Re: I am interested ...
We are all sorry about your diagnosis. Ours is a deeply frustrating condition, and patience is the first thing you must learn.Botox is an extremely potent toxin and your Dr. has probably started you off with a very conservative dosage of the stuff, so the first couple of injections may be ineffective while later ones may be a great deal more useful in returning your life to normal. By all means keep your Dr. aware of your progress, and work with him to get the right doses. He may see a dozen patients without ever seeing two alike. I hope your eventual situation will be fairly close to mine, as I am getting very effective injections every 6-7 months. (Do not expect that you will ever be free of BEB: while remission does occur, it is quite rare and might be a pleasant surprise, but don't expect it.) But it took me several years of experiments with Botox dosage before we got it right. Slow? Like molasses. So keep in touch with your friends here; we have all been through what you are feeling, and many are ready to help. Cheers, --- Lynn
Re: I am interested ...
Hello Lynn,
I am so glad to have someone reply. I have been stuggling with my eyes for about 2 years before finally being diagnosed. The last 6 months have been the worst for me. I know of no one how has this and my friends and family don't quite understand what I am experiencing and how this is affecting my daily life. I think they all feel since I am still working then 'can it really be that bad?'
My Dr. had just increased by dose for my second injections and I have to say I was looking for a miracle. This is my first contact with anyone having beb and I have spent the last few hours just reading and I find myself facing harsh realities. You indicated you are getting injections every 6-7 months. That is wonderful and very encouraging! My DR said I would need to have them every 3-4 months but definately not any earlier. You also said it took several years of experiments with Botox. Ok my god.....! Are you still able to drive? I have been having diffculty with this but at times, I still drive if my eyes are not too bad.
Thank you so much for responding. I does feel good to know I am not alone with this.
ps. You signed off with 'cheers'. Are you from England?
Debbie
Re: I am interested ...
Hi, Debbie, You said,in an earlier message: >The sites he injected are the same, 5 in each eye, upper and lower lids.< Tell your Dr. that a long-perm patient has great success with a Botox injection pattern of three shots (5mu each) just above each eye BROW, about an inch apart, plus two (2.5 mu) at either end of each lid, 20 mu /eye total. This is a pattern I have been using with great success for about 6 years (out of 12 using Botox). It may not work for you -- we are each different -- but it's worth a try. I have had BEB since about 1960, been on Botox since 1990 after trying everything available in the way of drug treatments. I gave up driving and used Van Pools, public transit, and the kind graces of friends for several years. After Botox I resumed driving (even drove the Val Pool sometimes!) and only stop it near reinjection time when the spasms return. Although I live in So. Calif., I have spent a couople of weeks in Edinburgh and Glasgow, and have several Brit and Aussie friends. Cheers to all! --- Lynn
Re: I am interested ...
Hi Lynn,
Thanks for the suggestions. I will certainly talk to my DR about it.Debbie,
Re: I am interested .../Debby
Keep posting Debby and we will try and help you cope with some of the puzzling aspects of this neurological disorder. The Botox may work differently for you at times, I think Lynn has the ridght idea here in working with your doctor to find the best injection sites. Where do you live? Do you have climate changes that affect your eyes on certain days?
Re: I am interested .../Debby
Hi Kathy,
I live in Ontario so we have the nice hot humid summers which I absolutely love and cold damp winters which I detest. I haven't noticed any difference but I do plan on keep my eyes open (no pun intended) for any changes. Yesterday it was dry and cool and I was out driving and shopping most of the day. Now today, it's rained all day, cool and quite damp and my eyes are good again and I drove to work today however, I did wake up in a very 'blah' mood which lasted all day and it didn't help sleeping in this morning and being late. I don't usually feel 'blah' very often. What made it hard was, my eyes were open most of the day but couldn't find the motivation to accomplish much at work! Anyway.... tomorrows another day~~
Debbie
Re: blepharospasm
My, you've been a busy lady, posting.... I welcomed you under another post and here I am again! The botox injections are usually helpful to me (not so much this time around, but that's another story). I started at 50 units every 6 months and am now up to 90 units every 4-5 months. The side effects from the botox last 4-6 weeks before they settle down - then I can drive short, non-stressful distances, and go about my business with exceptions. I can watch tv, use a computer without looking at the moving screen, go to a non-flashy show but get shut down completely with any strobe lights at a theatre. Stress is a very strong factor in this and any other disease and we all need to do what we can to alleviate as much stress as possible in our lives - easier said than done! I wear darkglasses and hats in the winter and summer outside, half windowfilm at home to help with the sunlight and torchierre-type lighting - it all helps. I'm sure others will have lots more to say. Best wishesJune in Toronto (beb/meige)
Re: I am interested in chatting about blepharospasm
I have only recently been diagnosed in December too with blepharospasm, and had the botox once. I was so disappointed to have no reaction, but the opthalmologist told me I was expecting too much, and to think of ANY improvement as an improvement. I had to lower my sights dramatically. (No pun intended!!) He also told me that he could see an improvement as I was able to look at him now. The bright lights in his surgery did not affect me so much...so that was the "improvement" I did get with Botox, and also I could open my eyes for short periods while a passenger in a moving car for very short periods. That was an improvement too. However this "improvement" has only lasted a few weeks, not months. So I await what others say about the success of Botox with interest too. What improvemnts did you get, Debbie, and for how long? And how much Botox and what sites?
I seem to be gathering that others take other medications too,ie apart from Botox but I am not sure what for. I don't have Meige yet, and don't know if it happens to everybody with Bleph. I think I am starting maybe as my jaw occasionally clicks to one side. Can anyone explain that one?
So many people are depressed and I am not sure if this will come later to me, or if it is a side effect of some of the medications? I do know I feel tired much more easily than I used to, but then again, could that be my age...54? Are you in that age group Debbie? Taking Valium many years ago DID make me depressed as I was too woozy to do everything that I wanted. So many adaptations to have to make these days. Too many questions too...eg is it because we are so vulnerable,dependent, and frustrated that makes Blephs depressed....or is it part of the disease anyway...or would we be depressed anyway because of what is happening in our individual lives..or is it the drugs? What I want to know is, can I work now to keep my mental attitude as good as possible, or am I fighting a losing battle? Will I eventually be worn down?
Pippa, feeling a bit anxious today about the future.
Re: I am interested in chatting about blepharospasm
Hello,
I received my first injections in Januray and was nieve to think the eyes would open and all would be normal again.That was my first mistake. My eyes opened after only 4 days and I began driving right away. Then a week later my eyes began to close again and I had to ask for rides to work. I would outside of the city, about 40 km so getting to work is a challenge. I have had my second set of injections just this past Thursday. Again it has been the same. In 4 days my eyes opened and only hand short periods of times when they would close. I am now 10 days in and they are not too bad and I will continue driving as long as I can. After the first botox injections, I began to grimacing to keep my eyes open. My neck and ear on one side only was extremely sore. My Neurologist put me on baclefen but didn't seem to help so I did not continue with it. The soreness did go away and now after my second injections I am only grimacing a little so everyone thinks I am smiling at them. So far it is not too bad. I am 43 yrs old and to date, I have never had anything medically wrong with me so to discover I have blef has been a hugh adjustment for me.This bulletin board alone has been a great help in the last day or so.
I read that you are in Scotland. Where abouts? My parents imigrated in 1955 from Glasgow. My brother and his wife, with my father go over quite often. My daughter and I, with my father, brother and sister inlaw, was just over to visit in Aug 00, and had an absolutely wonderful time. My first visit was 83' and didn't have the desire to go back. Then suddenly after my mother past away in 97, the urge was very strong that I couldn't dismiss so my second visit was in Aug 00 taking my daughter for the first time at the age of 11. We have this arrangement going with family over there. We go over one year and they come over to Canada the following year. We alternate. It has worked out very well. We had planning on going this year but with just being diagnosed with blef, I wanted to get my head around this first before I started traveling again. My father has reached the point where he feels he is too old for the journey any more. He turned 74 this past March. My visit in 2000, took me to the Edinburgh Tatoo which was absolutely magnigicant! We travel up to Inverness and spent a week in a caravan in Nairn and toured the beautiful county side and Cawder Castle and Blair castle. While there, we took the opportunity to go to Paris for a couple of days to see the sights and went to Euro Disney for the first time which was a gift I gave to my daughter for her 12 birthday which we celeberated while we were there. I absolutely love Scotland and email my family there in between our visits. I would love to live there. The most wonderful part of the visit was being with all of my family since all I have here is my Father, an older sister and younger brother, both of which are married and have a family and a younger brother and his wife. We are all very close but no other relatives are here in Canada.
Well I guess I have rambled on for too long. Thanks for letting me bend you ear.
I am glad to have joined the group.
Debbie, feeling better about living with blef.
Re: I am interested in chatting about blepharospasm
Guess what? I am from Inverness, (originally from Glasgow) and near all those places you mentioned, Cawdor, Nairn etc. The caravan site at Nairn is a beach area that we often go to for a walk with our dog too.
If you do come to Scotlnd please let me know. I would love to meet you and your daughter. I don't know anybody either who has this.
Yes this site has saved my sanity, and I am so grateful for it to know I am not alone. I feel it has opened up a whole new "family".
Pippa
Re: I am interested in chatting about blepharospasm
Hi Pippa, I was diagnosed in '98 after searching approx 1 and 1/1 yrs for an answer to why my eyes kept closing. I thought to my self - "it has a name so there must be a cure!" Wrong. It only has "treatments" that are suppose to help. My first doses of Botox were small and approx. 2 weeks later my eyes were open for ONE day. The rest of the time was a struggle to open them. I was supspose to wait 3 months in between shots but I could make it only two and that seems to be my limit. I am at the end of my two months and I am struggling to hold them open. Actually as long as I sit still I am OK, it is when I get up and start to move about that my eyes closed down and I cannot open them. I can no longer drive. You spoke of depression and wondered if it was the meds or the BEB. I take Klonopin .25 mgs 3 times a day and the only think it does for me is I think is to relax me which with this disorder we need. For me, I think it is the BEB that causes my depression because my life is no longer the way it was. # 1 thing that I HATE about this disorder is my loss of independance. I can no longer get up and go when I want to. I have to wait till family and friends can take me and I HATE to ask others for help. I guess the thing that helps me most of all is my faith - It has made me stronger and more dependant on God instead of myself. I will survive this "thing". So glad you found us here on the BB - here you are free to he happy, sad, or what ever and we will accept you and love you as if you were an old friend. Joyce in NC/USA BEB/Meige
Re: Depression
Hi Pippa,
We're not always depressed and I think that many that are may have a history of depression even before the BEB started. I've had depression problems ever since I was a little girl. I have tried different medications for this in the past before BEB but the side-effects were always worse than the depression. I do still have bouts of depression but it is really not any worse than it ever was. Just something new to get depressed about. :-)
We all have our ups and downs with the BEB and we tend to bare our souls here on the bb from time to time as we know that others understand and will help to support us.
Out in the real world when someone comes up and says "hey, how ya doing?", you'd probably say "fine, how are you?". Well, here, we generally tell the truth whether someone asks or not. It's a good sounding board.A couple of the medications that I've tried have caused depression and I stopped them. Pippa, I don't think that you are fighting a losing battle. Your life may have to change in some ways and you may think that you have lost yourself at times but that is what we are here for. If you lose your self, you will find your way back-you will find and keep your sense of humor and your personality. You will find ways to deal with this and remain true to yourself. If you were the type to crawl into a hole and bury yourself, you wouldn't be here on this bulletin board trying to arm yourself with knowledge. Depression?-Tell it to take a hike! Shirley in Arkansas
Re: I am interested in chatting about blepharospasm
Pippa, You should definitly "work now to keep my mental attitude as good as possible." Don't accept depression as a given, it could be that you will never experience it. There are many causes for it, medi- cations as well as medical or personal reasons. You have a good attitude now and are searching for answers ... keep it up!Shirley had good thoughts when she said that we are truthful here, where we would probably cover up our ailments and feelings to "outsiders." My mother and grand-daughter have both been to Scotland and loved it. I was recently there in spirit with Rosamund Pilcher's "Winter Soltice." I had such a lovely time and hated to have it end. Sally in North Idaho BEB/Meige
Re: I am interested in chatting about blepharospasm
Sally, I am so glad you mentioned Rosamund Pilcher's bok, Winter Soltice. On a "good" day I can read for limited periods and she is one of my favorite authors. She would weave a story with all those multi-layered characters and you would just hate to finish the book because you wanted to know more about them. Her characters were so real. Just like us on the BB, we are a bunch of multi-layered characters and we can glean a little bit about each person with each post that they write. I think someone with a very good imigination could write a very good book about the "characters" here on the BB. Joyce in NC who's imigination is going wild this morning.
Re: I am interested in chatting about blepharospasm
Thanks Shirley and Sally. I am trying to keep from going down into depression...been there many, many years ago...didn't like it...and I am NOT going back there if I can possibly help it.
I have had a day of coincidences. I was telling my friend about a book I was reading called "Life Makeovers" by Cheryl Richardson and about a part where a question was asked about what quality one intended to improve on in the coming week. I had said I wanted to be proactive instead of reactive. My friend told me about her way of doing that..ie by timetabling her life activities and having them come up on her computer screen as memos when she switched on. I tried to do this on my computer but didn't have the same program as my friend did. But while looking for it we found another better program called Microsoft Schedule + (I am on Windows 98) and it has uplifting thoughts and suggestions and quotations and questions to help one sort out priorities in life...as well as having timetabling. So when I get time ;)) I will play with that!
Anyway, I am glad that we CAN air our worries and have a moan in this site. It is a safety valve for us all. Someone said here, "I may have a pain, but I don't need to be a pain!" I am trying not to bore my family and friends but I do need to do it somewhere! So this site is wonderful.
Pippa..grateful!
Re: I am interested in chatting about blepharospasm/Pippa
Pippa, if you can educate your family and friends on the limitations this disorder imposes on you, and they care, that would be a good thing to overcome to overcome any mental stress. Sometimes people only care for a short time, they have to understand this a long term condition.
Re: I am interested in chatting about blepharospasm
I also would like to extend my heartfelt welcome to you, Debbie, and to everyone else who is new to the bulletin board. Although I am relatively new to the board as well, I've already learned a great deal about everything even remotely related to this disorder that we all share.I have been with one neurologist since I was diagnosed with BEF ten years ago and have Botox injections every 3 months. Since we always have question/answer exchanges with regard to my symptoms, I leave decisions about btx doses up to him, trusting that he knows best how many units I should receive (wouldn't know the difference anyway). Botox has always helped me to reduce spasm activity; I sure wouldn't want to be without them.
Although my eyes still spasm from time to time, sometimes a lot, they have become tolerable with Botox. Other than that, I haven't gone to bed for years now without prior extensive breathing exercises that almost always relax me to the point where I can hope for spasms-free sleep. If they once start, only a sedative helps me to fall asleep.
Dark glasses have become a blessing. I wear them as a passenger in the car, in church, outdoors almost all the time and everywhere else where excessive light would bother me. Sure, people look and wonder but who cares. If I want to wear them, I do just that - whenever and whereever I want and need to to feel comfortable.
There is so much one learns, as time passes, about what helps us individually to cope with this unexplainable disorder. Having watched interviews with Michael Fox on T.V., one can only hope that we also will, eventually, benefit from whatever research in the field of Parkinson's disease may discover. If someone with Michael's popularity suffered from dystonia, it sure would help to make this disorder better known to the public, more awareness of it being something we are very much in need of. Best wishes to everyone and "keep your chins up". It can only get better. Gisela - in Canada's beautiful B.C.
Re: I am interested in chatting with someone about .......
Hi Debbie.
I was diagnosed last September after 12 months of wondering what was happening, my doctor had never heard of it. Hypnotherapy and acupuncture didn't work, I was so relieved to get a diagnosis. Like you I hoped that the botox injections would work straight away. I have just had my second set and after my doctor increased the dose they have had a much better effect than the first set. I can drive on good days when the sun is not too bright. Has you doctor mentioned increasing the dose or changing the sites?I am from Coventry in the U.K. Do you live here 'across the pond' too?
Wonder if we are related?
tricia campbell!
Re: I am interested in chatting with someone about .......
Hello Tricia,
My neurologist increased my second dose from 25 to 50 but so far the results are not different really from the first. The sites he injected are the same, 5 in each eye, upper and lower lids. He is really quite good. I have very little bruising and no swelling at all.Absolutely no discomfort with the injections at all. I hate needles so I never though i would find myself looking forward to getting the needles!!I am from across the pond but in Canada however all of my family come from Glasgow. My mother and father immigrated in 1955 with my older sister and have loved it here. I was just telling Pippa of my journey to Scotland to visit the 'home land' in Aug of 2000, I had a wonderful time. I hope to go back again next year with my daughter, brother and his wife. I love Scotland and can't wait to get back.
When I was there in 2000, a large group of us when to the Ediburgh Tatoo and that was an amazing thing to see. I love the pipe bands!
We also traveled to Nairn for a week and toured Cawder and Blair Castle and then went to Paris for few days to see the sights. The Louvre was grand and seeing the Mona Lisa, a once in a life time experience for all of us especially for my daughter. Loads of pics were taken and
I look at them often.
Nice to hear from you.
Debbie
Re: I am interested in chatting with someone about .......
Ask how many units of botox you are getting. I got 25 my first visit and 100 the second. It wears off before the 3 month period is up so I take klonopin which helps some in blocking the spasms but after 6 weeks, I could tell the klonopin was depressing me. It is listed as one of the side effects so now I also take zoloft for the depression. Hate taking pills. Flourescent lights make it wors for me and so does aspartame which is found in almost every sugar free product including diet drinks and equal. Other people find other things are triggers.
Please write to Benign Essential Blepharospasm Researc Foundation, Inc. They will sen you a bunch of free literature that you can understand and usually names of contacts of people who live near you and there phone number. Ann Doyle
Re: I am interested in chatting with someone about .......
Hi Ann,
Nice to meet you.
My first botox injections was 25 and the second just administered on Thursday was 50. My neurologist said he didn't want to increase the dose too much incase is was too high and then the results would make the eye muscles far to weak so he is increasing in increments. From my injections on Thurs. my eyes opened 4 days later, just like the first and I am still grimacing however still able to keep them open and functions somewhat normally. I think part of my problem was not using atifical tears as often as I should so last night and today I have been using them pretty regularly and today has been a pretty productive day for me. I have been driving and gone shopping for books with my daugher. I even ventured shopping in the mall with my daughter to pick up some things I've been wanting to get for some time now. Grocery shopping was even done before I decided I had better get home.
So far the results have been good with just the injections.
Questions????
Even though it is sunny and my eyes are sensitive to the light, I do prefer to go out because I can wear my glasses all the time, even in the shopping mall however, when the day is cloudy, I still like to wear them so people are not able to see my eyes when they close but because there is no sun, I look rather ridiculous. Any thoughts or comments on what everyone else handles this?
ps. If I chew gum, it seem to help with keeping my eyes open. Anyone found this?
Thanks,
Debbie
Re: Dark glasses
Hi Debbie, If I have not already welcomed you to the BB, then here is a big welcome hug.I'm glad to hear that Botox is working fairly well for you. That is encouraging. I often wear dark glasses when they actually do no good, just so people won't see my eyes doing their tricks. I figure what other people think about it is their problem. Let them wonder if I'm a movie star or underworld character. Sally in North Idaho
Re: Dark glasses
Re: Dark glasses/Sally
A shady underworld character? Sally you are too funny. It's odd , I used to always be distrustful of those who always wore dark glasses , thinking they had something to hide, and now I find myself having to wear them almost all of the time. Maybe they think the same thing of me.
Re: Dark glasses
I've worn dark glasses so long I don't think twice about it - way before BEB. Every once in a while someone will kid me about it, but what others think of me is the least of my problems. We all have our quirks and cope the best we can.
Re: I am interested in chatting with someone about .......
Yes, I usually chew gum when i take a walk. It's good that you are using those teardops, it is very important to keep those eyes moisturized while the botox takes effect! You are experiencing side effects of your injections which explains why they are opening and closing, and perhaps the grimacing in the struggle to get your eyes open. The side effects usually wear off in a couple of weeks. Dark glasses help a lot of us with the light sensitivity, during this period or at other times as well.
--modified by Kathy in Atlanta at Mon, Apr 08, 2002, 05:48:15
chewing gum
Kathy - walking and chewing gum at the same time! I'm impressed.
Re: chewing gum
Virginia, you are SO bad! :-)
You've been so quiet for the last few days that I thought that you might have gotten trapped (or Carl accidently left you while your eyes were closed)in a botanical garden somewhere or even stuck in the mud in your yard while planting pansies but you have probably just been out there lurking and waiting for an opportune moment to jump in. :-)
And people wonder why I pick on you.
Re: Welcome Debbie
Hi Debbie, just wanted to welcome you to the bulletin board.
I'm 50 and have had Blepharospasm for about 3 years. BOTOX has never worked very well for me. It does stop the really tight squeezing but I still have trouble getting my eyes to open (Apraxia). I've tried 4 different doctors for my BOTOX and am still working at getting the dosage and sites right. I've also had surgery on my upper lids-the upper limited myectomy that gave me some improvement.
I still cannot drive and am unable to work.
I believe that many people do well with BOTOX injections and can go on about their lives in a fairly normal fashion for at least part of the time. Probably on this bulletin board you will see more people that the general "standard" treatments are not working well for them, although that is not true of all.
It does take time to get dosage and sites right for each individual. It is of utmost importance that you have a doctor that you can work with and that is open to suggestions-one that you can talk to. He or she must be able to look at you and where your spasms or squeezing is coming from and know where the injections need to be placed. Everyone is different and injections have to be tailored to the individual.
Keep a record of the sites that are injected and the amount of BOTOX that you are given. Being able to give your doctor feedback is very important in adjusting the sites.
You've gotten some good suggestions from others. Keep reading and you will learn loads.
Besides the preservative free eye drops during the day, you might also use an eye ointment at night and wear a sleep mask.
Again, welcome to the bulletin board.Shirley in Arkansas with BEB/Apraxia
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