Vision Loss

[Birdlady]

I was curious if anyone else on here is having permanent, progressive blind spots appearing in their vision? Just to be clear I do not mean what you get when you stand up and feel presyncope and I also don't mean migraine auras. There's many threads about those, but I haven't seen many about other types of more permanent vision loss.

If you vision loss, can you describe what you are seeing and if doctors have any idea what is causing it? How many spots do you have? Are they fully dense (black spot) or are they more shiny and reflective?

I had a test done on Tuesday, so I'm waiting to hear back from the doctor. In the meantime, I'm just wondering if other POTSies are getting blind spots. Part of me thinks this is something else.

Thanks.

[Freaked]

I'm afraid I can't say that I have. I've certainly had temporary vision loss (when upright), and once it felt like there was a shadow over my right eye for two or three days. Also lost a fair bit of sensation and reflexes in the region and my whole right side (confirmed by docs), which never seemed to fully return. My coordination on that side did go back to normal at least (touch wood). Had a head mri that revealed a largish pineal cyst they didn't think would have caused my problems. Lack of blood to the head can cause many strange symps and they still don't really understand the relationship between pots and neuropathy, but certainly keep getting yourself checked out and a scan asap if you can. That's really the only definitive way check for a lot of stuff.

[bellgirl]

I have floaters and corneal issues, because of constant dehydration, hypovolemia, which causes severe chronic dry eye. I was put on erythromycin ointment for bletharitis, which is inflammation of my eyelids, and preservative free tears every hour for my dry eyes!! I would do a whole lot better with an IV once a week, especially in the summer.

[Birdlady]

Well my ERG came back normal, so now it's off to a neuro-ophthamalogist guess. My eyes are getting worse almost on a daily basis, so it's weird that they see nothing at all wrong with them.

It's also good to know that no one has really replied with similar symptoms. This lets me know this is beyond POTS or perhaps it will lead me to an underlying issue is that is causing POTS. Perhaps I will find out more answers to the larger picture. Unlike most POTSies here I've never been referred to a neurologist.

[The Last Centurion]

I have terrible vision, but caused by two different conditions. It was originally diagnosed as optic neuritis, but no one could ever explain the constant changes in heat. I actually had nerve damage from b12 deficiency which is causing a general dull color/clarity. Standing up for a few minutes or getting too hot causes the second problem which I believe is a lack of oxygen to the brain. It starts as spots but continues to get worse. It kind of like when you rub your eyes for too long and the vision is dark for a few seconds. I can't drive anymore because of it.

When it gets bad, can you read a white piece of paper or does it look blank?

[Birdlady]

My blind spots are constant. It doesn't matter what is going on. I do get bright spots that are worse when I am exposed to sunlight. Even the light coming in from a window is too much for me now. My pupils are normal sized, so my doctor thought my photoreceptors were dying, but with a normal ERG that is definitely ruled out.

The first thing I did was take B12 and it changed nothing. I've had others tell me this, but sadly I can't say it did anything for me.

Part of what you are describing sounds like presyncope vision problems. Where things go dark or white for a few moments and then you recover because your BP stabilizes.

I think I can read a white piece of paper ok. Thankfully the blind spots I have are not center vision! The one spot actually looks like a grid or honeycombs, which is new since Friday of last week.

[The Last Centurion]

Damage done by B12 deficiency can usually be reversed if its treated in the first few months. Most doctors don't know that the standard blood panel does not accurately measure B12 levels. If you get tested, make sure they check for intrinsic factor antibodies. With pernicious anemia, B12 supplements are useless. It has to be injected into the muscle.

If light continues to be a problem, you might want to check out welding glasses on amazon. I got the Jackson Safety Nemesis shade 5 glasses for under $10 and it helps a lot. They look like normal sunglasses.

[Birdlady]

I've already been down that route, many many years ago. I don't have PA, but still used injections to see if there was a change. There wasn't unfortunately. Thanks though.

[Freaked]

Dana, I don't know how things work where you're from in terms of procedures, but if you went into a hospital emergency department with your symps here they'd get you a scan that day or the day after, and then you could see a neurologist after that. Would something like that be possible for you? I knew a woman with your symps once, and it's probably a completely different thing, but time can be important where vision is concerned. If something's pressing on a nerve or anything, the sooner fixed the less damage done.

[bellgirl]

I went to a Neuro- Opthamalogist first, and he couldn't even see my retina, due to my cloudy corneas, but everything neurological was ruled out. I was concerned about an optic aneursym, since my dad had a cerebral aneursym, and I couldn't see to drive either. I believe I had optic neuritis 15 years ago, and couldn't get in to see a neurologist for 2 months, so by that time, the inflammation was gone. If you are referred by another physician, and explain your situation, they should see you sooner. I've always had problems with my vision, since all of this started. I find it interesting that at one point in the brain that the optic, vestibular, and vagus nerves come together. I still believe that most of mine are circulatory, though. I've had silent migraines, too.

[jknh9]

I hope you can get to a neurologist. Those symptoms could be related to a pituitary tumor. Most of those are benign, and actually a lot of people have them, although they rarely cause symptoms. You would need an MRI to find out for sure, though. I just started seeing a neuro and he ordered an MRI for something kind of similar. When I close one eye, the other eye gets visual snow and goes dark within about 15-20 seconds. It gets so bad that I can't do a normal eye exam.

[s-pot]

Dana I have had this same problem come on only in the last two months. It was never an issue before and like you I am struggling to get an answer! They are not typical 'floaters'. They are continuously there, worsen during the day, move with my vision i.e reading a page of a book has become difficult as these blind spots move across the page as i move my eyes. Certainly not the 'presyncope 'going to pass out' kinda black fuzz either.

I have struggled with worsening headaches for quite some time which have become very severe in the last two months, (not migraines). I thought this may have had something to do with the visual problems. Im was on Florinef 0.1mg, docs felt maybe my worsening headaches were from low bp and doubled the Florinef to 0.2, Headaches have improved but the visual problems continue.

Someone mentioned above Pituitary problems. I have a very small tumor non malignant/non functioning on the Pituitary (5-6mm) which i insisted on getting rescanned in the last few weeks. Thought it mite be part of the visual problem but apparently not...they say it is too small to be causing any problems!?

I was not aware B12 could cause problems like this....mite get it checked.

I suffer from sinus problems and if flared up recently.... i do wonder whether this could be linked at all!

Anyway Dana.... I am as clueless as you are but by the sounds of what you are experiencing I think its similar to me. Id be interested to hear if you get anywhere with this!

How long has this been going on for you?

[blueskies]

Damage done by B12 deficiency can usually be reversed if its treated in the first few months. Most doctors don't know that the standard blood panel does not accurately measure B12 levels. If you get tested, make sure they check for intrinsic factor antibodies. With pernicious anemia, B12 supplements are useless. It has to be injected into the muscle.

If light continues to be a problem, you might want to check out welding glasses on amazon. I got the Jackson Safety Nemesis shade 5 glasses for under $10 and it helps a lot. They look like normal sunglasses.

I've nothing to add to loss of vision but just wanted to note that I read somewhere that people who get migraines should wear sunglass that are polarized. Actually, I think I saw this on the show, 'the doctors.'

I'm definitely going to go and buy a pair of polarized sunglasses. I had a pair for a while and they were better for me. Unfortunately I lost them -- They were so light on my head that I forgot I was wearing them and dived into Sydney harbour with them on. They slipped off my head and were gone for good -- sank straight to the bottom. Grrr.

blue

blue

[Birdlady]

s-pot,

I also have sinus problems and I'm starting to think it's related as well. The blind spots started in October, so I'm not in immediate danger or anything like that. The next stop is a neuro-ophth, but I honestly doubt they will find anything wrong. There are others online who have this and no one can find anything wrong at all. You just keep losing spots of vision and no one knows why.