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Over-Heated in PHX
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| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
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Posted: Thu Aug 21st, 2008 14:44 |
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Hi everyone!  H has been wondering how many of you get the complete catatonic ways when you get too much light, in particular when your 2% light emitting NoIR's aren't enough protection.
I just re-read this and can't believe how choppy my writing is anymore. Just from writing this, my brain has become exhausted from looking at the dimmed computer screen. I can barely edit it, because my brain is exhausted.
My college classes are starting again soon, which means, even while opting for a night class... DRIVING for about 40 minutes before twilight with the sky still bright on the horizon, then sitting in a classroom with fluroescents, and (oh great, more continuous flooding of the retina) ...usually a power point slide brightly lit behind the professor for 3 hours.
This knocks out my ability to express myself, or remember what I heard. My handwriting becomes completely unreadable no matter how hard I try. I can't remember how to spell words. I miss at least half of what is said, and have trouble following the lecture.
As a coping strategy, I'm going to try tape recording the classes again. This really hasn't helped me that much in the past, even before I began the MP. Blasted computers and powerpoints! Destroying at least some peoples economic gain. Love/hate relationship, molecular modeling only accomplished by computer, right? Often when I use the computer, even with the low-lux light balancing and with the NoIRS on, I start to get what looks like a flashbulb periodically firing. I've heard in the past that this is a sign of a "migraine". I don't know. Has anyone successfully used medication specifically for migraine to control this or any other effects? (Dear moderators, I hope this question is okay to post here...)
I'm so dazed that I feel exactly brain-dead like a zombie, except, hmm.. I don't think zombies feel weak. I stutter, I don't think zombies stutter either, come to think of it... I get jittery and if I dare point at something, my hands and arms shake.
As a second coping strategy, I'd try to stay in bed and asleep before getting up to go to class, even before the MP. Not always possible to sleep, it seems when I haven't been able to sleep, that this zombie-like/can't-think effect is so much worse. I dread having to drive home as I have to first drive through sodium-vapor-light downtown traffic still feeling stunned. I wish I could just curl up in my car and go to sleep for awhile first, but that is of course not a possibility.
I hate this stepford-wife feeling. Driving vehicles these kind of distances is nerve-wracking. If it were just a mile or two to the store and back, I would have some effects but could manage and not feel so heart-in-throat. My filter feels weak, like there is just way too much to pay attention to. I am in an unfamiliar area downtown, so this may get a bit better with practice.
I swear most of the effect is generated due to the direct effect of light pouring in from all sides at the windshield on the way down. then.. a window behind someone in their office that you can't avoid, the professor in front of the powerpoint, or having to study the computer screen. It's having the full onslaught of light against the retina even when protected by the NoIRs.
ALSO, when wearing the NoIRs, I will fade out, have difficulty concentrating, missing everything going on like I've shrunk inside my own dimension. Without the NoIRs, I can concentrate better for that time being, almost able to think.. of course, with the computer light turned way down. I do still get delayed reactions from this activity, no matter how brief. I will become immensely tired. So, I believe wearing the NoIRs is really preferable to protecting the amygdala. How to get around this???
As a third coping strategy, I try to use the Read Outloud program for PDF documents, but still, will listen and then have to read again with my eyes. Hearing then reading does help my concentration, and speeds up the on-screen review... printing is of course sometimes an option but this also can be a problem barring my concentration from a printed page, this even with the light reflecting on the page from over my shoulder. I've always been slow reader and not the best at comprehension. I always would blank-out from shiny white paper in textbooks and be stuck reading over and over thinking I am so stupid to not be able to comprehend what I'm reading!! I am hoping this problem will improve after another 6 months or a year on the MP. I swear through the years I must have learned most of what I know from intently and anxiously listening in class knowing full-well I'd never manage to read the assignments. Oh, for the day of blackboards and chalk. Now, those horrible bright-white wipe-clean boards.
I wonder if this is caused by effects on the amygdala, or is it something else? I don't have the neuro-herx type of reaction many describe (feeling irritable, raging). For me it's more of a state of quiet desperation. I haven't tried to use Valium yet, for the anxiety, but I don't know if it's so peculiar to feel anxious when experiencing this level of mental exhaustion and confusion. Has anyone had the experience to share on this point? I wonder if it might make me drowsy, and it the Valium will address something other than anxiety, in a palliative way? As a fourth possible coping strategy, increasing Benicar beginning earlier in the day and possibly trying valium.
I do wear a leather coat to class, leather gloves, keto cream, a floppy hat, two pairs of pants, and, as a fifth coping strategy, even have worn during class a pirate patch over one eye, my right, more acutely sensitive, under the NoIRs!! Someone here suggested a dark bandana under the hat, why not? But I still think it's the eye/retina that needs more protection of some sort.
I've tried taking the bus, but by the time I walk from the park 'n ride in the daylight then travel in the daylight-filled bus, I get just as much light exposure. If I had a driver I'm sure this would help, but unfortunately, this is an unlikely possibility.
Now, when I can stay home, I can talk on the phone and make perfect sense most of the time. With light exposure, I'm nearly always a wreck, can't talk, get exhausted, get the fluroescent light shakes, can't remember, can't think, can't concentrate, can't spell, can't write legibally. I feel completely out of sync.
Then, I will probably have trouble sleeping at all for the next 24 hours once I do get home, I will feel as if the light is flooding my eyes and I'll see flickering beneath my closed lids even in a dark room. Finally, when I do sleep, I'll be asleep for a very extended time, like 15 hours! So, attending one evening class pretty much wipes me out for 48 hours. Last semester I attempted a seminar that was all day Friday and Saturday. I thought I would die, and did drop the class.
If anyone has other coping suggestions, or relates to this experience, I'll be grateful for your comments.
Still, ver-Heated AND especially Lng-Winded in PHX
Last edited on Thu Aug 21st, 2008 16:16 by Over-Heated in PHX
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Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Aleve, Anacin or Lodine XL; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
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edj2001
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| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
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Posted: Thu Aug 21st, 2008 16:14 |
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Hi H,
I understand what you are saying. I started back to college last spring (Jan 08) taking two classes. I would have been in phase 3 for almost 2 years at that time. At first it was difficult to comprehend the lectures and my note taking skills (never good) were awful. I tried to time my abx so I felt good in class sometimes going several days w/o but maintaining the benicar frequency.
I depended on reading and rereading the text at home. There were definitely times when my mind was more receptive and I could concentrate. I tried to take advantage of those appreciated periods. Other times there was no comprehension at all. As I continue to progress on the MP the periods of alertness are increasing.
At first I wore the NOIR glasses and a ball cap in class. I advised the instructor why that was necessary and she was OK with it. In fact, we had some interesting discussions about chronic illness.
I used audio books at home (in the dark) to supplement the classes but more so to enjoy a good story. I think that helped me train my mind to start focusing when I would get into a good story. I have always been a “can’t put the book down” person.
You need to time your “re-entry” back into the world to be successful. Do not try to do too much too soon.
Hope this helps,
Gene
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph|digitex 0.125mg q24h propafenone 150mg q8h armour 60mg q24h proscar 5mg q24h Guaifensin 600mg qid Aspirin 81mg q12h |1,25D=50 (10/05), 25D=7 (4/08)| avd l&D
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Over-Heated in PHX
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| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
| Posts: | 82 |
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Posted: Thu Aug 21st, 2008 16:44 |
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edj2001 wrote:
Hope this helps,
Gene
H, YES! It does help! Thanks Gene! I see you made my ver-Heated face smile!
May I reiterate your five additional coping stategies:
coping stategy #6 I tried to time my abx so I felt good in class sometimes going several days w/o but maintaining the benicar frequency.
coping strategy #7 There were definitely times when my mind was more receptive and I could concentrate. I tried to take advantage of those appreciated periods.
coping strategy #8 At first I wore the NOIR glasses and a ball cap in class. I advised the instructor why that was necessary and she was OK with it.
Gene, before I started the MP, I was just struggling. I felt so alone that I didn't want to tell the professors I was sick until much time into the semester and then only if necessary. I finally bucked up my courage one semester and let them all know after the first class. I do think they appreciate it as well. Now, it is off their shoulders to broach any subject since the student took the initiative, and many teachers are very supportive of students with disabilities whether defined or undefined. However, it is not always the case. I felt especially intimidated by one professor who really has a chip on her shoulder against those with disabilities. Unfortunately, those narrow-minded and judgmental do exist. Overall though, letting them know the situation upfront has worked to ease my own nervousness about "when" to tell!! Once you say it, it's over. Also, if early in the semester, the news falls upon deaf ears, its often still possible to find another class slot with a more understanding sort.
coping strategy #9 I used audio books at home (in the dark) to supplement the classes but more so to enjoy a good story. I think that helped me train my mind to start focusing when I would get into a good story.
coping strategy #10 You need to time your “re-entry” back into the world to be successful. Do not try to do too much too soon.
Those are all great stategies, Gene! Best of luck in your continuing recovery!
H
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Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Aleve, Anacin or Lodine XL; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
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eClaire
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Posted: Fri Aug 22nd, 2008 06:41 |
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While I don't know if this will be true for you, but while I was in law school during my second year I had a terrible natural herx (my immune system went on a tear). During fall exams I was literally delirious with fever. I got my best grades that semester in law school. I just didn't care and not caring resulted in my going on auto-pilot and for some reason whenever I go on auto-pilot my brain seems capable of doing amazing things. I wish you the same!!! Claire
(The biggest thing to watch out for on the MP though might be to keep a tight control on neuro herxing, as it can be worse than physical, but more difficult to spot--not just the light-related kind--, and so do what you can to not only moderate the light but to keep the neuro herxing to a minimum while in school, which means going as slowly as you need to. And if you have to take a break from school, you'll know.)
Last edited on Fri Aug 22nd, 2008 06:42 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Over-Heated in PHX
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Posted: Fri Aug 22nd, 2008 08:51 |
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eClaire wrote: ...for some reason whenever I go on auto-pilot my brain seems capable of doing amazing things. I wish you the same!!! Claire
Auto-pilot.. H how I wish! Thanks Claire!
Interestingly, I have found papers that sound pretty good. Start to read them, think "this is pretty well written" ..then questioning.. wait a minute..did I write this? GAD! Auto-pilot.. that has to be the explanation. Another mystery solved! I have heard this same strange phenomenon of not recognizing their own good writing as their own from other Morgies.. (suffers of Morgellons).
coping strategy #11 The biggest thing to watch out for on the MP though might be to keep a tight control on neuro herxing, as it can be worse than physical, but more difficult to spot--not just the light-related kind--, and so do what you can to not only moderate the light but to keep the neuro herxing to a minimum while in school, which means going as slowly as you need to. And if you have to take a break from school, you'll know.)
Unfortunately, swapping school loans for house payments, etc. Is the one manuever I have to keep my health insurance and a roof over my head, so tolerate it or not, off to school I go. For some reason, Arizona has the worst record in the country for timely processing of SSD claims. It will be yet another full year before I even have a court date, and I filed nearly two years ago. Ridiculous I know. I read your post Claire, about seeing your GP even though you knew he could do nothing to help you, and that at least helped establish your disability claim. They had 3 inches of documentation in my case, but chose not to look at it. GAD. GAD is one of them. Their own psychiatrist (a psychologist PhD) diagnosed this and said I was disabled and should be off work partially because I would distract others in the workplace..due to this condition, and they ignored him too. So, suffer the weak.
I wish I could just pack up and leave this constant sun and heat. I felt much better in a cloudy climate on a visit to northern Illinois. I can't manage it though.
The rainbow in my imaginary clouds is that I am in ASU's MNpS..a Master's program for non-profit studies.. and hope to benefit the causes I believe in...
(guess which one leads the parade?  ) ...generate capital through a hybrid-type organization, and I have developed a proposal.. a plan.. yes, Claire, it was entirely on auto-pilot. I say a trance. Everything fell into place so easily. I can only imagine I would have created it so effortlessly with help of a divine nature. A guide of some sort, at last I think I'm going in a right direction. I'm not delusional (really I'm not!)
I imagine I would get well faster if I were not having to weather the school environment, but such is life.
If anyone has more input on specifics that might help control neuro-herxing, I will greatly appreciate it.
Still, H
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Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Aleve, Anacin or Lodine XL; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
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shegeek
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Posted: Fri Aug 22nd, 2008 10:44 |
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When I was in college, I had a prof with eye problems (he probably had Th1) who would print everything on colored paper, and use colored transparent film (probably from a report cover) to read white papers. My DRC (disability resources center) used to try to offer me note takers, and some of my classmates had them--might that help you, if they're available to you? You could close your eyes during lecture and let the note taker transcribe the whiteboard material for you to read later. You can always darken your own computer screen, if you haven't done so already. Windows and the various Linux desktops have dark themes, and you can set Word, browsers, etc to use white text on a black background. This makes things worse for some people, but I find it indispensable.
Mod add: How to change screen background to reduce glare
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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