Eye Care Community
For those with the bright spot when blinking symptom
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Avatar n tn
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.

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Avatar m tn
Hi matt, since ive had this problem as far back as March 2015, ive felt like suicide many times because to live like this is truly horrific, its awful and i know this sounds terrible but sometimes i wish i wasnt born. But ive realised that although our vision is being eaten up for some unknown reason, that its not as bad we think. The anxiety is whats the worst, the fear of not knowing or what happen or what could happen etc. But if u accept it for what it is and that its most likely benign, it becomes more of an 'annoyance' for me. Just annoying, the anxiety that comes with it i tell myself that 99% the odds are in our favour, no diagnosis, all tests clear. Move on with your life and take each day as it is, which i know is hard to say. Then if a diagnosis comes thats great but if not worrying doesnt cure anything.
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Avatar m tn
Thanks guys much appreciated.
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Avatar m tn
Thanks Mel, I haven't been working out more than just walking 20 minutes too and from work each day.  My wife wants me to try meditation as well so I might have to bite the bullet and give it a go, however, I don't think I can give up my blackberry!!! lol.  
MRA follow up is on the 9th, first day the specialist gets back from holiday.  Hopefully something comes of it but I'm not expecting much.
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Avatar n tn
Not sure if this link will show up here and if it doesn't I will email it to you.  But check out http://www.healthjourneys.com/
I have several of the guided imagery and meditation series by Bellaruth Naparstek.  I like them.  I cannot meditate without help so I use the guided imagery and listen to someone else's voice.  It's calming and really does help you center yourself and focus on your breath.
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Avatar n tn
Is your follow up appointment with the retina doc?
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Avatar n tn
If so, I would definitely talk to him about Flammers/Vascular Dysregulation and the meds suggested by Dr. Flammer.  That is assuming nothing shows up that is affecting your carotid artery (which will be fine, I'm sure)  I think you need to try that med protocol (low dose CCB and Magnesium) and see how you do.
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Avatar m tn
Thanks Mel I appreciate the link. I'll give it a shot this evening.  Yeh follow up is with the retina specialist.  He seems pretty good and thorough so far - he does a lot of research into weird retina stuff.  His team of junior ophthalmologists seemed pretty good as well.

Yeh I am really hoping that I can get some sort of treatment plan going.  He told me not to take anything until after the follow up so I've been off everything even my fish il tablets.
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Avatar m tn
Argh, just had lunch and now have another damn spot. Hopefully this one fades has been around 15 minutes or so now.
Wonder why they happen often after eating. Very strange.
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Avatar m tn
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?
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Avatar m tn
Mine tend to go away after eating. Being hungry makes them worse.
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Avatar m tn
Funny enough low blood sugar seems to trigger mine as well. Squinting and eye strain seem to also bring them on.
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Avatar m tn
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.  
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Avatar n tn
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?
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Avatar n tn
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...
http://www.imagebam.com/image/6f6c8d481114956
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.
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Avatar m tn
I get pinpoint flashes occasionally as well. They don't bother me, I know they don't last.
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Avatar m tn
Well I got my Magtein magnesium in the mail today. Let's see if it makes a difference.
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Avatar m tn
a few of us have things like this.  I think it may be something called retinal migraine, although the definitions of this are fairly varied.  I've had these things since I was a kid.  I think they are migraine related.
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Avatar f tn
Rowowl, I 've been experiencing something similar for the last couple years. I'll be sitting watching tv at night and if I laugh or cough (and sometimes they are just random), I'll get a quick rolling ball of light in the periphery of my left eye. They look like phosphenes (the lights you get when you press your eyes), but no doctor has been able to explain why I'm getting these nightly.
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Avatar m tn
How's the magnetin going SpottyGuy?
matt
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Avatar m tn
Matt,

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.
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Avatar m tn
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.
Matt
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Avatar f tn
Beginning of Posterior Vitreous Detachment.
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Avatar m tn
Hi matt, i notice some in the periphery. If im in a dark room, staring at a white wall and suddenly turn on a low wattage lamp or if i have my phone on low brightness, and look at the wall, it illuminates all my permanent spots for a brief 2-3 seconds.
Keep noticing the blue field entoptic phenomena worse when standing up, this has to be a blood flow issue it has to be!!
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Avatar n tn
Hey Welshey,

I thought you only had one permanent spot.  Do you think you have more?

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Avatar m tn
Well, i have one since last year which is permanent, but when i do this method ^ it reveals loads of veins like im looking into my own retina, i can see my natural blind spots quickly as two dark golf balls.
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Avatar n tn
Yes, I see my vasculature and my natural blind spots with the method you described above. Also upon waking, it's like looking through cracked glass but it returns to normal after a few seconds.  I don't think those are blind spots because if I focus on them, they melt into my retinal vasculature and are obviously just bits of it.  It's all so bizarre.
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Avatar m tn
Just got home. No diagnosis or treatment plan. 

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. 
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Avatar m tn
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?
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Avatar m tn
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.
Matt
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Avatar n tn
My blood tests were done as part of a study too. I didn't have to pay anything either.  Mine was done 13 years ago though.  All clear.

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Avatar f tn
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.
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Avatar f tn
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:
carrageenan
sodium lactate
sodium phosphate
No nitrates or nitrites listed, but I think one of these things was possibly triggering my spots. None of them remained permanent, thankfully.
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Avatar f tn
Makkaraa - That's great news!  I had a similar issue, because I had started increasing my salt intake the same time I started the ginkgo, but I'm really hesitant to stop one of them to see which one is helping because I don't want the spots to start coming back regularly, hah.
Maybe once you feel comfortable enough, stop the magnesium for a week or so and see what happens?
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Avatar m tn
Hi makkara, great news! How much and what type of magnesium are you taking?
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Avatar m tn
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.
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Avatar n tn
You are on the right track!  Magnesium needs to be ridiculously high to be effective.  I have written to Dr Flammer and he responded with specifics about the calcium channel blockers.  He says the first to try is Nifedipine at 1mg a day, going up to 3mg a day if necessary.  It is only available in 10mg capsules here so I'm not sure how that works but I am going to ask my doc next week.  

As for magnesium, the conversions from his papers show that one should take 400-800 mg of ELEMENTAL magnesium a day.  Problem is, most of the mg in magnesium supplements is not elemental.  You have to look at your specific type of magnesium, figure out the percentage of elemental (it varies by type) and do the calculations.  You can find the info on specific types of mag and their elemental content online.

I have emailed Dr Flammer with a follow up about the specific magnesium he would recommend.  Also, I have  a great link on increasing your magnesium with supplements and other methods. I will dig it up and post.  

I'll keep you posted when I hear from Dr Flammer.  I have been increasing my mag slowly and it may be helping.  Too soon to tell for sure. Gingko gives me massive migraines so that is out for me.
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Avatar m tn
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.
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Avatar m tn
How long do you bend over for? Do you touch your toes?
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Avatar m tn
I usually bend over for as long as it takes them to go away, which is usually 20 seconds to a minute. If they don't go away after that then I know it's probably going to take a week to go away. I just bend far enough to put my head below heart level.
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Avatar m tn
Thanks for the info Sarah.  Deli meats are out for me as they cause me classic migraines as well.  I'm still getting temporary spots daily.  One of my larger ones from last year has got worse.  Interestingly I was reading back over my diary and noticed that when my migraine auras switched from the left to the right side, my permanent spots also seemed to switch sides and now occur in the left eye.  Strange but probably just a coincidence.  

I'm leaving my current role and transferring to another area.  This one caused a lot of emotional stress rather than just work stress because of a couple of managers.  I'm hoping the new placement will coincide with a reduction in spots.  I had a couple of good days this week, but back to multiple spots today which was annoying.  I'm guessing the stress of moving teams is getting to me (I've become a pariah since I've requested the move).

Funnily enough we were in a door shop here today... was terrible door frames everywhere and had very dim lighting with bright lights on the doors.  Thought I was going to fall over there were so many spots!

matt
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Avatar m tn
I notice, because i work in a clothing store on a saturday , when im on my lunch in usually sat down for half an hour -1 hour. When i get back to work which involves me standing up for a long time, as soon as i get back i get a wreath of greenish/purple/bright spots when blinking. I think this has something maybe to do with the blood finding it harder to reach the eyes due to the standing position from being seated. I usually get lightheaded when this happens (lasting 10-15 mins the spots and the lightheaded feeling)
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Avatar m tn
I was wondering if anyone else sort of has wierd blind spot lines in their vision in addition to the residue of the spots?  I seem to have quite a few of these.  Very strange.
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Avatar m tn
I'm also feeling bloody stressed about auto-immune retinopathy and other dystrophies that were mentioned.  I would have hoped that after four years of tests that some additional evidence would have popped up if these were the case.  
I'm not sure if I should go back to my regular ophthalmologist to talk about treatment options given that I didn't get much from the retina specialist expert guy.
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Avatar m tn
What do these blind spot lines appear like? And matt, trust me ive done my research on autoimmune retinopathy and the symptoms arent similar to ours. Plus, those blood tests youve recently had will show up with antibodies if it is autoimmune retinopathy. If your retina specialist has not rung back, id rule out autoimmune causes. Mel has had the blood tests and they dont come up positive so...
My natural blind spots are more noticeable for me, and when i wake up or squint i can see pixel spots, my own retinal veins and capillaries. This HAS to be a migraine link, like you said about your migraine auras in that comment^
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Avatar m tn
You saif matt , 'when these were mentioned' ?
Did your specialist mention autoimmune retinopathy?
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Avatar m tn
Matt, also, what were the specific erg results? Do you have any pictures?
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Avatar m tn
I have some dark lines that show up sometimes when viewing things with thin contrasting lines (like a white USB cable). Usually this only happens when I'm not wearing my glasses, otherwise I rarely see them. I've wondered if this is just veins distorting the light received on the retina, which is then corrected by my glasses.
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Avatar n tn
Matt,
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.
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Avatar n tn
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."

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Avatar n tn
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.  

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Avatar m tn
Thanks for the info melc
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Avatar n tn
Dr Flammer also told me that it can take up to a month to see any visual effects from the magnesium.  CCBs would work faster, he said.
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Avatar m tn
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
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Avatar m tn
Another permanent spot this evening :( I'm so devestated. Close to my central vision been there 2 hours now and quite large :( . I can't work out what the he'll is going on :(  
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Avatar m tn
That's quite a few bad ones you've had recently. Did the other ones eventually go away?
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Avatar n tn
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.
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Avatar m tn
Glad you were able to convince her to give you the meds Dr. Flammer recommended! I'm not sure how easily I will be able to persuade my doctor into doing the same. Hopefully everything works great and you see an improvement!
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Avatar m tn
Im noticihg alot more static spots when squinting ! Really annoying
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Avatar m tn
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.
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Avatar m tn
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.
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Avatar m tn
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!
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Avatar m tn
Matt, I got a bad one while sick once, but I'm not ill often so I'm not sure if there's a pattern to it.
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Avatar m tn
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.
thanks
Sam
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Avatar m tn
I think you are the doing the right thing Sam seeing the ophthalmologist. Is the spot always there or does it come and go?
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Avatar m tn
I've been working on a building site the last few weeks. I've noticed that if the lighting is consistent I don't get many of the spot. However, when I am walking through site it is constantly going from bright flood lit, to day light to dimly lit to darkness. After a few minutes of this I am getting temporary spots almost constantly. It is like my retinas are spasming at the change of light or can't keep up. This aligns with my experience of getting more spots at sunset. It seem in the dark they occur more often.
Do others experience this sort of thing with changes in lighting triggering spots?
Matt
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Avatar m tn
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
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Avatar m tn
Yeh I get the crazy stuff when trying to go to sleep as well. I found I can almost control the visuals at night to some extent which is weird.
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Avatar n tn
I do notice temporary spots when changing lighting environments. What color are your temporary spots, Matt?
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Avatar n tn
Yes, I've experienced the lava lamp when going to sleep since childhood. This is actually not uncommon. A lot of people experience that. I also see it during deep breathing exercises and mediation. I can control it somewhat with my breath.  
I see all sorts of closed eye phosphenes but again, not sure that is related at all since it is something many people experience. I think we just tune into it more because we are paying such close attention to our vision
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Avatar m tn
Matt, do you still get the pinhole dead pixel spots in your central field of vision? And what do they look like to you? Anyone noticed the slowing if the blue field entoptic phenomena?
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Avatar m tn
melc75, how is the CCB treatment going?
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Avatar n tn
No change yet but I'm still going up with the dosage. It's just been one week today
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Avatar m tn
Usually start off either dark purple / green and fade to bright. They stick around in the bright phase for for few min to half an hour if they are really bad. I often seem to get them at lunch time when I go for a walk for some reason but not in the morning.
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Avatar m tn
Yep still get them. Not as frequently as a couple of months ago and they seemed to have moved out a bit further from centre (they are a bit bigger as a result). They look like shiny bright spots. But black when looking at a white background. Haven't noticed a slowing of my little blood flow worms. Doesn't mean it isn't there, just haven't noticed.
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Avatar m tn
What is the dose they want you to get to Mel?
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Avatar n tn
3 mg a day. I'm at 2 mg as of yesterday.
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177275 tn?1438375244
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Avatar f tn
Can u tell me what the dr said? I have the same thing for the last 48 hours! So annoying!!
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177275 tn?1438375244
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Avatar f tn
Any update @sam0007
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Avatar m tn
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.
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Avatar m tn
Glad someone else has this correlation. Are you on any medication or treatment?
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Avatar m tn
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.
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Avatar n tn
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.  
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Avatar m tn
Any progress with the nifedipine?
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18453104 tn?1464996067
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......

Diana
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18453104 tn?1464996067
Oh yes, Also the blind spot has like a shimmer to it when I look at any light eye open or closed almost like it blinks on its own!
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Avatar m tn
Having another bad one right now. Haven'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's left the residual bright line/blind spot that's noticable on dark surfaces. Hopefully it fades. Feeling quite anxious :(
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Avatar n tn
Who here has floaters and blue entoptic phenomenon in addition to the blinking spot?
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Avatar m tn
I do! Really bad entoptic phenomena
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Avatar m tn
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.
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Avatar m tn
Well, it looks like I'm going to see a neurologist now. Hopefully this brings me a step closer to a diagnosis and treatment.
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Avatar m tn
Morning Spotty guy. There is a connection with being ill for me, I don't get allergies so I couldn't say.
I've had a bad run the last few days days picked up several small pixel spots which seem to persist. Lots of temporary larger spots as well.
The pixel spots are damn annoying and seem to persist for a few days to a month. Interestingly I seem to wake with them more often after sleeping on my back. Wonder if I have sleep apnea?
Matt  
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Avatar m tn
I have had a lot of floaters since my teen years. I also get the entoptic phenomena, however, some days it I barely notice it, while others I see it everywhere.
Post classic migraine is when it is at its worst.
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Avatar m tn
Interesting you say that, there was a period where I couldn't sleep on my back at all because I kept waking up with spots when I did it.
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Avatar n tn
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.
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Avatar m tn
Bad day for me. After a few ok days I've had 4 bad spots before 11am!! I had pizza for tea with the family last night and didn't get much sleep (be late and up early). Hopefully it will settle down now :s
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Avatar m tn
How is the ccb going Mel?
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Avatar m tn
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. :)
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Avatar m tn
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.

Still hoping it may disappear.
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Avatar m tn
Also, seem to have a bad ringing in my ears as well. Really weird. I sometime get a ringing that lasts a few minutes but this has lasted all morning.
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Avatar f tn
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.

I am sorry if my prior post led anyone astray.
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Avatar m tn
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.
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Avatar m tn
I too had white matter lesions on my mri
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Avatar m tn
A lot of migraine sufferers have white dots on the mri. Are you guys seeing a neurologist?
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Avatar m tn
My first and only permanent spot came after a battling a sore throat / cold.
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Avatar m tn
I used that technique just this afternoon and it seemed to get rid of a spot right away. I hope doing this isn't going to create problems of its own though,.
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Avatar m tn
matt009au, how many permanent spots do you have?
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Avatar m tn
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.
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Avatar m tn
this is a long shot, but since you mentioned mouth ulcers, have you ever thought about Behcet's Disease?
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Avatar m tn
Thanks for the tip plankton, to be honest I've never even heard of it!!
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Avatar m tn
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
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Avatar m tn
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.
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Avatar f tn
Did a neurologist give you a diagnosis/probable cause for the lesions?
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Avatar m tn
No, by the way do you get every day temporary spots? I do all the time
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Avatar m tn
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.
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Avatar n tn
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.  
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Avatar m tn
Awesome news Mel, we're you on the aspirin and other treatments before the ccb?
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Avatar n tn
Hi Matt,

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. :)

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Avatar n tn
Huh? "Worms squiggling about/slowing down" sounds like simple, ordinary floaters. Sorry if you know that it's not floaters, I just don't want you to panic about ordinary things :)
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Avatar m tn
No, its not floaters i know what they are. What im seeing is my retinal blood vessels and the blood flowing through them, probably more visible due to lack of perfusion as flammer says.
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Avatar f tn
Yes, I get spots that last from seconds-minutes, then fade without forming an apparent blind spot.
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Avatar m tn
Do you get these temporary bright spots all the time?
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