Sudden Loss of Eyesight In One Eye?

[moosey]

So I've been diagnosed with POTS/hEDS for six years now, and I've never quite experienced anything like this before. Sometimes, when I stand up and go into a dark area from a light area, my eyesight in my right eye will go out. Sometimes this happens when I wake up in the morning as well, or if I overexert myself. It just seems so random. It's not painful, sometimes it's accompanied by a headache right behind my right eye, but for the most part, it doesn't hurt. My left eye will still be able to see things, but when I just open my right eye, all I see is black. It takes anywhere from 2-10 minutes to resolve. I've been to my GP, but they don't seem to know what's going on. I'm wondering, does anyone else out there with EDS/POTS experience this?

[Anamaria]

First I’d like to point out that we have the same diagnosis! You’ve had your diagnosis longer than mine so I’d love to get to know some of your symptoms to see if any are similar and what you have found to help. I have eye issues as well and recently started seeing a neuro opthamologist. Have you seen one? 

[StayAtHomeMom]

I would see if during one of these episodes your pupils are dilated differently. It may be that the one eye's dilating response is not correct. If it is different see if you can snap a picture or take video so you can show the doc. I would suggest an ophthalmologist it may be ocular migraines too (does not always have a headache). If it is the dilating response have them check your hormone levels. Make sure your cortisol (and the other hormones that go with it) is normal. 

[moosey]

2 hours ago, Anamaria said:

First I’d like to point out that we have the same diagnosis! You’ve had your diagnosis longer than mine so I’d love to get to know some of your symptoms to see if any are similar and what you have found to help. I have eye issues as well and recently started seeing a neuro opthamologist. Have you seen one? 

I have not. What did the neuro opthamologist say about your eyesight? I'm new here, so I don't know how this all works, but if you'd like to DM me, I'd be happy to compare notes. 

[moosey]

1 hour ago, StayAtHomeMom said:

I would see if during one of these episodes your pupils are dilated differently. It may be that the one eye's dilating response is not correct. If it is different see if you can snap a picture or take video so you can show the doc. I would suggest an ophthalmologist it may be ocular migraines too (does not always have a headache). If it is the dilating response have them check your hormone levels. Make sure your cortisol (and the other hormones that go with it) is normal. 

I've done a bit of a test myself by covering my eyes and one at a time testing their response to a bright light bulb. My right eye's pupil doesn't contract when exposed to light during these episodes; while the other eye does exactly what it should. You mentioned hormone levels- if I had raised cortisol levels, wouldn't both eyes be affected? I'm not quite sure how it all works. Do you know of any cases where an ocular migraine causes temporary blindness in one eye? I'm really trying to figure out if this is a thing common to EDS/POTS or if it's something different. 

[WinterSown]

Do you have a neurologist?

5 hours ago, moosey said:

So I've been diagnosed with POTS/hEDS for six years now, and I've never quite experienced anything like this before. Sometimes, when I stand up and go into a dark area from a light area, my eyesight in my right eye will go out. Sometimes this happens when I wake up in the morning as well, or if I overexert myself. It just seems so random. It's not painful, sometimes it's accompanied by a headache right behind my right eye, but for the most part, it doesn't hurt. My left eye will still be able to see things, but when I just open my right eye, all I see is black. It takes anywhere from 2-10 minutes to resolve. I've been to my GP, but they don't seem to know what's going on. I'm wondering, does anyone else out there with EDS/POTS experience this?

It sounds like you are describing TVL, Transient Vision Loss which is a temporary loss of sight. You can call your neurologist and discuss if coming in for an exam is warranted to determine TVL and how to correct the condition, it is very treatable. I had bilateral TVL earlier this year; my EP made a drug change and it was gone. 

[yogini]

If this is a new symptom - one that isn’t super common for POTS -I would definitely go to your doctor to discuss. Strange that it is one eye and not both eyes. This could be POTS related or not.  

[StayAtHomeMom]

I remember reading something about a hormonal disease that can cause uneven pupil response. I can't remember exactly. It was when I was seeing an endo to see if I had hyperPOTS (he refused the test I wanted but tested my hormone levels instead). If I remember right it my research had to do with sargent's white line too.

Sorry it is kind of vague. I don't remember exactly, I am tired this morning and I haven't had my mountain dew jolt. 

I have had a few ocular migraines and I get this gray spot that covers part of my vision in one eye. Freaked me out the first time it happened. I only get them about once every 3 years or so though. 

I suspect this is something unrelated to your POTS/EDS. BTW how did your get your EDS diagnosis. What kind of doc?

[blizzard2014]

Have you ever heard of Adie's Pupil? I hope I'm not breaking any rules by posting this. It's just something to read. I read about this before when I was researching my syptoms. 

https://rarediseases.org/rare-diseases/adie-syndrome/

[ddschool]

If your vision change isn’t related to your BP dropping, you might want to look into Temporal Arteritis. Happened to me, & I always have to carry Prednisone in case it happens again.