Is this my new baseline now

Blondie have you tried using a cane to help you walk? I have had to use one for the last few months- otherwise I couldn’t even walk around the house- it does help me.

No Sarah I dont think I could resort to that (sorry for any offensive) it has crossed my mind but Im 26 I dont want to use a cane it would be like admitting Im disabled which I guess I am sort of but still that thought depresses me.

I hate the balance when walking thing Ive never had it before but I did have a dizzy friend who had it for five months and had to use a cane but shes ok now and better it eventually went away so I still have hope (a tiny bit)

Hi Blondie,

I completely understand about the cane- I am actuallly 29- but it would be hard to use at any age. My balance has gotten so bad I literally don’t have a choice- I can’t walk without it. I guess you have to evaluate what you can do without it and be safe also- not sure how bad yours is. I hope things get more under control so I don’t have to use it- it makes me so self- conscious, especially when I see other people our age- I want to turn around and go the other way :frowning:

Oh Sarah dont be embarrassed if you have to use it you have to and theres nothing to be embarrassed about sorry I may have worded what I said wrong but you know what I meant. Were a similar age too how long has your balance been like this now? and what brought it about do you know?

Are you from the UK? I guess if it got really bad I would use one ,my husband joked to me the other day that he would get me a wheelchair it was an off the cuff comment but I actually burst into tears as truth is I wouldnt mind sitting in one these days rather than walk. I hate having this illness its ruined my life and I get so pissed off and frustrated with it but I do think we will get better again eventually xxx

Embarrassed? Look up “athletic dueling.”
That’s a one-time sport that I loved. When I graduated from the walker, and then the cane, that I relied on after my hip replacement a year ago, I looked around to see if anyone still practiced it. Nope.
My grad school officemate, John, taught it to me: dueling using canes instead of swords or foils. Fun!

So if you get a cane and consequently ARE MORE CAPABLE (okay, call it “less helpless,” if you prefer) you can think forward to the time you may have this crap under control and are be able to give up relying on it. At that point you can make like the geezers in the old comedies, and shake your cane at any scamps that stumble over your metaphorical bandaged foot, perhaps even chilling their blood by chasing them.

P.S. My cane-wielding friend John later moved on to coaching Olympic fencers.

David, you are bloody hilarious!!! :smiley:

Thank you guys for your support about the cane- it sucks and is scary to know that I need to use it now- for some reason, since Aug., my baseline balance has gone downhill. As a young person it is so embarrassing- but I have to say- the longer I am using it, the less self-conscious I am about it- it is just something I bring, like my handbag and my jacket, with me. You know what I am actually more worried about? What if I get better and don’t need it anymore, and then eventually I need it again, and then people will start asking a million questions about it??? It’s bad enough that I feel bad for using it, but when people (usually strangers) ask me about it, I want to crawl under a rock :frowning:

Blondie- No I live in the U.S.- this whole mess actually started with a barotrauma. I may have a fistula and/or some other type of damage from the trauma, but nothing can be pinpointed right now. I suspect I developed MAV after having the issue for a few months, untreated (if it is a fistula). This problem is so incredibly random, it seems like it can start from virtually anything- a hit to the head, barotrauma, virus, stress, travel, or no apparent cause at all. I wish it was more common so that when you say it, people know what you are talking about.

LOL at David!

Sarah Its been since August in the grand scheme of things its not that long I think you could compensate and overcome this again and you will in time your young and have to believe you will recover again one day X

Sarah, I get your "What if"s. I pull some of that same shit on myself.

Two things.

First, most people are a whole lot more interested in themselves than in you and what you’re doing going around with a cane, unless you’re juggling balls while balancing the cane on your chin. (The unicycle is optional.) If they do ask why, they’re most likely being polite, so hey, be polite back. (If they weren’t being polite, you’ll confuse the hell out of them by treating them as though they were, and it will serve them right.) If they were simply curious, you’ve got a chance to do some educating that may make things easier for the next person they run into who has some neurological problem, temporary, ongoing, or intermittent.

Second thing, if you keep functioning (rather than happening to die real soon) you WILL run up against more problems and maybe different ones. Get your head around this, and see what kind of judo you can come up with to keep these discouragements from laying you flat and weepy. Why the dickens should you (and I) feel embarrassed that we’re showing the evidence that we’ve suffered a few kicks in the _ _ _ ?

Blondie
I am so sorry to read how rough you are feeling. it pains me to read your symptoms and i can only imagine how hard it is for you especially with your gorgeous young family :frowning:
You know that stress can make symptoms worse and i know it’s really hard but try to find some way to relax either by watching/listening to something funny perhaps or listening to favourite music? Sometimes it can help. Try not to dwell on the symptoms and take your mind off of them whenever/however possible. Some people find meditating or massage can help too.
Have you quit caffeine? It’s usually the biggest trigger for most people, which includes all chocolate. And sweetners which are in most squashes etc?
I’m not sure with your medications if you can take anything else but i have found that simple antinflamatories like ibuprofen can help my symptoms a bit and some people say antihistamines help them. It may provide temporary relief though you can’t obviously take those longterm.
Remember that your condition came on quickly and it may by some miracle improve quickly or go into remission in the future, never give up hope, nothings impossible.
I really really hope you see some improvement soon, i am saying a prayer for you.
Dee xx