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For those with the bright spot when blinking symptom
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Avatar m tn
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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Avatar m tn
The other thing I've noticed is that some of the smaller ones are like little Cs or curved shaped.
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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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742651 tn?1455203846
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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742651 tn?1455203846
I think 10-20 mmol is equivilent to 180mg - 360 mg
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Avatar m tn
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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Avatar n tn
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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Avatar n tn
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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Avatar n tn
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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Avatar n tn
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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742651 tn?1455203846
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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Avatar f tn
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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Avatar n tn
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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Avatar n tn
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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Avatar m tn
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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742651 tn?1455203846
Laticeyes,
That is great news!
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742651 tn?1455203846
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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Avatar m tn
just had mine done this arvo and it was 120/70
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Avatar m tn
What mg ginkgo are you taking? And how many a day?
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Avatar m tn
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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742651 tn?1455203846
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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Avatar m tn
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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742651 tn?1455203846
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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Avatar m tn
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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Avatar n tn
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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742651 tn?1455203846
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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Avatar m tn
I think we should ask about vascular dysregulation instead of flammers. Probably more recognisable.
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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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Avatar m tn
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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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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