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anyone deal with dizziness/feeling off balance?

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Posted 9/26/2007 6:39 PM (GMT 0)
I've been battling this for a long time.  I don't get it every day, but for sure a few times each month.  It's not room spinning dizziness, thank goodness.  But just a feeling of being off balance, and when I walk I don't feel confident.  I feel like I'm leaning to one side.  It's kind of hard to explain.  My neuro can't diangose it, and my rheumy isn't sure what it is either.  I've seen an ears/nose/throat specialist and a dizziness clinic.  Both of them say I'm fine too.  I guess it's hard to diagnose when it isn't happening all day every day. It started yesterday, and my period came today, so I'm wondering about hormone levels being the trigger. 

 

When I'm in this state it usually only lasts a day or so and then it's gone.  I might even notice it being better later today.  So I'm just curious to know if anyone else deals with dizziness or feeling off balance.

 

Thanks a bunch!

Ginny

Posted 9/26/2007 7:01 PM (GMT 0)
Hi Ginny,

I know exactly what you're describing -- not room spinning, but I too get that feeling occasionally. Sometimes my body actually moves off to one side when it happens, or I'll go completely off balance and trip over one foot when trying to walk forward. My husband jokingly calls me a spaz. I feel like I'm quite uncoordinated often, whereas I never used to be. I know it's hard to describe, but I do understand how it feels.

Take good care, Ginny.
Posted 9/26/2007 7:12 PM (GMT 0)
Thank you Carrie. Uncoordinated - that's it! Okay, so I"m not alone in this.  I'm sorry you have to deal with it too. It can be very unsettling.

 

I happened to notice in your signature line that you have something called Essential Tremor.  Do you mind me asking what that is?  I have an internal tremor that comes and goes sort of like the dizziness thing.  I feel like I'm tremoring from the inside.  I'm in vibration mode.  Is this what you have?  I've never been able to get a diagnosis or a name for it.

 

Thanks for sharing!

Ginny

Posted 9/26/2007 7:21 PM (GMT 0)
Hi Ginny, I do go through spells of having very uncoordinated movement. It doesn't last long and might just enough to cause a fall or for me to drop things or an almost-fall. It seems to come with my flares and I've taken to using a hiking pole (or two) for all my hiking which has saved me numerous times from falling or twisting an ankle. I also keep those poles in the trunk of my car and when its icy in parking lots, if I can't park near a shopping cart and use that (I use shopping carts as a "walker" too so I don't slip or trip in stores) then I'll use the hiking pole to walk into the store and everyone sees it as a bright idea as opposed to a cane which would give a different response. I'm not at all opposed to a cane, but until I need to use one all the time, I'm happy to camouflage it as a hiking pole and I'm much more likely to actually use it. Sorry you are having trouble with this (again?) and I hope some of the others will know more about it. I always wondered if it was meds . . . but it started before my rx meds did so, I really think, for me, it is part of a flare. You, of course, have the additional component of seizures and tremors . . . these things are so hard to sort out, aren't they. I'm sorry you have SO much to deal with all at once and I hope it just disappears with all your other issues!!! Blessings!
Posted 9/26/2007 8:13 PM (GMT 0)
Ginny, Rosie, and Carrie, this sounds like no fun at all. I have fortunately had no such problems, but I worry that one of you might fall down. I'm a complete klutz and have always had a problem with falling down and now that I've gained weight and become weaker I have to be even more careful to always hold on to something when I shave my legs, go down stairs or steps, etc. Sorry you all have to deal with this.
Posted 9/26/2007 8:21 PM (GMT 0)
I don't know if mine are the same as you all described. Mine usually happens in the middle of nowhere that you feel dizzy (again, not spinning dizzy), but kind of lost your balance and wanted to fall. It happens just a few second and then back to normal. I usually have to lean on something. Becaues nobody sees it when it happens, I don't know if my body actually leaning towards one side, but I really feel that it feels like falling down to one side. I have this kind of things for two years and I thought it's just me.
Posted 9/26/2007 8:24 PM (GMT 0)
I occasionally have the same unpredictable dizziness from time to time. No drs have been able to find any problems. I've decided that it is just another case where Lupus has decided to cause a bit of random inflammation -- this time in the inner ear. For me, it seems to *somewhat* coincide with my hearing being a little off or my vision being temporarily fuzzy. Hope that helps,
Posted 9/26/2007 8:41 PM (GMT 0)
Hi Ginny,

Of course I don't mind you asking me about Essential Tremor, or anything else. I was dx'd with Essential Tremor first by my family doctor in 2002, then by the neurologist in 2003. Specifically, I have what's called a significant postural and intention tremor of the right hand.

Essential Tremor is the most common of the movement disorders -- it's a progressive neurological disorder. But it's called "essential" because it's not linked to other diseases, like MS or Parkinson's. Mine first started with my right hand (and I'm right-handed), but now it sometimes affects my arms and legs too.

It can also feel like internal vibration like what you have described, but I'm shaky on the outside, too. When this happens, like when cleaning the kitchen, it just means that I have to stop and rest.

I have trouble with handwriting often, but I'm very glad that I can still type. I can't use a regular mouse, though; I use the built-in one on my laptop. It also makes applying make-up difficult at times -- luckily I seldom do, ha ha. It's not a problem when the hand is not in use/resting.

It doesn't worry me anymore, but it did before it was diagnosed. I sometimes joke that I can sprinkle sugar on a spoon into my coffee without having to intentionally move my hand.

Take extra special gentle care of yourselves today, everyone!!
Posted 9/26/2007 9:31 PM (GMT 0)
GInny
I have been dealing with vertigo (room spinning dizziness) and mild dizziness and everything in between for a whole lot of years. The diagnosis I was given was migraines. Well, at first they diagnosed me with meniere's, but then a confident neurologist told me about migraine associated vertigo. You do not even necessarily get the normal migraine pain. The same treatments for migraine work for migraine associated vertigo.

Darlene
Posted 9/27/2007 1:00 AM (GMT 0)
Hi ginny--
I have had problems off and on with dizziness and my son does too. If it seems positional (on rising, laying down and getting up) then they told us it is blood pressure related. My blood sugar can get high and I can have dizziness, and when it is low too. Also, my son's epilepsy medicine causes a lack of sodium (many of them as you probably know better than me are calcium and/or sodium channel blockers) and he gets very dizzy from electrolyte imbalance and lack of sodium. He has to eat a very high salt diet, his blood pressure normally, like most teens, is low then the medicine makes it worse. Dehydration can cause dizziness due to electrolyte imbalance, he drinks a lot of gatorade as well as eating a lot of salt, and I do too at times. Also, one last thing I thought of was minear's disease, a balance problem that is related to the ear and fluild or something like that. My mom had that. Also, when my thyroid hormone (synthroid) was too high I got very dizzy. The sun also makes me dizzy don't know why.

I don't know if any of this helps, I'm just a dizzy dame, I guess. May have something to do with your blood being so thin too. Maybe another doc might be better able to diagnose this. Another thing is to test your bp and blood sugar (if you have a test kit) when you feel dizzy, to rule those things out. You may be surprised given the current state of your blood, you are probably having some kind of fluid imbalance, since so much more fluid is going in to your blood. They can do blood work for it. Sometimes they just have to put me on an IV. If you feel really bad or scared, please go to the hospital. I don't think it's anything to fool around with. I hope you feel better soon and will pray for you. Gotta lay down, now I feel dizzy. Oh, the other thing is lack of oxygen due to asthma or poor lung functioning. Then some viruses and infections make you feel dizzy, too. Now I'm dizzy LOL!
Posted 9/27/2007 6:57 PM (GMT 0)
Thanks everyone.  It sounds like a relatively common symptom we have.  I don't have any of it today. That's how off and on it is. 

 

Omega, yours sounds like mine sometimes.  I often get a split second, out of the blue bout of dizziness that lasts literally for a split second and then it's gone.  It's weird isn't it!

 

I've had my ears, nose, throat, lungs, heart, everything checked.  And everything is fine, so this is an anomoly of some sort.  I might never know!

 

Thanks for all the input everyone.

 

Carrie,  that is interesting info about your essential tremor.  My handwriting has gone down the drain over the years. I print everything now or type it out.  My handwriting used to be lovely.  Now it looks like chicken scratching! I don't think I have what you do, but there are a few little similarities with my tremors.  I always attributed the tremors to being on too much prednisone.  So I'd taper down slightly and the tremors would go away.  so that might be my issue.  Thanks for sharing!

 

Ginny

Posted 9/27/2007 8:22 PM (GMT 0)
Hi Ginny:

I too get the feeling of being tilting to one side. I just recently started this feeling. I mentioned it to a doctor I was seeing as this feeling has caused me to fall on two occasions. He mentioned to me that since I'm taking coumadin for a blood clot that if my blood is to thin I may feel light headed when I stand up. They ordered a STAT CT to make sure I didn't have a bleed in the brain.

We're going to continue to watch it and if I don't improve soon, I'll be off to see the neurologist. Don't know if I've been much help but just thought I'd add my two cents worth.

Take care,
Barbara
Posted 9/28/2007 4:54 AM (GMT 0)
Hi, Ginny and welcome back! I'm fairly new here and looking forward to getting to know you better. I did read your post of your allergic reaction that sounded really scary. I've been warned about that "rash on the inside" thing by members of my local support group because I've had many outer rashes in reaction to meds. I just hope you continue to improve. In response to this post, I too have that balance problem. Once last year, it was a problem with my potassium being too low thanks to high doses of prednisone. I do occasionally experience this as you've described even still though. I've really passed it off most times because I do have to walk with a cane already. There have been a couple of things noted by others that I will try to take note of next time this happens. (The monthly cycle and blood sugar levels--both of which could have been in play for me this latest time I experienced this.) I hope you get to the bottom of yours. I guess I'll be working on some new notes to go over with my rheumy. Take care and nice to meet you,
Posted 9/28/2007 5:10 AM (GMT 0)
Hi Ginny, I'm sorry you have to deal with this too on top of everything else. I don't really have that problem. Somtimes I get dizzy from lack of oxygen or some of my meds but nothing like you discribe. You know anxiety can cause some hyperventilating even if you don't realize you aren't breathing right. I really have no clue just throwing out a couple of things. I would diffinently stay on top of things with your doctors though. They may just have to do a little digging harder to get you some answers. I hope you get to the bottom of this before you fall and have more problems
hug
carol
Posted 10/1/2007 3:27 AM (GMT 0)
lol apparently we all fall down :P

i get the same thing, dizzy a few times a month for no apparent reason. for me it feels like when you stand with your arms out and you spin in circles until you can't spin right anymore. mine too lasts only for a day at a time and normally settles down in the evening. i never drank before really, and definately don't now - but when this happens my mom laughs at me because we've deemed them "drunk days" just cause im not coordinated at all and she said i look at things funny like they won't stop moving, i don't notice it, i'm in big trouble if my sense of humor ever goes away lol. anywho i think im going to stop posting because im tired and im not sure im making sense anymore :)
Posted 10/1/2007 3:57 AM (GMT 0)
Ginny,
Over the past couple of years I've noticed that my balance isn't what it use to be. Where I seem to notice it the most is when I'm in the shower, or if I'm standing and putting shoes on. I never really thought much about it till you started the post in here. I don't get room spins but the feeling of being off balance can be quite annoying. I make sure that I have hold of something when I'm lifting my feet and don't turn around too fast in the shower. I wonder how this is affecting us? I don't think it's my meds, I think it's the lupus.

Post Edited By Moderator (Lynnwood) : 10/24/2007 2:34:11 PM (GMT-6)

Posted 10/1/2007 4:12 AM (GMT 0)
Wow, ladies, this is a major issue for all of us isn't it!  I had no idea it was so common.  It MUST be the disease or the meds.  Maybe both.  During my remission years, I was still on all my meds, but my lupus was dead quiet.  I was still experiencing this dizzy/off balance thing.  I've always wondered if my stroke had something to do with it....

 

Well, the standing in the shower thing rings true with me too Gidget. There are some days when a shower is impossible.  I have to bath instead.  The last time I was like that was immediately following my drug reaction.  But I've had that a lot over the years.  My balance is way worse than it used to be too.

 

Thanks everyone for the continued advice, understanding and stories.  It all helps us to know we're not alone!  Although I don't wish this upon anyone!! :)

 

Ginny

Posted 10/1/2007 4:23 AM (GMT 0)
I thought of one issue that may affect all of us as well. When we lack the exercise of a normal day, our core muscles (abdominal mostly) start to get weak. Weak abdominals is one of the major causes for falls in the elderly . . . so if we are already compromised by various inclinations to topple, the lack of core strength will certainly make us more likely to actually hit the floor. I've been trying to work on my abdominals with even simple exercise like holding in my belly intentionaly while watching TV, driving, walking etc. Pretend to nail your naval to your spine and it is a good beginning to strengthening even when you can't get down on the floor to do crunches. The crunches, of course would be great to add . . . but if good intentions fail, the other is a bit easier to fit in. Blessings!
Posted 10/1/2007 3:52 PM (GMT 0)
That's great advice Rosie, regardless of whether you have the dizzies or not!  Core strength can only improve our backs and keep us nimble and pain free.

 

Thanks Rosie, good info!

 

Ginny

Posted 10/4/2007 2:40 AM (GMT 0)
I have a problem with frequent falls myslef. I walk funny most of the time, I seem to walk in an angled line instead of a straight one. I have balance problems as well. I have a symptom I did not notice anyone else bringing up. There are times when I hear a roaring sound similar to the ocean, they also ring, and I get really dizzy and nauseated when this happens. My rheumy said it sounded like meniere's, I will have to have a bunch of tests done to see if this is the problem. I wonder if perhaps this might not be part of the problem for many of us. Hearing issues, dizziness, feeling of fullness in the ears, and hearing a noise when there isn't one (sound varies by person) are the 4 major symptoms. The problem affects balance and can cause nausea and vomiting. I hope this helps at least one person.
Posted 10/21/2007 12:00 AM (GMT 0)
I know this thread is from several months ago, but I found this board when searching google for Plaquenil and "dizzy spells".

I was recently diagnosed with both Lupus SLE and Sjogren's. I began showing signs of Sjogren's about five years ago (I just thought I had a dry mouth from having had moved to Colorado into the desert climate!), but the Lupus symptoms (fever, tiredness, hair loss, rash, etc) appeared in February of this year. Or so I thought.

I actually have been having dizzy spells much like what everybody has described here (kind of like the room is spinning, but not quite...I feel like I'm going to fall over, but I won't...I just generally don't feel "with it", and the feeling generally comes as quickly as it goes) for several years now. They get significantly worse for maybe a week or two and then they'll go away. A few months later they will come back again- I've been having them again as of late and I was wondering if the Plaquenil was causing them. But it must be a symptom of Lupus since I've been dealing with them for so long! I'm fine when I'm walking, but occasionally when I am just standing or even sitting I will get them. It's like I'm almost on the verge of a full-blown dizzy spell, but it never quite happens. And then when I go to sleep at night the room spins for a few seconds.

Very, very, very interesting. I am new to posting to this forum, and I just want to say hi and I'm relieved to read that I'm not the only one going through this stuff...
Posted 10/21/2007 1:29 AM (GMT 0)
Hi Hairspray!!! Another welcome to the forum. Sorry you are having to deal with the affects of these diseases. I have found that the falling/near falling seem to coincide with disease flares. As I said above, I have been working a bit on my abdominal and back muscles and I seem to recover better from the near falls. Glad you found us . . . its a great bunch of members here . . . I think you'll make some good friends and get and give some helpful info. Blessings!
Posted 10/21/2007 1:31 AM (GMT 0)
Hi Hairsprayed,

 

Great name!! Welcome to the forum.  Although, it's never nice to have to welcome someone here.... I wish none of us had to live with lupus.

 

The dizzy spells are awful aren't they?  I was so relieved to hear how common it was too.  I just got through a mild flare up and I haven't had the dizziness or off balance feelings for about 10 days now.  Thank goodness.  I also get the feelings when I lay down sometimes too. 

 

If you ever get a full blown room spinning dizzy spell that makes you fall over or throw up, get to a hospital ASAP.  That is a very common symptom of a stroke.  I had a stroke in 2002, and that was one of my symptoms.  I had a stroke due to the APS that I have. Antiphospholipid syndrome (lupus creates a protein in the blood that makes the blood thick and sticky).  For about 75% of people with lupus.  Have you been checked for that?  Easy blood test to find out.  Could save your life.

 

I look forward to getting to know you better!  We're a great bunch of supportive women and men here.  Any question is valid!

 

Ginny

Posted 10/23/2007 9:25 PM (GMT 0)
I have the dizzies too. When I get mine though I feel like I'm not getting enough air yet I'm breathing fine but feel like I'm going to pass out.


Ginny do you have any more info on aps my docs are calling it hughes but about all I can find on it is what it does during my pregs. I know that in 2005 I got a huge hematoma that just would not go away very painful and nothing helped I finally had to scream at them to drain it after 2 months of suffering.
Posted 10/23/2007 9:47 PM (GMT 0)
Hi Ginny,

Mother of Sarah, the newbie with CNS Lupus,SLE,APS. Sarah has been off balance for some time. We thought and she thought it was because she was a klutz. Little did we know it was part of her CNS Lupus when she was in a very serious flare that was one of the tests the Rheum and Neuro specialist did on her, walk in a strait line, close your eyes with your arms outstretch, what ever test to check balace she would start to fall.(she looked like a little drunk) She still has some balance problems but she is somewhat better.

Meds aside her balance was caused by the Lupus
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