I could do with some help please. I've been contacted by a former member of this community, who now unfortunately can't participate due to impaired vision.
They have been experiencing severe dizzy spells, almost as if they were drunk and wanted to know if anybody else experienced them and whether a cause was found and what (if anything) can be done about it?
She mentioned that she has experienced vertigo as part of her cerebral lupus for approximately 25 years and this is a very different sensation.
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Paul_Howard
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What about benign paroxysmal postural vertigo? You can get the whirling pits with that:
"BPPV is the commonest cause of vertigo. It is Benign as although it can be quite disabling, it is not due to serious disease; Paroxysmal because it occurs in short bursts of up to one minute; Positional as it is provoked specifically by movement to or from certain positions; Vertigo – dizziness defined as an illusion of movement ...
The vertigo is generally rotational (like getting off a roundabout) but sometimes sufferers, on lying down, will feel that they are falling through the bottom of the bed or, on getting up, that they are being thrown back onto it. The classic provoking movements to induce BPPV are: lying flat, sitting up from lying flat; turning over in bed; looking up (e.g. hanging washing) or bending down, especially if also looking to the side. The duration of the vertigo is brief; usually five to 30 seconds but very occasionally lasts up to two minutes."
If it is BPPV they can do the Epley manoeuvre to move the crystals in the ear that cause it.
Thanks PMRpro , I'll discuss this possibility with her. She was quite insistent that the sensation wasn't vertigo though, because she was extremely familiar with that felt it was quite different.
How does she differentiate between the terms dizziness and vertigo? The description of BPPV is the same as I would use about how you can feel when REALLY drunk!
I asked her whether it could be vertigo (as many people with lupus experience it) and she just said that she had experienced vertigo due to her cerebral lupus for about 25 years and that this was very different. I'll mention what you've said though as it could still be a possibility.
You have just described my symptoms perfectly. I have had Epley done but did not cure it. Its so debilitating. Had it a couple of years now, gets worse not better.
I would have got bad dizzy spells which it was thought were caused by anaemia, bradycardia and breathing problems due to difficult asthma, they have improved since I was given 2 iron infusions.
I have spinal cord damage following a spinal cord infection I cannot be in the dark as my balance goes I don't think it due to drugs for me more nerve damage and sounds like what happens to me. I cannot even pull clothes over my head and have constant noise in my ears like I was having high blood pressure but it's due to the spinal nerve damage or vasculitis . Worth a trip to GP me thinks !
Yes: I've experienced persistent dizziness 24/7 ever since 1985. Before that recurrently while I was growing up & a younger adult. Since starting lupus meds in 2011, I'm still 24/7 dizzy, but the severity is damped down unless I'm in any type of flare
My version of this diagnosed is apparently the result of overlapping Ehlers Danlos Syndrome (EDS) connective tissue disorder lack of collagen & dysautonomia + Neuro cerebral immune dysfunction inflammatory process + vestibular neuritis. At one point ENT thoroughly investigated and diagnosed benighted NONpostural vertigo due to labyrithitis (I was dizzy regardless of position) overlapping with the effects of osteoarthritis in my neck & chronic sinusitis. Typical!
The daily meds that help damp it down most are pred & myco
This link may help if her dizziness is due to immune dysfunction, even if only partly:
conscientious lifestyle management can help me minimise my dizziness (plenty of sleep, meditation, pacing activities, hydration, electrolytes etc) but daily pred + myco are key to controlling this
🍀🍀🍀🍀 coco
PS i understand that in EDS symptoms affecting the cardiorespiratory system (breathing, heart rate and blood pressure) are common...apparently it's the faulty collagen which means veins cannot constrict as they should when you change position. This can result in dizziness
I also have SLE and EDS - classic and have had syncope my entire life due to POTS and dysautonomia. The autonomic dysfunctions and EDS go hand in hand. There is a significant difference in vertigo and dizziness/syncope/presyncope as, unfortunately I've had them all for different reasons. I'm curious what meds she's been on. I have permanent adrenal insufficiency due to the high dose prednisone I require for my serositis from my lupus. If she's been treated for lupus for 25 years and steroids have been a part of it, I would strongly suggest a stim test. It saved me life as adrenal insufficiency leads to adrenal crisis which is fatal. Thank God I've had an ICD in for the past 13 years. The other thought is POTS, drops in blood pressure. It's a really frustrating symptom, even after 30-40 years it still leaves you feeling vulnerable and takes away much of your independence. An endocrinologist would be who does the stim test and I see an EP for my heart rhythm and blood pressure problems. All of the best to her!
Glad you replied: you've had a lot of vvvv valuable experience...it's great you're here on our forum now. 👍👍👍👍 am hoping we'll have more from you ongoing 🤗
Hi Paul. Before my diagnosis I had quite severe nausea and dizziness. I couldn't even brush my teeth some days as I wretched so badly. It was awful to experience. Not sure if it's related or not but I had "travel sickness" on very short journeys which lasted for over 24 hours afterwards. So I thought maybe a balance issue - with hindsight. I was lucky this symptom went with starting hydroxy and so never got investigated any further. I still get slightly nauseous at times and touch wood dizziness has gone. I hope you can get to the bottom of this for our fellow lupie. Good luck.
I have had dizziness/vertigo and a lot of it resolved when I was diagnosed with Hughes syndrome and started on anticoagulants. Now I usually only am dizzy when I forget to take my Eliquis.
I did have a spell of BPPV. For me it was very intense. I woke up one night and I felt like I had completely lost my sense of balance. I had to grab my dresser to keep from falling on the floor. Fortunately, it went away on it's own. An ENT can do a certain manouver to move the crystals in the ear that are causing it, if I'm talking about the same thing as PRMpro. I guess the crystals moved on their own in my case.
She may want to make sure she has been tested for APS antibodies. The Hughes Charity website has a list of the antibodies.
Yes - BPPV can resolve on its own but it is a sooner or later thing. You don't need an ENT to try it - there are videos on YouTube! My friend got it sorted that way by her daughter - the neuro who diagnosed it wouldn't do it. Apparently patients often vomit so many doctors are quite wary of doing it at their office...
I suffer from dizziness on a regular basis. It has always been put down to Eustachian tube dysfunction. This is when the Eustachian tube in the ears doesn't open properly. Air can't get in to the middle ear making the air pressure on the outside greater. This can result in dizziness as well as a feeling the ears are blocked.
I'm guessing that she has had her ears tested already for the vertigo? So what I would say is that I've had both BPPV and Bell's Palsy many years ago when pregnancy and post gestational hormones were flying about.
But for the past 3 years I've suffered periodically from Disequillibrium. The sensation has similarities to the others but is more subtle and feels fundamentally different to the vestibular issues everyone is describing here apart from Barnclown, who has very similar issues to my own I think.
It isn't related to the ears apparently. My neurologist explains that it's caused, in my case (and perhaps the person you are trying to help), by problems with proprioception. In my case this is because of diffuse small fibre neuropathy (SFN) combined with autonomic dysfunction (ganglionopathy) I was told. Audiologists and neurologists can test quite easily to distinguish.
Basically the minor nerve damage caused by the SFN and the autonomic nervous system leads to faulty signals within the body - and has nothing directly to do with the brain I'm told.
Messages that are usually passed around from one part to another via the very complex peripheral nervous system and tendons are deviant - possibly only very slightly. But even this minor deviation often leads to a sense of being constantly off kilter and slightly drunk. This is why sufferers of MS, alcoholism and Diabetic neuropathy also often have additional balance issues, as well as those caused by the central nervous system.
I found that -when I took Prednisolone for six months - the disequillibrium disappeared almost immediately and only returned a few weeks after I tapered off. This was one of the main reasons that I was keen to try a fourth immunesuppressant, MMF. And sure enough the dizziness/ disequilibrium has gone again after only a few weeks - leading me to feel it must be related to an inflammatory/ autoimmune process.
I'm told this is also quite a common aspect of Sjögren's Syndrome. In fact it can affect sufferers long before the eyes and ears become significantly dry.
Question: Does dry eye always mean Lupus or a related autoimmune condition? I have been told by my opthamologist that I have dry eye, but to me it is not severe unless I change my diet? Curious. Thank you all.
No there are many things that can cause eye and mouth dryness. Although lots of people with RA and Lupus also have sicca syndrome and use topical treatments for these.
Mine also gets worse during my tapers. I assumed it was due to the Adrenal insufficiency but as I have dysautonomia also and neuropathy (neuro says from lupus flares) your explanation makes sense.
Yes, my very first presenting complaint was dizziness. The dizziness was caused by POTS Syndrome, which was caused by Lupus. Essentially, the Lupus attacked my autonomic nervous system meaning that I couldn't sustain my blood pressure and my heart rate became erratic. This damage to the autonomic nervous system is permanent and I have to be medicated for it. If I go into a flare of my Lupus it tends to worsen.
Yes I do and there have been times I felt unsteady and walking if drunk with it. The gp thought menieres but the consultant I saw about it spoke to me for 29 mins and said silent migraine! Because no headache. (I didn't think much of him and he wasn't concerned)
It is possible to have more than one condition at any one time. (Never be afraid to quote the obvious!) Long before I was diagnosed with SLE or had any symptoms of SLE, I was diagnosed with Meniere's syndrome. I still have it today, along with my SLE.
Meniere's has a trinity of symptoms namely, vertigo, tinnitus and a feeling of the ear being full.
I often feel as if I am drunk but, without the euphoria indeed, I have been accused in the street of being drunk, although I am teetotal now. The tinnitus varies from a low volume whistle to a full blown angle grinder going at full tilt in my ear. I describe the "full ear" feeling as that feeling one gets when an aeroplane you are traveling in, is coming in to land.
The symptoms are always present in my type of Meniere's but, the are deadened by the taking of betahistine tablets three times a day and Prochlorperazine as required during the more acute episodes. Most people with Meniere's only have the trinity in episodes and tend to have no symptoms of Meniere's between episodes.
In my case, SLE and Meniere's gang up against me especially during times of stress or tiredness.
Paul, the former member's symptoms as presented are rather general, perhaps if he or she gave more details, more of us could perhaps offer some appropriate advice.
I'll be speaking to them on the phone again at the start of next week, so I will see what they say and if they want to present more information about it, I will update people on here.
Thought I'd add my experience too. Obviously dizziness is an issue for most lupus sufferers and different things cause it. I have super high platelet count :blood disorder called Thromobocytosis when first diagnosed i was dizzy all the time until they put me on high dose of Iron (ferrous sulphate) already on the blood thinners. This helped for a good while then my lymph nodes have been swollen for 2 years in my neck and that hasn't really helped theres a name for it but can't spell right now. But finally saw a ENT doc and he's put that down to sjorgens causing the dryness ... caused by sle inflammation. If my eyes get too dry i get really really light headed like im drunk. I got my eyes tested to be on safe side optician found i had rugby ball shaped eye so i have glasses for correcting that. Does help sometimes. Cant think of anything else other than medication. Hope one of our replies helps.😊😊😊
Yes, I experience these episodes as well. They can be mild, which are still horrible, to severe, where I have to crawl to the bathroom, and even that is difficult. It is as you say, severe dizziness that you walk into a wall or stumble and fall. Mine creates such nausea that throwing up it usually the end result so I have to take to my bed.
These episodes can last anywhere from a day to 5 days. Mine seem to be triggered by travel or some sudden movement. I'm not exactly sure but that is what I'm narrowing it down to. I swear by " Earplanes" an ear plug that allows the ears to eaqualize. They were recommended to me by a doctor and I travel with two pairs of them now. They work!
I also travel and keep a prescription of Zofran for the nausea and just after my latest episode my doctor prescribed a prescription grade motion sickness drug that he said to take right away when it starts. I can get that name if anyone is interested.
But as for a cause? I have been told it is due to the fine " hairs" in the ears getting out of alignment and that there is a simple treatment that can be done at a balance clinic. We have one here. The catch is you have to go while you are in the middle of an episode. They apparently flip the head in different directions to re align the hairs. I understand it is effective and lasts.
No one knows what causes these episodes but I believe it is just part of the ongoing inflammation. I do hope this helps, and good luck to your fried and thank you for all the work you do.
Oh dear, how unpleasant. I can't see labrynthitis being mentioned. It is quite different to vertigo and can be an acute presentation. Sounds like she needs to see a GP to differentiate. Hope she feels well soon.
Have just read in latest Raynauds and scleroderma magazine that Hydroxy can cause dizziness!. Hope the member is better soon as that's a horrid symptom. X
I've had 24/7 vertigo attacks and dizziness / sensation of "floating since 2009. After around a year of seeing 3 ENT's a neurologist and finally a private Otoneurologist I was diagnosed with vestibular migraine (now looking like an incorrect diagnosis) after many systemic symptoms have presented since.
Anyway, I was taking 96mg daily of betahistine which whilst stopped the constant vertigo attacks left me with the 24/7 dizziness/ floating feeling that got more intense with various triggers.
I talk past tense because following a diagnosis of Inflammatory Bowel Disease in 2015 and subsequent treatment for 5 months of corticosteroids the dizziness completely disappeared within a few weeks and returned when the dose started being tapered in month 4.
I've been on steroids again since Nov and again all dizzy symptoms have disappeared. So, like the other poster, inflammation / AI response is strongly suspected. Since may 2015 I also have all over paresthesias which again almost disappear when on steroids apart from in hot weather/ sun.
I'm seeing an autoimmune rheumatologist specialist currently and my investigations continue.
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