Re: Words of Wisdom
Hi Debbie. Good questions. I'm sure that you will get a lot of input.
My eyes don't twitch and we have discussed "spasms" before. A spasm would just mean that the muscles around your eyes are contracting or squeezing-forcing your lids to close or making you frown, etc. My eyes squeeze closed to varying degrees. Sometimes very tightly and long enough to give me a headache. Sometimes they just close. Different muscles around the eyes will cause different individuals problems. My right eye was always the worst until I had my upper myectomy done. Now it behaves better than my left eye. The surgeon did more aggressive muscle removal on that eye though as it caused me so much trouble.
Some people seem to just blink excessively rather than so much squeezing. I've never done that. I've always squinted, though.Your eye or eyes may be droopy now because of the BOTOX weakening your eye muscles (most commonly the levator muscle which runs across the midline of the upper lid). This is referred to as a ptosis (lid at half mast) and can be very frustrating in itself. It can last for a few weeks or as long as the BOTOX is working. It varies. Injections should never be given in the middle portion of the upper lid for this reason. The other little "tests" that the neurologist was having you do were just neurological checks that they do at every visit. It is part of a neurologist's physical exam. Most of it doesn't have anything to do with your blepharospasm. I've always passed the "looking up at the ceiling" test with flying colors. You may also notice that your eyes may not act up as bad when you are in the doctor's office. Frustrating, too. Your eyes will probably stay open while you are doing the talking and then close when your doctor starts to talk to you. At least mine do. Hope this helps a little.
You'll hear from others on this one. Shirley in Arkansas with BEB/Apraxia
Re: Words of Wisdom
Hi Shirley, Thanks for answering so quickly. Noted your comments on twitching and spasm. This helps me to understand it a little better. You have been helpful. Thanks for your words of wisdom.
Debbie
Re: Words of Wisdom
>You may also notice that your eyes may not act up as bad when you are >in the doctor's office. Frustrating, too. Your eyes will probably stay >open while you are doing the talking and then close when your doctor >starts to talk to you. At least mine do.Man I hate when that happens!
Re: Words of Wisdom/ceiling test?
What is the purpose of this test? I've never done it.
Re: Words of Wisdom/ceiling test?
Kathy, I'm not sure what the specific reason for that test is. Sorry. Neurological eye "tests" are checking the strength of your eyes and to see if both eyes work together and equally well. They usually have you look from side to side without moving your head and "follow the finger" from your nose to the doctor's nose and back and looking up. They are checking to make sure that you are "neurologically intact" or that your eyes and brain are working "as one".That's the best I can do for an explanation. Neurologists routinely do this as part of their exam. Shirley in Arkansas with BEB/Apraxia who has added a few more pictures to the album.
Re: Words of Wisdom/ceiling test?
Kathy, My neurologist has me do these 'test' at each visit. I wasn't sure either what they were for so this is why I asked the question. Thanks to Shirley, she knows what going here!
Debbie
Re: Words of Wisdom/ceiling test?
Shirley my neurologist does the test at each vist.
He also wants to see my teeth.Do you know why?
Colleen in IL
Re: Words of Wisdom/ceiling test?
Colleen, it is also a neurological test. He is not really looking at your teeth, he is looking to see if your smile is even and also looks at the muscles around your mouth and face. He may have you walk "heel to toe" also, which is checking your balance and coordination.
This is all just a basic explanation.Shirley in Arkansas whose field is not neurology. Those people are way to smart for me.
Re: Words of Wisdom/ceiling test?
Thanks Shirley i was allways going to ask the doctor,but had so many questions that i forgot that one.
Iam going Wednesday for my Botox
It has been 3 months.I have never
went this long.
Have been able to drive the whole time.
Take Care Colleen in IL
Re: Going for BOTOX
I'm glad that these last injections worked well and you've been able to drive. We'll keep our fingers crossed and hope Wednesday's injections do just as well.
If you think of it, ask the doctor about the little tests, anyway and see what he says.
I kind of miss going to St.Louis for my injections and I certainly miss Dr. Perlmutter. It was just such a long trip to make. I always felt that I was in very good hands there. If things don't work out here, I will definitely make the trip, though and once again get my injections there. I sure wish that they were closer to me.Shirley in Arkansas
Re: Words of Wisdom/ceiling test??colleen
Good for you , colleen. Did you consciously try and prolong the period of time between your injections or were your eyes just altogether better this time?
Re: Words of Wisdom/ceiling test??colleen
When I went to see the new doctor (neurologist) he had me do that test also. I could look up for only a few seconds before my eyes closed. Maybe that is what he is looking for - to see how long your eyes can look up. I think I failed the heel to toe test as I wobbled all over the place. My balance is not good and I tend to lean to one side when my eyes close. I have an appointment to get the Botox from this new doctor May 2nd. They have someone else coming in so we are sharing a bottle. Botox- that is. Joyce in NC who is making lasanga for supper - the kind with real meat (ground chuck- which I have a special way to get all the grease out)real mozzarella and Ricotta cheese. My sauce is cooking in the crock pot and my kitchen smells so good.
Re: Words of Wisdom/ceiling test??colleen/joyce
Joyce
I've ben trying to get back to you. Can't get my e-mail to go through with the e-mail adress you gave me.will you try me at dkjbeav_2000@yahoo.com. I'm really interested in hearing what you have to say about our doctor.
Thanks so much.
Dianne in Bladen County
Re: Words of Wisdom/ceiling test??colleen
Kathy if it was not for the pain i could wait a while for the shots,but the pain is pretty bad.
Colleen in IL
Re: Words of Wisdom/ceiling test??colleen
Oh I agree with you 100%. I'm glad that they seemed to work better this time for you.
Re: BEB spasms & 'twitching'
Hi Debbie,I can only describe the eye spasms I get as being like charlie horses (cramps) that you might get in the legs. When the botox is running down I get them a lot causing my eyes to close and the headaches to appear. After botox, for about 3-4 weeks, I get the spasms in each eye individually - a fight between the spasms and the botox it seems. When the botox eventually takes over (after about 6 weeks) things are calmer until the next time! This time around the botox hasn't taken as well and I'm blinking and squinting quite a bit, but not the spasms so much. Hope this helps. (we are all different). June in Toronto (beb/meige)
Re: BEB spasms & 'twitching'
Hi Debbie,
I have more twichting than full out spasms. If you can blink your eyes fast enough so that it looks like your watching an old 35mm flim, that's what happens to me in bright light. In regular lighting I just blink more often then a "normal" person. Then at times, one of two things happen either my eyes shut completely and I can't get them open, or I get a full face spasm and both eye cheeks and forhead squeeze done. The klonopin helps with the big spasms, I don't get them as often. I just got botox for the twitching and apraxia yesterday. I'm keeping my fingers crossed. Take care
Denise
Re: BEB spasms & 'twitching'
Hi Denise,
Thanks for your input. I sort of wonder about things since I don't really have the blinking either, my eyes just close. So no spasm that I can speak of, no twitching and no excessive blinking. In fact, with the botox injections I had often wondered if I was even blinking at all! I think if I do it isn't very often. When it is sunny and I go out, my eyes just instantly close because of the brightness and it takes a some time to adjust. Anyone have any thoughts on this?Debbie from very, very sunny Ontario today.
Re: BEB spasms & 'twitching'/Debbie
My eyes have also just "shut down" or close as you describe, it can be quite scary if it is for a prolonged period of time. I think most of us? have the light sensitivity you are describing and have learned by now never to be without our fl41's or dark glasses as this can trigger a really bad set of eye shenanigans. Lynn has a very well thought out scientific explanation for this; the retina is bathed in light and then..
Re: BEB spasms & 'twitching'/Debbie and Denise
I used to get that very rapid blinking, less so now. I call it strobe light vision. The past 2 times I've gotten this vague twitch in my left upper eye now and then, it's a new symptom for me. My spasms are also like charlie horses or very bad cramping and hurt something awful. My eyes also "fight " the botox after injections, some times are much worse than others, there have been times when they haven't hurt that much, but only with the celebrex in my system which acts as a painkiller. My left eye often acts up alone during the period between injections and is usually the first one to get bad when it's time to have them again.
Re: BEB spasms & 'twitching'
I was interested to ead that people have the left eye closing first. My left eye has always been the woerst one too. I have always been able to open one eye easily and when tired would read with my right eye...which is very short sighted, so I don't know why I chose that eye to read with!
I have had the rapid blinking, the spasms where the lids come down and presses so hard on the eyeball so much that there is a sort of tremor and my eye area and they and my forehead ache. But I wouldn't hve referred to it as twitching for me. The Botox helped this for a short while so that all i had was my eyelids closing and then when they decided to release themselves, ie to open, they would open, perhaps one at a time,or perhaps one halfway for a while, or open only slightly but enough to see out of the bottom of my eyes. When that happens I have to tilt my head right back with my nose in the air...so my family have nicknamed me "Snoots", as I look so haughty!
I have noticed however that when I step abruptly off a pavement (kerb?) tht my eyes can fly open for a second and immediately close again. Why is that? Also when in a dangerous area if there is someone around to help me I freeze up, and i mean my whole body tenses with fear,and my eyes are tightly shut and i have to be almost dragged past. But I have a feeling that if i was compltely alone my eyes would maybe fly open just like they do for a second when i fall over something. Is it something to do with adrenaline or what?
Pippa..intrigued. Got my second lot of Botox today, and was fine with 7 of them, but needed a moment to have a wee cry and release the tension before i could have my 8th one. Are any of you affected like this or am I just a wimp?
Re: BEB spasms & 'twitching'
Pippa, I think that it is probably a combination of adrenalin and also a bit of a sensory trick that causes your eyes to open suddenly and briefly when you do something like "missing a step on a curb". Something has fooled the brain briefly and your eyes opened and you figured out what happened and your brain said "ok, it's shut down time again-that was just a curb".I can also relate to your eyes shutting down in a dangerous area when you are with someone to help you. My eyes will close down by the mere presence of another human being in the room. This is most distressing when it is my immediate family that is involved. This has been one of the most frustrating aspects of the disorder for me to deal with. I'm at my best if I am totally alone. Whenever someone else is around, I am constantly aware of what my eyes are doing or not doing which only makes my eyes worse. When I am alone, I sometimes forget about my eyes and they seem to do better. You're not the first, last or only one to ever cry when they got their injections. It's stressful and they do hurt at times. Injections around the eyes are being put in a very sensitive area. Most people aren't crazy about shots anyway and the mere thought of getting them around the eyes sent chills down my spine. Believe me, we are brave to get through this and to actually go back for more. Shirley in Arkansas where we just had a nice thunderstorm. And yes the baby robins survived it with their mother nestled on top of them.
Re: BEB spasms & 'twitching'
Hi Pippa,Don't bet the farm on your eyes opening normally if you are alone in a tricky situation. Mine totally went bonkers on me in a large mall parking lot in bright sunlight. I had to ask complete strangers to help me back to my car. So frustrating. Don't worry about crying. I have two sites on each side that almost make me go through the ceiling (one much worse than the other) and have to ask the doctor to pause a minute until I can catch my breath and go on. He just pats my shoulder and waits until I say I'm ready. I like for it to be done quickly and be over with. It's for certain that I'd never do this just for wrinkles. Sally in North Idaho
Re: BEB spasms & 'twitching'/Pippa
Yes , it is adrenalin. we have had many a discussion on this. My body does the tensing thing too, especially in fear situations. For example, I can't tolerate the feeling of speed ( or going fast) in a car, or any type of motion. I just freeze in that sensation on my body.
I have been having my injections for so many years, I can offer you some advice. At first, my doctor and i tried ice in a susrgical glove that temporarily numbs the area, first one eye, than the other. The problem with this is that the injections have to be done rather immediately after this. Timing. that doesn't work any longer for me. Now I apply 3 layes of Emla cream, thickly at 15 minite intervals at least about 1-2 hours prior to the injections (i learned about this on the bb)and take 1 tylenol#3 w/ codeine at least 20 minutes before them. I don't particularly care for the spacy out of it feeling that lasts the rest of the day, but the way it works in me is that the injections hurt at the time momentarily but there are no reverberating pain sensations for hours afterwards, which I WAS experiencing. It's almost like you forget the pain. My injections hurt me a great deal , others don't have this pain , so you might try the ice or the emla first.
Re: BEB spasms & 'twitching'/surgical tape
Another "sensory trick" we learned on this bb, is when one of your eyes gets out of control, you secure it with some surgicla tape , placed over the upper lid and streching to a point, slantedly, beyond the brow area. It sometimes stops the offending eye from spasming after a while. the clear tape is good if one does not want to appear too nerdlike.
Re: Or something cute
Or you could use a Peanuts gang bandaid or something cute like that ... start a new fad. Might lift your spirits.Sally in North Idaho just being nutty.
Re: Or something cute
Sally, I think that you and Kathy are both being nutty lately. I like it. Keep it up.
You haven't been feeding everybody those "weird cookies" that they are talking about, have you?
What would our children think? :-)Shirley in Arkansas who has never had any "funny cookies or funny brownies" :-(
Re: Or something cute/Sally and Shirley
I told you, it's spring fever! I am trying not to suppress a strong streak of mischief in me that does not come out very often. I have just been too good in my life. Do you think strange cats would mind if I used a squirt gun on them?
Re: Or something cute/Sally and Shirley
Kathy, I'm totally against suppression of mischief. I think that you should have a little fun. It's Spring!. Go for it.
Hey, if the cats don't like it, they will probably leave. It's only water and much worse things have been done to kitties. I know that you wouldn't do anything to hurt them, anyway.Shirley in Arkansas who is now invisioning Kathy with one of those huge Super Soaker 2000's with a four gallon back pack tank, armed and ready for battle.
Re: Or something cute/Sally and Shirley
Kathy, I like your streak of mischief; keep it up. I think perhaps you and I have been too good, prim and proper, long enough. It's time for us to break loose and do something wild! Got any ideas?Instead of shooting water at poor cats or other animals, why not aim at strange looking people as they walk by. If you end up in the hoosegow, just call for Shirley. Sally in chilly North Idaho
Re: Or something cute/Sally and Shirley/WARNING!
When I am an old woman i shall wear purple
With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other people's gardens
And learn to spit.
You can wear terrible shirts and grow more fat
and eat three pounds of sausages at one go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.
But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers. But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.... (This is one of my favourite poems. It is called WARNING, and is by Jenny Joseph, 1932.
Pippa...who has bought a purple hat...)
Re: Or something cute/Sally and Shirley/WARNING!
It's one of my favorites, too, Pippa. Thanks for posting it. In my writers' group meetings we frequently mention this poem. Last week there were three ladies sitting side by side, all wearing purple. Several of us began reciting this poem and I couldn't believe that one of them didn't know what we were talking about. I printed a copy of this to give to her next week. You saved me the trouble of looking it up!Sally in North Idaho where the sun peeked out now that it's time for the moon to take over. I like the moon better anyway.
Re: Or something cute/Sally and Shirley/WARNING!
Pippa - I have that poem done in crosstitch hanging on the wall, done by my daughter ~ I love it! You may be interested in looking at the website for Red Hat Society. Mary, wanting to sit on the curb and spit!
Re: Or something cute/Sally and Shirley/WARNING!
This I must see! But I have asked Jeeves and MSn and I still can't find the website. Any other hints how I can see it?
Pippa...in rainy Scotland today. But going down to our boat today to clean it up and stock up with food and mood changing substances,ie alcohol. (Actually it is more for central (internal) heating after a day sailing in what is now very chilly weather. Honestly!) We will be having some guests on the boat next weekend who will help us take it over to the West Coast since i am no longer reliable crew. It should be fun, but I am a little anxious.
Red Hat Society/Pippa
I don't know whether I'm allowed to do this, but I'll rake a chance and try.... type in www.redhatsociety,com Mary
Re: Red Hat Society/Pippa
I just went to the website and thought it was wonderful! I have never heard the poem 'warning' before and just loved it. Thanks for sending.
Debbie
Re: Red Hat Society/Pippa
Thanks for that. It is a really interesting site, isn't it? I didn't know it existed. (And i am now not sure that i should have copied the poem out in full either! I didn't know that i couldn't/shouldn't do that before)
Pippa.. (in trouble again?)
Re: Mischief
I can no longer think of anything bad to do. We had some dark overcast weather for 3 days and all my mischief went away. Beside how much trouble can a blephro who can't drive get into?
Squirt gun/Kathy
I use a squirt gun to keep the squirrels off my bird feeder.......My grandchildren think it's hilarious! Mary
Re: Squirt gun/Kathy
Gerry took our birdfeeder down, I hope temporarily, yesterday because we have a bird that we think is retarded. It sits on top of the feeder and poops all over it, then keeps flying into the sliding glass door. I will be sitting at the computer, when I hear, "Thump....thump... thump ...etc. It won't stop till I get up and close the shades part way. So strange.
Evelyn
Re: Not retarded-just has special needs
Evelyn, the little birdie sees his reflection in the glass door and it is springtime, you know, mating season and all that. He is not retarded, he just has "special needs" (ie a mate). When you close the shades, he doesn't see the reflection anymore and so he goes elsewhere to look for a mate. He is just a little stupid-not retarded. They have such tiny little brains anyway and he is bashing what he has, senseless, on your glass door.Shirley in Arkansas whose three little baby robins outside her back door are getting feathers on them. I love spring.
Re: Squirt gun/Kathy
I have often imagined various ways of making pelts out of those greedy squirrels. Unfortunately, i have a weak stomach and very little violence in me.
Re: BEB spasms & 'twitching'
I've just written along reply...nd then lost it. so if you get this twice folks, i'm sorry.Anyway, thanks to all for your tea and sympaty, and for your advice also. I shall try the ice first as I don't know what emla cream is, or tylenol. Maybe we don't have it here in the UK? i thought of using one of those ice blocks thingys that you put into lunch boxes to keep frozen food cold on the way home from the shops. i could then wrap some material round it before applying it to my face.
Thanks again, Pippa the wimp.
On the subject of wimps...i say "wimps" and my husband says "whimps." which of us is correct?
Re: BEB spasms & 'twitching'
You are correct, of course. Wimps it is.
EMLA cream is just a prescription, topical numbing cream that is applied to the skin.
Tylenol is acetaminaphen which is a non-prescription pain reliever. It can also be used to lower a fever.Shirley in Arkansas
Re: BEB spasms & 'twitching'
Pippa, my husband and I have the same "wimps" "whimps" difference as you and yours. Maybe it's sort of like, "You say tom-Ay-tos, I say to-Mah-tos." Whatever works, I guess we know what the other one means.Sally in North Idaho who would like to be in bonny Scotland.
Re: BEB spasms & 'twitching'/frozen peas
oh , I forget, you can also use a large package of frozen peas, they conform well to the shape of your face. Perhaps you can store them in a little cooler. Don't be afraid to ask your doctor about aspects of eliminating pain from your injections. I'm sure they don't like inflicting it either and anxiety worsens it.
Re: BEB spasms & 'twitching'/frozen peas
Yes we used to use frozen peas at the school where I work (worked?) for reducing swelling on pupils legs etc. or black eyes where they had been knocking nine bells out of each other!
Pippa...rushing off to make husband's dinner as he has just walked in the door!
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