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NikalPikal

Weird vision problem

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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!

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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. 

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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.

 

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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).

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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.

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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!

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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. 🙂

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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.

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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.

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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! 

 

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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.

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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. 

 

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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.

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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.

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Good luck to EVERYONE on their upcoming appts.!   Becky

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Nika,

Sorry I didn't write directly after the nuero appointment like I said I would.  I was just too tired.  Anyway, I don't have much to report.  When I asked about vision therapy or a nuero-ophthalmologist, my neurologist said no...not yet.  His response makes sense but it wasn't what I wanted to hear.  He said my stroke is too new, (It was the Oct 28) and that if we correct my vision problems now, my brain will not make new pathways to deal with the issues.  It would be like stopping healing.  He told me to wait about a year and ask again.

This is discouraging, because the vision/balance issues are some of the most troublesome and limiting of the stroke deficits....of course, I WANT to heal correctly, but I also want a life back, one in which I am not stuck inside all the time because I can't balance, even in the yard, or go for a walk, or drive my car, and all the freedom that driving brings.  I don't know if emotionally I can wait a year!

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Nicole you were saying about reading the 20/20 line when having your eyes tested.

 

I reckon they still use the original charts that the eye test guy invented. 

 

Every year, when I have an eye test, I don't really have to read anything. 

 

Just sit there:

A R U C G

1, 2 ,1, 2, 2

ACROSS 

DOWN 

ACROSS 

ACROSS 

 

There. Done. Perfect memory from last time.

 

They need to update their charts.

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Tarina, 4yrs. post-stroke the nystagmus in my rt. eye went away on its own. I, too, had severe dizziness, balance issues. The dizziness subsided so much that except for the occasional 2 mi. bout of dizziness, it's gone. Balance issues are much improved, but still there. Each of these-dizziness, balance, nystagmus- can make the other two feel worse, but they are different issues, and will heal at their own rate, and not necessarily at the same time as the other 2.Whew! What a mouthful! Hope that makes sense. So even if you had the nystagmus under control, if you still had dizziness/balance issues, you still might not be able to drive.

That being said, I don't see anything wrong with seeing a neuro-opth. just to see what he says, and to establish yourself as one of his patients so that you have a neuro-op if you need one. Plus, they stay booked far in advance usually, because they're so scarce. Maybe by the time of your appt., you'll be further out from your stroke, and know what you want to do if the neuro and the neuro-opth don't agree.

Do you have Medicaid,BTW? I think we'd all agree that strokes are expensive, and you're seeing why I say that. Medicare won't kick in until you have been receiving SSI for 2yrs. Until then,you're on your own. 

 

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Tarina man I have I been in your place at moments. My stroke was ridiculously debilitating for the first 6 months and I barely have any memories of it. Once I started getting my faculties back, mentally I was mad. I wholly remember the before me. Unfortunately, stroke is not like other organic illnesses. Time is your friend even when you hate her. It WILL take time and there is no avoiding that. Your stroke is very young. I think it was between 10 and 12 months before I saw a neuro optometrist. There is one factor I think of though. A neuro optometrist can assess your deficits, assess your projected future improvement, and many times assess whether there is permanent damage or are there therapies for the eyes that can help with improvement on the same basis of neuroplasticity. I will say that some things will change with general neuroplasticity and the eyes may need to be given more time to make such assessments. I'm not sure. If your Neuro is just considering correction of vision and not neuroplasticity from eye therapy then I feel you need a second opinion. I can't stress how important time is after stroke. I say keep having the drive but never forget that time is a factor. It will be work...

perseverance...hard...not over night...and there will be some that only time will make the difference. Trust me I know that is tough to hear. Don't put too many or too overly optimistic expectations on yourself. Start learning your limits for today. It's the 1st step to acceptance and a limit doesn't have to be unchangeable. Don't be so hard on yourself...and know you have a whole bunch of supporters.

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I'm beginning to realize that this stroke thing isn't like other "hard" things where you throw 100% at it and you push through the barrier faster.  Such as a hard class, where you study your bleep off and you pass and can congratulate yourself in 6 months.  Or a relationship hurtle, where you go to therapy, work really hard at whatever the problem was, grow (painfully) and overcome it and realize a few months later how far you have come.  I used to lift heavy (weights- that is). I loved to go to the gym and push myself so hard, until my body just wouldn't do it anymore. I was in the free weight room with the guys, sweatn' and grunting through the lifts like the rest of them...LOL.  Point is these things are "push as hard as you can-for as long as you can" and gains happen.

Stroke seems to be a different kind of "try".  Its a paced and measured "push through and try".  More like yoga, where the stretch gets breathed through and released, and gains are slow and steady, more flexible with time and practice, more balanced emotions as you learn to breathe through difficulty.  With yoga (which is what I was doing when I had my stroke) its a practice of the mind 80% and a practice of the body 20%.  This seems to be what I need to understand more about this recovery process.  I'm not going to beat any of this with the weight lifting approach- I will only beat myself down.  I need to use the yoga approach, and stretch myself just past comfort and relax into it, to see gains over time, recognizing that those will be almost imperceptible week by week, and accepting that as part of the recovery.

 

The emotional part of me is screaming right now as I write that.  I'm having an internal temper tantrum that is not at all calm and serene and "yoga-like".  I don't want to wait!  I want to feel whole again!

 

Breathe.

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Patience and stroke are very intertwined Tarina.

 

But don't stress, it takes a while for that to sink in.

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On ‎11‎/‎28‎/‎2018 at 1:49 PM, NikalPikal said:

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.

this ma be a silly question but your eye doctor- is this a regular eye doctor or a neuro optometrist? 

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Janelle is very right Tarina. I've been there too as many of us have...the tantrums (inside and I'm outside lol), the anger, frustration, at times defeated feeling, stubbornness (so many if not all survivors feel this, we don't want to hear slow down or this will take time or blah, blah, blah). It's that sinking in thing (acceptance...and I always consider this a today thing...I reaffirm this daily at where I am that day 🙂). All in all its a sucky thing...but I will say it takes my own pressure off of myself and I find that helpful physically and peacefully. Keep that "spark" Tarina it's a good thing. 🙂

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Hi Tarina, you hit the nail on the head Stroke recovery does need the yoga method, not the "weight training" method, although if you apply the yoga method to weight training you get better results long term than you do with the traditional bust a gut weight lifting method you describe.  

But yes the words we all hate to hear "make haste a little more slowly".

 

Hang in there you will get improvement. Try not to "yell" at yourself in the mean time.

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