The Australian Sjögren's Syndrome Association
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Does anyone else have problems with dizziness/lightheadedness?

I have been suffering from frequent, sporadic lightheadedness, that the doctors have no explanation for. It comes on for either an hour or two or the whole day at a time and has only gotten bad enough to really mess with my balance a couple of times. My blood pressure is normal, and I have had a cat scan, MRI, ECG and other tests. It's not too incompasitating but I do find that I can't think very clearly when I get like this and I could not continue to work in customer service with Superannuation because I really struggled to communicate clearly enough with people. At first I noticed this happening mostly once a month and then all the time when I was pregnant and now it seems to just be any time.

Doctor does not seem to think that it is SS. Has anyone else had symptoms like this?

5 Replies

Could be neurological symptoms of SS. And/or B12 deficiency?

Does seem to be a hormonal component too, doesn't there? But can't comment on that.

Have you been tested for Hughes/APS as well as SS?


I will take some B12 and watch my symptoms as I have not been having any sups resently and it has come back after a while with out the lightheadedness, and I was tested for B12 levels a while ago when I was not having this symptom and my levels were fine.

I have suspected a hormonal link but the doctor didn't seem to think there was. Maybe my hormones drain Vit B.

I have not been tested for Hughes/APS. I will look into it.

Thank you


Yes I too have the same problem on and off. Haven't bothered tohave it checked as most times I visit a Doctor it gets me no where, just end up with pills of some description..I have been taking vitamins and minerals for many years. If anyone has an answer to this I would be glad to hear about it.Must be part of SS.


have recently had this problem. Woke up on Saturday, thought I had the flu and went to bed. Was very light headed and all I wanted to do was sleep. Slept on and off for 2 days - which is amazing for me. But during this time had what they call brain fog. Was disassociated with things around me. Felt as though I just couldnt do anything properly and everything was in slow mode. Weird. On researching information on this - noticed that this can be associated with SS. Hope this helps

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Have you had your neck and back checked? I have lots of issues with my neck and go to a chiropractor which is not everyones cup of tea but works for me. I have issues with light headedness, migraine eyes and dizzyness. I found when I put my head in a certain way I would start to spin. Massage also helped with relaxing the muscles in my neck ( probably stress related), not sure how that would be now SS has progressed and it is a connective tissue disorder. Also check iron along with Vit B12, I have injections now as my body can't hold it.

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