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NikalPikal

Weird vision problem

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The only post stroke vision problems I can find any information about are the patchy blind spots that some stroke survivors have. I'm sorry I can't remember what it's called. My problem is just with my far vision. I can see up close just fine, but I can't see far away well enough to drive. I got new glasses a few weeks ago and went back to the eye doctor to double check my glasses yesterday. He said the problem isn't the glasses. He spent a long time checking my eyes yesterday.  At first, I could read the 20/20 line, then we he had me do it again, I couldn't. I was getting tired by that time. I noticed that when I could read the lines, I had to focus on it for a long time before I could make out the letters. When I'm riding in a car, I can't read street signs or billboards until I'm right on top of them and everything is super blurry. Has anyone ever heard of this? Thanks! 

Nicole

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I have similar issues along with a few more vision issues. I have worn glasses since 9th grade...or contacts all for distance and in the last 2 years bifocals (I'm 46 so having trouble seeing up close is pretty common). My issues are directly related to having a cerebellar stroke. My eyes don't always focus evenly or at the same time. I have a lot of night vision problems. I also have neuro fatigue...so when my mind and body are moving towards my "wall" all of my issues get worse including vision. I actually went to a neuro-opthamologist about a year after my stroke who specializes in neurological sight issues. He did a battery of testing and concluded that I needed eye therapy. However, this was not covered by my insurance and this specialty is very new. I hate that I am just able to tell you my story but not give you advice or help. I would say talk to your PCP, your Neurologist, and your therapists...my OT therapist in particular is who worked with me in this area. Your doctor's may be able to provide better suggestions for your issues. I really hope this improves for you with time. 🙂 Best of luck.

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Thank you! Your response did help. Now I know that I'm not crazy and stroke can cause all kinds of weird problems that most people never hear anything about. I hope your issues get better as well!

Nicole 

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Nicole you are very welcome. You are exactly right...strokes can cause problems not typical sometimes. It gets perplexing. I have a weird stroke...rare. I have "weird" deficits like severely effected vision as the sun goes down and at night. This causes extreme fatigue, lots of other deficits to show up again or worsen, very blurry vision at night, I usually try not to drive at night because the oncoming lights are blinding. They also look like giant starbursts (all lights...street lights, sign lights, house lights, etc.) These starbursts many times have giant rainbow halos around them. Needless to say disturbing. I am also like blind in the complete darkness...I need night lights to function in my home at night. It's because I lost the area of my brain that aides in balance and equilibrium (vestibular system) and therapy taught me to use my eyes more to help do these things. It is simply that I can't see as well at night therefore I can not use my eyes to aid this system at night as easy. I'm sorry that was so long but my issue is odd according to my neurologist and therapists. I would try and try to explain what I felt or noticed but they weren't sure what to even think of it or what to do to help. I have only talked to one other person who shares this same thing. 🙂 It does help to know someone gets what you are feeling and dealing with.

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22 hours ago, NikalPikal said:

The only post stroke vision problems I can find any information about are the patchy blind spots that some stroke survivors have. I'm sorry I can't remember what it's called. My problem is just with my far vision. I can see up close just fine, but I can't see far away well enough to drive. I got new glasses a few weeks ago and went back to the eye doctor to double check my glasses yesterday. He said the problem isn't the glasses. He spent a long time checking my eyes yesterday.  At first, I could read the 20/20 line, then we he had me do it again, I couldn't. I was getting tired by that time. I noticed that when I could read the lines, I had to focus on it for a long time before I could make out the letters. When I'm riding in a car, I can't read street signs or billboards until I'm right on top of them and everything is super blurry. Has anyone ever heard of this? Thanks! 

Nicole

this is EXACTLY why I'm going back to my neuro ophthalmologist next Friday. I have nystagmus ( bouncing eye) in both eye but in my right one, it's worse. I've tried Prisms ( glasses) and surgery  to no avail. Finally we've agreed to wear a special contact lens that blocks all sight from that eye so I may see one image. Having nystagmus, you can imagine that all my sight is always moving. I say all that for this:  When I only use my left eye to see, it's like trying to look through glasses that aren't strong enough. Now if I look through my right eye, granted it's not stable, is perfect and crisp.  From what I remember hearing along time ago was night blindness. But yet I see fine. I also have dry eyes, I was diagnosed and that can cause troubles. http://www.stroke.org/we-can-help/survivors/stroke-recovery/post-stroke-conditions/physical/vision ,  I fall in most of these for I tilt my head, from double vision, dry eye and so on. Sometimes, I hate to say it but 'It may be what it is" because we still don't know how the brain and eyes get damaged from a stroke. But I'm sure, like you, I'm not going to settle. So I'll wait for my eye doctor  :) x~ Kel 

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23 hours ago, NikalPikal said:

 When I'm riding in a car, I can't read street signs or billboards until I'm right on top of them and everything is super blurry. Has anyone ever heard of this? Thanks! 

Nicole

 

Hi Nicole,

 

Same thing has been happening to me since day one! I read an outstanding explanation for it years ago, but of course can't find it now. I do remember that it has something to do with Ataxia effecting the eyes. (I believe the old website I read it from was 'wemove.org')

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Kelli I concur. I have dry eye too btw. So far my problems in this area have not improved other than my nystagmus went away. Weird enough my Dr. still says my eyes do not focus together (like at the exact same point of vision or time). I'm not sure if it will ever improve but I will always remain hopeful and stubborn (as someone stated earlier).

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Susan that makes sense to me. Ataxia is a hallmark of cerebellar stroke. Interesting. Thank you.

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My vision problems don't sound nearly as bad as you guys have it. I don't have dry eye or nystagmus. I just want to drive and I can't see well enough to do that yet.

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I'd say your problem is just as important I know Kelli and I both can drive. It took time don't get me wrong and a lot of work. Again I'm going to revert back to my earlier answer. Involve your doctor, neurologist, and therapists (OT was a big help for me in this area.). They will maybe have better suggestions for you. 🙂

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Yeah, I'm going to my PCP tomorrow and ask for a neurology referral. Right after my stroke I asked if I needed to follow up with the neurologist and was told no. I've only got to see my own doctor once since my stroke. Everything in my part of Indiana is owned by IU Health and it kinda sucks.

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I have vision issues too, But my issues are different from those of all 3 of you except that I have nystagmus in one eye ( had it in both for 4 yrs),

and I have "chronic dry eye". My suggestion is that you keep channels of communication open with the doc who has been seeing you about your eyes, and see a neuro-ophthalmologist. Your vision problems are what neuro-opth deals with- problems with vision caused by neurological issues. Your regular medical doc or your current eye doc may be able to help you locate one, as they're kinda rare.   Becky

 

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Thanks, Becky! I googled it and there are some neuro ophthalmologists in Indianapolis. That's only a few hours away.

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That's great!  Where I live, in West Virginia, I haven't been able to locate one in the entire state. It might be a good idea to make an appt with one soon because they tend to be booked for several months in advance because people come from all over to see them because they're so rare, The closest ones to me are at John Hopkins, in Maryland, for instance.  You don't have to see a neurologist first unless that is an insurance requirement. Good luck, and keep us updated, Becky

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Becky great advice...that is what I did. A neuro-opthamologist can test things very specifically, give you information about your particular needs, provide a future outlook, and can suggest things to help like eye therapy. Glad you have options close to you!

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Nicole I keep getting told I don't need new glasses,  but I can't see!

Keep at them.

One of the hardest things about stroke recovery is getting people to 'listen'.

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I know what you mean. I just got new glasses and I still can't see! The optometrist said my problem has to be neurological from my stroke. My family doc said that my brain is having a hard time interpreting what my eyes are seeing. I see the neurologist February 1. Have you seen a neurologist about your vision problems? If so, what did he say?

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I have SO many eye issues post stroke, I feel tired even thinking about writing about them.  Eyes, cognitive function, and speech are my main deficits...... left side weakness, numbness and generally stubbornness too, but I could deal with that better if the eyes and brain would work better.  I see a neurologist on December - let me check the calendar- 12th.  But they are not neuro-ophthalmologist like our fellow survivors are talking about.  I will let you know what they say after next weeks appointment.    

 

Off to take a shower- an hour long ordeal at this point.  I really want to paint my toenails....lol.  I know its dumb, but I'm going to try.  I will have to haul my leg up with my right hand while sitting and then my foot and toes will jerk around, and with my vision problems, I'm probably going to make a HUGE mess, but oh well...so be it!  I used to always paint my toenails, even though no one sees them...,its just what "I" do...and I want to do it again!  But if it doesn't work out, well...I'm not going to "sweat the small stuff", and I promise myself I won't get frustrated and upset.  Maybe I'll take a picture of it, so that in a year, when I can do it again, I will look back and say "hey, you couldn't....and now you can!" Besides, it might turn out ok...ya never know till you try!

Have a lovely day, find something good....

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Yes, please do let us know. I hope you get good news! I think my vision is the problem that I'm most anxious about. 

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Tarina great thought on taking a picture and looking back at it. A journal, even really simple, is also a great way to see improvement we sometimes have a hard time seeing. 🙂 To both of you I wish you the very best at your Neurology appointments. Ask about seeing a Neuro Ophthalmologist. This doctor is very specialized and trained with current knowledge of neurological issues of the eye and their affects on site. Depending on insurance this doctor may or may not be covered. If your Neurologist agrees then I still recommend an initial evaluation of at all possible. When I did this I wasn't privy to my Doctor's therapy instructions to do at home or with a regular therapist. It's because it is a newer field and they want you to use their own therapist. I 1st hand know the battle of less or no income...got to do what you can in some instances. This doctor may be positive about sharing your results with your Neurologist or therapist. These eye therapies can usually be incorporated into your current therapies which many times ARE covered. Let us know how both your appointments go and best of luck!

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Well.  I DID try to paint my toenails....and NOPE.  It wasn't the problems I had anticipated.  It was just SOOOOO STRONG OF A SMELL, as soon as I struggled and wrestled the bottle open....I couldn't handle it!  I knew I was sensitive to smells, but didn't think through that part.  Oh well, another time, always good to know what the limits are.  

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yep you don't know 'til you try.  Once you know what the issue is you can make a plan to compensate. maybe you try wearing a mask next time? do you tolerate other strong smells better? can you put something on the mask that will counteract the solvent smell?

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Yes. Weird thing I have since my stroke is an aversion to strong smells. I smell things that no one else smells. 😳 I have no idea if they are real smells and my nose is like psychic or if there is no smell and my head just makes my nose think there is lol. Eh...I just move either way. No harm no foul. 😁

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I don't HAVE to paint my toenails, I just wanted to...so I'll wait till my brain heals a little more and try again.  Maybe give it till summer.  There are a lot of little things like that that I have to let go of for now.  More pressing things to concentrate effort on, and I don't want to be upset by something little like that.  Besides it was interesting for me to know that while I anticipated difficulty, I didn't encounter THOSE difficulties but something else.  That's an important lesson for me to remember.

 

And yes, sometimes all of my senses are extremely heightened.  Smells, but also, seeing the minute detail of a towel, all the threads and where they unravel...and then of course everything starts bouncing around and swaying and then I can't see that anymore....or hearing everything at the same volume.

 

Brains are freaking awesome if you think about it....it leads me down some esoteric philosophical path about the nature of reality and even the similarities between what we think of as our separate "selves" and the makeup of the whole universe.

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That's one thing that many of us have- super-sensitivity to something. Here, I've heard of sensitivity to lights, sounds, or being around a crowd, to name a few. I had a sensitivity to extremes of temperature- heat and cold and movement, such as riding in a car.

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