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For those with the bright spot when blinking symptom
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

How about you?
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Mel when you tried the CCB which one was it and did it work?
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I have been on nimodipine and verapamil.  Both stopped my migraines but didn't help the visuals.  My most recent was nimodipine.  I was taking a high dosage though and having terrible cardiac side effects.  My friend who I mentioned above with the magnesium takes a small dribble of nimodipine three times a day. It is a liquid fill capsule so he pierces the 30mg capsule and drops out a third at a time.  This has seemed to work somewhat for him but it hasn't been tell adding the mag and also the astaxanthin that he has seen the greatest improvement.
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The specific brand of Magtein that my friend has been using with success is  LEF Neuro-Mag. It is available on amazon.  He takes one capsule at night and has seen almost a complete resolution of spots/flashes over the past few weeks.

He said if you go to the Magtein website you can learn about the underlying science as to why this magnesium is better than others. I am hopeful!

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Life Extension Neuro Mag :)
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I posted the link up on the top of my previous comment mel^
Mel, does your friend have the similar bright blobs as us?
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Yes, exactly the same Welshey :)
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And thank you for the link!
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I've been taking the Doctor's Best magnesium for about a year now. Unfortunately, I am unsure as to how much it has helped with the spots. Just like with the ginkgo, I seem to get them no matter what I do.

I think the choroid theory makes more sense. Last night I had a small spot in the very center of my vision (thankfully it went away), which wouldn't be explainable by retinal vasospasm since the retinal fovea is an avascular zone. But the choroid supplies oxygen to the fovea, which seems to explain things.
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You might give the Magtein a go (Magnesum L-Threonate)  It is a different form of magnesium that crosses the blood/brain barrier more easily which theoretically may make it more available to the retina/eye.  I've never had success with regular old magnesium and neither has the person who is having success with the Magtein.  Seems to be working for him. It's worth a shot!
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Magtein did list Doctor's Best on their website as one of the brands that uses their product, but now that I look at my bottle it seems that they have changed the formula. Mine says "Magnesium from magnesium glycinate/lysinate chelate," whereas Doctor's Best website now says they use Magtein. I'll try to get my hands on something with Magtein in it, but from what I've read the magnesium chelate should also be effective at crossing the blood/brain barrier. Originally I had started using the magnesium for treating depression, for which it has worked wonderfully. Wish I could say the same about my eyes.
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Hey Welshey, do your temporary white blobs get worse after bending over and then standing straight up? If I bend down, let the blood pool in my head, and then stand up straight again, after 3-4 seconds I see a bunch of small yellowish-white blobs all over my vision that last about 5 seconds or less. The same thing happens if I go from a crouching position to a standing position, even without moving my head. Obviously this movement causes a sudden drop in blood pressure, which makes an interesting correlation with my symptoms.
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Also forgot to mention that doing the opposite tends to alleviate my symptoms. Spots that have been bothering me for an hour or more often go away simply by bending over for 30 seconds.
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Hi spottyguy, yes this is exactly what happens. Say if i'm sat down , then quickly stand up i get a flurry of bright blobs temporary bright blobs in my vision. Also, i sometimes get a feeling of light headedness with a flurry of 'darker' purple camera flash blobs right around my central vision like Melc has described. I definately think this is vascular, im almost certain.
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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.

Thank you!!!

Pam
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Welcome Pam,
Sorry to hear about the situation. I'd try and book in with your eye doc as soon as he is back.
Generally the flashing / colours fades over a few weeks!
God bless
Matt
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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
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Woke up with another pixel spot a few mm from centre in my left eye. This is getting really old now!! I'm becoming too paranoid to sleep!!
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Sorry to hear about that, Matt. Hopefully it goes away soon.

And I know what you mean about being paranoid to sleep.
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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?
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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!!!
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Hi matt, how is this spot now?
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And when is your next appointment with the doctor who did the ERG?
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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
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Just looks blue to me.
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I seem to have darker spots that appear in my central vision when looking at the blue and blinking. Really weird.
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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".

https://www.youtube.com/watch?v=4oy0AOSmDwU

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.
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I said "rods"  I meant no blue cones. :)
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and blinking also brings out all of my vasculature and our normal peripheral blind spots.  Blinking will drive you mad. :)
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Has anyone here ever contacted some of the previous posters who are no longer active on this thread?

Soledad
CalliopeWoman
Stargazer

There are others but those three were very active a few years ago and seemed determined to find answers but then went silent.  Just wondering if anyone had updates.
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Ive spoken to a lady named mellisa who has had this problem for 10+years and has had no real issues.
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You sure you aren't talking about me? Another Melissa? :)
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No, another melissa haha!
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What name did she post under here on the thread?
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Melinda68 i think, oh sorry her name was melinda not mellisa! My bad
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What was she saying regarding her progression Welshey?
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Has she been on any treatment?
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I have a couple random questions for you guys.
Do any of you drink coffee/tea, and if so, how much?
Do you exercise? What type and how much/often?
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I used to have one large coffee a day.  Whenever I am having migraines or spots I stop.  I usually still drink a cup of tea a day.  This latest round I've cut out normal tea and replaced it with peppermint/ green tea.  Re exercise, I used to exercise a lot, working in factories and on site. I also lifted weights. Since all the permanent spots started in 2012 I really cut back on the weights.  I started running a lot in late 2014 but stopped that again when my second permanent spot appeared in 2015.  Now I don't do any high intensity exercise (which ***** because it is a really good stress release for me) and just walk a lot.  Minimum of 40min a day - usually double that.

matt
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Hi Sarah,

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?  

What about you Sarah?
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I drink about a cup of coffee every morning. I stopped for a few months a couple years ago, and if I remember correctly, the frequency of my spots decreased. I was still getting them though and love my coffee, so I started drinking it again.
I do about an hour of cardio 3x a week. I was getting a lot of spots when I was running every day. Could be coincidence; not sure.
Another thing that triggers them for me is high elevation. at 5000 ft in North Carolina, I was getting them nonstop and got another permanent one while there.
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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.
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How is the ginkgo working?

I have not noticed changes with the Magtein but it is still only a few days in and my understanding is that it takes time to build.  
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Melissa,
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.
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Ive been taking the ginkgo biloba 60mg tablets for 1 week now and has not worked for me, the ginkgo i take says it contains 24%ginkgo flavone glycosides.
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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!!!
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Matt,

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.

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Yep exactly the same.  Pixel spots in the centre and they get larger the further out it goes.  I have one way out to the side of my right eye which is massive - about the size of my normal blind spot, with a larger area of distortion around it.
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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.

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One question that I have is what part of our body/ brain is actually responsible for the regulation of the blood flow?  I wonder what has gone wrong in us.
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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.
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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...
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When you say you jammed your neck what happened?  I know that a friend of mine has his migraines linked to his neck issues.  Have you been to see a doctor?
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I used specific kind of shirt that was too tight so it pulled my neck down (big mistake).  My neck was so sore for rest of the week. It is not as jammed anymore luckily. I visited doctor on december and he checked both of my eyes and he didn't find anything wrong. He contacted neurologist but neurologist just said that my symptoms sound like migraine symptoms so no need for any tests.  I also had EEG (the sleep brain test) 3 years ago which showed some weird brain activity. But all brain activity was still easily on normal scale.
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Matt,
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...
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That is my thoughts as well Sarah.  My theory is that the pixel spots in the centre are the same phenomenon just only effecting a smaller area.  The other thing I wondered about was the nerve fibres and how they are supplied with blood.  
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The other thing I've noticed is that some of the smaller ones are like little Cs or curved shaped.
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This is the same with me.  My spots are smaller toward the center and can be bigger out on the periphery.  I don't ever have large temp spots in the center.  
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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'
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Interesting,  I can do the same.  I usually use the edge of the glasses technique. I've been obsessively doing the same all day today (and for the last weeks).  The one that is nearly dead centre in my left eye I just keep checking and trying to make it appear.  Interestingly I can still read with the eye ok.  I find after doing this all the time I see the damn spots everywhere and other wierd   I really want to go back to being normal.  Very cool that Dr Flammer is taking the time to email.  I'm contemplating low dose aspirin in combination with a CCB to see what happens.  
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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.
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Matt,
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 [6], a physiological calcium channel blocker (CCB), reduces the vasoconstrictive effect of endothelin-1 and improves BF regulation [6]. 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 [20], 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 [20].

The combination of magnesium with low-dose CCB not only improves regulation of blood vessels as observed with the Dynamic Retinal Vessel Analyzer [7] but also reduces retinal venous pressure and optic nerve compartmentalization [6]."
http://epmajournal.biomedcentral.com/articles/10.1186/1878-5085-5-11

Keep us posted about the low dose aspirin
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I think 10-20 mmol is equivilent to 180mg - 360 mg
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That makes sense sarah! Because i thought it meant 10-20mg! No wonder i felt nothing. I may try a high dose of magnesium and if that doesnt work i will add the CCB to it.
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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.

https://www.paleohacks.com/magnesium/help-me-figure-out-magnesium-how-to-calculate-elemental-magnesium-17726

The Magtein I have started has a lower amount of elemental than some forms, but the absorption is supposedly better.  
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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.  

Just my thoughts.  :)
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Another bit on magnesium.

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.
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Also, pretty sure the conversion of 10-20 mmol/day is 400-800 mg/day.  Now we just need to know if it's whole mg or just the elemental mg.

Does anyone who has been in contact with Dr. Flammer want to clarify the dosage and type?
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Melissa,

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?

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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.
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What does everyone's blood pressure run?

Mine is about 100 over 70.  So not overly low. But I suspect that it fluctuates greatly and dips heavily at night.
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Melissa,
I'm always about 90/60 to 100/70. When I was at Mayo last month, I had a 24 hour blood pressure cuff and at night my bp dropped to like 70/40. They stated in the note that this was normal for nighttime bp -_- There was nothing they could do, because I didn't realize this until after the 24 hours were over, but apparently I had the cuff on too tight, which gives false-high readings... so who knows how low it actually dropped while I was sleeping
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just had mine done this arvo and it was 120/70
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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.



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Laticeyes,
That is great news!
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What mg ginkgo are you taking? And how many a day?
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I also think we need to get the nailbed capillary test done for flammers to confirm whether we actually have dysregulation or not!
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Welshey,

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.

#rantover

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Surprised you haven't been banned with rants like this Sarah :P.
I survived the MRA, now just have to get back to the specialist in a week or two to get the results.
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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
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lol I was only teasing.  I agree it is disheartening that these sort of interdisciplinary and chronic issues are so hard to get traction with our medical system.  It is certainly not limited to just us.  It is that look at the whole person which seems to be missing - My ophthalmologist while awesome won't step outside the eye bit, the neuro the nerves and brains etc.  Need that person to look at the wellness of the patient as a whole and pull all the pieces together.
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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.
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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.
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I think we should ask about vascular dysregulation instead of flammers. Probably more recognisable.
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Update,

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.

Best of luck
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Hey stupid eye, yeah you are correct, although this is terribly worrying i doubt touch wood it is anything too serious. I keep getting those annoying dead pixel spots in my central field of vision, most seem temporary however.
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Is it just me or do some comments seem to disappear sometimes?  I could I sworn I saw one from welshey earlier today re the pixel spots.
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Argh, nevermind must be my computer all the comments have reappeared!!  I've been getting the dead pixels a lot lately as well Welshey.  How do yours change over the days?  Mine start out as a black dot and gradually over a few days to a couple of weeks seem to fade.  Sometimes the dots seem to have a wierd 'clear' sort of bubble around them or other dots next to them.  Very strange.  Some turn into little blind spots others seem to go completely.

I can't work out what is triggering them as previously I have only had a few instances of them occuring.  Very strange.
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Well woke up with another pixel spot a few mm from fixation in my right eye. Damn these things are annoying. I just can't put my finger on what is causing them.
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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.
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Really sorry to hear about that, Matt. I know how frustrating it can be feeling totally helpless about it all. It's not fair that anyone should have to go through this.
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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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Thanks guys much appreciated.
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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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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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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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Is your follow up appointment with the retina doc?
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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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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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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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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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Mine tend to go away after eating. Being hungry makes them worse.
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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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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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I get pinpoint flashes occasionally as well. They don't bother me, I know they don't last.
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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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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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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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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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Beginning of Posterior Vitreous Detachment.
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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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Well I got my Magtein magnesium in the mail today. Let's see if it makes a difference.
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How's the magnetin going SpottyGuy?
matt
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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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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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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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Hey Welshey,

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

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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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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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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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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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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.
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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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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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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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Hi makkara, great news! How much and what type of magnesium are you taking?
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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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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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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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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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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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How long do you bend over for? Do you touch your toes?
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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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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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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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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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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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You saif matt , 'when these were mentioned' ?
Did your specialist mention autoimmune retinopathy?
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Matt, also, what were the specific erg results? Do you have any pictures?
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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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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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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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Thanks for the info melc
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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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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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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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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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That's quite a few bad ones you've had recently. Did the other ones eventually go away?
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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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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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Im noticihg alot more static spots when squinting ! Really annoying
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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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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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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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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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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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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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