Birdlady Posted July 11, 2010 Report Share Posted July 11, 2010 I've been thoroughly examined by 4 ophthalmologists. Three of them said I had a vitreous detachment and the last one who was the senior doctor in that office discriminated me by my age and said there was no way I had one. Took a quick look at my eyes and said, "Nope the vitreous is good. There is some tugging but it is still attached fine". I have no idea who to believe at this point, but don't really want to go back to that office. I got strung along for 8 months thinking that I was going to have a retinal detachment at any moment. The other doctors made it sound like it was inevitable...I get these really weird lights in my eye. They are very difficult to explain, so I will give it a shot. You know that effect you get if you look at a camera flash? I get those effects stuck in my vision out of no where. I do not have to look at a light or image for them to appear. It can be horizontal or vertical lines, dots, blobs or just a random shape. They are more noticeable if I blink repeatedly. I found some other people with this same problem here. It can happen in either eyes. One day it can be my left (like today) tomorrow it can be my right eye. I now believe it is related to whatever problem is causing my POTS. When I was on a beta blocker for 2-3 months, they slowly went away and then disappeared completely. Then I came off the beta blocker to get more testing done and now after being off of it for more than a month, they are back. Every day I wake up and think, I wonder what new spot I'll see today. Sometimes I can see them in my dream before I wake up.I don't know if anyone else has any eye symptoms here or not, so I wanted to reach out and see!PS: This will be the first question I'm asked, so I'll just nip it in the bud now. I do not suffer from headaches or migraines. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted July 11, 2010 Report Share Posted July 11, 2010 I've been thoroughly examined by 4 ophthalmologists. Three of them said I had a vitreous detachment and the last one who was the senior doctor in that office discriminated me by my age and said there was no way I had one. Took a quick look at my eyes and said, "Nope the vitreous is good. There is some tugging but it is still attached fine". I have no idea who to believe at this point, but don't really want to go back to that office. I got strung along for 8 months thinking that I was going to have a retinal detachment at any moment. The other doctors made it sound like it was inevitable...I get these really weird lights in my eye. They are very difficult to explain, so I will give it a shot. You know that effect you get if you look at a camera flash? I get those effects stuck in my vision out of no where. I do not have to look at a light or image for them to appear. It can be horizontal or vertical lines, dots, blobs or just a random shape. They are more noticeable if I blink repeatedly. I found some other people with this same problem here. It can happen in either eyes. One day it can be my left (like today) tomorrow it can be my right eye. I now believe it is related to whatever problem is causing my POTS. When I was on a beta blocker for 2-3 months, they slowly went away and then disappeared completely. Then I came off the beta blocker to get more testing done and now after being off of it for more than a month, they are back. Every day I wake up and think, I wonder what new spot I'll see today. Sometimes I can see them in my dream before I wake up.I don't know if anyone else has any eye symptoms here or not, so I wanted to reach out and see!PS: This will be the first question I'm asked, so I'll just nip it in the bud now. I do not suffer from headaches or migraines.Dana,I have the exact visual symptoms. Before POTS, I had about 4 migraines sporadically through my life, accompanied by auras and visual disturbances. The POTS visual disturbances are very similar to a migraine aura. Beta blockers are used to prevent migraines. Even though you are not getting a full blown migraine I suspect this why the beta blocker took the visual disturbances away. I appreciate you bringing this subject up because I do have horrible POTS related headaches and a constant, persistent aura. I am going for more testing next week and will ask about a beta blocker. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 11, 2010 Report Share Posted July 11, 2010 If it is migraine aura -- I'm not sure from your description and I'm no doctor, then I want to tell you that I have migraine almost constantly -- I'm medicated for migraine so I don't get to feel full blown migraine pain every day. BUT, I do get the aura. Most of the time it's just weird, barely there aura -- it's like I'm trying to read ajust my eyes all the time because I'm not quite seeing things properly due to weird but very slight light effects, but can't explain it any better than that. It's certainly different from the usual visual aura I can sometimes get when migrain pain breaks through. Then it's more traditional visual aura for migraine.blue Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 11, 2010 Report Share Posted July 11, 2010 I get the migraine auras withOUT the headaches and at times they can be disconcerting. VERY random, rare & intermittent over the years. Sometimes it's like my glasses are dirty and I can't see straight in front of me or if I am looking at somebody I don't see their entire face.sometimes it's so bad my rectangle windows will look triangular. VERY bizarre if you haven't had these visual auras to explain.I have no idea how old you are so don't know what you mean by discriminated by age! Good luck with your eyes. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted July 11, 2010 Report Share Posted July 11, 2010 If it is migraine aura -- I'm not sure from your description and I'm no doctor, then I want to tell you that I have migraine almost constantly -- I'm medicated for migraine so I don't get to feel full blown migraine pain every day. BUT, I do get the aura. Most of the time it's just weird, barely there aura -- it's like I'm trying to read ajust my eyes all the time because I'm not quite seeing things properly due to weird but very slight light effects, but can't explain it any better than that. It's certainly different from the usual visual aura I can sometimes get when migrain pain breaks through. Then it's more traditional visual aura for migraine.blueBlue,Would you find sharing with me what medication you take to prevent the full blown migraines? This is a constant problem for me. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 12, 2010 Author Report Share Posted July 12, 2010 I really don't think it's headaches or migraines for me. That's why I threw that in there at the end. I get a headache maybe once a month if that and when I get one, it is usually because I'm underreplaced on the hydrocortisone and a quick stress dose brings me out of it. It's amazing how many symptoms one can get with low cortisol I wish I could draw a picture of what I get because I've seen pictures/read descriptions of what a migraine aura looks like and that is not what I'm getting at all. My spots do not move with my vision or go from the middle of the vision out to the edge. These spots are burned into my vision. There really is no other way to explain it. If it's in the upper right hand corner it will stay there until it fades on its own. The short line I had stuck in my vision this morning is gone now. Usually goes away in a few hours, but I have had a few that stayed 2-3 days before. It's most noticeable when I am looking at something lighter in color like a window with a blind on it or the computer screen. In areas with lower amounts of light, I can't really see the 'bright spots', which always confused me. If it is a bright spot when can't I see it in the dark? haha Every once in a while, I just get a spot in my vision for a split second too. If I'm looking at a white wall it will be the negative image or if I'm looking at a dark wall it will be the positive image. It's so hard to explain all of this and I am terrible with paint programs to even attempt to draw this. When I said the doctor discriminated me by age, I mean because I am young. Normally you won't have a vitreous detachment until you reach 60+. I'm 26 (25 at that time) the doctor just said there was no way I had that and the other doctors must have been mistaken. He took a quick look at my eye and went..yep it's still attached. That was it. I have dark floaters in my eyes and can see a lot of weird stuff in my vision that I don't think is normal. At night my vision almost seems snowy. I'm not sure how else to explain that either. The doc ordered an MRI of my brain and orbits because brain cancer runs in my family, but everything was good. They did no other tests on me because of my age. He said they really weren't worth the time or hassle since he could see nothing physically wrong with the eyes. /shrug I have to wonder if the beta blocker helped because it's lowering my norepinephrine levels? I have mildly elevated levels upon standing. My sister used to suffer from severe headaches and migraines her whole life. Then it got to the point where no amount of pain meds would stop them. A few weeks later she found out it was a brain tumor...,so trust me I take headaches quite seriously. I just don't suffer from them at all and am happy/grateful I can say that. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 12, 2010 Report Share Posted July 12, 2010 Blue,Would you find sharing with me what medication you take to prevent the full blown migraines? This is a constant problem for me.Hi TxPOTS,I wish I could say one of the many many preventatives they tried on me but they didn't work. Eventually they put me on opiates because I have chronic daily migraine. I take 5mgs of oxycontin 3 times a day. That's a very low dose for opiates. It works pretty good but messes with other pots symptoms. The pain specialist has offered to up the dose a bit but I won't do it. I stopped the oxycontin 2 weeks ago and had no withdrawals at that dose except that I went to the toilet for 2 days a few times (constipation is a pots thing, had it long before they put me on oxy) then the bowel movements stopped. I've read enough to know that the higher the doses of oxycontin I might take the worse the withdrawal will be when/if they finally come up with a workable solution for my migraine. But the migraine came back with a vengence and I had to start up the oxycontin again. The level of pain was just too much to bear. I've given too many years of my life to chronic daily migraine and I won't be taking myself off the oxycontin again -- until they come up with a better answer.The only thing that did work as a preventative for a while was an anti-histamine called periactin (in Australia). I think the generic is called cyproheptadine. You could do a search on it. If your doc has no problem with you taking it I'd give it a go. It worked for me the first time around for 3 months. Did not have a migraine for the entire 3 months as long as I took periactin at night. I think the dose was about 12mgs-- not one hundred percent sure of dosage. Then it stopped working one day and that was that. I left it another year before trying it again and it worked for longer but not quite as effective. Still it was enough. Again it stopped working. I've tried it again since but it no longer works for me and it started giving me worse restless legs than it used to as well as some body jerking when I stopped moving and lay down to go to sleep. I think that's it for the peractin for me. my pain specialist told me not to try it again. but it was good when it worked. Non addictive and helped me sleep. I read somewhere that periactin can stop working suddenly for some people. Hope this info helps a bit, i know opiates weren't the answer you were looking for.blue Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 12, 2010 Report Share Posted July 12, 2010 DanaHave you had a Visual Field Test? the effects your eyes have almost sound like a post eye surgery deal, only those problems are permanent. I had laser iridotomy surgery for Narrow Angles we tried to open up. They blew very tiny holes into my irises in an attempt to help my anterior chambers drain, and widen my angles to prevent closure, and help keep my eye pressures low.I had glare for a long time and still do at night, or on cloudy days. Some people get a white line glare or double vision.After surgery, I had black pepper spots over my left eye post surgery (the rt eye was a piece of cake a few days before!!) but they moved when I blinked. I realized they used extra goop on that eye (Put a glass over the eye to use the red laser, so my eye stayed open, the lubrication protects corneal abrasions during the procedure) Spots disappeared/lessened in 90 minutes.What you have sounds annoying but I want to make sure you've had detailed check up. I would be curious if they did a VFT or a Gonioscopy..the latter is usually done for Glaucoma patients (I've got VERY Narrow angles thus a glaucoma suspect for rare glaucoma, as opposed to Open angle) or to check for other problems.If they are all shrugging you off due to your age, demand somebody give your eyes a closer look. On the other hand the fact things fluctuate makes me wonder about the fluid in your eye. I hate when doctors dismiss things due to age. My nephew was in his late teens or early 20's and had a detached retina. He had surgery but has a tiny blind spot to this day.Good luck getting check out and ANSWERS to your situation. Sometimes an ASTUTE, caring optometrist can check/perform the tests I mentioned for you in a more caring manner. I've had a great opto for 0ver 10 years. Been an anchor after my surgery.P.S.Folks you do NOT need to QUOTE entire posts to answer. Just hit REPLY with the person's name you want to address.Duplicating posts is taxing on old tired eyes and not necessary. Quote Link to comment Share on other sites More sharing options...
Pokey Posted July 12, 2010 Report Share Posted July 12, 2010 I went through this game for a while, but mine was very blurry vision -- so blurry I couldn't see. The optometrist confirmed something was wrong, but then the big wig neuro ophthalmologist (who spent no time with me) with a team of interns, said there was nothing wrong, and the my GIANT pupils were not so large to be statistically significant. Statistically significant for what??? I still can't see clearly, no matter. POTS wreaks havoc on my vision, and when I have migraines, it's even worse. If only we had integrated care, where the POTS doctor spoke with the ophthalmologist.So my hear goes out to you. Quote Link to comment Share on other sites More sharing options...
issie Posted July 12, 2010 Report Share Posted July 12, 2010 I have at times what is called a "silent miagraine". There is no headache, but there is visual problems. Have lights and black specks allot.At times, I do have visual problems and can't see clearly and everything looks fuzzy. Like walking into a steamy shower. I can't see to read the menu on the TV. At other times, my vision is clear. Not sure what causes these symptoms though. Don't know if its related to the silent migraines, or EDS or what. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 12, 2010 Report Share Posted July 12, 2010 wanted to clarify I also NEVER get the headaches with these things.but do get occassional floaters and stuff. The bizarre distortion of vision or temporary blindspots/trouble focusing, are "migraine auras" even if you never get the headache. Also my optometrist says they can happen randomly or after stress or emotional upset. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted July 12, 2010 Report Share Posted July 12, 2010 Sounds like a migraine with an aura. Thats exactly the way I describe it - like a camera flash or when you look at the sun, but those spots don't go away in seconds, its more like 20-30 minutes. Usually followed by intense headache, nausea/vomiting, sensitivity to light and/or sound, etc. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 12, 2010 Author Report Share Posted July 12, 2010 Sophia,I had the most basic things tested. My optometrist did the visual eye exam and that was good. The other doctors made me turn my eye ball in all directions as they were looking at my retinas. The one thing they said I have is something called white without pressure. The first 3 doctors said that my retinas were very thin in that area, so that was probably why I saw the first episode of lights in my left eye. Apparently the WWP looked very weird to him and wanted a senior doctor to look at it. Then this was the guy basically dismissed everything the other doctors said and told me I was just too young to have these problems. He said that WWP means nothing and that it's normal. Right...I guess I got strung along or something by the other docs. This is the BEST ophthalmologist group in the area, so if I went any where else, it would be a 'downgrade' of sorts.Those other weird tests you mentioned, I did not have done. It's pretty rough being young when you are sick these days. No one takes you seriously at all and basically just blow you off. I was always the youngest person in their office by about 20-40 years...How does one know if they are having a silent migraine? haha Maybe this sounds like a dumb question but I really don't understand it at all. I'd be afraid that these spots are being blamed on "silent migraines" when its' actually something else that hasn't been found yet. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 12, 2010 Report Share Posted July 12, 2010 DanaNever heard of WWP issue so did a quick google. Apparently it is a condition that means nothing thus why do doctors bring it up? which is the same thing this doctor said when asked this questions elsewhere http://www.medhelp.org/posts/Eye-Care/Whit...ure/show/988636 Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 13, 2010 Author Report Share Posted July 13, 2010 Yeah I've seen that post before. If it's normal then...why even mention it or even have a medical term for it? Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted July 13, 2010 Report Share Posted July 13, 2010 Thank you for posting your experience. I hope my POTS specialist can work with me to improve the pain by improving the cerebral hypoperfusion that is causing my pain. If we exhaust all treatment options in this arena, I will have to move on to a pain specialist. I know what you mean about the opiates worsening the other POTS symptoms. At this point, I just want the pain to stop. I'm glad you found something to ease the migraines. It's all about quality of life. I haven't seen cyproheptadine in ages though I recall studying it way back in pharmacy school. How interesting. Quote Link to comment Share on other sites More sharing options...
Nikki Posted July 15, 2010 Report Share Posted July 15, 2010 I posted a topic about this today (and saw your reply, so I thought I'd check out your post!). My vision is the same way the past few days..I went to the eye doctor today. He just squeezed me in (I have a full exam scheduled for next week) but he seems to think this is a busted blood vessel and that it will clear up and go away on its own. So I'm guessing it's that, or a migraine. I do get ocular migraines, and I've had distorted vision before, but it never stuck around this long..so I don't know. I'm just hoping it goes away on its own. I never really get headaches either, but there are all different kinds of migraines, so this could just be one of them. I hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Crow Posted July 15, 2010 Report Share Posted July 15, 2010 I have floaters, visual snow and double vision in 1 eye. My eye Dr believes me but the retina specialist thinks I'm nuts. After a retina scan he diagnosed a macular pucker on one visit, but it had disappeared on the next. Still have the issues. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 15, 2010 Author Report Share Posted July 15, 2010 I am trying to make a picture showing what I see but I'm having a very hard time capturing it. I'm not very good with paint programs. If it turns out half-way decent I'll post it. Thanks to both of you for posting here. I wonder if the busted blood vessel could be from all the up's and down's in BP/HR we suffer from on a daily basis? I can't imagine this is good for our eyes. I haven't had any lasting spots today so that is good news.Edit: Here's my pathetic attempt to show what I see. I don't see all of these spots at once, but it's just example of the different shapes I've seen before. I have both positive and negative after image effects, so that's why I threw in a dark spot too.The more I blink, the more pronounced the spots become. They don't twinkle or flutter or anythign like that. They are just very very bright. I can't even fully capture how bright they are. Quote Link to comment Share on other sites More sharing options...
jem15 Posted July 18, 2010 Report Share Posted July 18, 2010 I have/had a couple of weird visual things too. The ophthalmologists say my eyes look good, and just chalk up the images to occular migraines, where you get the visual disturbances, but without any headache. Usually if its the occular migraine, it'll go away in about 30min or less. I've had kinds that look like what you drew, the bright images, once it looked like triangles or like looking thru a prism of sorts... that kind went away within 30min, so I was assuming that was an occular migraine.I have floaters so I know what they are, and the images I see are not that. One of the other weird things I've had for years is there 24/7, and its like constant irridescent squiggles/sparks shooting back/forth across my visual field, they move on their own, not with my eye direction. And yea, they're most pronounced against light backgrounds, like the sky or computer.. sometimes if it's a darker background, like a rug, it'll look like somethings moving, like a bug, then I realize it's just my stupid eyes. Doctors have no idea what this is, and just deem it "visual disturbances".. after learning about the POTS/Dysautonomia, it seems that might be an explanation, but I dont know if we'll ever know for sure.Funny though, that you mention about it sometimes looking like the aftereffect on when you look at a light, or camera. sometimes I get that and it goes away, so I think just, the occular migraine. But recently i've noticed a small spot like that and it seems to be lasting days. Depending on the background , it's not always noticeable, but I"m now realizing it's still there and been there for a while.. I've taken to ignoring my other visual stuff, but it's bothersome when a new one pops up. I just had my eyes checked recently though and by different drs, and doubt other doctors will have answers or take it seriously. You're right, they say youre too young or think youre crazy... or what I get more now is doctors believing me, they just dont know and so they just say I'm very atypical and weird, and an enigma, but dont do anything about it. Oh how I wish the medical system was different... a magical world where doctors collaborated, had the time/desire to research if they didn't know answers, and/or at least try to figure out problems that aren't easy. Quote Link to comment Share on other sites More sharing options...
Tas.tsmith Posted April 1, 2018 Report Share Posted April 1, 2018 On 7/12/2010 at 10:19 PM, Birdlady said: Yeah I've seen that post before. If it's normal then...why even mention it or even have a medical term for it?  This is a very old forum but I have some ophtho experience AND I have these symptoms. Is birdlady still around? Quote Link to comment Share on other sites More sharing options...
Shannoncr Posted May 2, 2018 Report Share Posted May 2, 2018 On 7/11/2010 at 3:25 PM, Birdlady said: I've been thoroughly examined by 4 ophthalmologists. Three of them said I had a vitreous detachment and the last one who was the senior doctor in that office discriminated me by my age and said there was no way I had one. Took a quick look at my eyes and said, "Nope the vitreous is good. There is some tugging but it is still attached fine". I have no idea who to believe at this point, but don't really want to go back to that office. I got strung along for 8 months thinking that I was going to have a retinal detachment at any moment. The other doctors made it sound like it was inevitable... I get these really weird lights in my eye. They are very difficult to explain, so I will give it a shot. You know that effect you get if you look at a camera flash? I get those effects stuck in my vision out of no where. I do not have to look at a light or image for them to appear. It can be horizontal or vertical lines, dots, blobs or just a random shape. They are more noticeable if I blink repeatedly. I found some other people with this same problem here. It can happen in either eyes. One day it can be my left (like today) tomorrow it can be my right eye. I now believe it is related to whatever problem is causing my POTS. When I was on a beta blocker for 2-3 months, they slowly went away and then disappeared completely. Then I came off the beta blocker to get more testing done and now after being off of it for more than a month, they are back. Every day I wake up and think, I wonder what new spot I'll see today. Sometimes I can see them in my dream before I wake up. I don't know if anyone else has any eye symptoms here or not, so I wanted to reach out and see! PS: This will be the first question I'm asked, so I'll just nip it in the bud now. I do not suffer from headaches or migraines. Hi, have you been tested for uveitis? My father has it. It’s an autoimmune disorder & he had to see several doctors before anyone had been able to diagnose him. (I think autoimmune disorders are common in patients with POTS, from what I’ve been reading) For what it’s worth, my dad did have pain/pressure behind his eyes & that’s why he originally went to the doctor. He still has floaters but he’s in remission right now (knock on wood) he was on steroids for a while for the inflammation. Hope you find some answers! shannon Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 2, 2018 Report Share Posted May 2, 2018 Haven't completely read all the responses, but "ocular migraine" fits. Probably why beta blocker worked. They are migraines without the headaches, just the aura. Think a couple of people inferred that. Quote Link to comment Share on other sites More sharing options...
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