leminisor Posted July 20, 2020 Report Share Posted July 20, 2020 Hey guys! So I’m new to these forums and just wanted to get connected to some people who are going through similar issues while living with POTS. I have dealt with pots symptoms for about 8 years now, but just recently received an actual diagnosis by my neurologist. In the past 2 years or so I have really struggled with visual issues that I assume is from pots, with or without my glasses/contacts. The best way I can describe it is this: I can be looking at a sign or a few words whether that be up close or 10 feet away, but my eye has a hard time staying focused/on point on the one portion that I’m staring at. It’s almost shaky/unstable looking. It’s not severe but it’s very uncomfortable, and makes me feel simultaneously uneasy/dizzy in my head as well. It’s very vague and hard to describe. The best example I can find is oscillopsia, where the vision is shaky but the person does not have physically shaky eyes (nystagmus.) Accompanied with that dizzy/uneasy feeling is a sense of feeling very overwhelmed by fast moving lights/objects, sometimes even simply scrolling through a page on my phone for an extended period of time. I have never had a seizure that I know of, but it sort of feels like a “mini seizure” in the way that I feel overwhelmed by repetitive visuals. Overall, these symptoms are worse with less sleep and are worse in the morning time. 2 years ago I had a test to see if I had any major rapid eye movement, but they said it was minimal and not causing this issue. I just had an EEG done but have not received the results yet, although the strobe light portion made me feel pretty uncomfortable. Has anyone experienced anything similar to this? Any info is helpful, as I’m sort of at a loss for what to do about this or what this even means for my pots. Thanks! Quote Link to comment Share on other sites More sharing options...
Nin Posted July 20, 2020 Report Share Posted July 20, 2020 Just posted the exact same thing as you on here about 4 days ago! My eyes are a nightmare for me. I struggling to focus on anything e.g. making eye contact when talking, reading. I avoid so much because once I do start focusing my head starts spinning. I actually started having siezures since November 2019, these are non epileptic siezures and started when my pots symptoms got worse. I had a vestibular function test the other day but nothing got picked up. I'm wondering if this was even the right place to have this problem checked out. Quote Link to comment Share on other sites More sharing options...
leminisor Posted July 21, 2020 Author Report Share Posted July 21, 2020 7 hours ago, Nin said: Just posted the exact same thing as you on here about 4 days ago! My eyes are a nightmare for me. I struggling to focus on anything e.g. making eye contact when talking, reading. I avoid so much because once I do start focusing my head starts spinning. I actually started having siezures since November 2019, these are non epileptic siezures and started when my pots symptoms got worse. I had a vestibular function test the other day but nothing got picked up. I'm wondering if this was even the right place to have this problem checked out. Wow I’m sorry you’ve been dealing with that! Did they figure that the seizures were directly pots related? The visual issues are so uncomfortable and make me feel uneasy pretty much all of the time to some extent. Would you say your symptom is pretty much the same as how I described? It’s so difficult to explain to anyone who hasn’t dealt with pots! Even then, I’m really unsure what can even be done about it. Quote Link to comment Share on other sites More sharing options...
Nin Posted July 21, 2020 Report Share Posted July 21, 2020 16 hours ago, leminisor said: Wow I’m sorry you’ve been dealing with that! Did they figure that the seizures were directly pots related? The visual issues are so uncomfortable and make me feel uneasy pretty much all of the time to some extent. Would you say your symptom is pretty much the same as how I described? It’s so difficult to explain to anyone who hasn’t dealt with pots! Even then, I’m really unsure what can even be done about it. No one has said why I get these siezures. I had 3 operations in the space of 9 months and started having siezures after the last operation. I was feeling more and more unwell after every operation and then diagnosed with pots. The siezures I get are usually when I've pushed myself too far and my eyes start flickering fast and I start fitting for about 2 mins. I had them when I had my tilt table test. With my eyes and not being able to focus on things I don't know if that is sort of a siezures thing or they are just not functioning properly. Anything that's flashing in my eyes make me go weird, when I had a EEG done my eyes were jumping all over the place along with my body. But the EEG showed negative for epilepsy and i was sure it would be positive. I just feel so uncomfortable talking to people as I don't won't to focus on their face. Typing this to you now is making me dizzy and I tend to close one eye because my eyes are so strained. Once it starts the dizziness/head swaying feeling I deal with this all day everyday. I believe this is pots related as the autonomic nervous system controls your eyes as well and something is just not functioning properly. My gut is something like binocular vision dysfunction. But I don't know who you would see to test for this Quote Link to comment Share on other sites More sharing options...
Chiara Posted July 21, 2020 Report Share Posted July 21, 2020 I have a lot of visionproblems too. It seems that any kind of light (electricty, sun, PC,...) and stress triggers this. I ware dark special sunglases, one for computerwork and another much more dark outside. This gives me a better conditions and reduces my POTSsymptoms. I do not know, if this is a kind of migraine or an other thing, but it helps a lot. And any time I feel exhausted and get blurred vision I give up my work or reading and relax, afterwards I can see mmuch better for a while... Quote Link to comment Share on other sites More sharing options...
Jaymack80124 Posted June 10, 2021 Report Share Posted June 10, 2021 Omg…this is me. These symptoms have been exacerbated since about October of last year. I’ve had pots my entire life but the visual problems like this are new. I can’t read anymore and I struggle with driving because it just feels like the whole world is all moving simultaneously. To me, it’s like being a sober person trapped in a drunk body or like being on hallucinogenic drugs that never wear off. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted June 10, 2021 Report Share Posted June 10, 2021 1 hour ago, Jaymack80124 said: Omg…this is me. These symptoms have been exacerbated since about October of last year. I’ve had pots my entire life but the visual problems like this are new. I can’t read anymore and I struggle with driving because it just feels like the whole world is all moving simultaneously. To me, it’s like being a sober person trapped in a drunk body or like being on hallucinogenic drugs that never wear off. This is exactly how I describe it or like being hit in the head. It's hard to describe these symptoms and sensations to people who don't experience them. It wasn't a gradual thing for me either and went one eye at a time. I can remember the first time I was sitting at the computer when things suddenly blurred in my left eye and then a few months later my right eye. Severity seems to alternate and ebb and flow. Quote Link to comment Share on other sites More sharing options...
Kalyan Posted March 25, 2022 Report Share Posted March 25, 2022 https://condor.depaul.edu/~elliott/ZelisnskyElliottPOTS-H.pdf Quote Link to comment Share on other sites More sharing options...
Bergbrow Posted March 26, 2022 Report Share Posted March 26, 2022 I have this eyes/vision problem as well. Docs thought it was related to my brain injury (which led to my dysautonomia). Maybe it’s a combination of both. Sometimes it’s like continually trying to focus while I’m the only one spinning. Even walking through something as big as a doorway has caused me many injuries. This amount of constant concentration wears my eyes down and wears my brain out. I’ve been seeing a neuro-ophthalmologist where she prescribed wearing prisms and visual rehab. I still struggle with tracking, blurring, lights and movement but the triggering of symptoms seemed to have been tamped down with the prisms since my eyes now need less effort to to keep things in focus. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 27, 2022 Report Share Posted March 27, 2022 Interesting article and does makes sense. I was just diagnosed with Anisocoria and it does give me a little grieve. I would be in heaven if a simple pair of glasses fixed all my issues. Quote Link to comment Share on other sites More sharing options...
dlgrn715 Posted April 3, 2022 Report Share Posted April 3, 2022 I've been experiencing the same issues with my vision. It's hard to describe, but I think the way you described it is better than any way I could have. I'm typing this as it is going on now. For me, it seems to happen most in the afternoon or evening. Maybe it's because I'm tired, I've been looking at computers all day, or because meds are wearing off. It usually subsides on its own, but it is very annoying. When it first started, I thought I was having one of my migraines, but it never did turn into one. I try to drink more water when it occurs; I don't know if it actually works, but seems to help. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 4, 2022 Report Share Posted April 4, 2022 I have problems with my vision. The best way I can explain it is that it is like my vision has been converted to a dot matrix printer and there are spaces in between dots of vision. It takes a second for my brain to figure out what I'm looking at. This makes it hard to do things that are faced paced. When it happens, I can't drive, watch TV, anything that moves along and requires a quick, real time reaction. Quote Link to comment Share on other sites More sharing options...
mehaller Posted April 7, 2022 Report Share Posted April 7, 2022 At the onset of my symptoms, my vision was unpredictable. One day I'd take my glasses off and voila - I didn't need them. Next day I needed them. Rinse and repeat. However, just in the last couple weeks I find that my distant vision has taken a turn for the worse. No noticeable high frequency "movement" thankfully. Quote Link to comment Share on other sites More sharing options...
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