I have a question for everyone-----
During all this dizziness (for me its spaciness, disconnected, like walking around in a dream) alot of us have 24/7.....when you go out shopping or just anywhere, does anybody ever feel disoriented? The cognitive problems are really starting to get to me....the confusion, memory problems and all of that mess....does anyone else experience this or is it just me???

Thanks!
Sherrie

Hi Sherrie,
I'm also a 24/7 dizzy person and get very disoriented in stores. It was the worst around Christmas time because I was forced to go to a few malls and those were very hard for me. I was able to get everything done, but it was extremely unpleasant.
I force myself to go into stores now, because I feel like if I avoid them I'll let fear get the best of me and I'll never go out. I try to keep my visits on the short side, and there are def. times where I'm glad to have a shopping cart to push around and keep me steady.
I get really spacey on public transportation as well. Always afraid I'll miss my stop and can't seem to remember if I got on the right train.
It is very frustrating, isn't it? I just keep thinking "I made it this far..."

wishing you undizzy days ahead,
Cori

yea stores and big malls are always the worst for some reason... i think its the big open space mixed with lots of moving things like people... but i'm not sure.. driving is pretty bad as well..... whats weird is every morning when i wake up i almost feel fine.. but then it quickly hits me when i step outside or do anything else.

Ever since I got this 24/7 dizziness I have had problems with thinking. I can't follow a reciepe or the rules of a board game. I bought some Ikea furniture and I couldn't even read the instructions on how to assemble it. I used to be very good at that sort of thing. Sometimes when it is really bad I can't do the dishes or any kind of cleaning because I can't "wrap my mind around it", if that makes any sense.
Also, when I am out shopping, the visual stimulation is so overwhelming that I can barely stand it. So I act very "dead pan" if you know what I mean. No expression. I used to be the life of the party, I was always very animated and funny. Now when I'm out I barely talk to the sales people and have no expresssion on my face. They must think I'm really stuck up. I hate that the most. I hate that my personality has been taken from me.

Thanks for replying everybody--its nice to know im not going crazy. (not that im glad that you all are going through this as well), but it is nice to have a support group.
Well, I go to my first VRT today, I'll let yall know how it goes. Have a good day everyone!

Sherrie

i have all these cognotive problems - but i never feel directly dizzy touchwood - though i do feel very disconnected and lightheaded

I feel like you depflephc...but malls and large opening stores like lowes seem to be very bad for me

Yes!!! The disoroentation is such a huge horrible part for me i HATE HATE HATE it!!! its what makes me feel anxious/stressed/tired!!! (well along with the feelign in a dream).
Oh i really feel for you others that have this crap!
I'm so sorry we all have to feel like it - I hope we all get better soon!
*hugs*
Katkin xxx

Ps It's good to know I'm not the only one that feels this way cos I often feel like I am!

yes me too. my thing is patterns. even walking on a checkered floor can set off some major disorientation, or some types of gravel or cans lined up down an isle at a grocery store. my physio said alot of people with inner ear disorders or whiplash trauma have problems with pattered objects or surfaces. i think it has to do with screwing up our depth-perception. there was a good article in here once before called "the cognitive aspects of a vestibular disorder" that i think you sould read. i'll try to find it too and post it. some neat stuff.

Hey speaking of patterns:
In the medical building where I had my ENG testing done there is this *Horrible* striped wallpaper all up and down every hallway. When I first saw it I was thinking, this has to be an awful joke, sending people with inner ear problems to a place like this.
Now I can look back and chuckle but that wallpaper HAS TO GO! I think it would have made me nauseous even without the ear testing.
Maybe they can invent a new profession, decorators who work specifically with dizzy folks in mind... :cool:

This is a very common issue with people with vestib disorders. The brain fog coupled with cognitive problems are just par for the course as your brain tries to compensate and sort out the whacko signals it's getting from your inner ear. I'm a veteran of these wars and have basically recovered, so I'm here to tell you that yes, what you feel is completely normal with this stuff, and that it will pass.

I actually got my graduate degree (master's) during all this stuff, which amazes me to this day because of the memory problems, fogginess, inability to recall certain words when I needed them, transposing of letters when I typed or wrote by hand, suddenly forgetting the proper way to spell certain words (they no longer looked right to me when spelled a certain way), and on it goes. I'd NEVER had any of these problems and also had an excellent, almost photographic memory and also was very good with language (spelling, writing, etc.), so it was disconcerting to say the least.

Anyway, just my 2 cents to let you know that disorientation in stores and cognitive issues are perfectly in line with what many or most vestib sufferers go through, but it does go away. It just takes time.

T

did u do anything that helped it along ?

Hello again guys

I was just wondering if any of you also get it where you wake up and don't know what direction things are like the bathroom for a moment or what way round the room is.
I had this last night a couple of times (I have had it a lot) and I also woke up to go to the loo and felt all disconnected from my body :( Scary :(

Maybe it's worse cos I had just got nasty period as this can of course make you feel darned rough and weird anyway!?

I just feel so imprisoned and like I'm crazy with this at the moment. It's so restrictive I feel really poorly/anxious/on drugs etc anywhere apart from in my flat and I'm even feeling poorly here at the moment (not as bad as outside of course!)

I also sometimes get where the direction of things seems off and it really distresses me sometimes - like when I'm trying to think about the roads at college and how they connect cos my college is set at a funny angle.

Does anyone else get similar? Or am I just nutty and a freak? :(

Also it's hard to tell if you're feeling anxious because you're poorly or poorly 'cos you're anxious sometimes. Or if you're poorly with somethign completely different like a cold or whatever.
I keep getting bad earache and don't know if it's cos of my ongoing inner ear stuff or a possible infection!
I'm so glad I have a counsellor now but I am really stuggling at the moment with day to day life and with believing I'll ever feel normal *sigh*

Oh also - I often feel kind of more orientated late at night and more relaxed.
I don't know if this is due to the fact my body clock is messed up or something else.

Replies will be very gratefully received!

*big healing hugs*

Katkin xxxx

Hi Katkin---

No, youre not going crazy. I am disoriented pretty much all of the time, but I do notice at night it does get a little bit better, but never totally goes away.
The past week or so I've been seeing a floater in my left eye, and a few times I'll just be sitting and suddenly I'll see stars in my vision--ok--thats a little weird...anyone else have that?
I don't even drive at all right now b/c of my foggy spacey head--I had to leave my job--I just couldn't focus or concentrate at work--felt like I was floating all of the time.
Do you have a diagnosis? Does anything help your foggy headedness?
Be rest assured that you are not alone at all--and many others on here can attend to that--right everybody?

Sherrie

Hi Katkin,
You are not crazy or alone. What would we do without this board? :)
I get disoriented all the time, although I was always directionally challenged, I've been having a pretty bad time of it for the last 5 months. I've gotten lost in my own neighborhood while taking a walk.
It also takes me twice as long to do everything that used to be very easy for me; cooking, balancing a check book, making decisions.... you name it, it perplexes me. I'm fortunate enough to have a pretty laid back job where I can work odd hours and I'm pretty much left to manage myself, so I've been able to get my work done, it just takes a little longer.

And sometimes the anxiety gets the best of me, too. I can stress out trying to tell myself not to stress out. All of this junk is enough to make anyone nervous, we never know when it's going to get better or change, and not knowing is the worst feeling.

I had trouble sleeping/keeping normal hours - I told my primary care physician about it and she gave me some sleeping pills. I'm not too keen to the idea of taking drugs unless I really have to, so I was hesitant to take pills for sleep, but I ended up using them for two weeks to help re-train my body to rest during normal hours. I've been able to get about 7 hours of sleep most nights (now without the pills) and feel a little better than I did about a month ago.
But I'm still waiting for the dizziness and brain fog to dissapear completely...

wishing you unfoggy days,
Cori

Isnt it funny how you worry about the anxiety which then causes more anxiety, its an ironic little circle that I go in.

did u do anything that helped it along ?


Quite honestly, the best thing I did was to press on with my life and go to school and work and just do as best I could all the things I did before I had the inner ear stuff. In some cases, like school and my responsibilities as a T.A. there (which included lecturing when I felt like a total space cadet) there really was not much choice. I needed to get on with things. At times it was difficult, but I did it, and looking back on it have come to feel that by just getting on with it I also was able to take my mind off my health for a time. Mostly the progression to wellness with this stuff crawls at a glacial pace (at least it seems that way), but there were days where it was not as bad as others, and then it sort of becomes a part of you in a weird way. You know the feelings/sensations are there, but you manage to function in spite of them. Then the number of good days start to edge out the bad ones.

Just keep on keepin' on. That's my best advice.

Good luck
T

schao:

Aww I'm so sorry that you have to feel disorientated much of the time too and even had to leave your job :(
I have also had to cut out lots of "normal" things in my life 'cos I feel so weird most of the time (including like you, stopping driving) .
I currently force myself to go to college and drag myself to work in taxis and with the help of friends.
Yes I also get weird things with my vision, not a floatery thing though I don't think.
They didn't know what I had for ages but seem to think it's BPPV now. I think that yes it is either BPPV or MAV.
I wish that something did help my foggy headedness - hmm I find that sometimes sunglasses help a little - used to feel their benefit more than I do now though I think.
I read somewhere on here that when visual stimulation gets too much you should close your eyes for a rest for maybe 15 minutes and that sort of re-sets your brain and helps you not feel so bad. Hope these might help you!

unadventurous:

Yes!! This board is such a life-line, really.

Aww you poor thing that you got lost.. how? This is my one of my fears, that I wouldn't be able to find my way home because I felt so odd or whatever.
I can really relate to the trouble keeping normal hours - I'm glad you're a bit better at it now well done! I'm trying...eep, it's hard when you're scared to go to sleep for fear of waking up dizzy or disorientated though isn't it?!
Yes anxiety is a major and difficult part of this, as you can see (well, read) ^ the whole thing has affected/is affecting my life greatly.
Although the swooping dizziness has improved and happens less frequently, the feeling bizzare and resulting anxiety has gotten worse.
It's even worse leading up to a dizzy "attack" and I have had 2 mild (compared to how they used to be) attacks in the last couple of weeks.
It's so annoying - when I was desperately poorly with the dizziness and couldn't even hardly turn my head sometimes, I could still do things when I had other people around and still travel places in the car and go places. Now I just feel like I can't feel ok anywhere but home.
It's so hard. I was meant to go for my ENT appointment tomorrow but it would have meant travelling an hour or so in the car, and even though my Dad was taking me I just couldn't face it and managed to get myself a phone appointment instead. The memory of one of the last times I went and felt really horrible like I was viewing a dream or memory just kept cropping up. As did the thought "well if you're finding it a major struggle to go 10 minutes up the road to college or 5 minutes to work, how will you cope with that stressful journey?" I feel like such a pathetic failure because it's such an effort/feels so bizarre to do normal things. Yesterday I even felt odd, with my friend, with my dog in a shop JUST across the road :( Maybe it's compensation and I have other junk to deal with now the dizziness is changing?
Also I can sometimes hardly bear peoples company in my flat as it makes me feel weird. I guess I'm used to lookign after myself and having my flat how it is without anyone else around.
Thank you both so much for re-assuring me that I'm not alone, I just feel so bizzare sometimes and like I am feeling weirder than I have read that other people do, and I think "can this can't really all be down to a balance disorder?" - but I suppose it can!

Sorry for long post! Just 2 more things!

I sometimes get a thing where I'm out and I feel normal for a few minutes/half a minute or so then weird, then normal etc almost like I lose my "focus" of feeling ok. Does anyone get this or know what it is?

And the other thing was -

I was reading through the links in Scotsman's (very helpful and informative) sticky post, and I read an article on MAV. It said that sufferers of migraines can get a "decreased level of consciousness" - do any of you know quite what this means?


Thank you very much
*healing hugs* please let's get well soon!!!

Katkin xxxx

wow you guys are just like me.
i had a heck of a time with direction! it took quite a while for it to come back. it still goes out from time to time but on a smaller degree. i was on my way to school early in the morning about 2 weeks ago and while on the bus, thought i had missed my stop. i had no idea where i was for a good 30 seconds until we hit a main street. very unnerving!

treefarmer, how long until you felt better? i'm in school right now too for electrical engineering and am always freaked out about zapping myself. i tend to zone out (like all of us do) and have this reoccuring fear of grabbing a live 240V line. i guess that fear is the reason i haven't done it yet. any good study tricks?

i get floaters too. i think their normal with inner ear problems.

Katkin, if your getting slightly normal spells, i'd assume it's good. i was at work in the summer and had a normal spell and it freaked me out! i was so shocked by it i wanted to feel foggy again. :rolleyes: i guess i've adjusted to feeling lousy!

Katkin -
Don't be too afraid of getting lost... I live in a pre-fab townhouse kind of neighborhood where everything looks alike (owned by a university), so it's easy for one to get confused, especially in this state of health. On my way home I saw a laundry room that looked familar (it turns out all the laundry rooms look the same), so I tried to take a short cut and it ends up I was all turned around and on a whole different side of the neighborhood and kept walking in the wrong direction. It added about 20 minutes on to my walk. I think the scariest part about it was that I couldn't get my bearings straight and that set my anxiety off. The reality of the situation was that anyone who lives in the community would have been more than happy to point me in the right direction, although they probably would have thought I was drunk...
On the positive side, I found a new laundry room that doesn't get a crowded as the one I usually use!
I sometimes get that focused and then unfocused feeling, I call it "fleeting moments of normalcy". It usually happens to me in the middle of the day, when I'm tired or bored with what I'm doing. I'm finding that the more active I am or when I'm doing things that use a lot of my concentration, the better off I am. I still long for the times when I could find fun in almost anything...

*healing hugs* out to you, too!
- Cori