Does anyone else feel giddy/off balance?

I have SLE and for years have felt giddy for much of the time but it has got worse as time has gone on. My rheumatologist says that the lupus must have affected my balance system and that there is not much one can do about it.

I'd love to know if anyone feels the same and has found a solution.

I have had pills from the GP (More pills!!), been to physiotherapy for balance exercises and done head and eye exercises but nothing helps. It's worse when the weather is hot and the sun is bright and I find all bright lights difficult to cope with so wear sunglasses a lot.

What a case!

Jude

4 Replies

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  • I have just started to get a dizzy feeling with this most recent flare haven't seen my rheumy yet but hoping I can find a way to deal with it as it is scary to carry my 4 month old. Can I ask what meds they gave you I like to do a lot of research on the drugs as I am trying to still breast feed my little one through this flare.

    Hope you find a way to cope I am just trying to move carefully and do lots of brain cross over exercises.

    Laura

  • Hi Laura,

    Yes, it must be scary when you have a small baby to look after as it's a horrible feeling. My GP prescribed Cinnarizine 15 mg tabs. This is the same as the drug in Stugeron the travel sickness tablets. I only took them when the dizziness was very bad because of the side effects (feeling doped-up and sleepy) and they did not always control the problem. So they weren't very satisfactory but just took the edge off the feeling.

    I hope that this passes off soon. Congrats. on continuing to breast feed despite the flare,

    Judith

  • Hi I too suffer from dizzyness it comes and goes, I can be ok for a couple of months then all of a sudden it starts again for no reason. I saw an ENT specialist who seems to think the same as yours that the Lupus has affected my inner ears so I take Cinnarizine I just find that if I take 1 everyday it seems to keep it in check, I still get dizzy occasionally especially if I move my head quickly but its nowhere near as bad as it was, I couldn't walk through the door without banging into it and was always covered in bruises! upside was that I didn't have sea sickness when I last went on a boat but I guess thats probably down to the cinnarizine! I hope it wears of soon for you

  • Hi Cathy,

    Thank you for your message. I can identify with banging into things too.

    What we have to put up with!

    Hope you are having a good morning.

    Cheers Judith

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