The Lupus Forum banner

Dizzy from CNS or SLE lupus

468 Views 8 Replies 8 Participants Last post by  cath

I have been having increased bouts of diizzyness. I went to an ear nose and throat doc thinking it was sinus. Sinuses are clear. Had xrays

It began at night and now it hits any time. I do have CNS lupus.

Does ayone else have this problem?

Thanks Elaine
1 - 9 of 9 Posts
I often get this way too. I will have to stop walking and hold onto something when this happens so I don't fall down. I have never been told that I have CNS lupus. I was thinking maybe it was the meds but it happended quite a bit before I was dx'd too. I forget to mention it to my rheumy when I go visit him. Maybe I will next time. :)
Hi Elaine

I also get the dizzy spells, were I have to stop, or grab something or sit down, usually before I fall down. Sometimes I have to lie down (last time was on my wedding anniversary:mad:). I often get it when walking and it sometimes feels like I am following myself down the street.

After the last really bad attack they sent me to the ENT specialist who ordered an MRI. I am please to say I still have a brain although at the moment I think it lives permanently under my pillow :rotfl:. The thought initially my was due to menieres but as there is no hearing loss (yet) they have not diagnosed it. So I will have to wait and see what transpires.

Go see your doctor or Rheumy and discuss it with them but make some notes first and take them with you.

Claire xx
:hehe:Hi Elaine, I am sort of stumped as to what to say. I have had
several bouts with dizziness over the years, but if it lasts more
than three or four days, I call my Rheumy, sometimes my pharmacist
first. I have been lucky in the fact that each and every time it has
turned out to be my meds. One of the meds reacted wrongly to the other
med, thats all, and they just switched me to another med., and all
was fine. I hope that you find out that this could be your case. But
no matter what, call your dr. and have it put on your file. Be well:wink2::rolleyes:
Hi Elaine,

I get bouts of room spinning dizziness also. They almost always relate to increased cns activity. After realizing there was a pattern my rheumy is very quick to react when it happens for more than a few days now.

Have you taken anything for it?

Take care,
Your not alone.

I have CNS involvement and my middle name is Dizzy.:rotfl::rotfl::rotfl:
HI Elaine,

Me too, although it is not to bad at the moment:blush:. I saw an ENT doc for it and was found to have a ballance disorder - not sure exactly what as I've not yet had the specialist testing they promised, but possible autoimmune inner ear disease. It can happen in conjunction with SLE.

If it persists it would be worth going back to the ENT for more investigations.

Apparently the treatment is steroids and or immunosupression.

I believe CNS isssues can present in the same way, so this is also a possibility.

All the best and be careful

See less See more
i also have a lot off dizzines it can last for about 3 4 days were i cant lift my head off the pillow thats the worse.but the rest of the time its just bouts were im walking and have to grab hold o something.CNS what does this stand for.
Hi Bridie,

CNS stands for central nervous system.

For some people the central nervous system (aka the brain and nerves) are affected by lupus. Mostly when we talk of CNS lupus it is the more severe stuff such as strokes, vasculitis, siezures and psychosis. Lots of people with lupus get very mild CNS symptoms like migraine headaches or mild confusion, but this is mostly not classified as CNS SLE.

Hope this helps,

1 - 9 of 9 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.