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Discussion Starter #1
Hi all ;)

For over a year now ive been having these weird feelings, like im off balance/dizzy :hehe:, i dont mean like spinning dizzy. Its hard to explain but it feels odd and almost like im about to pass out, when i walk i sometimes veer to the left and right and cant stand walking in areas where there are aisles like at the supermarket. Its also worse when ive been in a car and when i wear sunglasses?!? 8)
Have you ever been in a stationary car when a car next to you moves and it makes you feel really odd/dizzy? it like that sort of feeling?!?
Sorry im rambling on now :lol:
Any of you lovely people know what i mean? how do i get rid of it? its horrible.

Thanks for reading, i be greatful of any tips/advice ;) x x x x x x ;)
 

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Discussion Starter #2
ooops forgot to say that also sometimes my hands/legs dont feel like they belong to me, kind of disconnected!? :hehe:

x x x x x x x x ;)
 

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Hi Ocean

I know that feeling and have had it for a long time but now it is easing off. I get to traffic lights and stop with the car except i feel as though i am still moving.

Did ask the docs about it and they prescribed some dizziness tablets for it but they made it worse. To me it seems as though its something to do with my eyes as well as head. The docs checked my ears as well but nothing was found and they didn't know the reason for it.

Can't help any further but it is a horrible feeling and don't wish anybody to have it. Hope it goes away soon.

Best wishes
Bessie
 

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I get this at work sometimes. I try to sit and close my eyes (as laying down is not a choice). I will also get some water and try and make my way outside for some fresh air. It is almost as if you are not getting enough oxygen to the brain. You can feel it coming on all you can do is ride it out and hope you are still standing at the end of it. I have sleep apnea and wonder if it is not related to that. I have not said anything to my doctor as I have enough meds already and have no plan of yet adding another to the list.

I get a funny smell with mine like stale air or musty air. Do you get that also? I wonder if it is some type of vertigo going on with us?

I hope you feel better as I know it can be bothersum, and that you are doing well soon.
 

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Hi Ocean,

All new symptoms need to be told to your doctor. You never know how it might help your treatment that you get.

With what you are saying I would suggest that you go to the doctor and get it checked out. Even if that means another pill to take. You need relief from this new symptom and need to find out the cause and why it is happening to you.

Take care and let us know how you are doing.
:hug:
Lyn
 

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I have been where you are Ocean when the Lupus is out of control. It can be very scary when you have these sensations. You should definitely check with your doctor.

Take care,
Lazylegs
 

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i have to echo what lazylegs says, ive bene there too, still get off balance now but nothing to what it was, see gp. good luck


Lin x
 

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Hi there,

I will echo what the other say and recommend you go get it checked out with your MD. There could be a myriad of reasons and only your doc can narrow it down. For some there might be an easy fix or explanation, for others it can be a sign of disease out of control and possibly affecting your nervous system. You won't know which until you approach your doc.

:hug:

love
Lily
 

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Discussion Starter #9
Hi all thanks for your replies ;)

For those of you that have experienced these dizzy/off balance feelings, how did you cure them? I have mentioned the feelings to my Rheumy before, but struggled to expalin what i meant :blush: and he just sought of brushed them off.
I see my rheumy again in about 2 weeks so i'll definatly mention this again, and hopefuly he'll do something to help figure out whats going on.

Thanks again,
x x x x ;) x x x x x x x
 

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I describe mine as a feeling "as if I have drunk a glass of wine but haven't"

I tend to lean to one side and keep misjudging where the door frame is, falling towards the dog or a person walking next to me, that kind of thing. Not head-spinning dizzy but, out of sync.

I feel "wobbly" when it's like that, don't know if it's the same as you...

Katharine
 

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Thank you for this thread. I too have started having strange vertigo ish sensations and wasn't sure whether to mention it or not.

Hope you get some relief soon.

Wendy
 

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I would definately suggest that you mention this to your rheum or Local Doctor. I had similiar feeling like I was gonna faint and very dizzy, even worse wehn I got up from a chair, thought it was verigo. Had some blood tests done by my G.p , turned out I was lacking Iron, been on tablets a month now for the iron and it has helped. Let us know how you get on.

Wishing you all the best Sheila x :)
 

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Bex,

As I said in chat earlier this afternoon, get your bloods run for iron, b12, serrum iron and ferratin. Lacking in one or all of these can cause your symptoms plus the excessive tiredness you have been suffering.

If indeed it is down to any of these deficiencies then its easy to sort.

Fingers crossed it wont be anything more, but see your GP and inist of the bloods being drawn.
 

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another thing when this happens, get pen and paper write it all down then when you go to rheumy, say here this is how ive been... we are not dr's it could be lots of things going on, i hope you get somewhere with them


good luck let us know Lin xxxxxxxxx
 

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Sometimes it is just a fleeting moment that I get a dizzy sensation, not vertigo. Other times it is like the things around me are coming back and forth towards me. Before I had my cane and walker I would find myself grabbing at air to try to stay in balance.

Mine is due to the central nervous system so getting the disease under control is my fix.

Take care,
Lazylegs
 

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Finally

I was just trying to find some sort of information that could help me understand what has been happening to me. I googled lupus and dizziness and found this post.
It is me, I don't know what to think. Right down to the smell that is mentioned, I have been dealing with this for sooo sooo long and when it starts up it really finishes me. I cantake all kinds of pain and fatigue but this is just the worst.
I am thankful to have found the post for at least now I don't think I am losing my mind, it just has to be the same thing and lupus related, but i sure wish there was something i could do about it. I can't even think when this is going on.
Right now my Mom, a late stage cancer patient needs me and I Had to stay in bed one day it just about killed me. I also ned to keep on top of her symptoms and care for her.
Does anyone know just what this is and how to stop it?
I am on MTX since Oct and was so thrilled with the way I felt, almost too good, but then this started last week and I know because I have been there before that it is just going to floor me. And for so long it seems sometimes for months. Can anybody help? Thanks Sandra
 

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dizzy

Hi, yes, I get this too, been getting it for over a year. Was sent for neurologica.l tests, nothing found. Then when diagnosed with RA told them too, just look at me as if I was crazy!!
Now waitng for tests for MCTD/lupus too. Exactly how its described here, veering off, my daughter was nagging me last summer when we were on holiday, and I told her I couldnt help it. I get dizzy in the shower too, and have to hold on. No one seems to take it very seriously though, so no answers. Good luck
 

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Dizzy but not dizzy...

I think I know exactly what you are describing (and you said it well). I first noticed it over 10 years ago, a lightheadedness that became worse on standing and walking, an off balance feeling yet I never stagger when walking just an awful feeling, very disconcerning. I did see a neorologist and had tests that were did not find anything but that was before PET scans which I am considering. What I did find helpful was a small dose of xanex which seemed to either stop or at least lessen the feeling when it was at its worst. I will follow this thread and see if other have suggestions. My Rhumy has suggested a short stay on Predisone but I would rather not if I can get by without is. Some days are better than others and I am always thankful for that good day. Good luck!
 

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I too have been suffering these symptoms on and off over the last year. I had balance problems, particularly when I closed my eyes in the shower. I also had a tendency to veer off to the right and even fell over on one occasion. I mentioned this to my GP, a neurologist and my rheumy, but they all just stayed silent afterwards, making me feel that they were thinking I was mad! It is such a relief to hear of others experiencing the same problems. Things seem to be ok at the moment. I don't know if the symptoms will return - I hope not!
 

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I hope and pray that your mild vertigo stays mild. Mine started that way and I have now been two solid weeks vomiting, not to mention the walls have turned into a terpsicordian carousal.
I wonder, had I tried Gravol before this got so serious, if I could have shortened this rather hellish flare.
All the best.
Douglas+
 
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