Jump to content
  •  

NikalPikal

Weird vision problem

Recommended Posts

Becky I think you are right. I know my senses are all overstimulated. Emotions too (emotional lability/PBA). Emotional flooding and overstimulation can wreck havoc at times. Tarina I couldn't physically paint my toes or fingers at first but my daughter who was 19 at the time would pamper me and paint me all up. 🙂 I actually don't remember if my smeller was oversmelling back then. 🤔 Anyways I am off track. I think your attitude taking on these things is very positive and you seem eager to prioritize your needs. That is HUGE!!! So no painted 💅toes for today but I bet you'll get there another day. Also, just because you notice something right now that gets in your way or in some way makes doing something else harder doesn't mean it will stay that way. Oh there will be changes. They might surprise you in a good way!

Share this post


Link to post
Share on other sites

I completely understand about wanting to paint your toenails. I couldn't wait until I was steady enough to go get a pedicure. That's always been the one little thing that I do for myself once a month. Now I get a manicure as well because I can't take care of my fingernails myself anymore. With your aversion to strong smells, the nail salon might not be the best place for you. Though, they do usually keep them well ventilated. 

Share this post


Link to post
Share on other sites
On 11/27/2018 at 1:02 PM, tmciriani said:

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.

Hey Tracy,  It has been a long time on this board for me.  I am going to start vision therapy starting in January. As you mentioned, it is not covered by insurance.  After being disappointed by 3 Optometrists, and 2 Neuro-Ophthalmologists, and 1 Ophthalmologists, I went to UC Berkeley School of Optometry.  Unlike the medical community, the instructor (clinical vision PhD) and students will actually provide academic papers of the issue and provide academic reasons for the issue.  I already have found several breakthroughs. I would check whether there is academic school of Optometry taught in TN.  They will give you an intensive vision therapy which often cheaper than family vision centers who usually conduct vision therapy.

 

Share this post


Link to post
Share on other sites
On 11/27/2018 at 10:16 AM, 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

I had similar issues.  Like the others, I have diagnosed with adnormal jerking of my eyes (torsional nystagmus) so it is difficult for me to focus on a static objects.  These objects appear to move.  It also makes it extremely difficult for me to read and have severe eye strain.  However, I also had issues with far distances in low light conditions.  Just like you, the Ophthalmologist will measure my eyes with the glasses and claim that my glasses would correct my vision to 20/20.  They just attributed my poor vision under low light as high myopia (near sightedness).  However, recently, I went to academic school of optometry.  I was evaluated by Vision PhD and students.  I scored horribly in contrast sensitivity acuity.  What I explained to all my medical doctors is that it was like a switch that affected by vision right after my brainstem bleed.  It is as though I am wearing sunglasses at night as everything looks dim and blurry.  Try wearing yellow or brown tints to see if you get improvement.  These tints improve contrast sensitivity.  If so, ask your eye doctor for contrast sensitivity acuity test.  (Smith-Kettlewell Institute Low Luminance Chart).

Share this post


Link to post
Share on other sites

Thank you for that suggestion I'll have to find out. I hope that you can get the therapy that may help! I think you and belong to a minute niche in the world of neuro eye issues. It's great that you are making progress with just finding anyone who is familiar and can offer effective help. Let me know how it goes.

Share this post


Link to post
Share on other sites

That is awesome! Yes! I still have the night time issues...sometimes really bad. It is noticeable if not my worst right at sunset when the lighting begins to get lower. I am forever thankful that my nostalgia for the most part cleared up. My Neurologist told me my eyes were not focusing at the same time though. I'm interested in how things go. I will write this testing name down. Thank you again!

Share this post


Link to post
Share on other sites

This is an optometrist school not neuro ophthalmologist right? You my friend can and should try to make this information more accessible to the vision and neurological community. 🙂

Share this post


Link to post
Share on other sites
On 11/28/2018 at 9:16 AM, ksmith said:

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 

Kelli,  it sounds like the special contact lenses is like an eye patch.  Have you thought about getting glasses with a black plastic which will be like an eye patch as it is pain putting in contact lens each day?  I tried to try to read with one eye but I always get a migraine and eye fatigue.  I also have dry eyes.  I heat up an eye pad compress on my eyes for 20 seconds which makes me tear as well as Refresh Optive eye drops.  It does relieve my dry eyes and helps with the fatigue. In my case, at Year 3/4, I finally found the doctor who gave me diagnosis (doctor 9) and treatment which resolved my chronic vertigo.  At year 4, I don't have treatment nor diagnosis but for sure, I am affected by contrast sensitivity in low light conditions after a consultation at academic Optometry school (doctor 10).  They are advising using tints to improve my contrast sensitivity.  BTW, did prism glasses contribute to eye strain?  I am thinking of abandoning my reading prism glasses.

Share this post


Link to post
Share on other sites
5 minutes ago, tmciriani said:

This is an optometrist school not neuro ophthalmologist right? You my friend can and should try to make this information more accessible to the vision and neurological community. 🙂

Yes Tracy.  Fortunately, UC Berkeley School of Optometry is the #1 Optometry school in the country. Unlike family vision optometry or regular optometry schools, they spent about 6 hours of evaluations for my reading prism glasses.  It turns out that my other prism glasses had a pin hole effect making reading very difficult. With my new pair, it is a lot easier for me to read but I still get eye strain.  I am thinking of getting non-prism reading glasses.  Usually, it is specialized optometry clinics who administer vision therapy but I found them to be "rip off" clinics.  In academic school of optometry, their pricing is much cheaper and there is PhD optometrist overviewing your case.  Basically, with jumpy eyes, the left and right eye is not converging normally making reading difficult.  The vision therapy is supposed to improve convergence through vision exercises.  For contrast sensitivity, certain tints like yellow or brown make improvements.  The last medical mystery is something that you and I have in common.  We both see halos or star bursts from light sources at night.  These issues usually manifests itself from a physical eye issue yet my lens/retinal/optic nerve are normal.  It is the last medical mystery left.  I am trying to make an appointment with a Vision Neuroscientist as I have no answers from the medical community.  My stroke physicians just attributed my issues to brainstem infarct but it is still a mystery.

Share this post


Link to post
Share on other sites

I am gonna try some welding goggles....I'm totally serious, they will block every thing but straight ahead vision...my side vision which is all wobbly and depth perception is off, makes me feel off balance  and dizzy all the time.  I just looked on amazon and they are about 7 to 15 bucks!  I can do that...if it doesn't work oh well, when I get back to working my hides and making leather they will come in handy.  I put some with yellow lenses in my cart to block blue light, which drives my brain crazy in normal lighting environments.    I'm laughing on the inside because ....goggles....are....so....cool!!!!!  They will be especially fetching with the leg warmers I wear all the time because I'm always cold....people in the real world think I'm a freak anyway...so be it...it will be a fun experiment! 

 

Share this post


Link to post
Share on other sites

That's the way its done Tarina!  If people stare etc. its their problem not yours. If it works and you can go out feeling safe it's worth it.

Share this post


Link to post
Share on other sites

Nicole still having sight issues. 

I see my doctor in January so will ask him what he thinks regarding the brain trying to comprehend what it's seeing. 

 

Share this post


Link to post
Share on other sites

Oh yeah, I still can't see far away worth a crap. I'll be interested to hear what your neurologist says. I couldn't get in to one until February 1.

Share this post


Link to post
Share on other sites

My appointment with the neurologist is tomorrow.  Thanks to the people on this board, I am going to ask to see a nuero- ophthalmologist.  I found out there is one connected to the university hospital (where my new neuro is), so hopefully they will let me do that.  I guess my abnormal eye movements and vision issue isn't unusual with a brain stem stroke, but it sure does make me dizzy, off balance, and feel a little nauseous all the time. Couple that with fatigue and the weird sensation and hyper sensitivity throughout my body- mostly on the left- makes me feel like I have the flu ALL THE TIME!  I hope they can help, even part of it so I can feel more normal and get some real exercise. I'll let you know what the nuero says about the eyes tomorrow night, if I'm not too tired from the travel.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×