There are several of us on here who have a similar eye complaint: seeing a bright flash, like the afterimage of a flash bulb, when we blink, and sometimes, on upgaze. This is transient symptom for most of us, lasting anywhere from a few days to a few weeks. When the "spot" in our visual field passes over a dark background, the spot appears light. When the spot passes over a light background, it appears dark.
So far, the doctors haven't been able to diagnose us, and perhaps that means it is simply some idiopathic phenomenon. But, in any case, I'm wondering what other similarities we might all have that could bring us closer to a an explanation.
For instance, other factors about me which might be clues are:
I take 100 mg of Zoloft a day
I would describe myself as high-anxiety and stress
I clench my teeth, usually on the same side as the effected eye
I have alot of sinus problems around my eyes
I have double vision due to a weak muscle in one eye
I have many floaters and one very prominent one in the eye without the bright spot
HI everyone...I jumped online and did a search...and I cannot believe I came across people experiencing the EXACT same thing as me! Matt described it perfectly!!! It's just like a camera flash left over if you will. Changes color like some have stated. For me it's my right eye...the far right corner of my right eye. It has now been with me for the past two days or so. For the past two months I have been experiencing more issues than usual with ocular migraines...the ones with the prism??? Only lately I am having pain and what feels like the beginnings of a headache, which is unusual. I normally get the vision stuff without the headache. With the ocular I can time it to 20 minutes. Then recently I started with this black sometimes purple big splotch is what I refer to it as. It started off huge and then as time passed it shrunk until it disappeared. And now...well now this. This photo spot that won't go away...and my eye doc is away on conference until Monday. You can't help but be nervous. For me I am a diabetic type 2, I'm on blood thinners, I have Lupus, migraines, clotting disorder...and the list goes on...
I wish none of us were experiencing this, but I have to admit I found comfort in knowing I am not alone with this.
Sarah, and mel and anyone else with 'ratty' appearing blood vessels, it says that PVD (Flammers) causes hardened blood vessels which appear tortuous! That exaplains your doctors comments of them appearing ratty or curly
They usually seem to occur over the weekends. I wonder what I do differently. More time outside? More sleep? Different meals? Argh does my head in.
Does anyone else sometimes get a variant of the spots when they are outside in the glare of a bright day for a while?
Ok well life officially *****. Just about to leave for work and bam what looks like another permanent spot has hit. Mm from fixation in my right eye. Started off as a large yellow purple blob that receded into a bright triangle that is the opposite of what I look at. Argh, why are they hitting every few days!! Went from episodes years apart to 6 month now to days apart. Some days I wish I was never born!!!
Still there unfortunately. Need to have my mra before the next appointment.
Off topic when looking at this and blinking does anyone else see weird spots they never noticed before -http://www.bing.com/images/search?q=blue&view=detailv2&&id=C4B7E496F10C4A61FE7FE1DBBEE8A12A90274032&selectedIndex=3&ccid=6jfc19cG&simid=607989176174313763&thid=OIP.Mea37dcd7d7061f271da1086f1d430f92o0&PC=RIMBINGD&ajaxhist=0
Matt, are you seeing a large blob in your central vision when you look at that? It's a normal phenomenon! It's called Maxwell's Spot. The fovea can not see in the dark because there are no rods there. A blue screen will bring this out. Pilots use their peripheral vision to fly at night because of this. Some can see it, some can't. But I think what you are seeing is "normal".
This will explain and demonstrate it. Be warned, the guy tries to scare you on the third trial of yellow to blue screens with a scary zombie face popping up. :) But it's a good video to demonstrate Maxwell's Spot.
I drink a cup or two of coffee a day. I've considered giving it up or at least switching to decaf.
I work out at least 6 days a week. I lift, do intense cardio/HIIT. I did increase my workouts about the time the spots returned but I still worked out religiously during the time that they went away.
Oddly, when I am doing a tough cardio workout, I have practically zero temporary white spots. They return after I stop and my heart rate goes down. Also, I have very few if any for the first hour or so after waking. I suppose my BP is steady at night possibly while sleeping? And maybe the same is true when I'm working out at an intense level?
Hi matt, what do your permanent spots appear like with eyes open? No blinking? I have only 1 permanent spot from last year and i can only see it when i cover my right eye for a few seconds then release my hand when looking at a plain background. It is only visible for a fraction of a second.
The Ginkgo is still helping! I got a few spots when I cut the dosage down to 1/3 of a capsule, so went back up to 1/2 and have had only one or two since then, but nothing like I used to get. They are also much shorter in duration-- a minute or two vs the 15 - 30 mins they would last before.
I'm still wanting to get some Magetin to see if the combination knocks them out completely.
after the spots leave their active phase I am like you, they are only noticeable on transition from dark to light (sunset is the worst as there are so many shadows) or when they cross over a line or something like that (venetian blinds etc). The little pixel ones I'm getting all the time now (another one this morning) seem to be noticable a lot more but they too fade after a few weeks and I think leave tiny blind spots. But so small I can only see them if I go hunting for them when reading. Trouble is I'm over analysing my eyes all the time now so I think I may have had one in almost the exact centre of my left eye at some point. My brain is good at tuning it out but now because I'm looking for it I see the little residue of that spot everywhere!!!
Do your small pixel spots tend to be toward the center of your vision?
I have a tiny one that I got while in the mountains, and it's really close to the center. I've noticed when mapping out the temporary spots there seems to be a pattern of the smallest ones being close to the center, and I would tend to get huge ones further out toward the periphery. You can kind of tell on the image I uploaded of the locations of my temporary spots.
Hi all, dr flammer replied to me with this -
Dear Mr Welsh, just in addition to the mail of Dr. Konieczka:
What you describe: a worsening of symptoms in change in blood pressure when quickly standing up, causing multiple scotomas is clearly a vascular phenomenon. Now depending on your medical situation, the cause of a temporary under-perfusion can be different. In an old obese smoker with hypertension it is most probably due to arteriosclerosis. In a subjects with Flammer Syndrome, it is most probably due to a dysregulation of the blood vessels.
I then asked him about the blue field entoptic phenomena, and he said Flammer syndrome causes slower blood flow speed (velocity) and therefore this could be possibly causing me to see them slow down and speed up. He said this rarely leads to 'hypoxia' (lack of oxygen) in the retina however.
Hello again. Haven't yet tried Ginkgoa because I have no money. Anyway, before last week I had no gray flashy blind spots for 2 months. Last week I got my neck jammed and the gray ones appeared again(I wonder if there is some kind of connection). I get them all the time, big and small. For some reason they only appear in my right eye, does anyone have a clue why? They look like camera flashes.They appear grey and pink when my eyes are open and green when I close my eyes. Unlike the one I had 2 months ago that lasted 4 days, these only last for few minutes. There is picture of these spots on Sarah4983's page and they look the same as mine. These spots worry me sick I am so freaking scared. What causes them? Why they only appear on my right eye? Why they appear only for 2-seconds or 2-minutes? Why did that one stay for 4 days? I am so tired of worrying...
SO interesting. Not sure about the structure of the choroid/retina/capillaries etc but there's gotta be something to that. Maybe in whatever layer this is happening it's more dense or smaller in the center. I wonder if anyone else noticed this...
Hi matt, i first noticed the pinpoint spots in december. I can really bring them out by squinting against a bright background, or making a 'pinhole' with my finger like a tiny hole and look through it and wriggle it around, amazingly it brings out all my capillaries and my little dead pixels. My blue field entoptic phenomena ive noticed has large dark tails, and Dr flammer said the speed of blood flow is often slower in those with flammer, so this would make sense as the blood is flowing slower which makes me see them more with darker tails. The 'tails are red blood cells packed behind white blood cells, which is the actual little bright squirms'
Also, as flammer has said to sarah, the hypoxia of the choroid (which supplies the central vision with blood' could be causing these little spots. It all makes sense, but the damage is so small, and often temporary that it doesnt show.
I would see if you could try one of the CCBs mentioned in Dr. Flammer's medical journals if you aren't already, to see if it helps. They mention a really low dose of nifedipine or amlodipine specifically; not sure if these are available where you are or covered by your insurance.
The magnesium I was taking last year didn't help, and I was going to purchase the Magtein, but I'm now wondering if I just wasn't taking enough. This is what I found:
"Magnesium , a physiological calcium channel blocker (CCB), reduces the vasoconstrictive effect of endothelin-1 and improves BF regulation . A relatively high dose of at least 10–20 mmol/day magnesium is needed. If magnesium is not sufficient to improve vascular regulation, a very low dose of CCB , preferably nifedipine or amlodipine can be added. It is important to keep the dose low for the following reasons: (1) low doses can have a good effect on regulating vessels, (2) subjects with Flammer syndrome have increased drug sensitivity, and (3) in most cases, a further decrease blood pressure is not desirable. Before and after CCB therapy is initiated, blood pressure should be controlled; CCB treatment was recently reviewed .
The combination of magnesium with low-dose CCB not only improves regulation of blood vessels as observed with the Dynamic Retinal Vessel Analyzer  but also reduces retinal venous pressure and optic nerve compartmentalization ."
I think we need to know if Dr. Flammer is talking about Magnesium as a whole or the specific "elemental magnesium" which is contained in whatever chelate you take. Confusing, isn't it?
Take a look at this link. I think it is important to get the right amount of elemental magnesium, which varies depending on what chelate you use. The absorption can be quite poor for the different forms. It would be interesting to know what type of magnesium Dr Flammer suggests.
I can't stress enough how important it is NOT to squint or do the pinhole test obsessively. When my son was first born 12 years ago, I became obsessed with this because when I would burp him, I would notice all of these little spots up close to him when he was over my shoulder. I must have been squinting or something. I became obsessed and checked it all of the time. Then I was seeing the little spots everywhere. What I realized though was if I moved the pinhole (or glasses, etc. whatever I was using to "check") the little spots would melt into the vasculature of my eye. The spots I was seeing were just bits of these little lines/veins/etc. My eye/brain was for some reason focusing on them in isolation.
The didn't obscure my vision and were only noticeable when I tested for them or squinted. I decided it wasn't worth the stress and decided to quit looking. My brain eventually tuned them out again. That was 12 years ago. My temp spots went away a few years later and didn't return until my migraines came back last year. I started noticing the the little dots and lines again when I squinted because I began checking. My brain stopped filtering the more I started checking.
I'm not saying the lines aren't there. They are. But I'm not convinced all of those tiny dots and spots you see when you squint are damage or sinister in any way. I think we are sometimes guilty of overanalyzing and teaching the brain to focus on things that it normally wouldn't.
The US RDA for magnesium intake is 400-420 mg/day for men and 310-320 mg/day for women. So if we are to take a "high" dose, I suspect it is much higher than the RDA.
That is why I think Dr. Flammer may be speaking specifically about the amount of elemental magnesium which would make the daily mg much higher. I think we have to go much higher than the RDA for any effect.
Thanks for the info on the magnesium! The website I was using to convert the mmol to milligrams must have been wrong. Like many people, I don't supplement, and I'm certainly not getting that much from my diet.
Welshey or I can email Dr. Flammer about it, but I already feel bad about emailing him twice already. I'm sure he's a busy guy and I'd hate for him to get too many emails from us and stop replying. He's written quite a few medical journals on Vascular dysregulation/Flammer Syndrome over the years, perhaps we can first try to find the answer on the magnesium by searching online before emailing him? If we can't find the answer in the journals, are there any other questions you guys can think of asking Dr. Flammer to combine into one single email instead of sending multiple ones in the future?
I agree about not bugging Dr. Flammer. It's just so hard to figure all of this out without guidance. I was wondering if he had any US colleagues that he would recommend that may be knowledgeable about this. I would consider a trip within the US to see someone who had specific knowledge of this syndrome.
When I very first began having these issues 15 years ago, the very first doc I saw said to take magnesium and at least 3000mg. She said any lower would have no effect. I thought she was nuts because I couldn't find any research on that high of a dosage. Now may she wasn't so off base. It may be because she was assuming only a small amount of the magnesium actually contains the elemental magnesium that is needed.
There's quite a lot of posts recently I want to have a look through. Just wanted to say that after about 2-3 weeks on the gingko I notice a real drop in the temporary spots. I'd recommend sticking with it for a while.
Good luck finding a doctor here in America that even knows what the nailbed capillary test is. I spent 3 days at the "famous" Mayo Clinic last month, which, I'm sure is a wonderful place for other issues, but was a complete waste of time for this eye issue... It was a very frustrating 3 days. Before I was discharged, I asked the doctor about getting the nailfold capillaroscopy, and he had no clue what it was and asked around for me, and no one at the hospital had even HEARD of it.
I feel like after keeping track of symptoms and tracking the eye spots and all the internet research, that I/we know more about our eye issue than these doctors do. I had also asked Mayo for the endothelin-1 (ET-1) blood test, which is supposedly higher in people with Flammer syndrome/Vascular dysregulation, and again I got blank stares.
Maybe it's Florida... Maybe it's America...
Anyone wanna move to where Dr. Flammer is in Switzerland with me? lol
I'm just thankful for all of you, because after reporting what we've tried and what works/doesn't work and bouncing ideas off each other, I think that if we are going to get answers and figure out what works for the spots, it's going to come from this board before it comes from our doctors. Call me cynical, but after almost TEN YEARS of this and no answers from the 12 different doctors I've seen for this, I have little faith left.
It sounded bad, I know, but I'm not blaming the doctors. They just don't know. This isn't a well-known issue, so they never learned about it and that's not their fault. So I guess I'm not angry at the doctors, but I'm angry about the situation; the fact that I'm losing pieces of my vision and have no official diagnosis.
I'm glad you survived it, Matt :) Keep us posted! I'm really interested to see what the results say
Sarah, I think about the only specialist that will know about the nailbed capillaroscopy is a rheumatologist. They use it to diagnose scleroderma and other connective tissue disorders. Now, can they interpret the results as it would relate to Flammers? Who knows.
Did you ask Dr. Flammer about US colleagues? I may email him in a while (give him a rest from us...ha!) and ask him. Maybe we can find a few doctors here that are knowledgeable.
I have my biyearly check up with my eye doc next month. I am debating even mentioning Flammers. She will likely just discount it or say she hasn't heard of it. Thinking of sending her the different studies and info ahead of the appointment to see if she will review it. I agree. It's frustrating.
Hey Melissa, The dr at Mayo asked the rheumatology department and the neurology department there, and no one there had heard of the nailfold test which I found to be so odd.
I didn't email Dr. Flammer yet. That's a great question to ask him, and also about the magnesium. In my original email to him, I had mentioned that I was emailing him because of my frustrating experience at Mayo clinic, and he wrote back saying how strange it was that no one there had heard of FS, because had had just given a talk about it there. Hah.
I would ask your eye dr about it, and maybe even refer to it as vascular dysregulation. That's something I didn't think of doing while seeing all these doctors until recently, and I think that there's a better chance they've heard of that than Flammer Syndrome.
From my previous post, had more blood tests than I can count, including looking for autoimmune markers, everything came back clear, OCT, dilated fundus and fluorescein angiography came back clear as well. I have been discharged stating that the highly likely cause is high blood pressure spikes causing propbably mild dysregulation blood flow in my retinas and im just more prone to it than others, and to be reassured that nothing serious has been found with the tools that they used.
So I guess il just put it down to that, I also have body wide muscle twitching including neck and should pain, with aching left arm. After a clinical exam, all this put down to stress diagnosed me with general anxiety disorder with, benign fasciculation syndrome.
So stay calm boys and girls. It really isn't worth getting stressed over something that is unlikely to be serious (from what I have read and seen so far). I will update if anything else happens.
Well another massive spot this evening. Appears to be permanent :(.
Had lamb shanks in red wine sauce for dinner. While washing up a temporary spot appeared in my left eye and faded after 10 minutes.
About 30 minutes later another larger spot appeared in the same spot and seems to be persisting. Has been an hour so far.
I'm trying to keep calm, but I hate life atm. My body/ brain seems intent on destroying me. Every time I seem to get to that space where I think I can get on with life... bam another kick in the guts.
I just feel so helpless, when they hit I wish I had something I could do to feel like I had some control. Right now I have no strategy and just get washed in panic.
I'm so sorry Matt. I really believe that your body is react to the stress you are feeling right now. Even if you don't "feel" anxious, the reaction inside your body is occurring. No doubt there are vasospasms happening. I was reading a few articles on how the retinal vessels contract in people with depression. It seems it would make sense in people with anxiety as well. Your body's in constant flux right now and your circulatory system is reacting.
Have you tried starting to workout again? Like I've said, I have complete resolution of symptoms during exercise. Plus, it is extremely good for taming cortisol and adrenaline. Don't go crazy. Just some light sustained exercise. Also, how about some guided meditation to focus on your breath? I know people roll their eyes at that. I'm not suggesting you become a buddhist. :) Just some practice in controlling your breath and your mind. It's really hard but I firmly believe it is helpful. There are tons of apps you can download. You might have to ditch the blackberry though. :)
When is your MRA follow up? Hang in there. It's going to be ok. You will get this under control. Deep breaths, friend.
These ones are like black # or like a little ball of string. Once they occur they don't really change then after an hour or so seem to fade away most of the time. Sometimes they last longer and leave some residual funnyness. They seem to happen often after eating salty foods.
Does anyone else get spots after eating?
Well, I'm having this spot since 4 months now and no changes at all: always same size and position, no new ones, no temporary ones, only this "bright spot when blinking". It doesn't bother me, I check daily for changes but I'm not worried as beginning of course, now I'm like in the mood it's a floater (it's difficult to say, but I have this feeling it's something in front of and NOT on my retina. For ex. it doesn't move but it floats - or kind of - a little) or something not harmful, since the exams were fine and it got no worse in all this time. I think I'll have another check after summer if I don't notice nothing new.
Does anyone also experience small random flashing lights? I haven't had any spots when blinking for quite a while now (or maybe they've just become harder to see), but I started having some small flashing lights randomly popping up and then quickly disappearing again. Most of them are blue-ish, sometimes red-ish or white-ish. They remind me of the lights you can see when closing your eyes and pressing the eyelids tightly. I don't get them often, maybe 1-2 times a day, but they scare me every time. It also mostly happens at the end of the day, and I thought it might have something to do with strained eyes (and my eyes are definitely strained, I often also feel muscle pain when turning them). Anyone having an experience with this?
Oh, and also, I noticed another weird phenomena - sometimes when watching TV, I see moving zigzag lines in the areas where there is some bright color (like red, or on people's faces). The zigzag lines are transparent... it's really difficult to describe what it looks like :D so here is a picture where I tried to show what I see...
It happens only when watching TV, and I should add that my TV is an old CRD device, no modern flatscreen. Maybe that's why I don't see them on my computer monitor, because it's a flatscreen.
Things haven't gotten much better, but they also haven't gotten worse. The magnesium I was taking before might have already been rather highly bioavailable, so it might not make much of a difference. It's only been 4 days though, so I'll stick with it through the rest of the month. Worth a shot, at least.
I was wondering how many people get this phenomenon in the periphery of their vision (i.e. Further out than the natural blindspot). I get this occasionally, a have two permanent spots out there (one in each eye). The large one in the periphery of my right eye was the only one of my spots where they saw something (whitening of the retina) as I was looked at a couple of hours after it occuring.
I've increasingly been noticing the one in my left eye lately. It has been there at leas a year now now seems larger / more active lately.
Erg confirmed it was a retina issue.
Mri/mra showed no change from 2012.
All other tests Oct, angiovue, pics no change.
Basically he said that the Erg is pretty much impossible to fake, they actually use it for people they think are faking to get payouts etc. So they know something is up. Migraine / vascular is there as as possibility but not keen to treat just yet.
His assistant took blood to run a auto immune retina test and I need to go have a full blood work up.
He scheduled another Erg for 6 months time.
Basically if the autoimmune or blood tests come back funny he will call. Otherwise come in after the Erg or if there is a change.
Shame I was hoping for a treatment plan but oh well sort of knew I wouldn't get anywhere.
Hi matt, thats good and bad news i suppose. Good that nothing horrific was found, and bad that still no further with a diagnosis. Do you think the blod tests will come up clear? Ive often wondered if its autoimmune but i doubt it (touch wood) when do you get your blood tests back?
Morning Welshey, no idea when the blood test results will come in. They are doing it as part of a study they are undertaking otherwise it would have cost me $2k to send them to the States :s. Not sure how it will work as part of the study. They basically said they would call if anything was amiss.
Hi everyone! Good news for me. I still have no money for the gingko stuff butt I started to take magnesium 3 weeks ago. At the same time I stopped using the shirt that makes my neck jammed. And guess what. Almost no spots at all for 2 weeks! So I wonder if it was the shirt that caused the spots or the magnesium that made them disappear.
Hey Matt, like Welshey said, I guess it's both good and bad news. My ERG was pretty nebulous too. No information other than "permanent damage to the retina". My doctor told me that, too. She read the results and kinda chuckled and said "well, you're not crazy" -_-
Like Melc75, my blood workups were clear (hypercoagulability and autoimmune diseases).
I have an interesting finding I wanted to share... We started eating deli meat again last week, mostly out of convenience. Last week, we got Boar's head turkey breast, and I was fine with no spots. A couple days ago we got the grocery store brand because it was on sale, and I've had a ton of spots the last couple days. It's ridiculous, actually; going from hardly any for a couple months to now 4 a day. I looked up the ingredients of both brands and compared them, and the grocery store one contains these three that the boars head doesn't:
No nitrates or nitrites listed, but I think one of these things was possibly triggering my spots. None of them remained permanent, thankfully.
I take so many pills a day now it's ridiculous. 5 magnesiums, 3 omega 3s, 2 ginkgos, and an 81mg aspirin. Something seems to be helping, though. Wish I could go back to the old days when I didn't have to worry about this crap.
Was having a great day with very few spots, and BAM, huge spot in my right eye while eating dinner. Probably one of the biggest I've ever had. Haven't had a serious one like this for over a month. Did the bending over trick and it was gone within a couple minutes. Hopefully it stays that way.
I really think any dystrophy would have been evident by the ERG. Did he even mention that as a possibility after seeing your results? And the same goes for the autoimmune retinopathy. He is covering his bases with the blood work.
Please believe me when I say this, the more you search, the more you will find. You sound extremely stressed. I know that feeling. And it will cause things to be more prominent and flair.
Yes, I would go see the regular ophthamologist for sure. Go over everything and get yourself satisfied with the answers before you leave. Get on a treatment plan. I still think treating it as a flammers syndrome is the way to go. Low dose nifedipine and high dose magnesium.
This is directly from a response Dr. Flammer sent me. I asked him specifically about the temporary white spots I see all day long, as well as the ones Welshey and I see in a wreath around our central vision. I was very descriptive in my question and he seemed to know of my symptoms. Here it is.
"what you describe is a clinical picture we observed often in patient with Flammer Syndrome. It is burdensome but not dangerous. It is a consequence of local temporary low perfusion of the choroid leading to slight hypoxia in the adjacent retina. It is very typical that it was less during pregnancy and afterwards. All what you described is very typical. We do not know the influence of zoloft and buspirone. Drugs are normally studied on very heathy persons. But we know that subjects with FS have increased drug sensitivity. In other words, I cannot exclude an effect for sure, but I consider it unlikely. Nimodipine rarely helps and 120 mg is much too much. We use very low doses of Nifedipine, starting with 1 mg a day and increase it weekly up to 3 mg a day."
Are outside links allowed here on medhelp? I have a site that gives a great plan for restoring magnesium. We need a lot, friends. 5mg per 1lb of bodyweight. UK and AU friends, you can do the conversion :)
I'm not convinced Magtein is the answer but I think mag overall will be helpful. If you want the site, send me a message and I will link you.
Hi. I'm having sparkles moving accross my visual field. Sometimes they go to the peripheral, and then they turn into large dark blobs, then the blob stays for 30 minutes or more until it fades, they look like and after image but with no source of light. I have regular migraine auras with zigzag and a C shape that moves, but this is totally different, the blob does not move, they are not floaters neither. Could this be similar to what you have? I got this after I recovered from pneumonia and after using topamax
My regular check up with eye doc went well as expected. She agreed to prescribe the nifedipine and see if it helps. She has always said it was caused by small vasospasms in the retina. Now, maybe we can do something about it. I will keep you all posted.
Just got another spot around an hour ago. One of the black # types I seem to get. Still persisting :( I hate life. I'm trying to get a follow up with my ophthalmologist but the retina guy still hasn't sent through his report and my Dr doesn't want to see me until he has reviewed that. Hope this spot goes.
Also I meant to ask, how has everyone's treatment regime been going? The retina guy told me to stop everything until the testing was done. Hoping to get a treatment plan together with my regular ophthalmologist assuming he still thinks it is a vascular migraine thing.
I was wondering how many people get the spots more when they are sick? I think my last two permanent spots have come when I've had a lingering sore throat and swollen glands. When I was quite ill earlier in the year I got two spots that while they don't seem to be completely blind but have left a bit of distortion.
I ask because I seem to be getting sick and have had a resurgence of spots today which had seemed to be slowly reducing. I've also noticed another seemingly permanent one but thankfully quite far from the center of my vision.
I live in fear of getting sick. ***** as the lady next to me at work today was coughing her guts out over me and it took all my will power not to freak out!
i too have developed a sudden irritating bright spot in addition to some imaginary tiny black ones. This happened just y'day and I am taken a back. I thought some thing is stuck to my hair, then I thought may be to my left eye-lid and then the real frustrating shock came when I closed my left eye and yet saw a fast zigzag moving bright spot as i moved my eyes and blinked.
I am planning to see an Ophthalmologist today. I am so frustrated that I couldn't sleep whole night y'day.I do get regular migraine attacks and I know how to get control on it bye now. I normally abort the pain as soon as it triggers. The bright flashes during migraine attacks are different than this bright spot which comes as a lightening and disturbs a lot.
Can anyone summarize all experiences shared here and tell me in nutshell what should I do.
Hi matt i notice this alot, when im on a flight and look out the window, then look back inside tha plane the change in lighting makes a bunch of temporary ones come up all over the place. Does anyone get strange visuals when going to sleep? If the room is very dark i get strange lava lamp like orbs expanding and moving in my vision. I also notice big black spots in my central vision which is normal, but mine look like afterimages. All very strange
I just noticed today that as my symptoms have improved over the past month, my perception of the blue field entoptic phenomenon has greatly diminished. When the spots were bad I was seeing it easily even on white backgrounds. Now it's invisible on white and takes some concentration to see on blue. Just thought I'd share this little observation.
Just the various supplements. The only things I've changed relatively recently was the ginkgo and omega 3, though I can't say for sure if that's responsible for the improvement. I've also been trying to not stress so much over this stuff, which I think helps (at least with my sanity).
I'm seeing my ophthalmologist again in a couple weeks, so I'll share my theories with him then and see if we can get a treatment plan going.
That's awesome, Spotty. I really think anxiety and stress play a huge role in making things worse. It's very hard to be calm when these things are directly in your vision, but every condition is worsened by stress. And if it is Flammers/vascular in nature, we certainly aren't doing ourselves any favors by being anxious.
Keep us updated and let us know what the doc says.
Hello all, my name is Diana. I am a 37 year old female in Cuba MO. I have uvitits in my left eye that has been treated and in remission for a few years, but the treatment has caused even more problems. I now have a macula hole in my left eye, I had a cataract surgery in 2012, than a macula hole surgery 2014, it helped some for 10 months, then the hole reopened and became a stage 4, another surgery in 2015 but this one failed and I am left with a permanent large hole in my left central vision. My right eye they say is fine, but I have been through hell and I am ALWAYS afraid it will happen to my right eye.. I have really REALLY bad anxiety and depression so I stress A LOT.
I get an eye test from an ophthalmologist every 3 months, in 5 years I have seen 7 ophthalmologist. 2 new ones in the past 2 months as I have moved. I just had a complete eye exam a week ago, I now have some cyst on my left macula and may have to have shots in my eye again.
I made this new appointment last week as I had an increase of floaters in my right eye and was so afraid a disease was coming on. They found nothing wrong. I never believe them, party because it took 3 visits to the eye doc to even find out I had Uvetits the first time! I have had my eyes tested so many times and can't help but feel like they are missing something, I have had all blood work done, an MRI/MRA/MRV and many spinal taps to check for problems but to also treat my brain pusdeo tumor also known as IIH ( meaning my brain thinks there is a tumor when there is not one! ) Yes I have seen a few Neurology doctors and has lots of tests done.
Some new problems about a year old, I see what looks like dark neon black sparkles spots in my center vision. BAD on left eye right in the macula hole, and now in right eye I see them mostly when I am playing on the computer to much or watch to much TV, AND in the left eye WAY bad when I first wake up!! I have started to even see them with my eyes closed! No one can find anything wrong or tell me what is going on!?
After they dilate my eyes sometimes for a week or longer I am more light sensitive then usual. I had another all clear exam of my right eye, I had some extra gray floater show up and I was afraid something was wrong. Plus all the dark neon black sparkles spots in my center vision in both eyes :( but nothing at all can be seen, I had a slit lamp exam, rentina exam and pictures and everything else needed and right eye is fine or so they say!
Sorry this is so long, wanted people to know what I have been dealing with before I get into what's new. I am so hyper aware of my eyes, I can see my own natural blind spot, I have been able to for a few years, sometimes I relax and I don't notice it, But again I also have OCD so I can't help but look for it. *****... I can see it more then ever! On a page like this mostly white it looks large and almost black, on darker backgrounds I can't see it unless I blink, then it looks like BRIGHT white, and I see it bright like light memory when I close my eyes :( this has been going on for a few days SCARES the crap outta me. I am always afraid I am going blind, I am under so much stress and I was on Xanax 6mg a day for years but a doctor took me off them cold turkey, I ended up in the hospital for a week because of this and feel even worse sense then!!! Its been 2 month off Xanax and I don't feel any better and of course my anxiety is way worse so I can't relax or stop obsessing over all the things going on with me. I am so depressed......
Having another bad one right now. Haven&#39;t had a bad one for a while. It is very overcast today so I wonder if that triggered it. Started off as the typical bright yellow/purple blob. Then had dark spots inside it. Now it&#39;s left the residual bright line/blind spot that&#39;s noticable on dark surfaces. Hopefully it fades. Feeling quite anxious :(
Has anyone else noticed a connection between their symptoms and allergies? This morning for the first time in 2 months I woke up with a scotoma, and I continued to get many more throughout my morning routine. I noticed that I was quite congested, so I took an antihistamine because I've been having allergies lately, and I noticed that my symptoms were soon greatly reduced in severity.
I don't think it's a stretch to suggest that the two can be related, since I read in one of Dr. Flammer's articles that endothelin-1 (which causes vasospasm) is increased by most types of inflammation. This might also explain why my symptoms tend to be worse in the morning, as I always wake up with a puffy face that feels inflamed.
Remember, blood pressure typically drops for most people at night. If you are already having a problem with low retinal perfusion, this could be an issue for you. It may be worth having a sleep study or 24 hour BP monitor done.
If you read Flammers papers, you will see that this is a concern for some people.
Hi guys, hows everyone coping? My eyes still remain at the same level (touch wood) but every day is still a worry for me. I notice the entoptic phenomena worse now than ever before. I was reading an article that said endothelin constricts the retinal vessels, maybe we have an increase in this? This can be measured by retinal venous pressure. All linked to flammers. I saw a reddit forum where a guy had this diagnosed as 'spontaneous capillary vasoconstriction' so maybe thats what is it and ever will be, but for now im glad nothing serious has been found. So glad to have this forum to come back to knowing there are people going through this like i am. :)
Well I've woken up with another spot this morning. Followed a similar pattern to several others. I've been getting sick and have some mouth ulcers and am a bit stuffy. I haven't been sleeping well as a result. Last night I woke up and had been sleeping on my back for a few hours which seems to bring on spots for me.
I came here a few months ago to describe similar symptoms to all of you after having been a "lurker" for some time. At that time, I posted that I had finally been diagnosed with either AMN or AZOOR, pending an ERG to distinguish the two, due to some tiny spots (areas of inflammation/thickening) on an OCT scan.
I wanted to post that after having a normal ERG (unexpected) and seeing two other retinal specialists, I have been "undiagnosed" with AMN/AZOOR. Further OCT scans have also not revealed the same spots, but appear normal. We are back to not knowing the cause. I have had a few new spots develop in that time.
I had a brain MRI which showed some white matter hyperintensities, the significance of which are unclear at this time. A neurologist was thinking perhaps MS, but there are no other findings to support it at this time.
If you guys wanna find the reddit forum type in 'blind spot for more than 72 hours' and thats where the guy talks about how the best eye doctors cant find out his eye problem. He maps his out on microsoft paint, and says when a new spot appears, he squeezes his abdomen and pushes his feet downwards whilst putting his head between his knees. He says this stops the permanent spots.
Afternoon jm604, I have 2 large ones in my right eye. One close to centre at 6 o'clock which blocks out two lines below when I am reading and one very large one off outside of the natural blind spot.
In my left eye I have 3 large ones and also some 'bear track' spots I've had since I was a kid. The most annoying one of the lot is at 9 o'clock and will block out the C in Computer by the time I'm at the T.
In both eyes I have numerous small spots. Which don't normally bother me (except for one that is a few mm from centre).
Have you done Sarah's survey jm604?
I'm in another phase now of getting spots. Often coincides with when I feel I am getting sick like now I have mouth ulcers and a bit stuffy which has persisted for a few weeks. Not developing into a cold but not getting better either. Often my glands will be swolen when I'm in the bad time for spots.
I got another small one this morning on waking. Was like a curved line in my right eye. The thin line type ones aren't bad once they fade.
Does anyone else not get the entoptic phenomema? Mine is so horrific now it ruins my days. Everywhere i look i see these worms squiggling about/slowing down. This is 100% a blood flow problem, and we need to find something which stops the constriction of the blood vessels as its slowly killing off parts of our retinas
it's a rare autoimmune disorder, originally described in turks, that mostly affects small blood vessels. The classic symptoms are mouth and genital ulcers and various retinal problems and other eye issues. There are decent descriptions of it on the internet in the usual trustworthy places. Like I said, it's rare, but maybe at least worth reading about.
Regarding the entoptic phenomena, i stumbled across this -3. Flying corpuscles - If you stand up suddenly, your blood pressure to your head temporarily drops (see #2), but after that, your blood pressure is surging because your body is trying to compensate and temporarily overshoots. This increase in blood pressure causes more blood to flow through the vessels in your eye that are in the layers with your retinas, and if conditions are right, you can see the white blood cells (corpuscles) that are going through the vessels. The firefly description is a good description of this.
I see this all the time, maybe the blood pressure supply to my eyes is low/ faulty.
Hi guys. I've been hesitant to post because I don't want to jinx anything or give anyone false hope. But I seem to be having some success with Nifedipine. As most of you know, my biggest complaint is temporary white (and sometimes dark) spots that are occurring all day long, 24/7. I have had long lasting spots that have lasted for months as well. Dr Flammer suggested working up to a 3 mg dose of nifedipine. I have been on the medicine for almost two months and am just beginning to notice a substantial decrease in these spots. It is not something that has worked over night and it hasn't taken them away totally (yet) but I am getting better.
Nifedipine is only available in the US at a minimum 10mg dose in a liquid filled capsule. So, I've estimated the dosage which I think is actually slightly higher than 3 mg. I pierce the capsule with a needle and take 3 drops, 3 times a day. I put the needle back in the small hole and put it in an empty pill bottle in the medicine cabinet to keep it away from the light. It breaks down in light. It has a very short 1/2 life so I have been dosing every 4-5 hours. It does not seem to have affected my blood pressure like nimodipine did so that is good!
My current regimen is as follows
3 drops of nifedipine, 3 xs a day
2 magnesium glycinate capsules from PURE (120 mg mag. each) 3 xs a day
1 baby aspirin
1 Ultra Mag from Source Naturals at bedtime (a blend of magnesium types)
I also have increased my water and added himalayan sea salt to it
I had a few weeks of travel this month and my routine was not as stringent. I noticed the spots returning if I didn't take all of my magnesium or get my nifedipine dosage in at the right time. Travel brings a complete disruption of diet and sleep too so that could play a role.
I want to give you all hope. I'm not cured but I'm better! I plan on emailing Dr Flammer and asking him for further recommendations. I might try increasing the nifedipine as long as it doesn't affect my blood pressure.
I was taking magnesium but not at this high of a dosage and not the glycinate. The glycinate is one of the best absorbed forms. I have toyed with baby aspirin before but just decided to add that as well each day. I was never very consistent with it before. I don't think that is having the major effect. I really think it's the combo of this particular CCB and the magnesium. Nifedipine is used as an antispasmotic medication as well as for hypertension. People with Raynaud's disease (where the capillaries in the hands spasm and restrict blood flow) are often prescribed it to prevent the spasming attacks.
I just want everyone to know that it did not happen over night so whatever you start... be patient. It can take time. I am hoping things continue to improve. I will let you all know what Dr Flammer says. :)