Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Vision sensory overload

Discussion in 'Neurological/Neuro-sensory' started by Alexandra90, Jun 14, 2017.

  1. Alexandra90

    Alexandra90

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    My most difficult disability is that my brain can't process my vision. For an example being outdoors is really difficult because of colors, movements, light and so on creates this sensory overload. Just small things like sitting in the nature for a short period of time becomes difficult. I can only drive really good days. When it is really bad my brain can't register distances and shapes. I have to rest my eyes and brain for a whole day.

    I have good days when this just goes away over night, but it always return in varying degrees after a few days. This symptom makes life very difficult, and the only thing that helps are Xanax or Valium. But of course that is not a sustainable option in the long term so I try to avoid taking it because of tolerance.

    I am also always stressed and wired. The smallest thing will set of my stress system with heart palpitations, restlessness and inability to relax. It is difficult being so mentally tired, but at the same never being able to relax, sleep normally or take a nap. Things that my brain probably should benefit from.

    I wonder if anyone else have experience with this problem, and if you find something that help? I pray it will get better.
     
    Molly98, pernille, soxfan and 2 others like this.
  2. Silencio

    Silencio Senior Member

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    Hi Alexandra, yes, it's one of my biggest problems too. I have to limit outdoor time as the vision issues and overload make it unpleasant and exhausting a lot of days.

    I don't have any breaks from this symptom anymore. In the first 2 years it came and went, but has been omnipresent for past 2 years. It's very frustrating. I can't drive and I must limit television and reading. Am afraid I've yet to come across anything that helps, and I've tried a millions supplements.

    I did find my stress response and wirredness calmed down over time with aggressive rest, and less cognitive "work" on computer. For a while I wasn't able to watch any type of drama on tv. Now that's not a problem.
     
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  3. Alexandra90

    Alexandra90

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    I wonder what is causing it? Must be something neurological I guess? I have many neurological issues, in fact my symtoms are mostly neurological, for an example twitching, muscle jerks, internal vibrations, restless legs and tremors.

    The overload has changed the past few months. I have more frequent relief, like the bad periods are shorter and less frequent. But instead I can now only tolerate limited tv watching (before tv was strangely more okey). Sometimes rest actually have effect (when it is possible). So I really hope it will get better.

    Do benzos help you?
     
  4. Silencio

    Silencio Senior Member

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    It's a documented symptom of ME.. so we don't know what's causing any of our symptoms. If you google "vision mecfs" you can find various studies. Simplistically, I think if your whole body fails to make enough energy to operate itself, there will be problems everywhere.
    No, benzodiazepines haven't helped this for me.
     
  5. PatJ

    PatJ far and free I gaze

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    See this thread for potential treatments for the wired-but-tired state.

    Methylfolate helped to finally get rid of my continual wired-but-tired feelings.
     
  6. Marigold7

    Marigold7 Senior Member

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    I live in my bedroom, which is a loft area and has no windows and visit the world in limited amounts. So used t this I never think about it any more. The old cottage I rent has tiny windows. Cannot remember when this was not so and can never spend time in a room with curtains open. Just is as it is. Living and working within limitations
     
  7. Forbin

    Forbin Senior Member

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    You might want to ask an optometrist to do a simple test for "strabismus." It's a difficulty of getting the eyes to focus on the same point. It does not necessarily result in "double vision," but it can make your brain struggle to "combine" the images from the left and right eyes. I first described my experience of this as "seeing too wide a view."

    People can have a "latent" form of strabismus which only gives them trouble when they're tired or intoxicated. I developed it just before the onset of ME and I think it probably was a significant factor in my "vertigo" at onset. My guess is that ME may directly cause stabismus, or it might weaken one's reserves (as would sleep deprivation) making pre-existing, latent strabismus manifest.

    Of course, this may also have nothing to do with what you're experiencing, but I just thought I'd mention it. :)
     
    Last edited: Jun 15, 2017
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  8. Vojta

    Vojta Senior Member

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    I have extreme "visual intolerance" now. I got really worse after possible toxicity and shift in my illnes. I get sick from reading just few words and it accumulates. I can't watch any movies anymore and seeing any movement or text makes it worse very fast.

    Do you have any other visual phenomena? Like palinopsia (long after image of every shape when you move eyes, or when you close them), visual snow, aura?

    You could maybe try some mitochondrial support. I think that taking MitoQ (coQ10) is little bit helping long term and NAC helped little with hang over after.
     
    Last edited: Jun 16, 2017
  9. Alexandra90

    Alexandra90

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    I know how difficult it is so I'm really sorry to hear that it has gotten worse for you :/ I hope it will get better.

    Yes I have long after images and flashes of light, sometimes blue flashes.

    What do you mean when you say toxicity and how long have you been ill for?
     
  10. Vojta

    Vojta Senior Member

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    Thanks. I actually made small improvements in past 3 months so I can actually read and write here. But I always get boost from sun and vit D in summer.

    Yeah, I have flashes, flickering.. etc. All of this is probably conseuquence of our metabolic dysfuction in visual cortex.

    I have also this wired all the time feeleing with restlessness and everything you describe. With all this I also got insomnia which I didn't have most of first years of illness. It's a big problem. I can't rest and do nothing. But instead I'm doing stuff and it gets worse, of course.

    It's almost 8 years since I got ill. Unfortunatelly, I got misdiagnosed with "chronic lyme" which I didn't have and was mistreated with tons of antibiotics which made me much worse and some of them had some toxic effects for my brain and mitochondria. I got lots of new symptoms after that.

    It's interesting you mentioned benzodiazepines. I noticed that when I took Bromazepan those symptoms were getting slower too. But I cant take it because of side effects.
     
    Last edited: Jun 16, 2017
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  11. Alexandra90

    Alexandra90

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    Oh I can relate to this. I get panic attacks from being trapped between restlessness and fatigue. A horrible place to be in.

    May I ask how you were misdiagnosed with lyme? I heard many stories about this happening. But on the other hand I read many successful stories also. I'm about to try and get tested. I can't just accept this disease yet, before looking for other possible alternatives. But I'm very respectful with trying things, especially medicines.

    Have you tried Xanax or Valium?
     
  12. Vojta

    Vojta Senior Member

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    Yeah, it's the most horrible combination the restlessness and CFS.

    I was patient of Kenny De Meirleir in Belgium who was supposed to be only ME/CFS specialist in Europe who took new patients. So I went there because I was sure I had ME and it's ignored disease in my country. Unfortunatelly after some years he switched to "CFS=lyme" obsession and he gave me disagnosis despite all tests negative and my symptoms completely fit ME. So I was treated for many years with antibiotics without any single benefit and then I got much worse with all the new symptoms. Now I wish I never did that. It got me thinking about suicide because it's just too much.

    Yes, definitely try to get tested for as many things as possible, especially infections and autoimmunity. It's worth to rule out everything else. Maybe you will have luck finding some decent doctor.

    I haven't tried xanax or valium but Bromazepan I tried is benzodiazepine and they are all very similar, usually differ only how fast they act and how long effect is. It makes me worse after because I have hang over from it. But I take Lyrica (pregabalin) before sleep now. It has no side effects for me and helps to calm me for few hours of sleep. It has lots of benefits over benzodiazepines. You don't build tolerance and it doesn't impair sleep.
     
  13. Alexandra90

    Alexandra90

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    If I find anything that helps with these issues I promise I will let you know :)

    Valium (only 5 mg low dosage) will cut my symptoms by maybe 60%. Sometimes the effect lasts for two days. I wish there was no tolerance on it since it really helps even with noise sensitivity.
     
  14. soxfan

    soxfan Senior Member

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    I have the exact same type of fatigue. I was also diagnosed with Lyme and was on antibiotics on and off (mostly on) for 8 years. I am certain these caused the issues I have now with the fatigue. I blame my brain for the sensory overload even though it comes from visual things. I feel that my brain can't process what my eyes see. I get it really bad if I am riding in a car with the countryside zipping by.

    I can't be on the computer long but don't seem to have a problem reading ...I can't read a long time but in short spurts.

    I have to say Klonopin helps with this ....when I feel it coming on I will take quarter or half milligram and it cuts the fatigue feeling in half. Usually resting won't help. Once it happens that's it.

    I know Benzos are not the best choice but the small amount I take helps tremendously the past five years.
    Most of my symptoms are neurological as well...muscle twitching...fatigue...internal vibrating and wired ....never calm inside .
     
  15. Alexandra90

    Alexandra90

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    Sorry to hear that you also have this :/
    How were you diagnosed with lyme disease?
     
  16. soxfan

    soxfan Senior Member

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    It took two years after I became sick for the doctor to test me for Lyme and co-infections. I had a couple positive bands on Igenex and also a positive titer for Bartonella. I have been treated for both. They also went by symptoms and where I lived at the time...plus the fact that our cat usually had a few ticks attached to him weekly.
     
  17. Alexandra90

    Alexandra90

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    Shouldn't antibiotics help if you had these conditions?
     
  18. soxfan

    soxfan Senior Member

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    I developed these symptoms after I was treated for Lyme/Bartonella. These were not original symptoms. I have been sick since 2004 ... the symptoms I currently experience now started around 2012 after my second bite.

    I was treated again but have no idea why this happened. I have been struggling with sensory overload for years...wired/ tired and chronic fatigue. I just attribute them to getting CFS as a result of the Lyme...my body just became very dysfunctional
     
  19. Forbin

    Forbin Senior Member

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    One of the documents now listed on the CDC's ME/CFS website under "Information for Healthcare Provider" is the "IACFS Primer for Clinicians" http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

    Among "Non-exclusionary Overlapping Conditions" listed under the category NEUROLOGICAL is

    Visual midline shift syndrome
    Symptoms
    Dizziness/Nausea
    Poor Balance
    I found a description of visual midline shift syndrome on the website of NORA, the Neuro-Optometric Rehabilitation Association:
    [Bolding mine]

    These symptoms seem most associated with Traumatic Brain Injury (TBI) and stroke, but also with neurological diseases like MS and cerebral palsy.

    I don't have any of those diseases, but some of these symptoms sound pretty familiar to me and ME/CFS is often regarded as a neurological disease, at least in part.

    I found one brief thread on Visual Midline Shift Syndrome on PR about 4 years ago
    http://forums.phoenixrising.me/index.php?threads/visual-midline-shift.23135/




     
    Last edited: Jul 9, 2017
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  20. Mindyvee

    Mindyvee

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    Have you gotten better?
    I'm experiencing the same..
    Like while I'm driving things seem over intensified. Lights trees leaves. It's kinda as if I were driving through a video game.
    Then I think my body freaks out and goes to panic.
    Taking xanax beforehand has helped calm it down. I was doing that for awhile. But I didn't want to do this for the rest of my life.
    My neurologist said it could stem from migraines and suggested supplements or medication.
    The medication she prescribed me is Effexor.
    I think I'm going to hold off on taking it until next week & see if I continue to feel better.
    I've haven't been driving much. Maybe less than a mile out from my house.
    I'm going to a psych Monday to see what they have to say. Or at least get more xanax.
    I'm really hesitant on going on medication. Since I do want to get pregnant at the end of next year. But I want to feel 100% better now so I can get my life back..
    What have you done & has it got better?
    Amanda
     

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