I was wondering if any of you get Migraine with aura along with Lupus?
I was diagnosed with Migraine Aura, after it being ignored by GPs for a long time. I get horrible episodes of light, halos and zig zags, so much I can hardly see. I go slightly numb down my left side and feel very confused, slurring my words and go dizzy. A dull headache appears after. Other times I just get a dull headache. Light always makes it worse, sunlight or even bright bulbs.
All of my doctors seem to think my endometriosis, migraines and my possible Lupus (GP thinks Lupus, positive ANA but waiting to see Rheumatologist) are unrelated. As this is all happening at the exact same time in my body, I find that hard to believe!
Does anyone else with Lupus get migraines, especially with Aura?
Thanks all! xx
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kittyIM
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Headaches and migraine are common symptoms in lupus. You can read more about this in our Factsheet, 'Lupus and the Brain' here - lupusuk.org.uk/images/pdf/1...
I have gone through phases of having these migraines quite frequently. This time last year I actually ended up taking time off work because of them. They stopped as suddenly as they started and I'm still baffled as to what caused them. They stopped once I started taking a calcium channel blocker for Raynaud's. I also have Essential Thrombocythaemia which causes an excess of platelets and can cause this type of headache although haematology didn't think this was the cause of my headaches. The haematologist thought it might have been related to Scleroderma. It's intersting trying to figure out what illness has caused which symptom sometimes.
yes, I get migraines too, but not with aura, just dizziness and numbness on my left side of the face. Strangely Paracetamol seems to work to reduce the symptoms. Most migraine-specific drugs have a sulfa component which is not indicated in lupus, so ask your neuro/GP to prescribe one without, if there is an alternative.
I don't get numbness on my face, but I did have a strange aura in my left eye. Funny you used that word. It seems the only way to describe it. Happened the other night after my husband gave me a nice back massage. I got up and had this weird circular light from my left eye. Like I couldn't see out of that eye. It scared me, but went away after a few minutes. I remember blinking trying to get something out of my eye, and that didn't work. I have been getting headaches here and there. Can't isolate where they are coming from other than I have been worried about my scarred kidneys and found headaches were a sign of poor kidney function. Just my experience. Headaches can be anything...hope you can find an answer...feel better
I get migraine with aura. The first time it really kicked off (migraines every 3 days) was after I tapered down my steroids. My rheumatologist referred me to a neurologist to rule out lupus as a cause. The neurologist said there was no link between migraine and lupus.
Since then I've had bouts of migraine when my lupus or vasculitis is active.
Currently I am migraine free, since starting methotrexate one year ago. This reinforces to me that actually there is a link!
I hate doctors Lupylass...they really don't know anything. I went to my GP today worried about monitoring my scarred kidneys. He told me even with a positive ANA that doesn't mean lupus, and my kidney report said, "may represent an area of scarring" and the dr now believes my kidneys aren't scarred because of that maybe. OMG! Cortical calcification in the upper pole of the right kidney and a lobular contour to the midpole of the left kidney, and he still says I am fine. Just need to check once a year. No protein or infection. I should have said, you can thank me for figuring it out on my own by taking a cranberry supplement daily to prevent infection and a Natto k enzyme for preventing protein leakage. Geez! Why do I bother seeing a dr?
Yes I too get the symptoms you have described , I too have lupus . It usually comes on when under stress or tired. Gp and optician not too concerned about it bus yes very alarming when it comes.
Hi, Before I had a diagnosis I used to wake up at night and not be able to see out of one or both eyes. What I could see instead was very bright light, slowly followed by a pin point of normal sight returning, followed by back to normal sight. Also, at this time I got a sudden bright flashes of light in both eyes during the daytime, almost like an explosion. This happened on several occasions. The first time I actually thought it was outside as I was looking out of the window. Since being on several drugs including methotrexate I no longer get this. I didn't get headaches at the same time. However, I am now extremely light sensitive and over exposure causes me to flare. Good Luck x
I was diagnosed with migraine at the age of 9 and Lupus in my 40s. I assumed that all the symptoms (as you describe) were 'just' migraine. However it's got so bad this year I was referred to the Headache clinic and the Dr said I was describing a mixture of Migraine and Lupus headaches. So I've been for a brain scan. I'm hoping they found one
Hi, I think migraine and lupus are certainly linked. I got hemiplegic migraines at the same time as lupus. I think the migraines are easier to control than the lupus though as most people have definite triggers - chocolate, cheese, bright light etc. I have always 'treated' mine with a big bottle of diet coke, sweets, very salty crisps and nurofen - but read recently that drinking caffeine to cure it can set up a vicious circle where you can then get a chronic form and you have to go cold turkey with the caffeine. I have found that very hard giving up diet coke and chocolate - but it has definitely reduced them. Have you tried keeping a food diary so you can see if you have a pattern of triggers for your migraine? I also think that unless you get a neurologist who understands lupus (and please tell me their name if you do!) you aren't going to get any help with finding a link. In my experience all the specialists just look at whichever part of you is relevant to them and don't have the knowledge to see the bigger picture - except the rheumys who try and put it all together but obviously can't have the same in depth knowledge about each organ as the specialist for that area would. I hope you find some way of lessening the migraines because they are horrible!
I have Lupus, mild RA just diagnosed within the past year. I also have Fibro, dx several years ago, Disc Disease and Coronary Heart Disease, along with 3 Aortic aneurysms. Yes, I am a mess! Anyway, as far as headaches go, yes, yes, yes! I have suffered from daily migraines and another strange sudden headache, that puts me to sleep immediately for 2 years now. I've had MRI's, Catscans, Xrays, and tried different meds. The only thing that has helped is Botox injections. The Botox has reduced the weird headaches, but still get the migraines from bad discs in my neck. Neurosurgeon wanted to do surgery on the discs, but Cardio Drs felt it would be very risky, due to aneurysms, so I decided not to have the surgery. Don't know what causes the sudden weird headaches, but must be related to Lupus. I sometimes get little floating orbs, but last week, I had a colorful zig zag to the right of my right eye. I also have cataracts, so don't know if that's what the zigzag was from or not. Having cataract surgery in July, so we shall see. I feel everyday, that I am slipping away, from this Lupus. Does anyone else get the sudden strange headaches?
My ocular migraines are always in a zigzag pattern. I refer to them as electric eels. I believe they are floaters in my eyes that are somehow seen by the brain as electrified. I was put on a low dose blood pressure medication and was aura free for the year I took them. Went off for two months and they came back. My eye doctor believe the blood vessels in my left eye trigger them. At this point, I will continue the bp meds even though my blood pressure tends to slightly drop rather than deal with the auras.
I also noticed that my migraines were caused by stress, bending my neck for long periods in of time while reading and fatigue. Try to keep a record of when they occur and look at all of your actions,feelings, and diet during that time. It can help to limit them. Good luck
Hi there the name of what you are suffering from is a Hemiplegic Migraine with Aura the Aura part is the warning the Hemiplegic part is the loss of sensation. xxx hope this helps
Hi, I used to suffer a lot from the exact symptoms you describe since the age of around 9. I was referred to a neurologist and diagnosed with migraines with aurea. I would go partially blind (tunnel vision), numbness in half of my upper body starting with the face and tongue and moving to the arm and hand. I would get confused and not able to process well my surroundings. I had it for years and seemed to worsen with stress and intense sunlight; some scents would also make it worse. For the next two days I would have strong headaches, feel drained and with a lot of apetite. I was only diagnosed with SLE last year, but now it all makes sense somehow…
I hope you get better. Fortunately I have not had such episodes in a few years and it is liberating.
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