Hi Nathan. In the broadest terms I have agree with your summary of how much exercise helps with recovery and Iād certainly vote your post Post of The Month if that was necessary however I cannot agree with your suggestion we should each become a āfitness freakā. Next to perimenopausal women and āladies of a Certain Ageā I think youāll find the next largest group of people on here who have developed MAV are āpersonal trainersā. So being the cautious person I am Iām all for moderation in all things and that includes exercise. Agreed, MAV Comes in a wide variety of guises some of which severely inhibit peopleās ability to walk yet alone run for long periods which results in decompensation and deconditioning as a result of which a short walk outside can be considered a triumph. In such cases keeping on the move and being as active as possible without provoking too much discomfort is as much as can be expected and as they say āEvery little helpsā. Everybody needs to realise and appreciate their own limits which hopefully will expand as time goes on with the aid of diet, lifestyle changes and medication. Let those who have always been involved in sports carry on if and where they can but personally I know what pushing through does. It results in falling over, often big time. Itās up to every one to each progress at their own level. After all we have to walk before we can run. Agreed. Give exercise or āincreased activityā a greater role and reduce screen time. Great advice but most of us need to take exercise real steady. Helen
I agree. I like exercise. I feel better when I do, if Iām moderate and careful to know my limits. Games like basketball and tennis or perilous activities like rock climbing (even at the gym with a harness) are way more than this brain can handle. I work out in hour long group kickboxing classes, but I pay attention to where I am physically. My VRT said never more than 20% worse on any metric. When I exceed that, I pay immediately and for days.
Rock climbing? Hee hee. Iād like to be able to get up my stepladder to clean off the top frame of my (high) kitchen windows. Strangely enough when I was constant 24/7 dizzy I could do it. Itās only since that stopped and Iām just intermittently āwobblyā I cannot. Same with step-ups. Though, On a good day I can do those easily, on an off day two step ups and my balanceās a lost soul. Helen
Iāve been thinking a lot lately about ācompensationā ādeconditioningā etc. It comes back to mind every time I read another post where people talk about having had success with a preventative and are feeling better but that they are āstill dizzyā a lot or some of the time. Do some drugs remove other symptoms but not others? leave the āimbalanceā ābehind? Do they all? I wonder what āwhatās leftā really is. Exactly what are we waiting for? I donāt know the answer, just ask the question. Is this dizziness the result of ādeconditioningā, ālack of compensationā, or some sort of ataxia. Could it simply be the fact most preventatives donāt/canāt address the vestibular issues of MAV. Why hasnāt it simply gone away. Has the cycle not been broken completely or for a sufficiently long time period. How come can it and does hang on.
For a long time Iāve seen many flaws in the ācompensationā argument when it comes to an unstable condition such as MAV. After all whereās the stable baseline for it to return. There just isnāt one. But ādeconditioningā is another matter. It comes down to the old adage āuse it or lose itā and that can apply to things as simple as getting dressed it seems. Itās much question of the less one does, the less one becomes able to do. Happens after hospitalisation and chronic illness of any kind. Constant Inactivity causes a downward spiral. The worse you are, the worse it becomes.
Taking myself as an example and researching as I do since I realised ādeconditioningā is now a recognised diagnosis, something I only recently discovered, all manner of other contributory factors have been jumping out at me. Reading about various ways to improve I noticed an article advising people to walk outside regularly and properly. VRT told me better to walk properly with a stick than struggle to walk anyhow without. I read of the need to walk upright with relaxed neck and shoulders. Natural to most folk but not MAVers always or not this one anyway. All this correct posture required presumably connected to correct messages on balance reaching the brain I assume. Elsewhere I read that the habit of always looking forwards and walking to a fixed point outside (another VRT aid to keeping upright I was always given) rather than turning the head can adversely affect the VOR. Just two personal maladjustments which I feel have contributed towards my own deconditioning during five years of chronic MAV. If I could thoroughly correct those maybe that residual imbalance would finally depart. Helen
I was able to run a pretty fast mile before this whole MAV thing started. Iāve tried to start training on and off with MAV. Each time I do I start to feel good about it for a couple weeks and then I just keep crashing into worse head pressure and rocking dizziness. Iām doing a lot more Tai Chi these days and walking, also yard work like gathering and chopping wood.
I think you could get some of the distance and some of the speed back but whatever your personal former glory was is in the past. Which for me is kind of depressing. Itās not so much knowing I peaked already. Itās more looking back at how low that peak was to begin with. waa waa waaaaa Nobody ever confused me with an Amazonian Wonder Woman.
Iām trying to decide if Iām capable of doing my kickboxing class today. I think maybe Iām too sore for anger therapy today. Yesterday I worked the punching bag for about 1/2 hour while waiting for an hour long hip hop dancing class at the Y. I literally danced the line of my thresholds. When I started to get annoyingly dizzy, I backed off or out and then came back. MAV is gloriously silent on the subject this morning, so success! The rest of me wants to know what in Godās name I was thinking when I took this 46-year old broken body and attempted to make it perform hip hop moves. The Frankensteinās monster look I rock while getting stiff, misaligned joints and two left feet to try whatever that standing sex move is notwithstanding. Really racy stuff for an organization with the word Christian right in the name. Crazy fun though. I could actually track the path of the bones in my hips and pelvis as they dislocated. Looks like Iām giving my chiropractor another installment on his student loan payments. Thereās another class tomorrow!
Addendum: my chiropractor suggested I take a good hard look at what the broken and old are doing for workouts at the gym and maybe take up their habits. Kickboxing and hip hop werenāt in that list. He noted how impressively stubborn I am. Then said have fun, Iāll see you next week because we both know youāre going to keep on having fun. For today, though, ice packs.
I swam 1.5k yesterday which is less than I usually do but all MAV would put up with. Pushing boundaries while respecting hard limitations is delicate business.
Use it or lose it totally makes sense. When I got my very first symptoms in 2016, I remember walking was the only thing I felt compelled to do. Anxiety reliving as @turnitaround says and good VRT. A short time later, I began to feel fatigued on a regular basis and also triggered by the walking, let alone any cardio exercise (I went for a gentle jog one morning before work, like I used to do before all this, and had to call in sick). Too much of a walk now seems to make me feel worse, or at least I feel like I then need a long sit down. In March I did around 13k steps per day as part of āwalk all over cancerā as I wanted to start getting back into exercise. I wonder whether itās a coincidence that at the end of that month I went down hill drastically and very fast and still very gradually regaining a bit of normality now (and not walking much).
Feels totally bewildering to think that exercise would help me and yet itās the one thing my VM has consistently prevented me from doing! Hmmm, do I just need to push through? Graded exposure etc? Very very gradual, in my case maybe.
Question is why does your VM stop you exercising>. Is this due to fatigue or simply due to lack of sufficient balance?
I always think there must be many types of MAVer. And their reactions to exercise depends on how severely their balance is currently affected. People who during an attack lose their balance completely (me) or to a greater extent canāt just bounce back and go out walking. Itās much a case of not being able to ārun before you can walkā. Personally Iāve always found it helps to be able to actually stand up for a sustained period first so itās very much a case of āBack to Basicsā. Not a believer in āpushing throughā me. Not with regards to MAV. Certainly not with VRT or walking. Found every time I tried the push resulted in my symptoms exacerbating and another vestibular collapse.
With MAV all changes must be gradual, very very gradual. I only consider walking. Canāt imagine a MAV Brain appreciating a āgentle jogā although i know weāve had many discussions on other threads soon son here about people more able to jog than walk. Well Iām not one of them. I suspect the difference may lie in condition source bring peripheral or central by then again thatās another well discussed theory.
All I know is one good bit of advice I was given by VRT and neurologist alike was that I must walk outside every day if only for 10 minutes. The every day I commuted to as many days as practically possible. In my case for various reasons such as high winds will really do me in and an added stipulation I should not walk out alone.
The old Chinese saying maybe āthe longest journey begins with a single stepā.
Iād say start off small. The end of the road, the end of your own drive maybe even and build up. 1000 steps maybe, certainly not 13k. And expect and enjoy the ālong sit downā. In time walking will do more good than anything.
Thanks for your reply. With me the balance is not the primary issue, its more just the profound unwellness and fatigue. More recently Iāve had shaky legs, like feeling wobbly after something really scary happened to you. A couple of weeks ago I got on the tube with my mum to go for a walk in regent park. Two factors here relating to movement - first the travel - any kind of travel sets me up for a ādoā if I do any walking around afterwards and Iām not in a period of feeling better. We sat in the sun for a bit and then started walking quite slowly through the park. I was feeling ok, then the first thing I noticed was the ground shifting, then a quick sudden feeling of āsomethingā, but still stable. Then it was downhill: anxiety, nausea, shaky, heavy head/ eyes, general feeling of slowness. Culminating in entering the tube station and immediately feeling my stomach drop, sensory overwhelm with low ceilings and underground passageways and sounds. The movement on the tube was almost intolerable and I had to just count my breaths and focus on a button of the jacket of a man sitting opposite me. When I got up and out into the fresh air again, I immediately felt a bit better and was just dying to get to bed, where I then felt a bit better still. The feeling of having to move around slowly and considerately then lingers for a few days, and I get worried about it happening again, so I guess I avoid stretching myself in any way with movement.
I take on board your advice to start slow. Itās like a battle with willpower. Some days I feel more motivated than others. Thatās how it is for most of us I suppose, just keep having to mobilise that determination to keep going.
Thereās obviously some balance involvement. The movement on the tube suggests that. The wobbly legs Iād suggest might actually just be either lack of use or a bit of anxiety. A fatigue aspect certainly doesnāt help. Obviously you need a few very short successful excursions to build confidence. Though talking yourself up helps.
Not surprised at the resulting experience you recount. Far too much stimulation in the one outing. Might I suggest you try approaching the problem more analytically. The condition causes excessive sensory hypersensitivity. If you break your incident down there was far too much stimulation. No idea how you are situated domestically but initially you really need to just go out for a walk from home on your own two feet without any additional involvement of movement which can cause motion sensitivity such as the tube. I recall avoiding country walks with friends and dogs for two main reasons. The dogs walking free milled around and cause visual vertigo and the art of conversing whilst walking is extremely challenging on the affected vestibular system. I found I could only converse provided I didnāt turn my head at the same time. You may well find you need absolute minimum visual stimulation. Walking somewhere quiet without much traffic and certainly no human contra flow of people such as I would imagine in Regents Park. I have to say imagine because I live in a rural West Country setting. Iām afraid your described outing was rather setting yourself up to fail which obviously only builds apprehension and hesitancy for the next time. Quite the opposite of the intention. The early outings certainly need some pre-planning if they are to do more good than harm.
Yes, I see that. Start off slow and build up. Itās hit and miss with me, like the other day I managed a tube journey and then sat in a pub garden with friends for 2 hours and another tube journey back without too much fallout. The extensive walking component was missing in that scenario, so maybe itās all the components put together I need to be mindful of. Thank you for your input and hope youāre doing ok at the moment?
waa waa waaaaa Nobody ever confused me with an Amazonian Wonder Woman.
