Yup, I agree. I'm not a doctor, but I've been a vision researcher for the last 25 years, and this explanation is what I eventually came up with too. Our blood pressure goes up and down all the time, even when we just stand up or eat a snack. Many of our tissues are fine with the change in blood flow this causes, but nerves are very particular, and their function and life depends on steady blood flow. In the eye, this is regulated in a complicated way. The blood vessels inside the eye auto regulate like brain vessels do, but the ones just outside the eye -- that are especially important for central vision -- are regulated differently, mostly via the autonomic system. The ones inside the eye are supposed to expand when blood pressure drops and constrict when blood pressure rises to maintain a constant flow. For some people this doesn't work well. Some are born with issues, but others have trouble with age, especially if they have hypertension, which eventually makes the vessels less likely to expand. So, if your blood pressure drops after a big meal, after exercise, when you stand, sit in a hot shower, when you're dehydrated, or late at night when asleep, you can starve your retinal ganglion cells. They starve for a little while and you get a temporary spot, starve them for long enough and they die. The drop at night can be big for some people, especially if they take blood pressure meds at night or have low blood pressure to begin with. For some this is even worse, because their intra ocular pressure can go up at night, which makes it even harder for blood to flow in the eye. Also, if you do take blood pressure meds, they may drop your pressure, but they don't always move the auto regulatory safe zone, so a low pressure that is fine for normal people can be dangerous for treated hypertensives. Calcium channel blockers, magnesium, and being careful about how you treat hypertension can all help. For those who get spots when they wake up, find a way to measure your pressure at night. You can buy automated cuffs on Amazon.
Here is a link to the research I mentioned. I'm not saying visual stress itself is a cause of the blinky flashing but if it *is* related to hyper excitability of the visual cortex and visual stress is - it might be from the same root cause?
When I get the camera flash blobs they are only in one eye at a time unlike migraine aura, but I'm trying the coloured lenses (if the assessment says I need them) to calm my entire visual system down, which I feel IS overactive. I notice EVERYTHING from my vision now, entoptic phenomenon, sunlight and glare really bother me and the more recent symptoms of pattern distortion and vibrating vision are possibly all related to that. Worth a try, eh?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2478741/
There are other articles on this too. My doctors/ophthalmologists say my troubles are migraine related - but none of them have ever said people with migraines get this sort of visual distortion/ disturbance WHILE NOT ACTUALLY HAVING A MIGRAINE EVENT. This is why I've always been a bit dismissive of it as a cause. (How could it just be migraines when my migraines are typical and last 25 mins etc)
Anyway, good luck to us all!
I have the same issue. I wonder if it might have to do with a bright light coming in from the side, while you are focused on something else - like a second monitor while you look at the first in front of you or bright window on the side while you look forward at a monitor? The eye is adjusted to what you are seeing in front of you & so too much light is allowed to come in from the side...
I get exactly this - and have for about 8 years. Stress definitely makes mine more frequent. Like many other people, I suffer from aura migraines and sinus issues and anxiety. I've been seeing my GP (all my tests with eyes are normal except for a PVD in my left eye) GOP thinks it could be migraine related - (I'm sure we've been told that before) and I was going to write it off as a dismissal - until I found out about Irlen syndrome. (Visual Stress) that led me in a whole new direction on terms of research - like the work Professor Wilkins has been doing with coloured lenses to reduce migraine activity. (Migraineurs have been found to have more oxygen in the brains (highly excited beurons) - I think constant mobile phone usage and scaled screens seem to excite my brain but if you your tube it or look for visual stress articles you might be interested. As well as the flash bulb and dark patches I am now having a bunch of other symptoms, patterns and lines shake, text moves about etc. I'm being tested for the need for coloured lenses next week. Maybe something like that could also help you guys? My feeling is it's brain related not eye... hope you are all having less probs with it x
Saw the ophthalmologist this morning. Eyes looks fine. Weird arc persists. He confirmed from my drawing that it follows the line of the nerve fibres. For some reason this symptom has convinced him this phenomenon is related to ocular migraines in the retina and optic nerve. I'm seeing the neuro soon and wants me to work hard to get my regular migraines back under control.
Ps. One thing I forgot to mention is that this is a 'canary in the coal mine' effect. The retina is one of the very few places in our body where we can notice the effects of damaging just a few cells, and it's one of the few places that requires such a steady environment. Yes, the neurons in the brain need a steady oxygen supply too, but there are so many more of them, and we don't 'see' them when they fail, unless an awful lot do, like during a stroke. So we're not sick, which explains why very few tests come up positive, and why this isn't a recognized entity. We're just getting a front row seat to watch the ever-changing oxygen supply to our retinas. Not fun, I know (believe me, I know), but at least we don't have to worry that something major is wrong with us.
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.
Hey guys! So ive been keeping up with everyones posts about this weird symptom and well, I figure its time to get involved. Please bear with me, it might not seem at first that im in the right place but i can assure you i am ;)). About 4 weeks ago, I was out doing a bonfire and drinking with some friends. Well i must have grabbed ahold of some poison ivy or something of the sort while foraging for firewood. Have had poison ivy so many times I cant even count, but this will be the first time Ive had it in years. Anyway, it turned out so bad that i had to go get steroid shots for it (kenalog and prednisone). That helped but just a few days later once the poison ivy went away, I broke out in hives which had never happened. I went and again got another cocktail steroid shot and was prescribed a high dose 60mg of prednisone to take for two weeks weaning off over that period. After about 3 days, i started getting bad side effects. Low heart rate (50bpm), urinating at night which i never did before,bloating, and then here is this new spot in my vision!!! Looks exactly like the afterimage of a camera flash but can only see it for a split second when i blink. From reading through everyones posts, it seems we all have something very similar going on. I too went throuh all of the eye doc visits to be told i have perfect vision amd no visible evidence of retinal damage. But i still have the damn spot! Im a graphic designer so i use my eyes heavily on computer screens like 24/7 lol, which is probably terrrible, but i think its strange this happened after the hogh prednisone dose. Does anyone reading this have anything in common with this? We all need to start disclosing more about our daily lives and how we use our eyes, meds/supplements we take, all that if we are going to get to the bottom of this. I too also have anxiety which has long since turned into health anxiety so others who suffer such issues will understand the frustration and neurotic worry about this eye symptom when otherwise my eyes are and always have been perfect.
No, I don't have any other weird symptoms going on. Certainly no numbness or tingling. As for lyme, I am Australian and moved to the US after my symptoms developed. There's little evidence that Australian ticks carry lyme, though of course there are those who contest it. In any case, I grew up in the center of urban Sydney and don't recall ever even seeing a tick.
From what I've been told, optic nerve disease manifests in an absence of vision, not the manifestation of a noticeable positive scotoma, which is why it's so insidious - people simply aren't aware of a problem until vision loss is very advanced.
As for dealing with the fear of blindness and the unknown, I too spent years feeling paralysed by this condition and the what ifs. I left my job due to the stress and anxiety. (I was a journalist and magazine editor.) But it's so utterly self-defeating. I look back at all the energy expended and time wasted on worry, and could kick myself. When my worry was at its worst, I became very life-avoidant and isolated. I was fearful to open my eyes in the morning, I found it hard to eat, to interact socially, to live in the moment. I was endlessly distracted and googled and researched compulsively. Now, I still have moments when the fear grips me, but mostly I just get on with it. I view this eye problem like I view any of life's other uncertainties - the cancer I could be diagnosed with next week, the car accident I might have next month. Yes, I could get a big fat blind spot in my central vision, but what if I don't?
Has anyone identified triggers which cause their spots to 're-flare', and how long do people's re-flares typically last?
The last 3 days I have had one of my old spots flaring badly, and DAMN it is annoying. I really hope that it settles down ASAP.
matt
Just wondering how everyone is travelling. Been quite a while since someone has posted here!!
Matt
Well after a decent run I've picked up another seemingly permanent spot today. In the left eye just up from center. In that really annoying phase right now where it is extremely noticable. Can't wait until it fades.
Recently I started doing some weight training again. I wonder if that has anything to do with the flare up.
Very glad to hear that it went away. I have the same issues as the most people here. Multiple scotoms in both eyes, all off center. Also the flashy lights from time to time. Went to the doc with no answer as the most of us. I have also noticed if i close my eyes and open them rapidly looking at a medium bright white wall or monitor my scotoms sparkle or glow for 1 second or so. Have no clue why. Bending over helps sometimes. I also had few times a light spot right in the vision center. Luckily it disappeared. Would really love to know what we are all suffering from.
tl; dr:
I have had success treating this with posture.... which sounds bizarre but I found I had tension in my upper back and neck and that supporting my head on my chest rather than pushing it back reduces occurrence and helps resolve any bright spots (like a camera flash after image) I see in my vision.
The long version:
3.5 years ago I had a stressful weekend doing some charitable work and not getting much sleep, eating poorly mostly sugary snacks, getting angry at lack of progress. I woke up on the Monday morning with a bright spot in one eye. Could just about hide a mouse point in it. Went to optician after 24 hours, couldn't help. Went to ophthalmologist, they couldn't help (though have recently found but not yet been to see one who has said they have at least seen two other people with this symptom).
1.5 years ago, similarly stressful week but for work related reasons and I picked up another one in the other eye. Again noticed upon waking n morning. This was also after a period of high occurrence (>10 bright spots per minute lasting for about 30 seconds in average each and over a period of minutes to days under range of conditions: rested, stressed, relaxed, exercised etc).
1 year ago: had first instance of a transient one lasting for more than a few minutes, in this case about 10 hours, before the vision restoring to normal.
6 months ago I started a new job. A week before starting the job I also saw a good osteopath about a strained neck and whose advice I misunderstood / mis-remembered. I thought the stress of the impending job was causing it but I had good days of no transient spots, mixed with bad days of many transient spots, some of which developed into permanent blind spots (with one being a large arc but quite far out from centre of vision and in one eye only).
After 3 months of this much greater occurrence of transient spots I did a meditation course. I made a lot of progress in making peace and accepting that everything changes, and that at some point I will lose my vision either because I go blind or because I die of something else... this definitely helped but didn't stop them coming back with and indeed occurring even when I was at my deepest point of relaxation and just saying "bring it [blindness] on".
A month ago I went back to osteopath because I wanted to see on the off chance if there was anything he could do to help (he's £75 an hour vs £350 for 20 minutes of no help from a neuroopthalmologist... though they are a highly skilled and wonderful person... they couldn't help in my case). As soon as I stood there again he said: "You haven't remembered what I told you have you" * oops *. Since then every time I notice transient spots I __personally__ 100% of the time realise my back is flat and my neck is crooked.
Resolving action:
Pushing my bum out by using my lower back muscles gently maneuvers my chest under my head. I can feel my shoulders relax ever so slightly and move back and down. My breathing comes more from my belly and on breathing in my forehead gently moves up and breathing out moves down. My neck relaxes on the sides and down the back and my head feels more loose on top of it.
Things I tried before:
* relaxing (used all sorts: sleeping, meditating, playing games, socialising, sex with partner, absorbing work, etc): didn't work as would still see transient spots with same occurrence as when in stressful situations.
* bending down to get head lower than heart: worked 100% of time but didn't want to live life like that... also felt uncomfortable doing around coworkers in office even though they were very supportive so would have to do in toilets. Made it quite impractical. Probably worked due to: increased blood pressure in spasming capillaries to help them open again and by relaxing and stretching tightened neck and back muscles.
* taking magnesium: didn't help me though only took 200mg per day... as was scared of the "high strength" magnesium doses some people were recommending... I definitely do not want to suggest the magnesium is not beneficial, just for me at that dose it didn't help prevent or resolve transient ones.
* hydration: difficult to tell but always seems to help though not resolve.
* sleep: most spots developed during sleep and I noticed during the recent period of very high transient spot occurence (sometimes > 30 per minute, but lasting for ~30 seconds and also of more varied shapes) that actually lying down on bed on back made them occur but rolling to side relieved.... again fits with muscle tension in back but perhaps also something about muscles in eye pulling and squeezing eyeball back into socket? Sleep and being well rested is generally a great idea, I notice more transient spots (and that my postures worse) when tired.
* trying to relax muscles around eye: I noticed, again on the deep Vipassana meditation course that I seemed to be holding tension around my eyes and that when I could relax it it seemed to help reduce and or resolve the transient spots. I found it *very* challenging to relax eye muscles in a way I found convincing... it's far easier to tell when your neck is crooked or straight but I'm not convinced I really know when my eye muscles are overly tense or relaxed.
* exercise: reduces stress levels but I found on multiple occasions, particularly about 15 minutes in that I started to get spots occuring and sometimes bigger and more persistent. I went for a jog today and realised I get tired due to exercise and my lower back muscles "give up", resulting in poor posture, much more tension in neck muscles etc... though feeling much happier.
* just not observing them / when they happen mentally saying "bring it on, if I'm going blind, fine, I'll face it and I'll cope": This is wonderful for psychological health but did not seem to effect prevalence of bright spots occuring.
Mechanism:
Less interesting as most people just want to get better by reducing transient blind spots (even though permanent ones will be with us whole life until medical science advances far enough). As mentioned many times on the forum: probably some kind of capillary spasm. I'd guess it's in optic nerve and maybe in retina as well. For me the spots are usually much larger out to the edges of vision which would make sense as retina / optic nerve does compression of data, therefore if a single capillary closes near edge of optic nerve it will affect the same number of nerve fibers but this will be carrying data from much larger area of peripheral vision.
Apologies for the long post, there's way more to include but salient points are there (I think / hope). Hope it's useful for someone.
Well I got another one yesterday which seems permanent annoyingly. It is in my right eye just next to the very first spot I got. A little triangle again, noticeably on contrasting colours and lines with a little blind spot in the middle as per normal.
Shame really as I had been getting on with life and forgotten about the spots mostly. Last permanent one was dec 2015 I think. Part of me thinks this might have contributed to this spot as I haven't been as careful as I usually am when it comes to diet etc.
Interestingly this one occurred a couple of hours after I had been out in the garden along with the onset of nausea from sunburn. Part of me wonders if a damaged bit of my retina got sunburnt, over stimulated or something.
It could have also been the night before as I had a few shots of whiskey and went to bed (which hasn't been unusual this last few months) perhaps I had a bad sleep apnea episode and didn't notice the spot until later in the day.
Any way I am tossing up as to if I should go to the eye doc. They never seem to find anything. I really can't wait until this one fades some. Hate the annoying bright noticeable phase.
Matt
Yeah that's how mine are and they wreath around the center almost like the Yelp logo
Hi everyone
I have like others on here been following this thread because last October I started with 'blobs' when I blinked. I began with one noticeable one but when I moved my finger infront of my eye this showed two, and I now have 4.
I visited the opthomologist today and to skip 7 months of various scans that have shown nothing today I had a scan which finally showed something going on in my retina. I have spent some time reading various research and it is apparent only specific tests are showing this problem. My ophthalmologist was so convinced my eyes were fine I was almost discharged two weeks ago and sent to a neuroopthamologist.
I was sure it was my eye and asked for further tests.
The diagnosis I have been chasing is acute macular neuroretinopathy. I have not been diagnosed with this but the opthamolohist is leaning this way. I have requested an infrared scan because this is supposed to be useful alongside the SD-OCT which I have had in such diagnosis.
Would be interesting to know if anyone else has had either of these scans with any findings?
My eyes have looked perfectly healthy on fundus pics etc.
Hopefully if enough of us are diagnosed with this retinal issue more research will be directed towards it.
Would also like to add I know AMN is often associated with women but how credible is this... only 60 patients in some research and I have to wonder how many other people have been discharged as I almost was because on the usual scans things looked ok.
Any questions just ask! And good luck to you all in getting a diagnosis. I know how difficult it is trying to describe this and to be taken seriously when nothing can be seen on standard scans.
Another update: My doctors are saying that the OCT scans are consistent with a newly recognized entity called Paracentral Acute Middle Maculopathy (PAMM), "or something similar to that." I think someone else on this forum has received a similar diagnosis. That doesn't provide much more information, because as far as I can tell from searching the literature, this "disease" (or cluster of symptoms and scan results) has an unknown cause and no known treatment. However, it does appear that a vascular cause is a reasonable hypothesis, which many people on this forum have suspected for a while. I also have some unexplained white matter lesions on my brain MRI, which I'm thinking may also reflect a vascular problem.
In case anyone is interested:
https://www.ncbi.nlm.nih.gov/pubmed/23929382
http://www.ajo.com/article/S0002-9394(15)00268-8/abstract
Wondering what exercise everyone here does?
I used to do quite a lot of running and weights but with these spots associated with exercise often I've cut out everything and now just walk the dog. ***** as exercise was such a good stress relief.
Woke up with another seemingly permanent spot today :(
I stayed up late and woke up quite dehydrated.
Really hope this one goes away. It is about 4 o'clock in my left eye a cm or so from fixation :(
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
Hi all, now i want to make clear that i dont think we have to worry about AZOOR, check all the AZOOR forums, and not onr person mentions these 'tiny' camera flash spots after image effect we get. Also, they often complain of large fields of vision missing, and 'photopsia' or constant flashing lights in and around their missing vision, and this isnt us im afraid. Also, they say their condition worsens in bright light, as in the flashing lights become worse. I dont know about any of you, but i certaintly dont get constant flashing lights ? I get camera flash blindspots! Which are different.
http://imgur.com/58yRcGJ
This is my best attempt at trying to draw what I see sitting with my head approximately 2 feet from the monitor. They are from 2007, 2010, and 2015. Is this similar to what you all are seeing?