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Visual Midline Shift

Discussion in 'Neurological/Neuro-sensory' started by Moxie, May 10, 2013.

  1. Moxie

    Moxie

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    I searched to see if this topic had been posted before, but didn't find anything. I wanted to bring it up in case my experience might help someone else as much as it has helped me.

    For a little background, I suffered a head injury about 8 years ago that has muddied my determination of onset of CFS symptoms. For a long time I attributed new/changing symptoms to that instead of acknowledging that things were new or things that had improved/resolved were worsening again. So when my vertigo got dramatically worse, my energy dropped off again, and the migraines started - all about 3 years ago, I initially blamed it on the injury.

    Then, about a year ago, I got acute Lyme symptoms within days of pulling off 2 nymph black-legged ticks. My Lyme journey led me to a local LLMD who, within minutes of walking into the exam room, declared that one of my sequellae (regardless of cause) was visual midline shift. Words my neurologist had never mentioned, but that have changed my life dramatically for the better.

    She sent me to Dr. Padula in Guilford, CT - an optometrist who has pioneered the research in this syndrome over the past 10+ years. He travels helping veterans with Gulf War Syndrome and tbi's from IEDs. He also is treating a growing number of Lyme patients.
    ***Please note: I do not know Dr. Padula other than as a patient, and I have no financial (or other) interest here..just wondering if this might help others with ME/CFS. Also, he's not the only optometrist who is knowledgeable about this..he's just the one my doctor referred me to.

    Basically, your brain interprets the visual input as being shifted from where it actually is, which leads to mis-perception of the slope of the ground or the location of that wall you just bumped into, etc. There are definitive tests, including visual evoked potentials, walking on track pads, and looking at polarized light, etc. The problem can often be largely corrected with glasses that have prisms in the lenses.

    My understanding is that the visual midline shift is part of a greater post-traumatic vision syndrome (PTVS) that he describes.

    He also explained this is not just for physical head trauma patients - any disease process that affects the brain can cause PTVS, including MS, myasthenia gravis, Lyme, etc. My wheels have been turning about the progression of things over the last few years and I was thinking about the glasses and that I'm way overdue a visit to fine-tune..it got me thinking that this may be a treatment modality that could be helpful to a lot of the ME/CFS patient population. My migraines have all but disappeared (I was taking 6-10 Relpax per month, now I take one every 3-4 months) and my balance has improved significantly. I don't get as tired when I drive. And because I'm not spending all that cognitive energy trying to calculate and re-calibrate data about my surroundings, my brain fog has improved.

    To be clear, nothing is cured or entirely resolved, and it hasn't made a darn bit of difference in my PEM, muscle strength, etc. (nor would I expect it to), but I've seen major improvements in those areas I mentioned.

    Here's hoping this might help someone..

    All the Best,
    Moxie
     
  2. viggster

    viggster Senior Member

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    I have this problem too but I'm confused by your post. What, specifically, did you do to help the mid-line shift? Some kind of special lenses for your glasses? Thanks.
     
  3. Forbin

    Forbin Senior Member

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    While searching the net for references to "visual midline shift syndrome," I ran across this now four-year-old thread.

    It interests me because, following onset, my first symptoms were dizziness and, later, visual distortions. My balance problem was measurable and, a decade later, I was told that I had latent "strabismus," an indication that the eyes might not always work together properly. Strabismus can be treated with prism lenses, if it becomes manifest.

    Visual Midline Shift Syndrome shows up as a non-exclusionary overlapping condition with ME/CFS in the Canadian Consensus Overview:
    Here's a description of Visual Midline Shift Syndrome:
    The bolded symptoms above are all things that I have experienced.

    I suspect that ME/CFS is probably another condition that can qualify as a neurological event of the brain that can trigger visual midline shift syndrome - which, coincidentally (or not), is also treated with prism lenses.
     
    ladycatlover, rosie26, Wonko and 3 others like this.
  4. I've had ME now for 14yrs and during the last few months developed new symptoms that relate to this. I am now trialing prism glasses and wonder if anyone has experience with this. My opthamolgist suspects, this Visual Midline Shift and my exophoria have potentially been going on for years and I've adapted until I no longer could. I am finding the new prism glasses and eye exercises to be EXHAUSTING. I am sleeping 10-12 hrs and require an actual nap everyday. This is day 8 of this new treatment, and they don't have experience with someone with ME. Is this something I just have to tough out and adapt to? My hope is that my brain gets used to it, balance improves and actual cognitive functioning improves. Anyone with experience in this??? I just pray this isn't my 'new normal' - I just can't cope with that.
    Thanks in advance.
     
    leela likes this.
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  6. Forbin

    Forbin Senior Member

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    Hi. By the time I was told that I had latent strabismus (10 years after onset) my vision and balance problems had actually improved considerably. They were among my most debilitating symptoms in the first three years of ME. In the fourth year, many of my symptoms improved from ~severe to ~moderate, but subsequent improvement was incredibly slow.

    Like you, I have "exophoria." I my case, either eye will turn outward if it is blocked. At the time I was diagnosed, I was maintaining "lock" with both eyes well enough that my ophthalmologist did not recommend prisms - although he said I might need them as I got older. I'm still doing OK, 25 years later.

    So, to make a long story short, I really have no experience with prism lenses. Had someone noticed the problem earlier, I certainly would have given them a try - though I would have been concerned that they might make me even more disoriented, at least initially. The brain seems to be pretty pliable, though. I think there have been experiments where people have adapted to their vision being turned upside down - but, with ME, I feel like the response to any treatment is unpredictable.

    I'm sorry that this isn't much help. I know very well how difficult these symptoms are to deal with. I hope the lenses eventually help you, or that the problem eases up on its own.


    There have been some papers written about ME/CFS and vision. The ones I can think of have come from The University of Leicester in the UK. http://www2.le.ac.uk/departments/npb/people/ch190/CFS_ME
     
    Last edited: Oct 7, 2017
    ladycatlover, rosie26, Wonko and 2 others like this.
  7. [QUOTE="Forbin, post: 917777, member: 764"


    There have been some papers written about ME/CFS and vision. The ones I can think of have come from The University of Leicester in the UK. http://www2.le.ac.uk/departments/npb/people/ch190/CFS_ME[/QUOTE]

    Thank you so much for the response.
    I will keep my experience posted on this link. Hopefully I will find more answers as time goes on. Thanks for the link too, very helpful!
     
    Forbin likes this.
  8. Isaiah 58:11

    Isaiah 58:11

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    A Sun-Scorched Land
    I was just diagnosed with something similar on Wednesday. I went through some rather strange tests with the doctor, but finding the correct lense for my right eye allowed me to determine where sounds were coming from :confused: which I have been unable to do for years.


    The doctor told me that I have been seeing the world as tilted downwards and has written me a prescription for glasses that are supposed to lessen the stress on my brain and, I think, somehow start a retraining process.

    I am really excited as I am rather tired of running into hall corners and door frames :bang-head:.

    I can't imagine how many children with learning disabilities of some sort would benefit from this.
     
    chickpea, Forbin and ladycatlover like this.
  9. Forbin

    Forbin Senior Member

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    It's an interesting question whether ME might actually be doing some kind of physical damage that leads to eye alignment disorders, or whether ME is simply exposing a pre-existing, sub-clinical disorder that patients are no longer capable of compensating for. Given that eye movements are controlled by muscles, and muscle weakness is signal symptoms of ME, I'd suspect the latter.
     
    Last edited: Oct 8, 2017
    chickpea and Isaiah 58:11 like this.
  10. Isaiah 58:11

    Isaiah 58:11

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    That is a really interesting question.

    I hadn't thought about it, but I was briefly given glasses at about the age of 4, but then it was determined that what I actually needed was vision therapy. Although I finished the therapy, I was always too uncoordinated to play sports.

    The doctor said that our spacial map is formed in infancy and that if anything later forces our eyes, ears, and I don't know what else out of balance that the whole system takes a hit.

    I wonder if, in my case, this is a whole new thing from ME or, if like you suggest, I just lost the adaptation that I was taught and reverted to my early vision issues. I had repeated ear infections (had drainage tubes twice by the time I was given glasses) so it seems possible that my spatial field was improperly formed to begin with as a result of my sense of balance always shifting.

    Do you currently have ear trouble? Is that common in ME? My right eardrum has ruptured a number of times as an adult. For the last month or so it has been filled with fluid again and my cognition has been awful. I am not sure how much of that is because of inflammation and how much is just because my brain is overtaxed by all basic spatial demands.

    Do you suppose that any of this accounts for our sensory hypersensitivity? I have tried for years to explain that anything that bumps or jostles me makes me immediately feel sort of angry, like it short circuits my brain somehow. Now, for me at least, it all makes sense!
     
    Forbin likes this.
  11. TenuousGrip

    TenuousGrip Senior Member

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    I was born with strabismus and have had three surgeries along the way.

    There are four things that will always make an ocular alignment issue worse: stress, fatigue, illness, and intoxication.

    Most PWME have at least three most of the time ;-)
     
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  12. Forbin

    Forbin Senior Member

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    I don't know if ear problems are common in ME, but my first ME symptom was an attack of severe "dizziness," followed by a lesser, but still debilitating, persistent balance problem. The only thing my doctor found a couple of days later was evidence of "fluid in the ear" and blood work that suggested that I was still on the trail end of a viral infection that I thought had resolved 2-3 weeks earlier. The "imbalance" (eventually bad enough to "tilt" hallways and make walls look "bent") would persist for years, and I suspect that newly manifest eye alignment problems could have had a something to do with that. The sort of "bobbing" forward and back symptoms I had seem like something that might be related to erratic eye convergence, sort of like the induced sense of motion you can get in a 3D film. (On the other hand, I still had this sensation with my eyes closed.)

    So far as I know, I was never diagnosed with any eye alignment problems as a child, although I did get some pretty severe ear infections requiring antibiotics (not too uncommon in children, of course). One or the other ear still occasionally gets blocked, seemingly from allergies, but sometimes for no reason. My doctor suspects narrowing or scarring of the Eustachian tubes from those childhood infections. I pretty much assume that the inner ear, balance, eye control and visual distortions are all intertwined, though I'm not sure if strabismus can be connected to the the inner ear in any way.

    I kind of assumed that strabismus, even if latent, was always present since childhood, but I googled "adult strabismus" and found this:

     
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  13. Isaiah 58:11

    Isaiah 58:11

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    Thank you for detailing all of that. It is so helpful to actually hear what other people have experienced vs reading something like "vision problems" in a symptom list.
     
    Forbin likes this.
  14. That is interesting. For the record, I've never experienced ear issues, either as a child or now. I think I have had this vision/balance/centering issue for awhile but really it's become full blown in the last few months. The Doc suspects it's related to the ME...I too wonder like Forbin, whether this is an exisiting or developed condition a result of ME.
    I will be working with a physical therapist, and the Opthomalogist prism glasses. He determined that my alignment was indeed off and I was looking and acting in the world from an unbalanced view, hence the dizziness, brain fog, over stimulous etc etc. I pray this is the answer to at least one of the puzzle pieces of ME...
     
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