Has anyone ever experienced these as part of their lupus symptoms?
Yesterday I had a migraine with aura that lasted about half an hour. I’ve not experienced one since about four years ago when I was sent to hospital for a brain MRI to rule out Transient Ischemic Attack (right side of face droopy and numb). Fortunately, nothing was to be seen after tests. The thinking was, perhaps I had a migraine with aura that caused the stroke-like symptoms.
I have noticed an increase in headaches just recently but nothing major.
I have an appointment to see an immunologist Thursday of this coming week. Allergies are getting worse, swollen tongue more frequently and constant tingling in my tongue, hands and feet! I don’t know that migraine with aura will be part of the consultants remit or, some of my many other ‘shopping list’ items, but I will mention this too. I’m not sure, but have an inkling that certain foods can sometimes cause migraines? I try not to Google too many symptoms and cause myself extra worry.
I just wondered if anyone else experienced migraines/headaches as part of their lupus?
Is it a known symptom?
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Minnskimoo
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Hi Sue. This may or may not be helpful to you but, although my first neurologist was a migraine specialist, he said he didn’t think my TIA like episodes were aura migraine as my GP suspected. He called it functional left sided hemiparesis - a diagnosis that was much misinterpreted when I relocated 3 times over the next few years! However I discovered that Tramadol was the culprit as I had been given it when very sick earlier in the year. It literally made me feel as if I’d had a stroke - paralysis down my entire left side for a few hours each time.
I had and still have mouth and face tingling and tingling everywhere for 7 or 8 years. Later the following year after relocating I was rediagnosed with Sjögren’s and it’s thought that this is responsible for all the parasthesia now including facial numbness.
I do get very bad headaches sometimes but think these relate to either Hypertension or sinus pain in my case.
Best of luck with the immunologist and please let us know how it goes.
Thank you so much for your usual, helpful response. 👍🏼x
The more I think about my symptoms, do I feel they appear to sit more with Sjögrens - as suggested way back by my dentist and optician. All to no avail so far! ( I appreciate it’s not good to self diagnose)
Yesterday was a bit of a worry as it came out of the blue - no particular trigger I could put my finger on.
With reference to the parasthesias in hands, feet, tongue etc I still keep being told this is due to ‘anxiety’ and how it can mimic symptoms of other disorders! 🙄 However, my tongue tingles when eating, continues after eating and feels extremely uncomfortable like it is too big for my mouth. My feet are numb and tingle from the mid foot to toe ends. When I sit in the bath they feel as if I have chilblains. Hands tingle in bed. Sometimes, and less so during the day!
I don’t know what to expect from Thursdays visit except to be told what I am/not allergic/intolerant to and how best to manage it. I am of the mind that an immunologist might also give me advice re everything else that I am experiencing daily - as in auto immune? Or do I need to see a different consultant for that too?
I am beginning to appreciate the long and drawn out process of diagnosing an autoimmune disorder... 😏
Thank goodness for this site. The process of connecting with someone experiencing similar/same can make a world of difference to how ones day pans out......
Ps Re your sinus pain ...just made me think. I am taking Beconase steroid spray for post nasal drip but, it seems to have dried my nasal passages out to the point of crusty bleeding scabs and strangely enough made my situation a tad worse. Wonder if it’s sinus causing it the headache problem? Mmmm....🤔 Got me thinking x
Well the ENT told me never to use these nasal sprays. But then the gastro advised me to use one as it “can’t hurt” and he thought it might help get my sense of taste back. I used one 3 times and the resulting nose bleeds were horrendous!
Also my dietician’s husband has just been tested for Sjögren’s and I asked her if he had it. She said his bloods were entirely negative but in the meantime he had quit a long term prescription nasal spray and his Sicca symptoms and cradle cap have all subsided?! X
I was prescribed these for my aversion to smells I appear to have acquired. And, for post nasal drip (didn’t know I had it) I can smell things no one else can and any perfume, laundry detergents, scented candles send my asthma off the scale. The GP thought it might help with inflammation. Up to now, it doesn’t appear to have improved anything -just made my nose overly dry, crusty and no less sensitive.
Will ask if it is serving any purpose at my appointment.
Honestly if you do have Sjögren’s then sensory overload is part of the package. Today I smelt several things that my hubby didn’t notice, and his sense of smell used to be so acute compared to mine. One smell actually made me gag when we were out walking. Never found out what! Yesterday someone’s sickly perfume made me flee them. Even rolls of unused TK Max dog poo bags have a sickly scent which makes me recoil where my husband hadn’t been noticed that they have a scent!
Post nasal drip - ENT dismissed this as very unlikely in Sjögren’s as nothing much drips!
I over hear, over taste and over smell. The ENT blamed Sjögren’s for everything - said it’s an awful disease but there was nothing he could do for me. If you do get a diagnosis of Sjögren’s or other CTD then it will at least mean you can research yourself better as many doctors are hopelessly ignorant about this stuff. I have to teach them these days!
Oh boy, how I wish I could take you along to my appointment with me 😉... I can’t bear the detergent aisle in Sainsbury’s. Makes my head swim and I feel sickly. I have to buy special laundry detergent, unscented (for allergy sufferers) As for noise sensitivity, I can’t even bear the sound of my husband eating anything remotely crunchy - crisps are the work of the devil to my ears! I have to leave the room. I thought it was just me. 🙆🏼 Where did these symptoms come from I ask myself regularly. I never used to be like this once upon a time.
Well Sue it can be such a trial to get certainty for many of us. I literally felt as if I’d won the lottery when I was told that my lip biopsy was positive and a month or so earlier when my ANA was clear positive too.
How tragic to be so over the moon about this eh?! but I have anxiety now at even the thought of being told my very tingling or numb and off balance symptoms are due anxiety! Yet so far, since rediagnosis, I haven’t been told this once. But tomorrow (when GP phones about neuro letter) is another day. Always the risk that another neuro will revert to “all of the mind/ anxiety related”!
The Sjögren’s specialist did say that people with autoimmunity tend to fit on a disposition spectrum - and for Sjögren’s she observes it’s being of anxious disposition! 🙄🙃 X
I was fine once upon a time until my reproductive organs were removed -along with most of my sanity! 😬Been a downhill slide since then.
And, I suppose we all sit on a ‘spectrum’ somewhere along the way -some of us are just a tad closer to the line than others, perhaps? To be fair, that did actually make me smile.
Hi, I also experience migraine with aura and visual migraine and both are linked to my lupus diagnosis . Since starting on hydroxycholoquine in September last year, my very painful attacks have reduced in frequency and severity. Visual migraine still occurs but less so - just a bit of a nuisance as all I can see is a big sparkly rainbow for about an hour! Hope that helps x
Good to hear your treatment has lessened the severity. They are awful. The jagged, distorted, shimmering light and break up of vision was yesterday’s aura. 😖
Thank you for your reply, it really does help. I know something is amiss - still pursuing diagnosis.
My problems all began at least 5 years ago (in fact, well before) various symptoms were occurring - all dealt with separately. I recall being referred to a consultant perhaps 10 years ago as it was thought then that it could be Lupus -told it was hypochondriasis.😠 No comment. Over that time the symptoms and severity have increased. Lots of photographic evidence.- skin rashes, mouth ulcers, swollen tongue balance problems , tingling...and so it goes. The list is long and exhaustive.
Sorry to read your suffering with migraines with aura!. It's such a worry for us when we get new symptoms!. I too have suffered with these but have improved symptoms by cutting out cheese at menstruation time, chocolate , red wine, coffee all the time. Nuts too can be a trigger. I've written down that it's not a good idea to take the combined contraceptive pill as there's an increased risk of stroke with these types of migraine!. Worth asking your GP if this applies to you!. I also have found I can have a migraine at start of a flare. Like a warning sign!. Could this be happening to you?. Good luck with immunology. I was treated by one for years very successfully. He retired so I had to come back to my local hospital!. Still miss him!. Where are you being seen?. I was at Bristol, Southmead hospital !. Hope I've helped anyway and keep us posted how you get on. X
I don't eat nuts, (but certainly feel nuts most days! ) drink red wine or coffee, and have avoided cheese for some time. How utterly boring I have become. Used to love a full-bodied red! My diet is very limited, as over the past few years I appear to react to certain foods - my skin peels from the inside of my mouth, my tongue swells and leaves the shape of my teeth around the edges - mouth ulcers the size of craters.
I no longer have a monthly period. Not had one for 20 years Had a total abdominal hysterectomy for chronic endometriosis. Was given HRT patches as both ovaries were removed. I was 40 at the time and the HRT was more of a preventative measure against osteoporosis . My mum had it and my sister has it.
I've not been well recently and have had a chest infection for 10 weeks -never had one that has lasted that long - ever! Which is why I know something is not quite right. It just seems to be one thing after another.
I am seeing the immunologist at Leeds - St. James - this coming week. Hoping for some insight into what's going on in this body of mine.
Sorry you've been thru a lot thanks to lupus and endometriosis. Glad you've got a sense of humour, don't we need it to cope!. Does sound like you have an allergy so hopefully immunology will be very helpful and your going to a great hospital. Best of luck and look forward to your update. X
Hi minns , sorry to hear what you are going through. When my mum passed I started having severe migraines with visual disturbance, i even developed a weakness in left arm . I was referred to a neurologist and had a scan which was all clear . He suggested i try a herbal alternative Feverfew , I tried it and I eventually found it worked , the migraines cleared though I occasionally have a visual one . It is contra indicated for some conditions so a doctor needs to be consulted before trying it . I hope you find the cause , I think mine were stress related. Best wishes xx
So sorry to hear about your stressful time. Losing a loved one is understandably difficult.
I am pleased to read that you have found something that has helped alleviate the worst of your symptoms. And of course, stress doesn’t help - I know if you are predisposed to migraines it can be a contributing factor. Perhaps I’m subconsciously thinking about the week ahead and my appointment?! 😏
Interesting about the feverfew - (it used to grow, annoyingly in my garden!) I might have to ask about it once I am sorted! That could however be quite some time. 😬
Always grateful to hear of other people’s experiences and opinions
- the reasons why I am so pleased I discovered this site.
Sorry to hear you’re having such a range of symptoms at the moment. I hope you can get to the bottom of it soon. I’ve suffered with migraines with auras that last for around 30 mins. I don’t generally get a headache after but I see zig zags in my vision that get bigger and bigger. Afterwards I feel very tired and nauseated for about 2 days. I do also suffer with normal migraines and headaches which I put down to a symptom of Lupus. I hope that helps! Xxx
Yes - afterwards I felt quite out of sorts for the rest of the day. It is difficult to work out sometimes whether it’s just a normal occurrence or related to autoimmunity🤷🏼♀️ I am still trying to figure out how and why I have ended up with all these bizarre and worrisome symptoms. 😏
Cheers for the message. All received with appreciation and gratitude.
Hello, yes I get that and headaches are a well documented symptom of lupus. I’m fairly sure it’s part of the lupus for me as I didn’t have them before. I’ve spent a lot of time with neurologists over the last year (not always a pleasure!) and we seem to have got to the bottom of it but you’re right that it’s difficult to know which specialist to go to with our ‘shopping lists’!
I get a migraine with aura, usually before my period (especially if I eat chocolate or cheese 😬!) but it goes in a standard progression of symptoms from flashing light to exploding pain then sometimes left sided numbness (like you with the droopy cheek and mouth). My other ones have now been attributed to being part of a neurological lupus attack and I’ve had them 4 times in 6 years and they seem to last a few months. The headache is nothing like as bad as the normal migraine and is in the base of my skull rather than the sideways pound of my normal ones but doesn’t go away, my neck goes stiff, I have a fever, confusion, disorientation, hallucinations, fall over, pins and needles in my arms, legs, face and lips and the most severe fatigue I ever get with a lupus attack.
If yours don’t respond to normal pain relief but get better with steroids they say that’s a strong indication that it’s part of the disease rather than migraine. I found the pins and needles also went quite quickly on high steroids but if your tongue is actually swelling you definitely need to get that checked. Hopefully your immunologist will be able to help. Sometimes the most helpful advice is not always where you’d expect it! I went to see an optician for my hydroxy check at the end of one of these flares and he told me my pupils were not very responsive and it was a sign of general neurological slowing from lupus in the nervous system. Turns out his sister and other family members have lupus so he’d studied it in detail and knew far more than the neurologists who told me the symptoms weren’t lupus because I wasn’t dsDNA positive! He advised me to keep pushing for answers from the neurologists as said that wouldn’t happen with migraine.
I don’t know if you also get this (I think it’s quite weird so probably not!) but when I’m having one of these attacks my eyes respond differently to the light so when it gets dark I was feeling dizzy/ falling over because one eye dilated to adapt and one eye didn’t then when I turned on the light I could see colours with one eye but temporarily not with the other. I’ve just accepted it’s another one of those weird lupus things 🙄
Hope you get some answers and let us know how you get on!
Thank you for taking the time to post. All valid information for me to process.
And to be truthful, I cannot imagine how that must feel. Goodness me, they sound like migraines from hell.
It is amazing how everyone's experiences slightly differ to one another in spite of the fact the diagnosis is the same. And you are so right, information comes from many sources and not always as expected...as in your GP. Chatting to others on this site is extremely helpful and although no one is medically qualified, sometimes a comment can push you in the right direction for better medical help, or just much needed reassurance you are not stark,staring mad.
In response to the steroids, general NSAID's didn't really do me any favours at the weekend. Took them every four hours and although the headache wasn't intense , there was still a fuzzy, light headed feeling hanging around inbetween doses.
Not too sure about the response to light and pupils - does sound really horrid and very disconcerting. Just shut myself away in the half light until the zig-zags had disappeared and the whole picture had returned.
Crossing all, but appreciate it can be long, drawn out process.
Hello, do you have a lupus diagnosis and a rheumatologist?
If not and you suspect it’s lupus, it might be a good idea to ask the immunologist to do the usual autoimmune blood tests (ANA, ENA, dsDNA) but also your complement levels. My total complement (CH100) is always severely reduced in these attacks which was another pointer it was a lupus flare rather than simply migraine.
Yes, this site is great isn’t it? Hearing the experiences of others is so valuable in piecing our own diagnostic puzzles together but also in realising we’re not alone with all these often weird, diverse symptoms!!
I saw a rheumatologist early on in the Summer of last year due to various symptoms - rashes, bruising, recurrent mouth ulcers of huge proportions, feeling dizzy in warm weather, tingling in feet numb face and so it goes. The GP took one look at my diary of photographs and referred me to said rheumatologist and suggested I had some form of type 111 Hypersensitivity.
I can't even tell you the tests I had done at the time. Plenty of bloods for sure. I was told at my initial consultation that it looked suspiciously like Lupus or MCTD or Vasculitis. I would perhaps be prescribed Hydroxychloroquine as the first line of treatment and hopefully it should help relieve the symptoms I was displaying. Had a skin biopsy and this didn't sit with a Lupus diagnosis but was a result of something call 'Stasis Dermatitis' due to venous insufficiency. However, the dermatologist thought it would be advisable to go ahead with the Hydroxy and said he would pass on that information to the rheumatologist. On my return appointment to hear the outcome, it transpires that I didn't quite fulfill the criteria for Lupus, so on this occasion I would not be prescribed any medication but to 'be grateful in the knowledge that I don't have Lupus but, to contact at any time if the symptoms were to continue and anything else cropped up'! And true to form, non of my symptoms have improved, in fact they have been on a down hill slide since. I still have all the same things happening (the rash on legs, less so) with same severity. To add to the mix, return of migraine with aura. Hoping it was a one off!
Sorry your symptoms haven’t improved 🙁. I think lots of us end up playing the waiting game for too long whilst our blood results catch up with our symptoms. Hopefully you can try hydroxy now because that seems to make a big difference to lots of us and is very well tolerated with little risk.
Reading your response to Paul re the white matter changes, this is often found in ‘normsl’ people but also can be another sign of neuro lupus - especially with your symptoms so worth writing all these down for your appointment and seeing if you can get closer to the right diagnosis.
Let us know and fingers crossed you get some treatment that helps all these symptoms
You are so right. I appreciate there are many on here that have had a long haul in getting a diagnosis for their symptoms.
I will do a print out re the white matter lesions from my medical records as a prompt. I’m sure to forget something. Thank you for that.👏🏻
Had a few weeks of feeling low but with input from the lovely people on here, It has given me renewed hope. I love the fact complete strangers from all walks of life are so ready to help one another.
I think you’re at the worst stage now - the not knowing and once you do and get some treatment/ medical support you’ll feel much better.
Yes I feel the same about this site and the lovely people on it. I’ve had lupus for years but only joined it a few months and it’s made a big difference.
Hope you don’t forget anything at your appointment- although I always do! If you do, just remember it can’t be as bad as me leaving both my knickers AND shoes in the dermatologists!! 😱😂 My excuse is that I was in the midst of a big neuro lupus flare 🙄
Headaches are common in lupus. They may be a part of the lupus itself or may be associated with a clotting (antiphospholipid) syndrome. They may or may not have a migrainous element with flashing lights and visual disturbances. In any patient with lupus who suffers from headaches a systematic search for known causes should be carried out including blood pressure checking and, very important, an examination of the blood for antiphospholipid antibodies ('sticky blood') and ultimately, if indicated, a brain scan.
Have you had a referral to a neurologist regarding this symptom?
Thank you for your reply, it is very much appreciated.
I have been to see a vascular consultant in the past regarding a migraine with aura - I was sent because of facial drooping and numbness on the right side of body. I was given a CT scan and an MRI to rule out the possibility of a TIA. During my follow up consultation I was asked my age and whether I smoked or had in the past been a smoker. My response was "no" to both. I enquired as to why she had asked me those questions, to which she replied, "you have small white matter lesions showing on your results from the MRI scan." It appears that what I had was a little premature for my age at that time and,being a non-smoker too was a little unusual. I was 54 at the time. It did state on my notes that if this should happen again, then a referral to a neurologist would perhaps be the next step. I was very worried at the time by this new found information and paid a visit to the GP to ask what it meant. I was worried it was something of a sinister nature. I was reassured that, perhaps, had this not occurred,I would be non the wiser and, that there were possibly plenty of people that had white matter lesions going about their business non the wiser too!
I have since made an appointment with the GP for Wednesday morning of this week to voice my concern.
As yet, I am still in the autoimmune wilderness with regards to a diagnosis. I have an appointment booked for Thursday of this week with an immunologist. Hopefully, something will come of it one way or another.
I'm with you on trying not to google...I get whatever I read!!!...My husband has slammer Migraines..he has mild sjogrens. I get Aura migraines(not often at all) I have Subcutate Lupus
Sorry to hear you were hospitalised for 6 weeks but relieved to hear they found the root of the problem - although not the best diagnosis, sadly. Hope you are managing to keep your lupus under control?
Not heard of Basilla migraine before.
The dissolvable paracetamols don't seem to touch it, and my solution is to take to a room that is dimly lit and sit /lie it out. Just recently, after returning to work from a three month flu bug I am now experiencing really bad headaches that run across the fop of forehead and into nose (feels numb). Being surrounded by too many strong smells and fragrances seems to trigger them! The joys!
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