Dizziness - anyone found out why?

[Purpletop]

Most of us seem to suffer with dizziness once in a while. If you've raised that with your doctors, have they've given you any explanation for it, other than just being lupus?

[Thaddeus]

Hello Purple

The only time I got anything like an answer was when the world kept spinning clockwise whenever I opened my eyes. Was told it was vertigo and an to do with my inner ear. And that wasnt much of an explaination.

[Hidden]

yup, just about sums it up Thaddeus.

[Purpletop]

Well, i haven't found vertigo as one of lupus symptoms in any of the books or articles on lupus I read, and trust me, I'm doing my research properly.

[megs_tom]

nope I have never been given an explanation. But then I haven't been given a diagnosis either! I get dizzy all the time. It is the same with brain fog, gp always says it is caused off me worrying about my other symptoms not sure how far true that is! xx

[Purpletop in reply to megs_tom]

With other words, anxiety. This is what I've been told too, including the shortness of breath. That person who invented anxiety as a clinical manifestation has a lot to answer for, every time there is an unexplained symptom, it gets thrown into the anxiety bucket. I wouldn't mind if there was a test for anxiety, but there isn't and seems to me as it is a bit like emperor's new clothes.

[megs_tom in reply to Purpletop]

Ah yes, good old anxiety! I also get told this is due to me worrying, of course it couldn't be caused off anything else, it is all my fault it seems!!xx

[Tigerlily4 in reply to megs_tom]

Rubbish and how insulting! IME, many medications can cause dizziness in some people. From what I've learned over the years, it seems especially prevalent in people with SLE. In addition, general debility from any serious illness can too, especially if you've been overdoing things!

[megs_tom in reply to Tigerlily4]

Certainly overdoing things can bring on dizziness for me. Gp's I see tend to spend a lot of their time insulting me, I am quite used to it by now! xx

[Tigerlily4 in reply to megs_tom]

Lolling Megs but, actually, it's not funny at all. That should change once you have a firm diagnosis. It seems par for the course beforehand and is wrong on so many levels.

[Sher78]

I get dizziness all the time, usually a sudden drop in blood pressure but considering mine is always stable, that's a pretty crappy explanation. Certain drinks & foods that react with u're meds can cause it, Nifedipine & grapefruit juice r a classic mix 2 send u spinning out! If I try & do anything 2 quickly (like getting out of bed lol) in the morning I find I get really bad, spin out & start sweating & flushing so now I tend 2 just lire there with my eyes open 4 a few minutes & I'm ok. Keep u're fluids up & make sure u eat little & often too. I've personally never had problems with my ears or anything & I think anxiety is a crock of s**** as an explanation (with u on that 1 Purpletop!) as I'd say almost every1 suffers with anxiety as some time or another & THEY don't spin out all the time. Feel better soon chick x

[Kirsty2510]

What a relief to read this ! I have been having dizzy episodes for several months. MRI of my brain revealed a small 'patch' (that was how they explained it) they stated that anyone off the street not just a Lupus sufferer could have this 'patch' ...... But still no proper explanation ! I have 'fainted' or fallen over , split my head open and this has been put down to, BP, some sort of vaso vagal event, circulatory problems and now the cardiac and respiratory avenue are being explored.

Reading this is oddly comforting as I know I am not alone !

[Purpletop in reply to Kirsty2510]

At least they are taking it seriously. My cardio, lungs and brain MRI were all ok, which is why anxiety was suggested. I wouldn't mind it being anxiety, pop a pill and that's sorted but it isn't and I'm wasting time needing to convince them. Good luck with your investigations.

[Hidden]

I also get dizzy episodes with a thudding racing heart, my brain fog has been better since being on meds, but my GP also thinks it is 'anxiety'. I noticed in the US when diagnosed with an auto immune condition they attomatically get referred to gastro, opthomology, neuro and cardio. I do get the more severe palpitations and breathing/dizziness when I am flaring so assume this is inflammation induced. None the less scary at the time though.

[Purpletop in reply to Hidden]

This is the thing, doctors here seem to suggest that anxiety causes lupus symptoms, I on the other hand believe that lupus causes clinical anxiety, I.e. not triggered by worry but by lupus affecting the heart, or circulation, or whatever can trigger the anxiety like response. I have noticed that when breathlessness occurs (out of the blue, in my case) it is sometimes accompanied by a feeling of irrational fear that only lasts few seconds but to me that tells me that anxiety is the response not the trigger. Anyway, I'm not a doctor, so what do I know other than what my body tells me. Still think that doctors are too quick to rely on the anxiety label.

[Hidden in reply to Purpletop]

This is very true, and my anxiety does rise from the symptoms that also come on quickly. Not being able to take a deep breath without severe pain is scary! Though my GP still looks at me like I am crazy!

[Sher78 in reply to Purpletop]

like I always say Purpletop, u know u're body better than any1 else. Anxiety causes lupus indeed lol! What a chuffing Aphid! Next they'll b saying lupus is passed on thru sex! Would LOVE 2 know where they went 2 med school lol!

[Melinda]

I have not had any episodes just lately, but in the past, i had three funny turns in the space of a year. Before having these spells i would see stars. I would have to lie down afterwards. I told my doctor who wasn't really interested and a consultant who said i should see my optician. In my case i thought it might be due to being close to bright lights.

I have had vertigo in the past and it wasn't that.

[brave]

My very first symptoms 16yrs ago started with vertigo attacks ,then i spent the next year with E,N T consultants having very invasive tests ,he then refered me to neurologist,who decided that because i could walk in a straight line ,nothing was wrong ,no further tests and was told i had equilibrium syndrome LOL!!!!!!!!!!i now know that lupus has a fine time playing with my nervous system,most of my dizziness/balance issues are related to that ,however i have issues with my adrenal glands and this also causes dizziness.I am absolutley sure dizziness is part of lupus /autoimmune disease,anxiety is to easy to put upon a person ,i wish you well ,brave

[Sher78]

Docs love 2 throw the 'virus', 'infection', 'depression' & 'anxiety' labels out willy nilly, the latter 2 ESPECIALLY if they're treating a woman (sorry guys, no offence intended). I think they all believe we r uncontrollable hormonal creatures that go a bit 'do-ally' every now & again & if they just pacify us we'll go away. Female doc's can b just as bad as bad too! Gotta love it ;0)

[Purpletop in reply to Sher78]

Yeah, the fact that we bear pain better and are stronger in the face of adversity by comparison to men seems to escape them.

[DaleDiva]

I have just been diagnosed with Lupus as a result of being refered to a neurologist for dizzy spells, brain fog, migraine, clumsiness. Apparently on MRI I also have white patches on my brain. He thinks I have Lupus affecting my central nervous system. Am awaiting rheumatology referal for treatment.

[Purpletop in reply to DaleDiva]

It is good that they are looking after you at speed, you must have a good team there!

Any idea how long you've had those symptoms? Only my brain MRI was in Jan this year and it didn't show anything. My neurological symptoms at the time weren't as bad, I'm wondering how long it could take to show on the MRI, if at all, of course.

[DaleDiva]

I was already under a rheumy for a mixed connective tissue disorder as in his words "I didn't have enough points for a Lupus diagnosis" then when the other symptoms presented my GP sent me to the neurologist but after all his tests he decided on Central Nervous System Lupus. I have been in the system a while and at one point was told I had ME/Chronic Fatigue. Personally I think it has been Lupus all along...

[Purpletop in reply to DaleDiva]

Sounds like it, at least now they are looking in the right direction! I hope you'll now get some relief from the neurological symptoms, all the best!

[DaleDiva]

Thank you x

[vonnyrad]

Sounds exactly like me at the moment, but thinking back , when I first started visiting my G.P. with symptoms 33 years ago, it was with headaches, dizziness and that awful muggy headedness many of us know only too well.I was at university at the time and was told I was "stressed", "anxious" and "burning the candle at both ends", and to "go home and eat three square meals a day"!Eventually, after 12 months of returning to the G.P.'s with the same and worsening symptoms I was referred to a General Medical consultant who in turn referred me to a neurologist.I had a brain scan in 1982 which showed "something" but no-one would elaborate and at 21 I didn't have the sense to demand more info, however, I was then passed on to a renal consultant who biopsied me and said I only had about 30% function left and it would only be a matter of time before I would be on dialysis.Subsequently, I had a full-blown flare-up requiring hospitalisation and steroids which began my 30 year love- hate relationship with Prednisolone. Many years later, much water under the bridge, (a transplant, 2 children, and what seems like a 22 year post-partum flare) I am still getting unexplained dizziness and palpitations, and can only assume it is connected with vasculitis in some way( I have been re- diagnosed with microscopic polyangiitis fairly recently but I also have aspects of SLE )as it is definitely worse when my other lupus symptoms are bad, when I'm fatigued or I've overdone things.It cannot be connected to drugs in my case as when I first started getting the dizziness I wasn't taking anything stronger than paracetemol. I do believe that as SLE can and does affect the brain it is not unreasonable to expect such symptoms.I supose it depends on how much you are affected as to whether you should pursue further treatment, but I do feel that doctors should be more aware of this as a symptom of active disease.

[tracey676]

hi, first time replying on here, I've have dizzy episodes, that come from nowhere, years ago I was told cluster migraines, as I do suffer dreadful migraines, anyway was treated for the cluster migraines, was referred to ENT, who did an MRI, and was diagnosed with mineres disease, went to ENT regualary then last appointment, was, nope it wan't mineres, told didn't need to go back and that was that! saw a neurologist, and because I have history of Migraines, that when I even get a headache to take rizatripan, (probably spelt that wrong), as they are migraines, dizziness can last from a few seconds, to many hours, very debilitating, oh yes I wasn't on medication, at the time the dizziness started, I am waiting on a rheumy appointment, as there are many overall symptoms, sorry lost waht I was saying, try and stay positive, hugs x

[Purpletop]

Thank you for sharing your experience, I have dizziness connected to migraines but also on its own, no idea why. Yet. Good luck at the rheumatologist'.

[Emg-55]

At first they thought it was vertigo, but it wasn’t. It ended up being anemia...currently taking iron supplement and feel better. No dizziness for me after I started taking them...