolerance up and down head movement wasn’t too bad and right to left one side was more stable than the other so I got away with it. This last two weeks left to right is as bad as each other so it’s small margins.

Thing is I can spin round on my feet and I won’t fall over. One way I can focus on a point but the other everything just spins but I actually feel more steady than I do walking!!!

Maybe I should take myself off to a few rollercoasters for the day and see if being hung upside down at 60 mph will do the trick!!

#103

It’s all pretty weird. The whole shebang. Start to finish and ah how we would it did finish once and for all.

The golf course ‘recovery’ is interesting for plp thinking about VRT. Before attempting VRT exercises to relax neck muscles are done because if you perform all the head turning VRT exercises against stiff muscles you are teaching the brain to habituate to that, ie that that’s the correct way to move, which is exact opposite of what you want to achieve, retraining the brain to notice nerve signals /messages coming via relaxed muscles.

The pillows thing. Tried sleeping sitting in bed virtually upright? Tons of pillows?? GP who originally gave me BPPV diagnosis, told me he suffered it himself and never to go to bed during an attack. To sleep sitting up on a straight backed dining-type chair until the BPPV stopped. Actually I found it the perfect recipe to keep you awake all night. Only tried it once overnight although for yrs I sat bolt upright all day every day through attacks lasting three full days, crawling off to bed at night in between.

At your peril!.. Wouldn’t recommend it… a physiotherapist once sat me on a gym ball to test how well my core muscles were working, he muttered. I was already 24/7 dizzy and that ramped it up about 100% for three full weeks. Wild horses wouldn’t drag me near a rollercoaster yet alone on it.

#104

This happens to me all the time in sports. Table tennis, soccer, juggling, Frisbee, etc - I start playing and everything just “clicks” and I don’t notice any balance issues. But standing in one place drives me nuts, or walking slowly and stepping slowly, or geting in and out of a car. I think when the body is in lots of motion (such as sports), the eyes and proprioception takes over and the vestibular is not really handling much, at least that’s my theory for me. When I start to move slow, proprioception has trouble, so then it falls mostly to the eyes and vestibular.

Interesting it happened to you in golf though, that has a lot of walking. But a fair amount of proprioception and eyes during the swings, so maybe your brain suddenly flipped more towards the eyes and proprioception for a bit and didn’t pay much attention to the vestibular. In addition, you are in wide open and flat spaces, where the eyes are not giving you as much information about precise location as you move, so there is less mismatch between eyes and vestibular systems. I also do much better in wide open and flat spaces.

I too find that after sleeping all bets are off again. Things change in my brain and then I need to recalibrate all the sensor systems. Or, maybe the sensor systems are changing and then I need to recalibrate the brain, hard to know. Either way each day is like the movie Groundhog Day… except there is small progress month over month.

Super interesting observations, lots of room for interpreting what is going on! I often wonder if I just play Frisbee all day would I get better faster? I don’t think so, but maybe I should try (-:

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#105

Man you described it perfectly. When im driving im fine but when i come to a stop, push pull sensation kicks in. When i get out of the car, i feel wobbly sometimes. The worse thing for me is just standing waiting for my hot water to brew for my tea at work.

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#106

Interesting thoughts guys and whilst I don’t wish this on anyone it does give a little bit of relief that we are not alone suffering with this as no one bar fellow sufferers seem to understand because no one else can “see” it. Hence my lost two year battle with the DWP when I was at my worst when they decreed that even though I couldn’t walk straight I was perfectly fit to get a job as a driving instructor!!! :laughing:

I’m partially lucky that my Fixed Term contract in my job runs out next week so if I get another job in schools at least I have a few weeks off to try and get over this latest bout. Having said that it puts me in a quandary at Interviews when you get the question “How’s your health?!”

Have woken up today ok so not sure if that puts paid to the sleeping theory?! My other theories are possibly stress due to needing to find a new job, the heat that we aren’t used to in the UK, watching the World Cup for four weeks, because you are watching something moving that’s harder on the eyes than regular TV or even the fact that as it’s end of term I am doing more work on the computers that I do usually. Clutching at straws though probably as I just think it’s good days and bad days with no rhyme or reason.

The golf scenario is interesting and one I will mention to the consultant when I see her again. With my motion intolerance when its at its best moving my head left to right is calmer than the two. With golf I am right handed so the swing means my head moves from right to left so I am obviously working the weaker of the two motions. Free golf on the NHS would be nice!!!

#107

My therapist said it can take a long time, but even if I don’t do the balance exercises it is really important to continue to do the eye exercises. As I said in another thread, my eyes no longer shake like they did when I first started therapy. I didn’t realize that the nystagmus and blurry vision was related to my condition. I thought it was due to too much computer use.

#108

yes, I am doing them again plus vision therapy and restarted the balance ones. Constancia y paciencia… Be constant and patience, name of the game here.

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#109

@Kell05 what eye exercises were prescribed? My VRT program only has balance exercises. I also have shaky eyes, like one of them starts fluttering when I cross my eyes and then uncross them. Also very hard to focus on a spot on the wall sometimes, my eyes just keep jumping around. I’ve been crossing my eyes now while I walk (periodically (-)) and it seems to be helping.

#110

@ander454 here are some examples:

I do them without moving the arm.

this is another explanation, once you get the hang of the exercises you can increase speed and direction, and then when you are a pro, do them on your cushion to challenge you more!

#111

Great! Thanks I will work on these.

#112

Interesting links Dizzy. The top one I was given to do although it’s just a cross on the wall and I move my head side to side and up and down keeping the cross in focus for a minute or so. Then when that was always in focus I was told to move on to a busy background etc etc. Unfortunately I haven’t got past the first one yet as side to side the cross in “never” in focus!!! Suspect these don’t work on Vestibular Hypofunction as in my case as it’s been 4 months without any improvement and in fact it seems to be getting worse!!

I think that half the problem is there is no definite diagnosis with many people. For years according to one consultant I had Labyrinthitis, then for three years according to another consultant I had MAV, now it’s been given the name Vestibular Hypofunction by my most recent consultant. So it’s about opinions and when they aren’t 100% sure they just tell you it’s one thing or another hence why what works for some doesn’t work for others.

#113

i understand, i have vertical heterophoria and i keep going back and forth wondering if my migraine is causing the dizziness or my eyes. The prisms glasses did not help me much… yet. I feel my brain needs to chill

#114

Question; do you wear prescription spectacles? If so, do they contain prisms? Do you wear specs or not which doing the exercises?

It’s grim for want of a less polite word. The ignorance and lack of diagnosis regarding vestibular issues. However sometimes I think timing is everything, VRT done once migraine condition is stable seems to work wonders for many. Done at the ‘wrong’ time it makes things worse. Pls be aware such eye exercises can actually knock your balance out completely. Eyes are such an integral part of our balance system. This tends to happen more when there are other - maybe undiagnosed - eye idosyncracies. I speak from personal experience. I would imagine if after 4 months things are worse you are, if only temporarily, flogging the proverbial dead horse and maybe even doing more harm than good. Something somewhere needs further investigation or your due diligence should have been rewarded a little surely by now.

#115

@ander454, @NewbieChris, @Onandon03

Just found this page from Hain’s website. This explains better the eye exercises.
https://www.dizziness-and-balance.com/treatment/rehab/gaze%20stab.html

Hope this helps,

Laura

#116

and this is a last one:
https://www.dizziness-and-balance.com/treatment/rehab/visual%20dependence%20exercises.html

@ander454 @NewbieChris @Onandon03

#117

Chris, most of the advice you’re going to get here or from doctors doesn’t work because the causes are unknown. They may be ear related or neck related, pituitary tumors or any number of other things. I don’t know either.

You need to get back to health, then your condition may improve on its own.

As I’ve mentioned before in these forums you need to improve your resting respiratory rate.
Try buteyko breathing exercises such as mouth taping at night and cold showers.
Cold showers can be taken 4-8 times per day on weekends or work from home days.
In my experience the effect of slow respiratory rate is far greater than diets, exercise, pills (aka poison) put together.
I don’t know if you’ll be cured completely but you’ll return to a functioning state of body and mind.

#118

Yes, the VOR are the exercises I do. Not the second video on gaze stabilization though.
I use a cross drawn on two post-it notes.
However I did not start out as fast as he was turning her head. I do them for 30 seconds as fast as I can on that particular day without getting dizzy. The first is just holding the post-it straight in front of me and moving my head side to side. Then up and down. Try doing it against a busy background too.
Then there is the one they show, moving post-it and hand - I am so uncoordinated that I laugh when I do this one.
She wants me to do these 30 seconds at a time, three sets of 30 seconds each. Do all of them five times a day. I haven’t been dedicated enough to do them that often.
There is another one with two post-its held one in each hand, and I move my head/line of sight from one to the other. Start left to right, then right to left.

#119

Hi all, just thought I would post and say hi and hope all are good, or as well as can be expected with this irritable condition? Noticed it’s been a while since I last posted, apologies, it’s been a tough few months where my mum hasn’t been well so I have been looking after and running round for her. Never rains but pours!!!

Just an update. Saw the consultant and physiotherapist in London one more time and thanks again to Turnitaround who first suggested I looked into going there because they have been brilliant. Consultant just re confirmed my diagnosis was “Bilateral Vestibular Hypo function” and showed me the graphs of my knackered balance organs. Must say I was quite shocked on how bad they were,. This is the thing we all have to cope with, because we “look ok” people assume we haven’t got anything wrong with us but when I looked at those graphs in comparison with a “normal” graph I was actually surprised as to how I cope at all. The bad news is the balance organs won’t recover, but the good news is they shouldn’t get any worse and in time the exercises (when I do them) should help. Still no reason why this happened or when but considering that’s the diagnosis I can cope with that, it’s the not knowing that’s tough. No meds will help so again I am off all those.

The physio gave me some more exercises to do back in October and when I saw her for the last time and she re did a few tests I had improved by all accounts. They ask you things like read one of those eye tests whilst moving your head and I could read three lines below what I managed last time so it had improved even though in the real world I hadn’t really noticed much difference.

Had a first “spin” in over a year a couple of weeks ago which was frustrating but bar that I still just suffer the motion intolerance although it’s more cope able than before. Yes still frustrating there is no cure but what has helped me a bit is now considering I have a diagnosis even though there are no reasons behind it I just now try and accept this is now “my normal” and any improvement to my normal is better than none.

So I would for UK users advise to visit a Consultant in Audiovestibular Medicine at the National Hospital for Neurology and Neurosurgery in London if you can because even though it wasn’t quite the outcome I had hoped for at least it gave me some closure on a journey that has lasted on and off nearly 30 years.

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#120

That must be frustrating Chris! But I’m glad you feel a level of closure.

I hope science can get more answers soon.