12.15.12
Intro: written live
I believe I should/will be writing a yearly a summation of what I've learned about brain and spinal injuries/sprains or at least about mine. Within these summaries will be both strategies I have, am and did implement which may be of use to others both with a TBI and those with other diagnosises wherein the symptoms overlap.
For example I recently heard, haven't confirmed but I trust the source, that in his readings he came across some information on autism that correlates to what was, is and remains an at times truly horrible after effect which I now refer to as: "I lost my mute button".
That translates to an inability to mute sound, to focus on one sound or block out others. I first noticed when an old high school friend (Hi Al) took me to a Hawley-Cooke's bookstore cafe in Louisville. Everyone and everything was at the same decimal level, or so it seemed. I just started crying. I couldn't express or understand what was happening, what had happened.
Over the years as I tried to express to medical personal they'd say things like "Oh that's just sensory overload" or "weren't you always like that?" (No I was one of those people who would put in a music tape low, essentially block out the sound, and study- quirkily background noise I knew and my brain had memorized, actually helped me focus.)
In the ten plus years since the TBI + spinal sprain (major assault on my central nervous system) one of the many horrors (and no I'm not overstating it) has been dealing with those who literally can not conceive or have any baseline understanding of what I am talking about. Who act as if their experience and my experience couldn't be at all different, who pressume there's really nothing that changed and it must be "just lke when you've been in a room with loud for a few hours". No.
No.
What it's "like" is that some mornings I can barely stand being in the shower because the sound of the water hitting tile is so loud I could scream.
Other mornings the sound has no effect and there is no high level noise sensitivity.
If you know the vocabulary word this let me know because in ten years of medical personelle no one has yet to attach a vocabulary word to it except for innocuous phrases like "noise sensivity" or the ever insulting, and both functionally and experientially innacurate term: "sensory overload". Nobody wakes in th emorning to sensory overload, sensory overload as I understand the term is a reation to conditions. "It" is not a reaction to a prolonged exposure to sensory input.
And no
it's not
"just like" anything
you've ever experienced- unless
perhaps
you're autistic?
Anyway that's the skinny I've heard recently. That researchers finally know why, or hypothesize why, autistics bang their heads up against walls "frustration" and perhaps wanting to to make themselves unconscious because they are experiencing sound is like a constant assault. The same way touch can feel like they're being burned- so it is with sound.
Anyway- ear plugs= constantly have them on you. Plus white noise is immensely helpful to me though I understand that others with the same unknown condition can literally be driven close to nuts with white noise. Outdoor environments are of course better than indoor environments because of sound's particle and wave quality. Plus (hopefully) I'm looking forward to getting some Bose noise canceling head phone which of course I must pay for despite being on government assitance- just like I''m the one paying ear plugs.
One doctor told me the noise eliminating headphones wouldn't help, he had a smirk on face at the time like maybe to him this and being like this is simply funny, but another doctor advised I have them on my person at all times and NOT to just use them when sound is to the point I want to running screaming out of where-ever I am but to start using them pre-emptively.
What a difference! Doc- you may never read this- I may never get a chance to tell you but you have no idea the difference you made in my life.
What I wonder about per Bose noise eliminating headphones, as opposed to earplugs, is the pressure and balance differential in the inner ear.
My ears have been popping for a decade now, and no this preceeded the use of earplugs by nearly ten years. Periods of time where my ears are popping constantly which is always accompanied by dizziness (though I dizzy plenty without that particular quirk) muscle clenches and spasms - plus a few extra weird symptoms.
I heard a doctor at Duke University speaking about a year or so ago on the radio and he had mentioned research they were doing based on the hypothesis that TBI may, in a addition to cellular death within the brain, be related to damage/re-arrangement to crytalline structures within the inner ear. I'v etried contacting the program I heard him speak on and a doctor at Duke - but so far no reply.
If all the aforementioned is true then one could surmise that perhaps the earpopping is and are those small crystal like structures being slightly re-arranged and the body trying to heal itself. When I was in school we were told these structures "didn't do anything" which of course is absurd.
What I wonder per the ear plugs is if the pressure redistribution, as well as the moisture level because I sometimes have (what I perceive as) enormous amounts of liquid that has accumulated creates an alteration that is beneficial and part of the relief OR could the relief be more so without the pressure and moisture change?
Hopefully I'll get to find out.
Anyway so that's what I have per this entry:
Tip: If you are a TBI, or other neurologically challenged individual, who is experiencing something beyond "noise sensitivity" or "just sensory overload" and therefore NOT sensory overload but something as of yet not given a term, and therefore legitimacy, by the AMA try the following:
1) ear plugs on your person at all times
2) check out Bose noise elliminating headphones
3) As much experience with outdoor/ nature noise as possible?
What's true for me is that sound reverberating/bouncing off walls and indoor spaces differs hugely from how I experience noise, even music outside/open air. One can utterly incapasitate (totally spelled that wrong) encapasitate (?) while the other is nearly innocuos (suspect I mispelled that). See what the difference(s) in environment make.
4) If you can develope the physical balance, or have access to an amigo or a chair: when the sound thing is bad try instituting what I have come to coin: voluntary blindness.
Maybe only for five to ten seconds maybe for a few hours but I have found that if I can shut down one sense then its like the other one that's overwhelmed has enough neural energy(?) avaliable if the brain system only has one sense taken temporarily 'off-line'.
?
5) I had a five but unfortunately I don't remember what it was:(
6) Though it relates to the visual system (dizzines, depth perception and eyes drifting and darting): The Hansel and Gretel appraoch (previously mentioned) is extremely helpful:
In your visual field, the path you'll be taking, find focus points (non moving objects) close to you and then farther and essentially visually focus and then leap frog to the next visual focus point. I have found this incredibly helpful and when a sudden wave of dizziness hits, at least for me, this technique helps. I don't know why but possibly it helps orient the body in space?
Lastly:
TBW/( to/2 b(e) written): A yearly summation of what I have learned and am still learning about something that occured 11 years ago.
Intro: written live
I believe I should/will be writing a yearly a summation of what I've learned about brain and spinal injuries/sprains or at least about mine. Within these summaries will be both strategies I have, am and did implement which may be of use to others both with a TBI and those with other diagnosises wherein the symptoms overlap.
For example I recently heard, haven't confirmed but I trust the source, that in his readings he came across some information on autism that correlates to what was, is and remains an at times truly horrible after effect which I now refer to as: "I lost my mute button".
That translates to an inability to mute sound, to focus on one sound or block out others. I first noticed when an old high school friend (Hi Al) took me to a Hawley-Cooke's bookstore cafe in Louisville. Everyone and everything was at the same decimal level, or so it seemed. I just started crying. I couldn't express or understand what was happening, what had happened.
Over the years as I tried to express to medical personal they'd say things like "Oh that's just sensory overload" or "weren't you always like that?" (No I was one of those people who would put in a music tape low, essentially block out the sound, and study- quirkily background noise I knew and my brain had memorized, actually helped me focus.)
In the ten plus years since the TBI + spinal sprain (major assault on my central nervous system) one of the many horrors (and no I'm not overstating it) has been dealing with those who literally can not conceive or have any baseline understanding of what I am talking about. Who act as if their experience and my experience couldn't be at all different, who pressume there's really nothing that changed and it must be "just lke when you've been in a room with loud for a few hours". No.
No.
What it's "like" is that some mornings I can barely stand being in the shower because the sound of the water hitting tile is so loud I could scream.
Other mornings the sound has no effect and there is no high level noise sensitivity.
If you know the vocabulary word this let me know because in ten years of medical personelle no one has yet to attach a vocabulary word to it except for innocuous phrases like "noise sensivity" or the ever insulting, and both functionally and experientially innacurate term: "sensory overload". Nobody wakes in th emorning to sensory overload, sensory overload as I understand the term is a reation to conditions. "It" is not a reaction to a prolonged exposure to sensory input.
And no
it's not
"just like" anything
you've ever experienced- unless
perhaps
you're autistic?
Anyway that's the skinny I've heard recently. That researchers finally know why, or hypothesize why, autistics bang their heads up against walls "frustration" and perhaps wanting to to make themselves unconscious because they are experiencing sound is like a constant assault. The same way touch can feel like they're being burned- so it is with sound.
Anyway- ear plugs= constantly have them on you. Plus white noise is immensely helpful to me though I understand that others with the same unknown condition can literally be driven close to nuts with white noise. Outdoor environments are of course better than indoor environments because of sound's particle and wave quality. Plus (hopefully) I'm looking forward to getting some Bose noise canceling head phone which of course I must pay for despite being on government assitance- just like I''m the one paying ear plugs.
One doctor told me the noise eliminating headphones wouldn't help, he had a smirk on face at the time like maybe to him this and being like this is simply funny, but another doctor advised I have them on my person at all times and NOT to just use them when sound is to the point I want to running screaming out of where-ever I am but to start using them pre-emptively.
What a difference! Doc- you may never read this- I may never get a chance to tell you but you have no idea the difference you made in my life.
What I wonder about per Bose noise eliminating headphones, as opposed to earplugs, is the pressure and balance differential in the inner ear.
My ears have been popping for a decade now, and no this preceeded the use of earplugs by nearly ten years. Periods of time where my ears are popping constantly which is always accompanied by dizziness (though I dizzy plenty without that particular quirk) muscle clenches and spasms - plus a few extra weird symptoms.
I heard a doctor at Duke University speaking about a year or so ago on the radio and he had mentioned research they were doing based on the hypothesis that TBI may, in a addition to cellular death within the brain, be related to damage/re-arrangement to crytalline structures within the inner ear. I'v etried contacting the program I heard him speak on and a doctor at Duke - but so far no reply.
If all the aforementioned is true then one could surmise that perhaps the earpopping is and are those small crystal like structures being slightly re-arranged and the body trying to heal itself. When I was in school we were told these structures "didn't do anything" which of course is absurd.
What I wonder per the ear plugs is if the pressure redistribution, as well as the moisture level because I sometimes have (what I perceive as) enormous amounts of liquid that has accumulated creates an alteration that is beneficial and part of the relief OR could the relief be more so without the pressure and moisture change?
Hopefully I'll get to find out.
Anyway so that's what I have per this entry:
Tip: If you are a TBI, or other neurologically challenged individual, who is experiencing something beyond "noise sensitivity" or "just sensory overload" and therefore NOT sensory overload but something as of yet not given a term, and therefore legitimacy, by the AMA try the following:
1) ear plugs on your person at all times
2) check out Bose noise elliminating headphones
3) As much experience with outdoor/ nature noise as possible?
What's true for me is that sound reverberating/bouncing off walls and indoor spaces differs hugely from how I experience noise, even music outside/open air. One can utterly incapasitate (totally spelled that wrong) encapasitate (?) while the other is nearly innocuos (suspect I mispelled that). See what the difference(s) in environment make.
4) If you can develope the physical balance, or have access to an amigo or a chair: when the sound thing is bad try instituting what I have come to coin: voluntary blindness.
Maybe only for five to ten seconds maybe for a few hours but I have found that if I can shut down one sense then its like the other one that's overwhelmed has enough neural energy(?) avaliable if the brain system only has one sense taken temporarily 'off-line'.
?
5) I had a five but unfortunately I don't remember what it was:(
6) Though it relates to the visual system (dizzines, depth perception and eyes drifting and darting): The Hansel and Gretel appraoch (previously mentioned) is extremely helpful:
In your visual field, the path you'll be taking, find focus points (non moving objects) close to you and then farther and essentially visually focus and then leap frog to the next visual focus point. I have found this incredibly helpful and when a sudden wave of dizziness hits, at least for me, this technique helps. I don't know why but possibly it helps orient the body in space?
Lastly:
TBW/( to/2 b(e) written): A yearly summation of what I have learned and am still learning about something that occured 11 years ago.
