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
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