I have been experience dizziness (vertigo) off and on for several years. All the research I have done states that they don't think it's related to lupus, but I'm not convinced of that. I was just wondering what all of your experience is, is that a symptom that you have? it seems to get worse when my fatigue is also worse, was just wondering if any of you have experienced this? My blood count is normal so it's not anemia.
Dizziness or vertigo lupus related?: I have been... - LUPUS UK
Have you been tested for APS? 'Sticky Blood' or Hughes Syndrome. I am sure that's where my vertigo stems from and not Lupus as such.
Quite possibly. Iv had vertigo since early 30's (about 30 years ago) which is about the time I started to experience symptoms of lupus which was only diagnosed 5 years ago.
I'd been having symptoms of hypothyroidism for more than 10 years at this point (late teens) so when that was diagnosed has assumed it was a symptom of that. Iv asked the hospital clinic Drs recently which symptom is for which disease (Iv got more!) and so far no answer.
Hello nanliegh 👋👋👋👋
Yes there are quite a few of us on here who manage chronic vertigo related to autoimmune dysfunction affecting our inner ears & connective tissue disorder affecting our vascular & neuro systems (e.g. Dysautonomia). There are various causes that can underly vertigo of various sorts, so each case really should be considered on its own merits.
My impression is that my medics have proven that my version of vertigo is related to my immune dysfunction & connective tissue disorder...mainly because my combined therapy treatments for sle & co keep my vertigo well damped down so long as I conscientiously lifestyle manage things day in & day out (yes, when I am fatigued my vertigo increases by several degrees...I have several other chronic neuro cerebral symptoms that go along with this, i.e. Right sided numbness, tremors, cognitive impairment and also hoarseness...these all are present to a degree 24/7 and tend to flare alongside flaring vertigo). I've been living with vertigo 24/7 since my late 20s, and my version of vascular SLE is infant onset + I have ehlers danlos hypermobility (am 63 now)
My version of this isn't due to anemia
Here is a link to a great source of info about this subject in cases where ENT autoimmune issues are involved:
And here is a link re EDS connective tissue disorder and vertigo:
I hope something in there is helpful
Thank you Coco, that article by the vestibular disease association was fascinating to me. It makes a lot of sense that your inner ear could be attacked by auto immunity the same way other parts of your body could. I don't know if you remember but I also have constant struggle with hoarseness. The rheumatologist is quick to dismiss this as not being related to SLE. I was just curious as to other people with autoimmune diseases if they were affected by dizziness as well. There is still so little known about it, it's kind of aggravating when they dismiss it as not being related. Thanks so much for your response. I hope you have a wonderful day.
That link is fascinating for sure....and posted online by legit experts who really know, and clearly care about patients like us. These types of experts are rare within their fields...thank god for the Internet...they have reason to feel proud of their professional integrity: not all that many medics reach out to those with rare conditions they way these medics are with this post....seems to me anyway.
For what it's worth, the meds in my daily combined therapy lupus treatment plan that help me most to keep my version of vertigo etc damped down are mycophenolate & pred. My vertigo was severe & debilitating enough to be investigated thoroughly at length by a senior NHS ENT consultant in the mid 1980s, way before my infant onset lupus was recognised in 2011. This wise consultant diagnosed vestibular neuritis complicated & aggravated by a childhood injury to my cervical spine. He predicted I'd be in a wheelchair by 50. I've had to work hard in order to avoid his prediction coming true...and I have had phases of relying on wheel chairs, but never permanently 😉
I hope you can figure out your version of this before long
For what it's worth, back in the 1980s when the NHS was first investigating my vertigo, I took stemetil (buccastem) for months: it was totally ineffective in my case.
You are amazing Coco to beat the odds like that. I know you are diligent with your diet as well which I really struggle with. I really appreciate your input and wish the very best for you ❤️Nan
Hi coco, as I have the same vertigo, dizziness problems as Nanleighh Iv read your links and also found them interesting. Could there be another cause such as dry ears? I only ask because Iv got Sjögren's and suffer dry mouth and eyes - it's just an extension of that really, why not dry ears? Is it feasible?
Good ?s! think the answer to your ?s are vvvv likely to be yes...my version of Sjogrens was early onset & my various NHS clinics confirm Sjogrens is affecting all my "holes" + my whole bod (nervous system included). Ent & rheumatology say my immune dysfunction accounts for the lesions & boils in & around my ears, but I haven't recently had the opportunity to discuss the broader implications of my longstanding vertigo/vestibular neuritis diagnosis
From what I've learned about Sjogrens (especially from Wallace's great: The Sjogrens Book) I've been tending to consider Sjogrens is bound to be amongst the typically overlapping causes underlying almost all my chronic stuff...my chronic vertigo etc included. And the first link I included in my first reply (above) to nan encourages me in this (Sjogrens is mentioned along with lupus at that link)
Our head of rheumatology lupus clinic is also a Sjogrens expert...am hoping to see what she has to say about this at my next appt in Feb.
😀😀 had a real chuckle "Holes" cus thats how I refer to them!
I'm really pleased that u are going to raise it with your specialist in Feb as answers are needed sooner rather than later. Perhaps there isn't much research available or going on because it SEEMS to be difficult to differentiate symptom to specific disease or because of overlapping but I would think that this is what needs sorting first, which symptom - which disease.
Chaos wrapped in a ball of confusion springs to mind.
😆👍my feeling is that "personalised" medicine will increasingly become the norm: based on indepth analysis of our specific immunologic profiles ...this will mean our medics refer less to the terms used to title our collections of overlapping autoimmune conditions (Lupus + Sjogrens et al) and refer more to the fine immunologic detail of our specific individual versions of immune dysfunction. The more time I spend being investigated by immunology, the more I sense this coming. I hope I live to see it...
I have had dizziness for at least ten years, maybe more. I have no idea why. So far it has not interfered with my life in any significant way. I have noticed lately though that there are some 'spells' that seem to last long enough to frighten me a bit. If things were to get any worse I would probably seek advice from a doctor. Until then I will just carry on as usual. My experience has been that chasing a reason or diagnosis is too frustrating and time consuming. There's basically only 1 or 2 Meds for it and they don't exactly get rave reviews. I also have lupus and a slew of other auto immune diseases along with primary immune disease, (think bubble boy), so I'm not looking for trouble. I hope you get feeling better and that this will pass for you.
Thanks fezzywig for your response. With me it goes away then seems to hit me out of the blue. I was just curious if other people with SLE had these symptoms as well. It does seem too daunting to chase after the reason sometimes. I just keep carrying on the best I can and don't let it get the best of me. I know the drugs to treat it are worse than the symptoms. I took one meclazine once and slept for three days straight. I wish you the best of luck with your journey. Nan
I too suffer from dizziness and have Lupus, I also have anti phospholipid syndrome too, so I don't know which autoimmune illness causes it.
I have suffered for over 15 years now and some days it is worse than others. I take betahistine and stemetil for it, which help but don't stop it. I have to hold on to something when I am walking to keep my balance. I even get dizzy spells when I am laying down, perfectly still trying to go to sleep.
My rheumatologist has told me there is nothing else that can be done and to keep taking the tablets whereas my gp wants me to stop the stemetil as long term use can cause Parkinson like symptoms!
I will discuss it again at my next rheumy appointment. May be one day I wiill get referred to ent and they may be able to help.
Hi tired mum Thanks for responding. I don't have Antiphospholipid syndrome, just SLE. The dizziness may or may not be related to the lupus, I just wanted to see how many people experience dizziness with her lupus. Mine seems to worsen when I have fatigue and headaches, so I'm not really convinced that it's not related. I wish you all the best and thanks again, Nan
I'm dizzy all day. Help!
Yes, I have vertigo since 2014. When I am very tired I get vertigo spells more often. They make me nauseous and even more fatigue. I have UCTD and a collagen disease (possible EDS). I also have endometriosis and adenomyosis.
I am 42 y/o.
I have underactive thyroid and SLE and possible Sj...
for quite a few years i noticed that I couldnt do any exercises which involved lying on the floor as I would go very dizzy instantly get the most awful headache which would make me feel so sick. one particular journey had to actually throw up on way home while driving really struggled with turning head to look left and right. eventually went to doctors they just said Labyrinthitis and gave me pprochloperazine pills which worked. Hooray
recently over about a month I have found that I am getting the dizzyness back but this can be at any tie even sitting still, sometimes with headache sometimes not also found that I am starting to really take lots of deep breaths dont feel like I am getting enough air including even when I am just sitting in bed reading. I also keep getting these really weird hot sweats just in my head it just feels like I am being burnt to a crisp it just tingles and flood from my kneck at front and flows over head to back of neck then just dissapears. just imagine your skin is being burned and just crisping an cracking up. Or maybe its just me cracking up. Also have constant twitchy eyes driving me nuts GRrrrrrr!
I also just noticed prochloperazine says ask you doctor if you have underactive thyroid, so I presume he wouldnt have read my notes as usual. he has now given me a months supply. here goes oooh excuse me my face has just lit up like a bonfire sweating buckets. Nigh Night fellow Luppies xxxxx
That could be Menieres, causing the dizzyness. I'm exactly the same. It's part of hypothyroidism. With me I know that this is because I need T3, and currently I have been refused it. There are very few people with lupus and hypothyroidism, I've been looking for fellow sufferers. I have Sjogrens, antiphospholipid syndrome and to cap it all, hypopituitarism. Plus others. I had a Menieres flare yesterday. They given me betahistine to help combat it.
Hi Linda 96 wow the menieres sounds familiar except for the noise in ears I dont get that.
Had the dizzy sick headache years ago they suggested ear infection gave me tablets and it got rid of it, back then it only affected me when I did floor exercises. Now I can few months ago it started again at any old time of the day ... giddy spells just a few seconds pain deep behind nose and eyes sometimes feels like it is my eyeballs that are hurting that makes me feel sick. they gave me a course of these tablets now for a month I have 8 days left and I dont feel any better infact it is getting worse.
yesterday was the worst one I find I have to use my reading glasses all the time now but when I am reading everything still tends to go fuzzy (I have so many floaters its getting silly) but when I take my reading glasses off I then cant see any distance stuff, if I put distance glasses on I still cant see properly, GRrrrrr
Yesterday it was quite painful very giddy and I was shivering so I went to bed fully clothed including socks, duvet over top and thick dressing gown over that and I never warmed up. later I got up eventually warmed up then start sweating of for fudge sake make your mind up. Now this episode hasnt gone away I still have it 24 hours later
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