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Worst trigger so far....


#21

+1 for the shoes. The wider the shoe the more stable I am. VRT folks recommend flat bottom shoes to help aiding recovery.


#22

Vigs
Thats all i now own…flat bottomed shoes. All my lovely heels and wedges are now redundant😆
Jo x


#23

Don’t throw them out. Shoes are expensive. They’ll come out again once you are better. The experts do recommend people vary their shoes throughout the day to keep the balance system working harder. Apparently the calf length will actually alter depending on heel height. It lengthens if you stick to flats, shortens with heels. And the ankle - very strong in balance equation - adapts too. Amazing really. Of course the varying applies to people without extant balance problems, not MAVers.


#24

Can i ask you all…i had VRT 2 years ago and felt to ill to continue…i still feel like that today. When do you know the time is right to commence these excercises WITHOUT feeling ill?? I know they initaly make you dizzier but i was bedridden whilst doing it.
Jo xx


#25

Once you have got yr basic balance back ‘underneath’ to a great extent and once yr drugs are stopping the constant migraine attacks I’d say from exp. timing is everything with VRT. If the migraine is unstable you are just paying to throw more triggers at it to wind it up further. May as well keep dashing in and out of Tescos. At least it’s cheaper! VRT I saw used to say you shouldn’t do, ie expose yrself to any triggers for any longer than it takes 10 minutes to put you back to baseline in yr dizziness otherwise you are doing more harm than good. Pls let me know if you ever suss that one! I gave up trying. IMHO anybody who can do that deserves at least a first class Hons degree in Astrology from the Open University - by post!

Lots swear by VRT. I’d swear against it. In court under oath if necessary. VRT finished me completely. Six months of it whilst 24/7 dizzy changed my average 3 attacks in 2 years maybe to 4-5 eight day long attacks in perhaps 6 weeks! However particularly since coming to this forum I’ve concluded it can depend where you are in the World. I’m UK based and I don’t think VRT here has had sufficient resourcing and therefore lacks necessary knowledge to help. Of course there may be exceptions but I know of one MAVer who went to top place in London, even had the virtual reality stuff, all privately funded on company insurance and it did him no good.

If you are in US from what I’ve heard on here you are far luckier. I know their training is far superior/extensive to that in UK. They do seem VERY, very knowledgable their VRT. I’ve read they have even picked up on eye misalignment missed by specialist or actually suspected the MAV and set the patient on the path to the correct specialist in the first place. Just shows how valuable education can be. So you may find opinions vary widely and alot may depend simply where people live quite literally.

@turnitaround? What do you think


#26

Couldn’t agree more. It’s sooooo expensive! I went a dozen times on insurance, then only went once whilst out of insurance. The insurance company ended up refusing to pay. I got terrible migraines from the advanced exercises and I didn’t need to see the PT once I knew all the exercises anyway … they are just holding your hand at that point it seems: its pretty easy to determine if you are better! :slight_smile:

Far better is to take things slowly and get out the house in the daytime and have a lovely walk. Symptoms always used to improve after first 30 mins.

VRT may help some, but it’s not got me better … only time has (meds definitely helped in the beginning, but I’ve got tonnes better without meds during the time i’ve been without them too, which btw, makes me more convinced meds are ‘symptom’ management to some extent)

But what is critical imho for many many reasons is getting out the house and exposing your senses to the real world. Outside at first during day, then maybe introducing malls and supermarkets later (but that may not be discretionary as we all need to shop). Without medication that may be a tall order for some though … but it’s definitely worth it!


#27

Thank you for 2 fantastic answers…i agree with you both. I am scared to even strart VRT again it makes me so ill…i will just continue to dash in and out of tesco and then recover at home. I hung some clothes on the line this morning( day off work to do more work) and i was rolling around the house afterwards off balance and dizzy…when will it end!!
Jo xxx


#28

Which do you want first, the bad news or the bad news? I’ve not pegged out other than an odd item or three in years certainly not since 24/7 dizzy probably before. It’s the killer. Best practice. You have to have the wet washing at yr waist height or bit above. Reduces the arc you move through.

Jolly stuff. This MAV really isn’t it. Oh, you sound the most like me I’ve’met’ so far. Quite uncanny. This week I’ve got a huge blister on my left foot through walking and feel lousy. Walking differently I think my brain thinks I’m wearing ‘odd’ shoes and doesn’t like it one bit, I’m feeling really queer.

TBH I’d say the same above VRT as my other half said about couscous. ‘If I ever see another plate of it, it will be too soon’! More I think about it more convinced I become time, patience and the meds are the way to go. Make sure you walk outside every day. Try not to avoid things you don’t have to. Listen to your body. You do need to think more about yr environment. When you walk out give yrself a chance. Flatshoes, even surface, level ground etc, etc . Challenge with more visually complex environments when up to it but don’t push too hard, too fast. In other words don’t make all the mistakes I did.


#29

Time, patience & meds sound about right to me…and rest
Jo xx


#30

but not too much … 8 hours a day lying down at most imho …


#31

You have a point there James…im much worse on a morning after lying from 9pm until 5 30am…then feel less dizzy on an evening.
Joxx


#32

Yeah, i’ve learnt to try and stay up as late as possible (not so easy if you are taking meds that sedate you) and get up as early as you feel able (whilst not being too silly).


#33

Im struggling with the Nortriptyline☹


#34

Tends to get easier the longer you are on the tricyclics.

PS the bonus of getting up early and going to bed relatively early is you get more daylight and less artificial light :slight_smile:


#35

Well i spend 6 hrs of that in artificial lighting in the office and then 2 bus journeys home…its fair to say im ready for bed by 5pm :joy: Spinning
Jo


#36

You seen @gidlabu’s most recent post. Pls to read it. Helen


#37

Which topic is it under Helen?
Jo x


#38

New here … looking for reassurance. Is he on same as you? How yr drugs doing? Sleepy?
Helen


#39

Wow Helen…i am living my life the way gidlabu describes…fron 6 15 am until 2pm 5 days a week i im in the THICK of my worst triggers…then care for my elderly mam after work…which is VERY stressful…im never gonna get better am i??? Im having some changes made at work…even possibly working from home some days if i can.

Something has to give Helen

Jo xx


#40

Glad you found it. Wanted you to understand it. I tried but seemed to hv failed to get over to you how you need to reduce triggers initially to give meds a chance. Did you-then read his other post, under Pizotifen Diaries too. Just shows what can be achieved and shows MAV’s not for ever with care. Suspect all the stress you are having to live with may well hv bn instrumental in the MAV occurring in the first place. The modern work environment is alien to some of us I think and aged parents. Been there and know how stressful that proves. You are right something has to give. The working from home sounds great idea. Good place to start. You do need to arrange more ‘me’ time soon as you can. You do need to take care of ‘you’, too. Helen