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The advice is, repeatedly, to walk as much as possible


#1

Hmm I’ll try to find the book thanks. I was walking 30-45 minutes a day, now I bike for about 30 minutes and do crossfit but I could maybe try walking more as it can’t hurt :slight_smile:


Does MAV ever get better? Don't want to be stuck like this
#2

You’ll find there’s a Survival Guide on here. Just try the Search facility. It’s written by several reputed experts and comes highly recommended.

All a matter of opinion both with consultants and sufferers but some consultants certainly specifically specify ‘no undue exertion’. MAV likes consistency so,as with drug increases, changes, need to be low and slow. . With MAV it is possible too much exercise makes it worse. Neurologist told me to walk outside every day. I think walking is best in terms of being sort of naturally balance challenging, like uninforced VRT. Lots of people will tell you to ‘push through’, ‘push through’. I did that six months with VRT and the result was much like being pushed through. I fell over, knocked my balance out and didn’t get it back for months. Ended up bedridden with back to back attacks, Helen


#3

I walk my dog 3 hours every day over all kinds of terrain and despite medication I tilt, stumble,trip and wobble all over the place but I don’t give a hoot because being outside makes me feel so much better than being inside and I am keeping my body strong to boot. My advice is just do it! I have fallen over many times, yes it hurts but I still think it is worth it.


#4

Revolving that sounds great. I don’t fall over but my balance starts to feel off if I go too far on walks and then I panic I won’t make it back to the car and I start to vere off the side a bit whilst walking, so although I do walk everyday, I don’t push it. For instance, yesterday it was very windy and I was walking on hill track that was irregular and stony so just did 20 minutes as the wind can really affect my ears. I was really in awe of a lady with a walking stick. Maybe I need to control the panic.

Like OnandOn I don’t believe in “pushing through” when I do that I pay for it (laid up sitting on the sofa bar a short daily stroll all last week after house painting). I agree that walking is great and does help maintain balance and leg strength. Sometimes. I use a coat hood like a horse with eye blinkers on if the outside stimuli is too much and where I live you always seem to need sunglasses even when there is a gale.


#5

Hello, would you consider getting yourself a nice slim hiking stick to bring along on your walks? My neuro told me to do this to ensure I get out everyday, I find walking everyday can be a challenge and pay a price after it.

With the aid of the hiking stick I can now walk every day without over taxing my vest system and I found that on a bad day when the car felt far away, I had more confidence in myself to finish the walk and know I would not veer off course too much. I like the confidence it gives me even in terms of my pace of walking so it’s good for me all round.


#6

Good idea Nin. I think I will look into it as I used to walk long distances and I did love it


#7

Well. I never noticed you! Joking aside, Nin beat me to it. I’ve used a walking stick out walking ever since it was suggested to me by VRT Therapist when MAV first went chronic. She did say to use it on bad days and go without it on good days which I will when I get some. It not only gives your balance an extra feely point, it gives you confidence and in busy places, like crowded stores, tells people not to crash into you. It’s a visible sign of our invisible condition. Helen


#8

Walking is great, and my Dr’s recommend it highly. Please do be careful of your terrain though. Last summer, I was actually on my property doing yard work. I was walking around on uneven terrain I started to trip over something minor. In the past, without these balance issues, I would have been able to catch myself as I tripped. But instead I went down, and slammed my forehead into a rock. I couldn’t see out of that eye for about 15 minutes and ended up in the ER. Fortunately it was a surface contusion but produced a huge hematoma. I ended up with two raccoon eyes for like a month! It could have been much worse. Again, I did not fall because I was dizzy, it’s just that my balance isn’t what it used to be. By some amazing miracle, that fall in the summer did not start up my migraine/dizzies. I was terrified it would.


#9

I am the same, always land on my face and broke my nose in December. I usually have a fold up stick in my bag just in case but I had forgotten it that day, typical. I am not dizzy, balance is just hopeless but it is so good for my mental health to be outside I think it is worth all the effort. People have stopped asking me if I am drunk so that’s a bonus!


#10

Absolutely and keeps you fit and stops agrophobia and helps with depression, reducing stress etc, etc. Also, if possible, it’s best to keep doing as many things you’ve always done because habituation applies everywhere and it’s so hard to get it back one you’ve lost it.

Here comes really daft question cos I know Margaret you’ve been coping with MAV, like me, over many years but if you aren’t actually dizzy, have you ever tried any sort of ‘balance’ exercises to help. I don’t mean VRT but there are NHS balance exercises on the internet you can do in your kitchen (provided your dog isn’t like mine who insists on ‘joining in’ as soon as Missus decides to ‘walk funny’ around the place that is!). Provided you have your balance, ie aren’t actually dizzy, might help. I always remember when I attended Tai Chi one day the instructor wanted to introduce a new form but first had to check how many (ten in class) could balance momentarily on one leg. There were only two, the instructor and me. Me solely because I’d been practising because Doctor told me I had balance issues. This was when my MAV was morphing from contained episodic attacks into chronic 24/7 dizziness. Just a thought. Helen


#11

FWIW I think walking is more difficult (therefore more beneficial from a vestibular rehab perspective) than cycling but surely both are good for you. Cycling helped me escape my symptoms which is good for the soul!


Does MAV ever get better? Don't want to be stuck like this
#12

Hello Helen. I actually bought a balance board pre diagnosis in an effort to retrain my body. The result was quite simply hilarious. Just getting on the flipping board was a challenge in itself and took ages. I got it out last week and had to give up because despite holding on to the wall I just kept falling off so my balance has got worse as time goes by. Standing on one leg on the floor is also impossible so goodness knows how I actually walk! I will look up the NHS exercises because I am board of feeling like a tottering old fart!???


#13

My neighbour (who has never had any issue with balance but constantly buys ‘toys’ to keep himself in shape) gave me this, it’s quite good for VRT!:

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Balance training cushion!
More health accessories here

#14

Huge jump for our balance going from feet on solid floor to balance board. Too big a jump and MAVers like you and me don’t do jumping! At very least you’d need two totally firm hand holds (rails) to start with. Here’s the NHS exercises. Good place to start. I’ve others bookmarked PM me if interested. Helen


#15

Sounds like light sensitivity to me. We do seem to walk a very similar path. Helen


#16

Thank you Helen, I will start with those and see how I get on.


#17

i have this! i dont have balance problems though, I am pretty good at it, still dizzy, so weird.


#18

Yes, that does sound weird.

So you don’t see MAV as a ‘variant balance disorder’ then. Helen


#19

not in my case, I did all the VRT and I am like those people that do weird and difficult balance things on TV (I am exhagerating! its a little joke). I got even better with VRT and visual therapy, run, walk, drive perfectly. Now its a game with my son, I tell him “lets do balance exercises” and he jumps on the foam cushion and does the exercises, I think is good for him! For me, it is the rocking feeling when sitting that is bothersome. And I’ve had a couple of bad headaches this week. But all good overall.


#20

Tell me did you ever experience true rotary vertigo either you or the room spinning? Have you never lost your balance entirely so you couldn’t stand up? Or has your MAV always been of the ‘rocking’ sort. Helen