Hi all, hope you’re all coping as well as you can. I’ve had some weird eye symptoms the last couple of weeks, seeing strange colours and patterns flash before my eyes, sometimes for hours at a time. On the worst day, I could barely see past the patterns to my computer screen, and it was accompanied by a headache. But most other days when I’ve seen the floating patterns, there’s been no headache at all.
I was due for an eye test anyway, as I’m on hydroxy, so I went and got one last week and the test came back normal. I do have a history of migraines with aura. Could this just be a weird form of migraine? Any ideas? Thanks community!
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Sorry you are dealing with this. My husband and his family have exactly these symptoms and the doctors have said they are ocular migraines. I think sometimes the aura can present like this. Hope it improves soon.
I have exactly same thing as you describe but no history of migraine and I’m 61. Saw neurologist the day before being admitted for major surgery for another problem and, despite having always been told that only those with history of migraine can get them in later life - she diagnosed me there and then with aura migraine after I described almost identical symptoms to yours. Hope this helps somewhat.
Thank you, yes it certainly helps to hear your experience. I’ve had migraines before but this one was really weird and slightly worrying! Hope your migraines have lessened, and that your major surgery went well.
I had been diagnosed with occular/retinal migraine a few years ago by my ophthalmologist, confirmed by my neurologist. I recall reading up at the time and this seems to be sometimes related to lupus - which I don’t have although I do have systemic sclerosis and associated Sjogren’s. But once diagnosed I haven’t had recurrence so assumed my headaches were neck arthritis related as had been told. Also saw a migraine specialist neurologist about 9 years ago and he told me that people my age don’t develop migraine so I assumed he was right. However develop them I’m now told I have. I looked this up again after reading your post and replies and see that there’s a variation on aura migraine that older people like me can be prone to and these involve more altered vision and sensory disturbances, often triggered by exposure to fluorescent or bright sunlight. They said +65 so I’m on the younger side of this problem as per usual. However I’m guessing that my neurologist was thinking along these lines but quite possibly too polite to ref my age! I do get awful headaches after the crazy blindness, one side facial palsy and hyperacusis with aura - but the headaches are more in keeping with my neck position. She also she looked up IV iloprost which I get monthly and this can be a trigger, as was IV immunoglobulin with the retinal migraine. I was just very thankful to get her diagnosis in time for admission to colorectal ward for stoma surgery because I took sun glasses and a wide brimmed sun hat and wore these to empathetic amusement of the young nurses - several of whom have migraine themselves. Jokes were kindly made about me thinking that I was going on a Caribbean cruise rather than about to undergo major bowel surgery - oh I wish ! 😎🏖️🏝️🚢 🤷🏼♀️
Thanks OldTed, I’ve got neck issues too, plus lupus, plus something called Mal De Debarquement Syndrome that doesn’t respond well to flashing lights and patterns! Sorry to hear about all the troubles you’ve had with migraines, auras, dizziness, palsy, bowel etc. Hope things have settled for you somewhat since then. Thanks for sharing your experience, I appreciate it.
Interestingly a good friend of mine has MdDS and also suffers migraine - but without any autoimmune stuff. She’s a big campaigner for more awareness for rare conditions and research for MdDS and is so good at describing her neuro vestibular symptoms when they flare.
Coincidentally I spoke to an ENT who specialises in autoimmune ear diseases and vestibular/ balance related conditions while in hospital. My rheumatologist referred me back to him last year when I was complaining about my “surround sound” pulsatile tinnitus being dramatically worse. It was ironic that the consultation was over phone and elderly lady next to me on ward was clearly very hard of hearing but hadn’t properly admitted this and kept calling me “the no voice woman”! So I told him that my elderly aunt also phones me regularly and says same about me “fading” and I’m struggling to make myself heard even to those who can hear well.
He sifted out the aura migraine sensory overload symptoms from the rest and has referred me back to audiology for repeat hearing tests and to the local voice clinic for further assessment and vocal therapy. So this was unexpectedly a very useful phone consultation and fortunately conducted in the nurses bay so I had some peace and quiet away from the endless alarms and awful lighting too!
Things much better now back home and settling into a new, life changing regime - mostly an improvement on what preceded this - but that was fairly much rock bottom in every sense so they only way was up! X
Yes, the worst thing for me was being virtually unable to see! It freaked me out a little at the time, and I mentioned it to a colleague in case it got worse. Thankfully it didn’t. Glad to hear yours have improved.
Thank you, yes that would freak me out too! I haven’t lost my sight yet, just found it hard to see through the swirling patterns. Hopefully it doesn’t get any worse.
I think I get that too, if it's sort of like you've been blinded by a bright pattern and it's like residual pattern left behind (I don't know if that makes sense at all). I also seem to get flashes where my vision seems to go black and white for a second. I've been getting zig zag lines in my vision more, like tiny glow worms wiggling towards the centre of my vision. I used to get it occasionally, but now they're brighter and lasting longer.
I saw Ophthalmology a few weeks ago, who think dry eyes are behind some of my sensitivity to light and issues with glare. She did mention migraines too. I used to get them in my late teens/early 20s, but if they are back I'm not getting the pain as much as I used to. I did read that antiphospholipid antibodies are associated with migraines in teen years that then return in mid-life. The worst one was when I fainted on a train, followed by an awful migraine and vision like broken glass.
I get dreadful spells that come on suddenly, where I feel completely weak and ill (it's really hard to describe, but when it's happening it's like the worst you can imagine feeling). I'm not sure if they're migraines without the pain too, but there's no pattern with eye symptoms that I've noticed. I kind of wish they'd treat me as if I have APS, just to see if it helps. I also have en coupe de sabre, but I've got no idea how/if that fits in with anything really 🤷♀️
Thank you FredaN, I too have dry eyes from wearing masks as well as APS, so that’s interesting to hear your experience of similar symptoms. Mine also resembles the coloured flashes you get after being blinded, and the zig-zag-type patterns too. Will monitor them for now.
Yes I am, I will keep an eye on things (forgive the pun) and get a referral back to them if it gets worse. No I haven’t tried a cold compress; it normally happens at work!
Hi MF, Has anyone mentioned Central Retinal Vein Occlusion CRVO or just RVO to you?
I had terrible short sightedness (-11) that was corrected when I also had a cataract removed alongside migraines spanning over 40 years. Wonderful, suddenly I felt I could see.
Then my optician diagnosed glaucoma - not so good. Meanwhile my Lupus and other associated conditions were more active and worsening.
Then, approximately 2.5 years ago I had an event similar to yours. Was it migraine? I wasn't sure. It lasted a few days, gradually subsiding but didn't go properly so I went to optician who diagnosed CRVO and told me to go to Eye Clinic as an emergency.
It's now happened more than once and I have been told I need to be seen each time that it does happen, plus every 3 months for follow up. So far no treatment and minor lasting effects. Thank goodness.
It can cause serious problems so do follow up if you still feel that it's not "just a migraine". Good luck x
Hello there - sorry to hear that you are experiencing this. I can identify with you 100%. My lupus diagnosis was sparked by constant aura migraines triggered by fluorescent lighting. I have also recently discovered that they are also triggered by using computers and other screens with 50-60hz refresh rate. My work has been amazing and I now have newer LED lights and a screens with 120hz refresh rate. I also wear glasses with a filter called FL-41 which reduces flicker from light. My rheumatologist also said hydroxy meds may help (8 weeks in so need a few more months to see if the meds work). I have also become very assertive during medical appointments about asking people to turn off lights! I ignore the rolled eyes and funny looks! Best of luck and hope it improves. xx
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