View Full Version : Vertigo

07-24-2006, 12:33 PM
Read on another post about 'walking drunk'... I have a big problem w/vertigo (24/7, I'm one quick move away from nausea and toppling!) and also a tremor. I asked my rheum (very much a standout in field) if it's a normal part of SLE and he said no. I asked him should I get tested also for MS and he said no.

Anyone else had their doctor explain this to them, and especially what HELPS?? Vertigo is worse in strong light and tremor comes on in the heat.

07-30-2006, 12:52 PM
Anyone experience this? I'm trying to figure out if it's sle, or infection or ...?

07-30-2006, 04:18 PM
Yes, I have experienced it over the last year, noticing that the episodes are happening intermittently. As my rheumatologist and I research this, the doc thinks it may be somehow related to CNS lupus/cerebritis (?)....there is so much to learn with this disease. I believe that the doctors are learning that the symptoms of lupus are so far reaching; that are now more willing to listen to our complaints of symptoms where as before it was easy to be dismissed as a "whining". I have visual problems as well, not being able to focus and then double vision.....so I'm REALLY looking like the drunk (smile).

I suppose we can take a humorous attitude (aside from being scared spitless about what's happening and why)....that we can have all the appearances of "having tied one on the night before" without the hangover (smile).

We're all in this together. So hang on, be strong - we're here for you...and thanks for sharing.


07-31-2006, 09:20 AM
Humor - yes what would we do without it. About a year into my thing, and feeling pretty down, all of a sudden my humor returned to me. I went about a month laughing constantly... I'd weave down a long hallway in my home, bumping into one wall then the other then the other... and I said wait a minute - think of all the money you'll save in whiskey! bwaaahhaaahaaa!!! Then I'd drop my car keys five times in a row and say, Hey, it's like starring in my own Buster Keaton movie!! bwaaahhhhaaaahaa!!!

05-01-2012, 06:53 AM
Guess the saying is true, "misery loves company". SLE Lupus et al for over 20 years, but first vertigo episode awoke me at 4am two years ago. I literally crawled to the phone and called my mom to tell her I thought I was having a stroke. ENT told me what I had already suspected he would, it was either another face of SLE Lupus (CNS) or yet another autoimmune issue (autoimmune inner ear).

History, I have always been a little clutsy--running into ways, falls for no reason. Also have had severe intermittant pain in my left ear for no obvious reason--no infection. Ringing in both ears started around the time I was diagnosed with SLE Lupus. As of two years ago, board-line need for hearing aide in both ears.

Major vertigo--spinning, nausea etc-- is definately intermittant; increased steriods gets me back on my feet in a few days. But there is an underlying unsteady (the drunkness some are calling it) that seems to be a permanent feature since this symptoms onset.

And that is just my 'ear' symptoms. lol I am one of the fortunate SLE Lupies, in that, most of symptoms are aggravating as heck, but have not been life threatening. ~knock on wood~

Welcome any news about what has helped or what your doctors have thought.

05-01-2012, 10:50 AM
Hello all,

I have battled with vertigo on and off my entire life. However, I have only had it really bad one time where constant spinning lasted over 3 days. When I went to the doctor during this episode they said that it was likely caused by a viral infection.

I've done some reading about Autoimmune Inner Ear Disease (AIED). I have always thought that the vertigo is related to an inner ear issue. I don't know what the tests are for AIED, but it might be something to look into (Tammy did your doctor perform any tests?) I think I might try and see an ENT and I would recommend the same. I also experience wooshing noises in my ears once in a while as well. Has that happened to anyone else?

I also just started having sporadic tremors. It has really only been noticeable and bad once. However, my brother has had a horrible neurological tremor his entire life.

It can't just be one simply thing, right? :)

05-01-2012, 11:10 AM
Tadpole, ENT ruled out positional vertigo and ran hearing test, but not an MRI. He felt it was Lupus related because it responded to increasing steriods, thus he stopped short before an MRI.

As I'm sure others have experienced this frustration also: because SLE Lupus is systemic--can affect any organ/tissue--SLE Lupus gets "blamed" for most symptoms, once you are diagnosed. Much of the time this is an accurate assessment, but sometimes it is not.

ENT does have me on a steriod nasal spray and an oral decongestant when a major vertigo episodes presents.

I found the comments about vertigo/inner ear could be related to allegeris. I have dark circles under my eys and on the side of my nose, which a google suggest are caused by allergies too.

diane 50
05-01-2012, 09:11 PM
I had vertigo back in October it was just awful it lasted for about 2 months I learned the therapy and it did seem to work but at this time I had no idea that I might have had Lupus I just was diagnosed about a week or so ago. I had so many signs and after being diagnosed there are so many things I went thru since I was 14 y/o It all makes sense all the little things lead up to bigger things Lupus and I have to say Vertigo I hope never to have that again I also thought I was having a stroke, there was a few times that I couldn't move my leg and arm and it was all right side numbness dizzy sick pressure in my head was the worst.

05-02-2012, 05:28 AM

I have intermittent, tingling/numbness on my left side. Face is usually persistent, but mild tingling. Limb numbness (severe "going to sleep") is debilitating, but passes within 15 minutes.

I've never associated these with the vertigo symptom, but suspect it is part of the SLE Lupus/autoimmune package.