lagophthalmos
Leave it to you to put a name to a condition we discuss here frequently. I didn't know what to call it - now I do. I guess mine is pretty much permanent (but not dramatic) since the surgery, but gets worse after Botox. I didn't think it showed. Good thing I've gotten over being self-conscious about this disorder.Virginia in AL - I probably would have told him "I feel weird." Yes, Bob, you have to have a sense of humor about this.
Re: lagophthalmos
what is lagophthalmos? is it something i have that i now have to know whow to pronounce?
Re: As others see us
I don't know what lagophthalmos is but my "eyeballs roll around", or so I've been told. I never even knew it was happening but sometimes people are nice enough to call it to your attention. Just recently I took my sunglasses off at a night soccer game when the sun went down and a players mom said "what was that look for?" I asked her what she meant and she said I was rolling my eyes at the other team. I told her I had a neurological disorder and she said "sorry" and that was the end of that. I do find I am very self conscious now that I know that my eyes do that. I saw myself on video when my 2nd daughter was born a few years ago and erased it because I looked like I was on drugs.Kelly in Dallas
Re: As others see us
Hi Kelly. Lagophthalmos means a defective closure of the lids. I had to look it up. That one is not in my limited vocabulary. It is nice to know, though.I think that my eyes do some moving or rolling around, also. I have decided that they do that when I am struggling to get or keep my eyes open. I think that I am more self conscious about the little noises that I make than the way that my eyes look. I have also noticed that I seem to always be exhaling and have to think about inhaling when I'm breathing. When inhaling, I seem to do so very briefly and shallowly and then have a long expiratory phase and almost have to remember to breathe in. Sort of weird. Shirley in Arkansas
Re: breathing
That is interesting Shirley. I also go through spells when I seem to have to remember to breathe - something which is supposed to be unconscious. It is indeed a strange sensation. I have always felt that it was somehow related to the blepharospasm but I have never seen anything written about it. I recently had a sleep lab test for sleep disorder/RLS (you know, where they send to bed with electrodes attached from head to foot, tubes up your nose and a tube in your mouth, and then they seem surprised in the morning when you say you did not sleep well). Anyway, apparently I do not have sleep apnea (where you wake up because you stop breathing). We should try to remember to bring it up in the "Ask the Doctors" session next year - especially if others also report it.
Re: breathing
Seems as though we are similarly afflicted. The breathing thing is something that has started since the BEB. I also never really thought much about my breathing until this started happening. I just seem to notice that I'm sort of holding my breath or just slowly exhaling and then decide I need to take a real deep breath.I've also had one of those tests done that you are talking about. I didn't get to have the tubes up the nose or in the mouth, though. Should I feel slighted? :-) Just the electrodes attached to the scalp. Isn't it "interesting" how much of your scalp that they have to remove (sand down) in order to get a good connection with the electrodes? Mine was done some 8 years or so ago as I was having some funny sensations that they felt might be some sort of petit mal seizure. I got to wear those little electrodes for over a week. I never had the "funny sensation" while I was in there, though so the tests all came back normal. Got a lot of needlework done. I'll print the posts out about it and stick it in a file for next years conference or I'll forget. Drugs, you know. So, are you coming to next year's conference? I'm working on people early this year-not that I need to work on you about this. Shirley in Arkansas
Re: breathing
I have the same problem, catch myself holding my breath and have to consciously remind myself to breathe. Have been doing this for a few years, but never associated it with BEB, but who knows?Christel in Ca. where it's raining, as much as I've been clamoring for rain, I didn't need it this week, as we are in the middle of getting a new roof.
Re: sleep test
This was my second sleep test. For the first one, three or four years ago, I did not have the nose or mouth tubes either so it is probably a new innovation. The first one had confirmed that I had a sleep disorder. The second was prompted by my having severe whole body twitches (myoclonic jerks) at one minute intervals one night starting an hour after I went to bed. Turned out to be related to coming off Mirapex (pramipexole) which I was taking for RLS. Interesting thing is that this effect is not mentioned even in the detailed drug info and I was reducing the dose more slowly than was considered necessary. Definitely the most dramatic drug side effect I have ever had.Re conference attendance - maybe. Don wants me to talk about the Internet activities.
Re: sleep test
Don has an excellent idea. It would be great if you would talk about what the internet has to offer to help us at the next conference. You need to turn that maybe into a "sure thing". It is important. It needs to be brought up and talked about every year.My hubby has also been having difficulty with what you describe in your post with the whole body jerks. It occurs fairly soon after he goes to sleep in the evenings and may last as long as an hour occurring at sometimes 45-60 second intervals. It doesn't usually fully waken him but it does me. In fact, he was not even aware that it was happening. It started after he changed a medication that he was taking. I finally made him go to the doctor and we have switched medications and it has stopped. I think that he has RLS and this medication just made it worse. The doctor didn't agree with me but his symptoms are very similar to all that I have read about it. I don't think that his doctor and I had read the same information, though. Shirley in Arkansas who thinks that Bob needs to go to next year's conference and give the straight scoop on the internet info.
Halloween ..
We could go Trick-or-Treating as myoclonic jerks. BOooooooo-I know, that was a bad one :) JB
Re: Halloween ..
That was bad Judy but I'm game. I cannot believe all the kids that are coming around. We have very few kids in our neighborhood. I wonder where they are all coming from? I guess that they feel that our neighborhood is a safe place and it usually is. Hope that it stays that way. I'm glad that I bought as much candy as I did. Roy is sad, though. He thought that we wouldn't have many kids this year and he would have lots of candy.Too bad. Shirley
Re: Halloween ..
Boo We only had 5 come to our door. House is off the street a little & I'm sure the kids went to neighborhoods where the houses were closer together, etc. Anyway, we had a nice evening, teaching just 4 folks how to improve their bridge game. I've quit playing but can still teach.
Joann in Ark, who can't believe it's already Nov 1.
Re: Halloween ..
Joann, we must have gotten your kids, too. There were actually a couple of wagons that people were pulling with trucks (as in hay ride) that were full of kids. They stopped in the neighborhood and just went from house to house. There also were vans that had large numbers of kids. We occasionally have had car loads of kids come in and trick or treat but nothing like it was tonight. I was really surprised. I really didn't expect many kids this year. The governor had even announced on the news that it would be best if the kids did not go trick or treating this year and maybe had private parties. I think that all the "private parties" showed up at my house.I'm glad that you had a nice evening teaching bridge.
How was the Grand Canyon? I think it was you that was going. Shirley in Arkansas
Re: Halloween ..
You must have had the same people I had last year. I ran out of candy and like Roy was really disappointed to have none left for myself last year. This year I bought twice as much and I had about a third of the kids I had last year..........so tell Roy I'll save him some of my candy. My granddaughter really filled her bag up here in the neighborhood. Everyone was being very generous because there weren't as many kids as usual. Then she came to grandma's and really stocked up for the next several months. I'll have to hide the rest or we'll both be hyper.
Re: Halloween ..
i got miniature baby pumpkins this year and some candy for my trickle of treaters. they now come in white and orange . i think i'll do this every year as they last a long time and are very cute. each one is different and they look like little sculptures.
Re: Halloween ..
Shirley, we had a great Halloween. Thank heavens we bought extra candy as we almost ran out. We had twelve bags and a few of them were the real large ones. I estimate that we had in excess of 120 kids which is quite a few for a new development. I think a lot had to do with the decorating that we all do. My house is fairly large and sits on a hill. I put pumpkin lights in all 22 Windows in the front and had all the Window boxes decorated and lit. I had pumpkins everywhere and sinse I have speakers on my veranda, I piped spooky music all night outside. It was quite the scene. Unfortunately or fortunately, it started raining right at 6:00Pm when trick or treat officially started. It was supposed to end at eight but I had my last spook come in at around 8:45. It was a person from my old neighborhood who sust had to come to see if I still did crazy things even though I moved. All in all, we had a great time as I just love kids. I cannot wait to start the Christmas decorations which will be as soon as I get a warm day. I just have to be careful on the ladders as I sure don't need a repeat of last year. Oh well, long winded as usual. Talk to you soon......Alan
Re: Halloween ..
Gee Alan, I wish that I could have been there. Not only are you Santa but also the Great Pumpkin. I sure would have liked to have seen your place. No wonder you have so many kids come around. You never cease to amaze me. I'm glad that you had a good time.
Now get started on Christmas but do stay off the ladders.Shirley in Arkansas
Re: Halloween ..
Hi Alan ... Sure wish I lived in your neighborhood! Sounds friendly and fun and colorful. Keep up your efforts to bring smiles; we need all those we can get in this world.Sally in North Idaho
Re: Halloween ../alan
really! it makes me feel better just reading about it.
Re: Halloween ..
It really is a great neighborhood. There are 53 houses in "Brookhollow" where I live and most have young children even though it is a pretty high end (price wise) development. This is one of the reasons my wife and I moved here (the children, not the price). We love children and could not see (for us anyway) living in a place that only had adults. Everyone is so friendly and we know every single person in the development and all their kids. Last Saturday evening, we had a neighborhood party at my K of C hall and all but 3 couples showed up. We used to have it annually in an empty lot in the development but they have all bueen built on now. It is also great for our Grandkids as the neighbors love to comeover and play with them. We have what I call the "pink room" which if you saw it would know it was meant only for girls. WE have three granddaughters (no boys). There are more toys in that room than I think there are at Toys r Us. I kid my wife about what we will do if we have a Grandson and she says I will just have to give up one of my play rooms. Oh well. Seriously though, I think the kids help keep my mind off of negative things even though it is tough at times. They all know my condition and always ask me if my eyes feel good today or not.
Re: Halloween ..
I say we all come to your house next Halloween and before we leave we willl help you get down the Christmas decorations so you won't fall. Please be careful and don't do it alone, ok?
Re: Halloween ..
Sounds like a good idea to me. The only thing is that you will have to stay over for Thanksgiving dinner. That is the only problem today. It seems that Thanksgiving gets forgotten and is one of the nicest Holidays when families get together without the pressures of balancing buying gifts, going to Christmas parties, wrapping gifts and alla that goes with it.I must be a glutton for punishment. I just came from a meeting and volunteered to run the local Santa fund in our town. Several of the key people who had done it previously, have retired and the whole project was on the verge of being dropped. I think that I mentioned that I Grand Knight of the local Knights of Columber in Salem where I live and I think this would be a great community project for us. It involves handling the toys for tots program plus the Santa fund. WE will have to buy all the toys and Christmas baskets and clothing for about 300 kids and 200 Seniors in dire need of help. My doctor keeps telling me that I have to rest, but how can one do so when there are so many others who need help and are far worse off than we. Oh well Delaine, long winded again. Seriously though, if you are ever up in this neck of the woods, give a call. We have plenty of room for you to stay and you can help decorate.....Alan
Re: Halloween .& a Blue Moon
I bought candy for 100, knowing that my sweet-toothed husband would attack it way before Halloween, then I replaced some more yesterday. We had 10 kids. Guess they all went to North Little Rock!! Jerry will be in Seventh Heaven with all these goodies left over. He is skinny as a whisk broom (he's short) but I still don't like for him to eat nothing but candy.Just returned from doing my annual bit at the little kids' party downtown. We didn't have nearly as many as usual there this year either. Other places had things going on. While at the party, one woman came over and was visiting with me and (as today is one of the increasingly frequent days when my voice is very crackly and almost non-existent at times) she asked if I had a cold. I replied, "No, I am losing my voice as another effect of the neurological disorder which causes my eyes to close." Nearly everyone in the immediate community is aware of that by now. Her reply: "You know, an awful lot of people would be better off if they didn't have a voice." I said that must include me. Don't quite know what she meant. Oh well. She's a very out-spoken woman and has definite opinions on everything. The Blue Moon is beautiful here tonight. The drizzle and clouds cleared up and the sky is bright and clear, a cold wind. Just what a Halloween should be. Sally in North Idaho who was out admiring the moon. Now I did not say, mooning.
Re: Halloween .& a Blue Moon
Sally, she was probably talking of others and not you. Possibly even herself. Since she is so outspoken, she may not want any competition.I really got tickled at the thought of you mooning somebody. That would give the trick or treaters a thrill. You'd be the talk of the town and your mother would never get over it. Shirley in Arkansas where the full moon has a hazy glow all around.
Re: Halloween .& a Blue Moon/sally
yes , sally that is really quite a visual! they could put it in the local history log. the night sally......
Re: sleep test
Hi Bob,What about the internet activities? Just curious. Did you ever figure out the problem with Netscape 6.1 and the chat room? Dee in soggy, wet Oregon
Re: breathing
My breathing used to be exactly the way you described it.
Shirley, can you describe your "funny sensation"?
I used to get what I call "freeze".
It felt as if my brain would freeze, I couldn't think,
and sort of like my face couldn't change expressions.
I am not good at explaining.You can try cutting back 1/2mg. on the Klonopin to help
with the memory. I did that with my Lorazapam.
Mindy in NY
Re: breathing
Mindy the strange sensation that I would get is hard to describe. It felt like I was aware of my surroundings but that I wasn't really there. I could be talking to someone at work and would hear myself and what the other person was saying but I felt detached and like I was listening in on the conversation. Things even sounded a little strange-kind of echoing. I could function and move and talk and no one would know that this was happening but it would really freak me out. It occurred quite often for a period of time and I saw several doctors about it and finally had the EEG testing done where they monitored and watched me in the sleep study lab for over a week. It never occurred during this time. Results of tests were all normal. I even had brain activity. :-)
I took a couple of different types of anti-seizure drugs-they didn't help. It finally just went away and the cause or what it was, was never determined. It was just classified as a variant of a petit mal seizure just by the history of the symptoms that I described to them. Every once in a great grand while it still occurs. Another flaw that I have---You people know all my secrets! Oh, about me cutting back 1/2 mg on my Klonopin. Dear Mindy that would leave me with none. :-) I take a 1/4 mg. or .25mg twice a day for a grand total of .5 mg or 1/2 mg per day. Please don't take all my Klonopin away. :-( They are 1 mg tablets that I break into fourths. Surely Shirley in Arkansas where we are having more Halloween trick or treaters than we ever had.
Re: breathing
Dear Shirley,
I hear you. Mine is 1/2mg.per day, also.
I try my best to help you, I really do :-)
Mindy in NY
Re: breathing
These descriptions of "telling myself to breathe" fit me to a T. I have asked the dr. about it, but he doesn't have an answer. I think I am developing dysphonia; maybe that has something to do with it. I DO have sleep apnea, and wear a "C-PAP" every night, which is a great help for when I'm sleeping, but when I'm awake, the breathing thing is present, so I don't think there's a connection there. Or maybe it's the meds..... Mary
Re: breathing
I note the following on page 14 of the November/December 2001 newsletter.Q. Is there a connection between sleep apnea and dystonia? A. No, although some patients have breathing troubles when they are awake. I wonder if the doctor is referring to the same thing we are talking about (having to think about breathing) or something more severe such as might affect someone who had dystonia affecting their torso.
Re: breathing
Some others have complained of breathing difficulties but seemingly in a more pronounced way. I'm wondering if the breathing difficulties or the minimal things that I have noticed are just a milder form or degree of what the others have been talking about. Virginia and Joanne M. or anybody else, does this sound similar to your breathing symptoms, but in a milder form?Shirley in AR.
Re: breathing
I do notice the same things you have mentioned. It may be that it is a milder form of the breathing problems that really bother me.Virginia in AL
Re: breathing
Probably so but in lesser degrees as you mention, Shirley. I'm learning that the medical community does not have a handle on the
breathing irregularities. Probably partly because it is difficult
to inject in these areas. From what I have gathered from this bb and talks with Virginia and others who are afflicted with this, it's kind of a guessing game as to where the spasms are actually taking place. I don't think mine is diaphragmatic as first diagnosed. There seems to be some spasming in the throat and neck area and sometimes it occurs with the grimacing. My new neuro will be injecting a bit more botox in the outer neck muscles for my Dec. 7 visit, so I'll let you know how
that goes and if it makes any difference. The meds seem to be the only current solution to get some relief from it.Wanted to mention I am leaving Sat. for a 10-day trip to NY to visit with my weary firefighter brother who finally got some well-deserved time off, sister in law and parents in NJ. The family is having an 85th birthday gathering for my aunt so I am looking forward to mingling with them once again. My botox is starting to wear off a bit but I won't be doing any driving. I'm hoping to log on a few times from back there. Joanne M. San Diego, CA
Re: breathing
Thanks Virginia and Joanne for responding. I know that both of you have much more difficulty with the breathing than I do. Mine is certainly a minimal thing and that is not the case for either of you.
The breathing thing that I have noticed with me is not a spasm (or could be an extremely mild one) but more an irregularity of the breathing pattern where I seem to simply "forget" to breathe or I just keep breathing out until I "notice" that I need to take a deep breath in. And some minor "noise making" symptoms that seem to be related to the breathing.Do enjoy your trip, Joanne, and I'm so glad that your brother is able to take some time off and hopefully get some rest. Check in with us from New Jersey. Shirley in Arkansas wishing Joanne a safe trip.
Re: breathing
Joanne, have a safe trip and enjoy the visit with your family.Christel in Ca.
Re: breathing
I guess I've been fortunate. I've had only one real breathing problem & that was from stress I'm sure (Playing bridge, which I've hated to give up completely).I do find myself taking deeper breaths at times& then breathing out thru my mouth. My last botox was Oct 4 & the neurologist increased the dosage, & I'm very pleased. No spasms yet. I do have apraxia when stressed out however.
Joann in Ark.
Re: breathing
when my spasms are really intense, i find myself holding my breath. Then i remember mindy's suggestion to breathe into them, and that really seems to help.it is very tiring if you do it too long however.
Re: As others see us
The rolling around may be what they call "square wave jerks". The researchers in Amsterdam said I had that (maybe even "macro square wave jerks") and wanted me to come back a second time so that they could study it. I like to do my bit for research but that was getting a bit pricey.Sheesh - bad enough to have the younger generation think you are a square without the doctor telling you that you are a jerk, and maybe even a big jerk
Re: Square wave jerks?
Hey Bob, Do tell us more about this. I'm not at all familiar with this. Spill. You can't just throw out something like that and leave us hanging. We are a curious group here.Shirley in Arkansas who doesn't think that Bob is a jerk or square but knows that he is tall.
Re: Square wave jerks?
This was seven years ago. At the time, I did a literature search and got reprints of a number of papers. Looking at them again just now brought back the memory that the papers did not enlighten me much beyond the fact that abnormal ocular movements (one paper listed 20 different types) are frequently associated with blepharospasm. The following comes from a paper by Bob Daroff:"Macro square-wave jerks are usually larger-amplitude square-wave jerks which are fixation dependent and also have a frequency of approximately 2 Hz. Both eyes suddenly and conjugately move off target with a saccade. After a latent period of approximately 80 msec a non-visualy-evoked reflex saccade brings them back on target." FYI, saccade: a small rapid jerky movement of the eye especially as it jumps from fixation on one point to another (as in reading). Is that enough, Shirley or would you like me to list the other 18 types of abnormal movement, or quote Daroff's description of how to distinguish macro square-wave jerks from macro saccadic oscillations? As abnormal eye movements is an interesting topic (in light of the fact that a number of us experience it) and as Daroff did quite a bit of work on the subject at one time, I am going to suggest he consider talking about it at next year's conference.
Re: Square wave jerks?
Thanks Bob. (I think) I did understand the part about abnormal ocular movements being frequently associated with Blepharospasm. After that, my eyes squeezed closed when I desperately attempted to figure out how to pronounce "saccade" correctly. I'm sure that Virginia would know right off the top of her head. I do wonder how saccade differs from nystagmus?
I don't feel that there will be a need for you to go into the other 18 types or at least I don't feel the need. Someone else may. :-)Seriously, though, the abnormal eye movements is interesting and if Dr.Daroff uses "visuals" I might even be able to grasp the main concept. You better be there, though, if he does discuss it, because if I don't understand something, I'm going to come look you up for an explanation. Shirley in Arkansas
Re: Square wave jerks?
Main Entry: sac.cade
Pronunciation: sa-'käd
Function: noun
Etymology: French, twitch, jerk, from Middle French, from saquer to pull, draw
Date: 1938
: a small rapid jerky movement of the eye especially as it jumps from fixation on one point to another (as in reading)
- sac.cad.ic /-'k@-dik/ adjectiveMain Entry: nys.tag.mus
Pronunciation: nis-'tag-m&s
Function: noun
Etymology: New Latin, from Greek nystagmos drowsiness, from nystazein to doze; probably akin to Lithuanian snusti to doze
Date: 1822
: a rapid involuntary oscillation of the eyeballs (as from dizziness)
- nys.tag.mic /-mik/ adjective
Related link: On-line dictionaries
Dr. Daroff & visuals
He's really good at visuals. But seeing the eye movements may be a challenge. We'd better warn him ahead of time to work that out.We can all line up and let him tell us what our eyes are doing (other than closing). Maybe even have a contest to see whose eyes are doing the most of these 20 movements on the list. If we think people's eyes glaze over when we tell them about BEB, just think what knowing these terms for our eye movements will do.
Re: Square wave jerks?
My eyeballs roll around and sometimes jerk. I think it is most prevalent when the eyes are trying very hard to open and then right after they do open. I've noticed this for some time and last week when I had my annual complete eye exam, two of the technicians, plus the ophthalmologist commented on it. In fact, they said they couldn't get accuracy on one of their tests because my eyes were rolling. It hurts a little bit, too, when they roll. Agree?Sally in North Idaho where it is a dark and stormy night and I had a terrifying drive trying to get home, after 20 miles, found a pay phone and called husband and son to come get me before I killed myself and half a dozen others.
Re: Square wave jerks?
Does this mean that we are not only "square," but are also "jerks?"Sally in North Idaho
Re: Square wave jerks?/bob
this is interesting. you are describing exactly what my eyes did beore i got my cable modem. as i watched the screen slowwly being painted , my eyes had an extremely uncomfortable sensation of "jumping and bumping". it was related to too much computer usage in my case with a slow connection. my gosh am i glad i don't have that anymore!
Re: Square wave jerks?
In response to my suggestion that there be a presentation on abnormal eye movements at next year's BEBRF Conference, I received the following from Dr. Daroff which he gave me permission to quote.The problem with studying eye movements in BEB is keeping the eyes open long enough to get suitable quantitative information. I have never been particularly impressed with eye movement abnormalities in BEB. SWJ is very nonspecific, and occurs in every single central nervous system disorder, particularly those involving the basal ganglia.
In summary, the eye movement abnormalities in BEB are merely a trivial
aside, and not symptomatic. You can certainly quote me on that.
The topic would not be sufficiently substantive to warrant presentation at the meeting, although I'd be pleased to answer questions about it in the Sunday Patient Session.
Re: Square wave jerks?
Thanks Bob. I think that I agree with what Dr. Daroff has said and that it is just a quirky trivial aside. But, an interesting one.Shirley in AR.
Re: Square wave jerks?
Re: As others see us
This would be a good topic of conversation for the next conference - I actually think I will be able to attend (hubby and kids in tow!) I noticed on the video several years ago that mine "rolled around" right after I got my eyes back open and it would take them a second to refocus. An "opth in training" commented on it several years ago when I was getting my shots with my current doctor and also the girls' pediatrition asked me about it. I had an appendectomy when Cory was almost 1 and a few days later she got sick with her usual ear infections and the flu so I am at the doctor with her running a 105 temp and not feeling too hot myself. He asked me if I was on pain meds from the surgery and when I said no then he asked if I was aware that my eyes deviated. I told him about blepharospasm and now he always asks how I am. He even found out that one of his friends was one of the first doctors to give botox in New Orleans. Thanks for the info.Kelly in Dallas where my kids are sooo excited about Halloween (Cory is Glinda the good witch and Morgan is a cat)
Re: As others see us/kelly
couldn't this also be related to a slight strabismus that some of us have gotten with our injections? my eyes have looked off several times also for awhile right after them. it hasn't happened in quite awhile however, at least i don't think it has because i'm not looking at myself as "others see us".
Re: As others see us/kelly
I guess it could be but mine seems to be permanent. My eyes fly off to the outside and sometimes roll back in my head. If no one had pointed this out to me I never would have known. I do notice that when my botox is in full force and my eyes don't close, even when I can feel the muscle trying to squeeze them shut, I still can't see for a split second. My guess it is because my eyes have gone "somewhere else" so that even when my eyes appear open I'm still have seconds of blindness.Kelly in Dallas where a friend is driving me to the doctor and taking both of our 3 year olds. She is going to watch them in the lobby. I'm lucky to have a friend like her!
Re: As others see us/kelly
geez louise! do you think this happens to alot of us without us knowing about it??
Re: As others see us
Think about it -- you can't see yourself blink by looking in a mirror. The only way you can learn what is going on, by yourself, is to videotape yourself in spasms. Yes, it's helpful if someone else watches and tells you what s/he sees, but that still doesn't cut it. You really need the videotape.--- Lynn
Re: As others see us/lynn
lynn. i've had other people see me with my eyes squeezed shut in agony. that's enough for me.what i'm wondering about are these periods of blindness that i have; if my eyes are doing something strange other than just the eyelids closing. this relates to the saccade thing that bob was talking about. something triggered or precipitated this rolling eye movement thing, ( slow computer screen), that actually some while ago i described and it lasted for a long time before i could get it to stop. so if the eyes were doing something strange inside...how come not many others are posting??
Re: As others see us/lynn
My eyes roll and I can't see then either. I asked my doctor about it one day several years ago and he said that it was a normal motion associated with blinking but since our "blinks" don't work right you can see the movement in us. When I saw the video tape when I was in the hospital in labor with Cory I almost died. My eyes would close and every time they would open my eyes would roll back in my head. I looked like I was on drugs. Personally, I would rather not know because then I become selfconsious (as if I'm not enough already).Kelly in Dallas
Re: As others see us/lynn
One of the reasons that I usually wear dark glasses in public (even in times when they don't do any good) is so others won't have to watch my eyes rolling around. I am very self-conscious about that, because I know they do that little trick ... I can feel them jerking around!! Oh, the annoyances of this "disorder."Sally in North Idaho where the rain turned to wet snow as I drove home from Spokane today. Not ready to have that!
Re: As others see us/lynn
well i'm going to wear mine more in public. there is no reason whatsoever to subject ourselves to that kind of scrutiny. howver it is very important to not make your eyes overfocus because of too much darkness as was mentioned in the last newsletter and was also the subject of a posting by a guy on this board who was wearing too dark glasses all the time which can naturally worsen light sensitivity.
Re: As others see us/lynn
Sally - I also have gone through a lot of embarrassment with this problem. The feeling that I just wanted to hide away, that everyone was staring at me. I not only suffer with Blephro, but meige as well. I try to keep active and try really hard not to focus on my problems too much. I really to believe we see ourselves as being worse that other people see us. I have a great circle of friends and family who understand this problem and accept me for who I am. Drive careful in the snow!
Re: As others see us/lynn
Hi Carol ...I also have Meige which is now affecting my voice ... some days lots worse than others, and I deal with it. Most of the time I just let people see me for what I am, but in new groups I tend to start off by wearing the glasses until I have a chance to explain what is going on and that I'm not just closing my eyes because I'm bored with their conversation! The snow flakes melted as fast as the landed. We'be been down in the 20s the past few nights, but it's clear and much too sunny. I'm waiting for evening when my eyes will be lots happier. Sally in North Idaho BEB/Meige/sciatica and a few other odds & ends
Re: As others see us
Videotaping is a great way to see what is going on and to provide feedback on Botox treatments. However, it can be a bit appalling the first time you see yourself as others do. I started getting a shot on each side of my nose after I realized that it was twitching like a rabbit's. Good thing I don't have buck teeth.
Re: As others see us
well, i'm certainly NOT going to hire someone to videotape me. when my eyes squeeze i am also in pain.
Re: As others see us
Bob, I enjoyed your post. I think that I like your perspective on this and your sense of humor. Shirley in Arkansas
Re: As others see us
I really like your attitude Bob. You're right, we all just have to count our blessings and go on.
Re: As others see us
you're writing about it is really quite funny! i'll have to read on.
|