I’ve had uveitis a few times now, without any permanent damage as far as I know. (The last round I never had a follow up for due to other symptoms taking precedent over the eye follow up.) Anyhow, lately I’ve noticed something odd. I’ve had floaters before, they get worse with the uveitis (and I have light sensitivity), then they tend to resolve.
Anyhow, I’ve gotten these odd floaters that are much more like flashes of bright light. They don’t slowly move, they zoom across or just flash in place, and everything else kind of looks like it’s in the distance. (Basically the flash is in the foreground and everything else is out of focus.) I’m going to call my eye doctor on Monday, but I’m just curious if anyone else has had similar symptom.
I only wear reading glasses, however my roommate was taking an eye exam on his phone and I noticed that he could see things way better than I could, without his glasses. I’m not too worried, but I’m just wondering if perhaps the last bout of uveitis caused some shifts somehow. I am concerned about the flashes, since they’re so different from the floaters I’m used to.
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Uveitis was my first and worst BD symptom, (starting way back in 1979). Flashes like you're describing are sometimes retinal issues, possible warning signs for a retinal detachment or tear, or a vitreous detachment. Or it could be something like retinal scar tissue that's being pulled on by vitreous as it shrinks when you age.
Another possibility is an ocular migraine, which can happen even if you don't have a headache. It can cause you to temporarily (maybe 20 minutes or so) lose some vision in your eye, or see things like colored worms or patterns (that happened to me) or lightning bolts or bright flashes.
Talking to your ophth on Monday is important. I'm not medically trained, and I could be 100% wrong on what's happening to you. It's good to get it checked out.
I do have a pretty horrible headache, but headaches after IVIG are pretty common for me. I think my concern was that the flashes could be a sign of retinal issues rather than my usual benign floaters. Crossing my fingers it goes away, but I’ll still be seeing my eye doctor on Monday. I can’t afford glasses so it should be interesting if they find out that I do indeed need them now.
Just hoping nothing is detaching in there! Thank you for your input!
Joanne, as you know about my son's situation, he does not have any of these symptoms, in fact he never displayed the typical uveitis in left eye, or right eye, the closest thing I remember in 2014-2015 year, that he said to me " I think I have pink eye" and his doctor gave him anti-bacterial eye drops, and in 2017 he woke up with brvo left eye..it was so sudden, maybe he felt a bit of pressure the night before few hours of BRVO...for this reason, they still list him as probable Neuro Behcets - his right is 99% Visual normal, and Uveitis Specialist is following now - another thing, HLAB51, this uveitis specialist is good, he sent Ashveer for HLAB51 test through Canada blood services, downtown winnipeg, results should be back in one month he hopes, he said he sent people before, it should work, so let us see what and where and how they will test this, he took the referral form and gave his blood - Praying that he does not have it, as it is noted and most doctors all have opinion, but overall it seems to me that those with HLAB51 have not good prognosis, and need perventive medication - I want this very much for Ashveer, but doctors are saying he is doing good on azaithporine when it stops working then they will worry about, but that means he will have disability by then, how do we pervent this? I want to understand this better...
If you seeing opthalmologist on monday ask about Retinal Vein Occlusion - I too had uveitis on numerous occasions and unfortunately had a RVO end dec 2015. I has effect sight in one eye. That was when I was prescriped first steroids, then Azathioprine - had no eye problems since but I do still get floaters - usually when tired, probably having a bit of a flare. See my other posts and please let us all know how you get on. I too had flashes so something in happening. Same as jzeis post below - am no medic, only expert in myself.
Hi Sam0511, as you know my son Ashveer, I post for him, he is too stressed for this, I learned from people here to help him, he is most often every month to 3 months being checked up with Retina Specialists for OCT, (tomorrow), and Uveitis in 3 months, he has BRVO Left eye, and his visual field is at 57% left eye, and 99% right eye, same med's as you, and it seems to stopped, although, we are nervous for the next few years at least for the right eye - We spoke to the Uveitis specialist about the Stem cell possibilities, and he said, they work best in people who are born blind, they input the gene and hope for growth of what was missing, but in RVO it is partial damage, and it is difficult - so he has to live with it, although I think all doctors have various knowledge of stem cells, and I could be wrong, there seems to be hope for RVO as well via Stem Cells, but of good reputation doctors, proven government sites, the horror stories are there, I have read at least one such story from doctor in Florida (he is even part of National Inst. Health Eye- recognition), still I watched videos of his patiens who updated regularly of his optic Nerve Atrophy (my son has this ofcourse), he has no hope, if anything, his vision is worse now...so until something more permanent, it will be years and years...we just have to live with God's Grace of what we have, not what we don't have....another thing, Uveitis Specialist told us that his vision may return slightly like 2-3% but it will take years, and he will not notice any difference....so good diet and stress free immune system is the key to avoid all of this, he is currently on disability, but mentally he is ready for work, physically no...as a mother, this is difficult for me, I am worried soon as he goes to work, even on those modified work shedules, depending on the stress, we are from Winnipeg, North America's coldest city, what might be next for us...he is young, and hard to convince him that he should wait for complete MRI Improvement of his Brainstem Lesions...another thing that is turning up on his MRI is that blood flow to the right side of his brain is slower, as there is apparent slight irregularity of one of his M2 Middle cerebral artery...I wonder if this is a Cerebral Venous Thrombosis? he is developing mixed pattern? We are seeing Neurolgoy follow up this Friday, and will pose these questions....if anyone here has any more understanding of this, MCA Branch irregularlity, it is appreciated...we are worried ofcourse...doctors tell us they are keeping an eye on it, but what does that mean? We don't know...
I am so sorry for your son - unfortunately Behcets seems to be worse in males. I too have check ups every three months, it is over two years now since my RVO. It is correct that it does improve a little with time - it was explained to me by my opthalmologist that is it like any scar - when it heals it pulls the tissue - then after time it gives a little and starts to flatten out hence the slight improvement. The fact your son is checked on regularly is good, and hopefully things will stay as it is. I was told that because of the medication - Azathioprine - it should prevent RVO happening again. Of course there is always a minimal risk but I have faith in my consultant, and he is very happy, which means so am I. I have adjusted to reduced vision in my right eye - the only way I can describe it is a bit like looking under water. My brain has also learned to switch of from that eye if that makes sense - nearly three years ago now and I don't think about it that often. I understand by the nature of Behcets there is an increased risk of blood clots anywhere. Would it be worth asking about medication to prevent this? Forgive me if this is something you have asked before. I also understand how frustrated and isolated your son must feel. The main struggle for me now is not to be bitter about it. I do feel very down sometimes, it comes in waves - lasts for about a week and then I seem to be able to lift out of it. I have no-one to talk to about it - we have other family issues to consider, so my problem is the bottom of the pile. Because no-one has heard of it - I am the only person I know with this - then I have no-one to share my worries with. But I also think the anxiety is worse because it is another unfortunate symptom of Behcets. Stress is a huge trigger for me. I am lucky I don't have to work now - but with that comes isolation. It is too easy to say to your son to try not to get stressed at work, but if he could try to get back to some sort of normality it would help him greatly. Give him a big hug from me and please tell us all how he gets on x
Sam0511, Ashveer is going through exactly like youself, as you mentioned word for word, I will show him your response...you and him same, for BRVO, the only thing I am doing with him giving him turmeric 2-3 times week with little black pepper and extra virgin coconut oil, to drink every night before bed, this should help with thinning of blood and clean blood vessels, as Curcumin is known to do this, and I just started to give him little of Neem, not a lot, 2-3 times a week, and he will he will consume some apple cider vinegar in hot cup of water to cleanse, nightly...just remedies I think will help him, just made alternative delicious yogurt for him, with Dailya alternative greek yogurt/mixed with pure coconut milk (organic, thick, chaokoh brand), mixed the two, and add your fav. fruits, raisins, so stuff like this keeps us going - I do want him to work, but worry that if he stresses his immune system, the brainstem will re-attack, as he is electrician, and his visual filed is restricted, I have some gentle ideas of his work for him, I think something can work out, but my problem is the stress of thinking re-attacks/re-lapses, my mind does not stop worrying about this...this is key problem for me...he too has gotten use to it, like you say, his brain helps him out with other eye, not bothered by it, convinced himself, but yes, it is up and down with stress, I can see it, he will throw things and get stuck in screams for a while, and then he calms down, and is himself, but we have to not say things negative around him, or talk about it, he senses the medical worries, and will ask, "what was that? am I going to be re-attacked again?" he thinkgs he is on medication and he will be all right, I do want him to think positive in this regard, but in horrible reality, no one knows the course of B.D. and as mother, I know this, from learning with doctors, around the world,...this is not easy for him, my anxiety, I try to keep it to a normal level around him but he does sense it, we will have to make a lifestyle change, true, people do not understand what we truly go through, they; have their own worries, that are meaningless to you and me, but to them that is their life, we cannot and should not be dragged into others and their problems, you and Ashveer shall focut on your nutrition, diet, and calm of life and work that will help you gain mental balance...you can reach out out us, as many have written here to me , and I have written to them...we are all in this together, I totally understand how you feel not working, and feeling your life is stalled while others are moving...all of his peers are married on...he is busy attending other people's weddings...we hope to help him find partner, he is non-smoker, no-drinker, no relationship what so ever yet, he is 29...but no girl wants to risk his relapses and already acquired disability eye, arm, speech, ....we hope that someone trustworthy who will stay with him for life unconditionally will be found, and I pray for you that you also find someone, we are here for you...lots of regard for you...Jasvir and Ashveer
I just got diagnosed with BD this month. But I started having flashes in my eye regularly two years ago that have decreased over time. Now I get a flash very rarely maybe once a week or less. Gonna see a eye doctor this month. I think it’s related. I also get eye pressure but nothing bad so far. I get genital ulcers, mouth ulcers, leg lesions. Weird pains and recently pain at the base of my spine.
So the results are in! I have some mild inflammation but nothing worth treating at this point. The best we’ve come up with is that I likely had inflammation that caused some periodic pulling on my retina, causing the flashes. After my IVIG, with steroids, the symptoms stopped. I technically had IVIG before the flashes, but only a day before, so I was still dealing with inflammation issues.
For those curious, I’m American, with my ancestry being predominately Irish. There is a tiny bit of Italian and German in my ancestry, but not much. Oddly enough, I am HLA-B51 positive. I was told that it doesn’t necessarily mean I’ll have a worse prognosis, but I have been dealing with more severe issues neurologically and GI wise than most. Additionally I’ve been treatment resistant which really sucks. The best stretch I had was two years on Humira with minimal issues. Now we’ve thrown a Hail Mary with IVIG. This month we added colchicine which reduced my GI bleeding tremendously.
I do IVIG 2 days in a row, every four weeks. I’m 170 pounds give or take, but I get 80 grams, 40 each day. It’s a high dose but with the IV steroids I get, I have a few weeks of borderline normalcy. The damage that’s done is done, but we seem to be avoiding more damage with this regimen. There was some talk of plasmapheresis, but that’s absolute last resort. We have to go kind of hard because of the neurological issues. Now with the ocular involvement, it even more important.
I go back to the eye doctor in three months, sooner if I have an increase in floaters or flashes. I do have some spots I guess that are permanent in my eyes, but I don’t notice them, and my vision is still 20/20. I guess when I had my severe uveitis a couple years back, it left permanent little blobs they can see. Since it doesn’t impact my vision, I’m cool with it!
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