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vertigo anyone?

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Posted 5/9/2007 9:56 AM (GMT 0)
hi all!

i have had problems with balance and dizziness for some time now but it has really progressed over the past few months and most especially the past few weeks!  but...since sunday it has been continuous.  i also get terribly weak during these "episodes" (i already have myositis) and the intensity of them seems to increase when i am flaring.  i went to my primary monday and she told me that it was most likely bppv (think that's right?  anyway, the short of it is vertigo).  she is referring me to a neurologist for another assessment and/or treatment unless he feels it could be attributed to something else since i have lupus.  i was given some medication to ease the nausea and the dizziness.  i am wondering if anyone else has had any problems with dizziness due to lupus???  thank you in advance for your replies.

thank you,

e

Posted 5/9/2007 10:28 AM (GMT 0)
Morning e!

I too get dizzy and have no balance whatsoever at times.  I never attributed it to the Lupus, but who knows.  Mine don't go on for days - it is usually gone when I get up the next morning.  Last night, I'm not sure what was going on - I was totally shakey and felt very off (like I could drop at any minute) - not the exact same way I feel when I suffer from the dizziness too but kind of along that line.... oh the joys of our mystery ailments....

It's only happened a handful of times to me so I'm probably not much of a resource but thought I would let you know that someone else does go through that....

Have a Great Day!!!

Posted 5/9/2007 10:39 AM (GMT 0)
e,

The only time I got the vertigo thing was right before my one and only flare. So, I think of it as a warning sign but, like sands, mine doesn't go on for an extended time. I do have polymyositis as part of my MCTD thing so maybe folks like us have a vertigo connection.

What meds are you one? Maybe one of them is causing a problem.

Hope you get some insight.

Stay Strong,
Sue
Posted 5/9/2007 12:38 PM (GMT 0)
Oh yes! sometimes it is so bad I feel like I've been on a good drunk only I don't drink! It even hits me when I'm laying down. This is the reason I stopped drinking yrs ago & now I do this & haven't drank for yrs! about 2 yrs ago I was real dizzy & fell down my stairs in my house, I started at top & went to the bottom!
Posted 5/9/2007 3:40 PM (GMT 0)
I had vertigo for a few months YEARS ago and took antivert for it.

In recent months I have had the same vertigo feeling on occasion (the room seems to spin around me and I need to grab something or I fall down). I haven't bothered the doctors with it yet but am adding it to my list of things to discuss.
Posted 5/9/2007 11:31 PM (GMT 0)
Hi e,

  My balance has been messed up since lupus attacked my equallibrium in 2000. I loose my balance all the time but, I'm alot more aware of what I'm doing now because I have fell so many times in the past. I hope I never get pulled over by the cops...I would never pass walking the straight line test or tilting the head back with my feet together...lol.

  I'm glad your getting this checked out by a Neuro soon. There's alot of different things that can cause balance or dizziness issues. It sounds like alot of others have this problem too. I hope you all find out whats going on and get some relief soon.

  Let us know what the Neuro says and be careful. You will be in my thoughts and prayers.

                                                                       Babs

Posted 5/9/2007 11:37 PM (GMT 0)
e, I have a Neuro appt on Monday for the same thing (dizziness and off focus). Let us know how it goes and I'll do the same.

Take Care
Posted 5/10/2007 2:08 AM (GMT 0)
I have been pulled over & asked if I have been drinking!!!! Talk about embarassing!
Posted 5/10/2007 2:40 AM (GMT 0)
Hi E:

I've had several cases of vertigo, and I think it's been related to my lupus. During a really bad flare in 1998, my vertigo was terrible. It lasted for about 4 months, I couldn't bend over, roll over in bed, w/o spinning. I hope that you begin to feel better real soon. I know that vertigo makes you feel really sick (((hugs))).

Take care,
Barbara
Posted 5/10/2007 3:55 AM (GMT 0)
hi everyone!

thank you all for your comments!  oh my gosh, i am so glad to hear from so many with the same thing.  i thought for sure i was losing IT this time!!!!  i will lose it if i try to address each one of you individually but your stories are all too familiar.  yesterday, i had to drive myself to the doctor and i kept thinking about how i was going to get out of jail if i got pulled over, LOL!!! 

des, please keep me posted on what your neuro has to say.  i have to wait 5 days before i can make the appt.  was this a gradual thing for you or did it start suddenly?

babs, how did it come about for you?  and how did they find out it was related to lupus?

4 months barbara lee?!  as if you needed that on top of everything else...i know you have had the worse time and i really am at a loss for what to say about it.  but...i do want to say that you are so kind to lend your support to the rest of us!  what a strong woman you must be.  i barely have the strength to read posts anymore and my problems are relatively mild in comparison so...thank you.

sue, no new meds so definitely not the cause.  you are so lucky to have only had one flare to date.  it must have been pretty bad though for you to get a diagnosis?  hope you stay feeling good for a while.  this is a tough disease to live with!  i have had a lot of stress in my life recently and seem to have "overlapping" flares.  it will get better though, i just know it (i am divorcing the stress, LOL!).

well all, the pcp i saw monday offered me up antidepressants and actually before she could even get it all out, i was shaking my head emphatically, "NO."  i couldn't believe she had the nerve to finish her sentence and then the impudence to bring it up again before i left.  this because i was crying because the room wouldn't stop spinning for 2 days, throwing up and no sleep!  i swear these people never get it!!!  i actually felt sorry for her, LOL!!

thank you again to everyone!!

e

Posted 5/14/2007 3:14 AM (GMT 0)

hi again,

the vertigo and unsteadiness (which has become more of a swaying back and forth) is not getting any better.  i take antivert but i think i need something stronger.  i have 4 children, 3 under 5, and i cannot take care of them like this.  i am going to call the doctor tomorrow because i can't even drive to get food and my cupboards are empty.  anyone here had to take something other than antivert to keep the "dizzy's" away?

thank you

e

Posted 5/14/2007 10:45 AM (GMT 0)
hi bella4, sorry to hear your not feeling too well, i myself had a horrible event while at a family get together, and have not quite got over it, in fact had another funny turn this morning so i am staying home today for fear of hurting myself or breaking something, i think the worst thing about this system is that it comes on so suddenly and when you least expect it, hope you get some relief soon. warm wishes
Posted 5/14/2007 3:41 PM (GMT 0)
Hi bella,

I was taking antivert at a time and all it did for me is knock me out. I actually had to cut them in 1/4ths to even function and even then it did not help with the dizziness very much. I think it works more with people that have vertigo due to inner ear problems which I think for me (and sounds like you too) the dizziness is more due to the nervous system. I do have my Neuro appt today and anxious to discuss with him about my symptoms and I won't forget to let you know how it goes. Hopefully he can give me some hope (and I can pass the hope on to you :)

Take Care
Posted 5/14/2007 8:25 PM (GMT 0)
Hi bella,

I just got back from the Neuro and I explained all my symptoms to him. He had three things in mind given my symptoms which are: Complicated Migraines, Complex partial seizures, or Multiple Sclerosis. That of course is without any testing yet. They took blood and he wants me to get an EEG and a MRI w & w/out contrast. I'm kind of overwhelmed right now about all of this and I'm not sure what to think. It's definitely a start but I sure don't want to go through the tests. I hate these types of tests :( I am so frustrated, I just want all of this to be over (all the testing and poking and prodding).

I hope you can get some answers or at least some clues from your appt.

Take Care
Posted 5/14/2007 9:21 PM (GMT 0)
Hi Bella,

   I still have problems with my gait/balance. It's alot better than it use to be but, I still have no balance in water and at night. My head also bobs around when I'm driving sometimes. I don't trust myself to drive very far at all. I still stumble around a good bit and sway from side to side.

   The way my Internal Medicine doctor explained it to me was just behind the lower part of the ear is something, (I can't remember exactly what it was called), that has something to do with the equallibrium. When it attacked mine it was over night. I went to bed fine and woke up and couldn't even raise my head. The whole side of my head was pounding in pain for 3 weeks. It was 3 months before I could even sit up by myself. By the 10 month, I could walk some with a cane and slowly got a bit better over time after that but, I have hearing loss in my left ear and constant ringing as well.

   I hope you got in touch with the doctor today and can get some relief soon..((Hugs)). Actually, Valium helped me more than anything else with the dizziness/balance issues. It did make me sleepy but, I could walk better and had less lightheadedness. It also helped when I was having seizures...go figure!

Des,  (((Hugs))) Bless your heart! I bet you are overwhelmed right now with that news. I hope you get those tests done soon and get some answers to help you. Let us know what you find out and take care.

    You both are in my thoughts and prayers ladies!

                                                                     Babs

Posted 5/14/2007 9:32 PM (GMT 0)

hi des,

yikes!  that is a lot to take in.  and you were just recently diagnosed with uctd?  what does your rheumy think you lean towards having?  what are your symptoms with the dizziness if you don't mind telling me?  i wonder about the partial seizures because i had an incident where i was driving and my head felt heavy and i felt out of it and i could not stay in my lane (like i was drunk but i wasn't) and i became so tired by the time i got home.  well, i slept for 14 hours straight which is a lot for me because i have great difficulty sleeping.  i was still so tired when i awoke.  but...i am having unusual headaches like my brain is shifting or moving like waves inside my head.  well, the dizziness is a pain because if i don't catch a reprieve from it i get sick to my stomach.  i called the doctor but she wants to see me again on wednesday.  i have my neuro appt on june 8th. 

what a pain!  i hope we both get some answers soon...

e

Posted 5/14/2007 10:07 PM (GMT 0)
Thanks babs and bella... I just got off the phone with the insurance company asking about what my portion would have to be for the MRI and they told me $250 (my deductible) + 10% co-insurance, does this sound right? I may have to wait a bit on this since an MRI runs about $2500 (I think?).

bella, My symptoms with the dizziness starts with a slight headache which intensifies over the course of the episode, I also get disoriented and confused, and I get a whole body tingling sensation (kind of numb), my vision goes out of focus and the dizziness sets in. This is when I have to lay down but even laying down the dizziness doesn't go away but I at least feel more steady, I almost always get nausea because of the dizziness/vertigo feeling however only vomitted one time. This happens for about 30 seconds to anywhere to 2 minutes usually and then the symptoms usually subside slowly. I usually get a bad headache afterwards from the tension that my body goes through during an episode and then I am exhausted.

Even though I get them randomly, I got a couple when I was driving and I kind of felt it coming so I pulled over. That is why I won't drive on freeways anymore, too difficult to pull over if I have to. They have told me everything from inner ear problems to anxiety attacks but my rheumy said I better see a neuro anyways. The Neuro today says it definitely sounds more neurological and not psychological but we'll see what happens. I have panic attacks too occasionally but it is a different thing than this.
Posted 5/14/2007 10:30 PM (GMT 0)
Des,

   Wow, those symptoms almost sound like the seizures I use to have except I didn't have nausea and I would usually pass out or hit the floor if I was trying to walk. When I did pass out, I couldn't remember what happened most of the time.

   I hope you go ahead and get these tests done. The hospital or where your having the tests done should let you make low monthly payments to make up the balance your insurance doesn't cover. Please don't put this off. You need to know whats causing these symptoms and get some relief.

   Hang in there and keep us updated. You are in my thoughts and prayers.

                                                          ((Hugs)) Babs

Posted 5/15/2007 2:31 AM (GMT 0)
I just happen to have the bill from my latest MRI with & without contrast right here on my desk -- before insurance was $3,387 for the hospital and $391 to the radiologist. So that's what it costs in downtown Atlanta, GA. I imagine it could vary a good bit based on location.
Posted 5/15/2007 2:47 AM (GMT 0)
How are you feeling bella? I hope you are getting some relief, hopefully some good rest.

That's interesting Babs, every time I would explain this I would get a strange look from doctors (or at least it was strange to me). To be honest, I was starting to give up on finding any answers to this until my rheumy asked me to elaborate on my dizzy/"out of it" spells and that's when he said I should see a neuro. Your right, I need to get these tests done. I will see what they can work out for me.

Thanks for the info Lynn... worse than I thought lol
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