LUPUS UK
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Dissiness and Lupus

Hello, I would like to ask the users of this forum, who live with Lupus, if they have experienced dizziness, of the rotating type coming almost to fainting. I have been diagnosed with LES for 5 months, I have been treated since then. Three months ago the analytics showed that I was very anemic, in b12, iron and vitamin d. Since then I am with supplements. Anemia was a good explanation for dizziness, but after three months of supplements and diet to increase levels (I have not yet done control analysis), I still have dizziness. That prevents me from having physical activity, working, or it makes it impossible for me to cook or walk around, because I have the constant feeling of being on a moving boat. I have also gone through the ENT, since I have had tinnitus for a long time and I have lost hearing in one ear. I had a resonance of the skull, the ENT ruler ruled out major problems. What showed the resonance is that I have a series of scars in the brain, the neurologist who reviewed my case ruled out multiple sclerosis, but I still do not know if this may have some kind of connection with dizziness. If someone has some kind of similar experience I would be very grateful to know about it, the desperation of not knowing and the discomfort of the regular dizziness, make my strength falter. Thanks and a hug.

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I have sle and I have intermittent vertigo. I may have it for several weeks and then it goes away for awhile. My rheumatologist says it’s not related to lupus but I’m not convinced. He also says my GI issues and migraines are not related either and it is well documented that these conditions are connected. My vertigo was severe years ago and I too had CT scan and was told it was normal so I was diagnosed with benign positional vertigo. It can be very debilitating. I’m wondering though with you tinnitus have you been investigated for menires disease? It is also an auto immune condition that has those symptoms. Have they tried you on any antihistamines? I hope you get to the bottom of this because it sounds as if you are really suffering with this. Hugs from me to you, Nan

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Hi Lapelos,

I too occasionally suffer from dizziness. I have SLE, Fibromyalgia and Hypertension(diagnosed 20 years now) I personally think the Hypertension has something to do with the dizziness but my Consultant has told me that SLE can cause various conditions in the brain where the nervous system can be affected causing dizziness now and again. This is something, in my case comes and goes and at the moment I personally am not too concerned about as yet! I have had worse things to worry about with my conditions than my dizziness although I am not trying to be dismissive! If your really worried about it, mention to your consultant as it may not be the SLE it could be the various drugs your on causing this as a side effect!

Good luck and good health,

Wolf_1 🐺🦋😴💤

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Hi there I recently had really bad dizziness like being on a rocky boat. Pretty awful so went to the GP and she said it was probably BPPV a type of vertigo and she said that about 70% of people with dizziness have this diagnosis - basically it is when you have 'bits' floating about in your semicircular canals in your inner ears(which are responsible for balance). Anyway she said that if this was the problem it is possible to fix it doing a physiotherpay manoevre called the EPLEY MANOEVRE. You can find quite a few videos on You Tube showing you how to do this series of moves with your head to clear the 'bits' floating about and irritating your semicircular canals in your ear. Some of the videos are with real people but the one I found most helpful was the animated one which shows you how to ascertain which ear to treat. I did it and was amazed that my dizziness was cured, and now I know what to do if it comes back. It might not be what is wrong with you but thought it might be worth a try. Good luck

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Thank you so much for your answers, hugs.

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Hello, I wanted to share what in my case has been the result of the constant dizziness that I suffer. I have Labyrinthitis, besides lupus. The HNO made a test that consists of introducing air and water into the ears, according to the results you can see if you have a problem in the labyrinth area that affects the balance. The test is quite unpleasant. Solutions? For now I have daily exercises to re-educate my brain with balance, treatments can also be sent but my doctor prefers to wait to see how I evolve. Best regards to everyone

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