Re: Triggers
Judy ...ALL THE ABOVE!!! Plus: * Moving in and out of shadows (light & dark) as when travling by car. * Deadlines ... Having a clock deadline absolutely panics me, so I
usualy try to "set my head" ahead enough to compensate. * Fatigue. Sally in North Idaho
Re: Triggers
I'm with you on the wind and fluorescent lighting.Also:
Riding in a car (driving is easier)
Rainy days, high humidity
Running or walking fast - anything strenuous
Hurrying, being rushed (like Sally - trying to meet a deadline)
Looking into bright sunshine At least those are the most common. Virginia in AL
Re: Triggers
I've got my caffeine-free DrPepper instead of the cyber coffee.My triggers at this point are: 1. My parents( the thought of going to visit them will shut my eyes down.) most of the time that I am around them, my eyes are completely closed. My father is a non-stop talker which also has a little to do with it. 2. Overhead directed lighting-those little spotlights. 3. Anytime, someone is talking to me, the longer their conversation goes on the more I shut down. This is better since my surgery. 4. Being tired 5. Any form of stress 6. My husband talking loudly (he doesn't have to be mad or anything, he just sometimes talks loudly) loud music that I enjoy does not bother me. 7. Certain stores use to bother me with their lighting but my darkest pair of FL-41 tinted glasses took care of that. 8. Cloudy, rainy days 9. Watching TV, reading
Actually, all are better since my myectomy, although, my eyes will still shut down, it is not nearly as severe.
I still do best when I am at home alone. Shirley in AR.
--modified by Shirley-Arkansas-USA at Thu, Jun 07, 2001, 17:05:51
Re: Triggers
Lighting of any kind doesnot bother me
Triggers.
Any kind of stress.
Getting tierd.
Walking very far if i carry anything.
Reading
Wind.
My husband when he is in a bad mood.He tries to stay calm, but somethimes slips up.
Colleen in IL
Re: Triggers
This is very interesting to me. I have some of the same triggers you all do; however, I also have symptom free days. And a lot of you mentioned people like your husbands. Well, my husband is my biggest support but he is also my biggest stressor. It's a dual-edged sword, so to speak. Fatigue is an issue, because teaching is tiring and stressful. But mostly I think it's my husband.
Shelley
Re: Triggers
Judy, I share all of yours except for the moving air/wind, etc.
I can feel fine at home (comfortable??) and then go out in the car and immediately clam shut. But the Florida sun is very strong and bright and it does take some adjusting to. Marie in the Sunshine State
Re: Triggers
There are two main factors for me that I think I have figured out--
My emotional and physical state--meds and botox. A few of my close friends who have been observing me for some time now indicate when
something is bothering me, I am worse. And the worst isn't necessarily
when I am feeling it. It can happen a day or a few days later!!
There is also a general improvement following botox injections.
Full florescent lighting is unbearable at any time. The lower lighting
in some of the supermarkets now is workable with Fl41s at 85%.
Other lighting is questionable. Daylight requires FL41s at 85% and
a pair of wraparound glasses with them. Also relating to emotional is having anything or anyone drain me.
I can give only so much and it seems that I have less to give and a
bit less patience than before the illness so everyone around me is having to get used to a new me so to speak. Stress ties in with
that as well. Getting on my pitty pot and being negative. Like Shirley, watching TV and reading can be a problem. Walking can set me off. Yet when I am dancing, I am usually ok. When I recently walked into a gambling casino with me folks, my system
went nuts. Clanging from machines, blinking lights, noise, smoke
caused almost total shutdown with eyes and breathing. I physically
had to get out of there. Joanne M. San Diego, CA
Re: Triggers
during the period my injections are kicking in and my eyes are fluctuating, almost anything can upset them, After that, probably all of the above also if i do it too long. Also i have to limit myself on the computer because extended time on that is really hard on them, including affecting the next day.
one thing that has changed for the better is that with the Celebrex m y eyes are no more at their worst consistently on rainy days. Now really bright clear days are often the worst, to my puzzlement.
Re: Triggers
during the period my injections are kicking in and my eyes are fluctuating, almost anything can upset them, After that, probably all of the above also if i do it too long. Also i have to limit myself on the computer because extended time on that is really hard on them, including affecting the next day.
one thing that has changed for the better is that with the Celebrex m y eyes are no more at their worst consistently on rainy days. Now really bright clear days are often the worst, to my puzzlement.
Re: Triggers
My triggers are the same as most of you.1. Sunlight 2. Driving more so than riding but being a passenger bothers me as well 3. Reading 4. Computer usage 5. Wind, rain, cold 6. Quick movement (when my girls were younger and they would splash in the bathtub in would send me into a tailspin) 7. Fatigue/lack of sleep (when my daughter was sick, I was up 7 times in one night and the pedi asked me what was wrong with my eyes) 8. Stress of any kind 9. Maintaining eye contact
Re: Another Trigger
Another situation that sets my spasms off is being in an open space, such as a large room, a parking lot, or yard. I seem to lose my sense of balance and direction, and my eyes clamp tightly closed. I need to have something to touch, preferably to trail my fingers along.Sally in North Idaho who just sought out the manager of the Safeway where I shop and commended his chain for voluntarily turning down the lights in order to conserve energy. It is still plenty bright in the stores, but a bit easier to endure when shopping. He was very pleasant and appreciated my comments.
Re: Another Trigger
also extreme temperature changes within one or a few days.
Re: Another Trigger
My husband & I did a test on music. when he plays something that gets on my nerves my eyes will shut turns it off they open turn it back on they close.It is so weird that we really get a laugh out of it.Another trigger is certian odors like a feed store
Colleen in IL
Re: Changing Triggers
Home Depot was the worst for me. I couldn't figure
out if it was the lighting, the loud noises, or
the smells from the paints, and garden supplies.
At one time or another I can remember all the mentioned
triggers. I played my own head games. I would go places spontaneously
so I wouldn't have time to get nervous remembering how I reacted
the previous time. I think that was part of what helped me.Has anyone else experienced what used to trigger you off, does not affect you any longer?
Mindy in NY
Re: Another Trigger
Colleen, Same here with the music. If it is something that I like, it doesn't bother my eyes one way or the other but if it is music that I don't care for, it quickly starts to annoy me and my eyes close down. In fact, loud noises or anybody talking loudly, especially if they appear annoyed or upset will shut me down quickly, too.Best Buy used to shut me down along with Mindy's Home Depot. It must have been the lighting because I no longer have a problem in any of the stores like that as long as I wear my darkest pair of FL-41 tinted glasses. Shirley in AR.
Triggers
For me, it seems that if I am having a good eye day, I do OK with the most intense triggers....but if I am having a bad eye day, its almost as if I am locked in to an over-reaction to triggers. The worst for me is moving lights, especially fluorescent, or me walking under those lights. The worst I can remember is having to run in the airport to catch a plane, getting on one of those walkways....lights flashing by...I was almost totally blinded. Also we have these conference rooms that have one whole wall that is window, and the other 3 walls have no window. The room is relatively dark except for the bright window. Sitting their in meetings is bad news unless I have my back to the window. Meeting new people, stressful meetings, being tired and stressed, those will do it as well. Luckily the computer is relatively easy on my eyes. I just got FL41s and found them very restful for my eyes. However they were 40% tint and they were a bit too dark for my office (I found myself taking them off to see things in the darker corners of my office). I have removed the fluorescent light from right over my desk, so I have only one light and it is relatively dark. Knighten Optics was kind enough to take them back and is re-tinting them to 35%. Anyway....it is interesting to see that most of our triggers are related. It makes me think that we have a common medical cause of BEB/Meige, rather than lots of different medical causes for the same symptom. Hope to meet you all at the conference in August (I plan to go)
cheers
Andy
Re: Triggers
My triggers all seem to be stress related. Driving makes my anxious, so I get worse then. Sometimes I am sensitive to sunlight, sometimes not. I still listen to loud music (throw-back from the 60's that I am). I work under fluorescent lights all the time. Certain people can be a trigger. Does that happen to anyone else?
Shelley
Re: Triggers
Stress ... definitelySunlight ... always Certain people ... YES!! Sally in North Idaho
Re: Triggers
Hi Shelley,
Yes, sometimes sensitive to sunlight, sometimes not.
Yes to certain people.
Stress - absolutely.
Mindy in NY
Re: Triggers
I am sensitive to light also and stressful situations and other things that have been mentioned. I started taking B-150 Complex vitamins about 5 days ago and I've noticed that I have less stress and anxiety. I read about that from someone on the BB. When I drove to Oxnard yesterday, about 2 hours each way, I noticed I felt a lot more calm and driving was easier. I also like to sing or hum when I'm driving and that helps a lot too. I think there is something good about taking the B vitamins. I will continue to take them. Margo
Re: Margo
i posted that and swear by them. they really work, don't they? a couple of days ago i forced one down my boyfriend's throat after he had a run in with a road rage person. and he definitely seemed calmer the next day, although he will not admit it.
Re: conference
Hi Andy,
I'm always trying to find a place that I can have my back to the windows or bright lighting. I also don't have much of a problem with the computer.
My husband and son and I will be attending the conference. We'll have to figure out some way to designate ourselves as BB people. I made a spectacle of myself first thing last year so people were able to find me.
Maybe we could all wear cowboy boots. :-)Shirley in AR.
Re: conference
yeah, maybe some Tony Llamas in red or purple ostrich.
Re: Another Trigger
how about sitting next to a man on a sofa or anywhere and give him the t.v. flipper. i feel like my eyes are going into fast forward and the tape starts to unravel.
Re: Another Trigger
When you are in a large area and can't open your eyes
and walk, try walking backwards. You won't get far,
but it will help with your balance and direction.
Mindy in NY
Re: Another Trigger
THanks, Mindy. I'll try that. I always try to grab a cart from a parking lot to help guide my way into a store. If I have something to hang onto, I do okay.Sally in North Idaho
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