Re: blepharospasm
Welcome to the Bulletin Board. I'm sorry you have blephorspasm, & hope you can find the right dosage of botox, etc. It's hard, especially at first, because it's such an adjustment for you & family. You'll appreciate the BB because you'll hear from others with the same problem. I've had BEB since 1997 & received my first botox in Oct 1999. It only helped me for about 7 weeks & then I'd have to wait till the 3 months were up before getting another set of botox. My condition worsened last summer so I finally made an appt for surgery, a limited myectomy, with Dr. Anderson in Salt Lake City. I am very pleased with the results. I can function normal again, that is: drive, read & watch TV. I have changed my life style some by trying to avoid stressful situations (namely playing bridge). Good luck & we pray you'll feel better soon.
Joann in Arkansas where the sun is bright.
Re: blepharospasm
Hi Joan Humphrey I'm so glad to know that there are others like me with BEB. I just started back in Nov. 2001 and saw two eye doctors they both told me it was just dry-eyes. My eyes started with a twitch on one eye and than the other. And in just a few months I wasn't able to drive any more I took risks at times. I'm a single parent with two teenagers and had never been sick before I was doing two jobs to Take care of my kids.
My mom is a BEB also but until I got sick I never knew that is was a illness that affects your life styles been independed going and coming on your own as you please. Now I have to depent on others to help. I took a leave of absence at the school where I was working as a Library-clerk. It will be hard to try to go back and give it another try I'm afraid that I won't be able to do my job well.I also work at a sales associated at Beall's at the Mall .I fell very angry at times why me I just turned 50 yrs in January.But only time will tell as to what lies ahead. Thanks for posting your reply Irene Sieger
Re: blepharospasm
Welcome to the bulletin board, Irene. I'm 50 and have had Blepharospasm for about 3 years now. It takes some time to get the injection dosages and sites just right for each individual. You will have to work with your doctor on this.
Have you contacted the Blepharospasm Foundation yet? If you haven't, you should call them or email them for information. You can find their address in the "Welcome to Newcomers" at the top of the bulletin board page. It is in Beaumont, Texas.
The yearly Blepharospasm conference will be in August in Houston this year. I saw from your profile that you are also from Texas. Maybe you would be able to come. It would be of great benefit to you.
We do understand what you are going through. Ask whatever questions you like. There is always someone here for you. You are not alone with this.Shirley in Arkansas with BEB/Apraxia
Re: blepharospasm
Hi Shirley I'm so glad to hear from others with BEB and yes I e-mail the BEB Foundation to get more information . They enclose me a package with alot of details about the illness. Until I got sick My mom has the same thing but I never knew that there was just an illness. I started in November 2001 and after seeing several Doctors it was only dry-eyes and one of the doctors said the twitching will go away they recomented gen teal drops ,genteal gel. I use the cold Compresives but at times I fell they don't help very much. I'm trying to keep a log of the good days and the not so good.After the shots I had several good days my eyes opened up I kept thinking in my mind this is all I need but after finding out I have to wait two more months before I can get the second dosage of shots. And It is very scary to know that Maybe treatment is all they have to offer. But in the mean time it will have to do. I just turned 50yrs and a single-parent of two teenagers 16 & 17yrs >Thanks for posting your reply a Friend Irene
Re: blepharospasm
Hi Irene. We're the same age and I have two sons that are 18 and 21. It is sad but also interesting that your mother also has BEB. Studies are being done now on BEB that runs in families. Any other family members have BEB or any other related disorders that you know of?
I'm glad that you received information from the foundation. That will be helpful.
Many of us also take medication in combination with the BOTOX injections. If you don't get enough relief with the injections, you might check with your doctor about oral medications that might help. Try different kinds of preservative free drops and find something that works well for you. There are many different ones on the market and some work better than others for each individual.
This is scary and it will help you to learn as much about the disorder as you can.If your teenagers like the computer, have them read the bulletin board also and they can even ask us questions. We'd be happy to talk to them, too. This effects them in a big way. Shirley in Arkansas
Re: blepharospasm
Hi Shirley I'm so glad to hear from others with BEB and yes I e-mail the BEB Foundation to get more information . They enclose me a package with alot of details about the illness. Until I got sick My mom has the same thing but I never knew that there was just an illness. I started in November 2001 and after seeing several Doctors it was only dry-eyes and one of the doctors said the twitching will go away they recomented gen teal drops ,genteal gel. I use the cold Compresives but at times I fell they don't help very much. I'm trying to keep a log of the good days and the not so good.After the shots I had several good days my eyes opened up I kept thinking in my mind this is all I need but after finding out I have to wait two more months before I can get the second dosage of shots. And It is very scary to know that Maybe treatment is all they have to offer. But in the mean time it will have to do. I just turned 50yrs and a single-parent of two teenagers 16 & 17yrs >Thanks for posting your reply a Friend Irene
Re: blepharospasm
Hello Irene,
Welcome to the BB. I am sorry to hear you BEB and we all know how you are feeling. I just joined the bb a couple of weeks ago and I am so glad I did. It helps to talk with people who understand how you are feeling and to also know what you are talking about.
I was diagnosed the beginning of January and I was quite shocked since had never heard of BEB before this day. I have only the closing of my eyes and grimacing due to trying to keep them open. I know others have it worse than I do. I had my first set of botox injections just weeks after being diagnosed and I too was disappointed because my eyes opened in 4 days which was fantastic however it only lasted 7 days before my eyes began closing again and stayed closed most of the time. I thought as soon as I had the injections my life would finally be back to normal or as it was but this was not the case. I had to stop driving again after a week and to top it off, I also had to wait 3 more months before the next injections! I felt like my world was crumbling before me and I had no control. With not being able to drive meant I again needed to find a ride to work each day and this was difficult due to working out of town and only a few people live in my city that I could hitch a ride with. Before my first injections I had been driving with friends for months and I was beginning to become depressed and a really struggling with having BEB. I have since had my second injections, March 27th and started driving again 4 days later and have been driving since, keeping my fingers crossed and praying it continues! Some days are harder to cope with than others but I am very slowly learning to adjust to the BEB life.
This is a wonderful BB and I have learned so much from some caring, compasionate people. My first realization was eye drops should be used regularly and this for me is has turned out essential. I didn't use the drops much with my first injections but the second set I certainly do. This I feel has made a great difference along with using a ointment at night and sleep with an eye mask. Relaxation is also key in helping to feel good along with relieving stress. I know that is hard to do at times.
If you want to chat off the bb feel free to email me at cmpdeb@netscape.net
If you have time, read some of the posting. They certainly helped me!
I hope you begin to feel better,
Debbie from London, Ontario where the sun is shinning and it is hot and humid today.
Re: blepharospasm
Hi Debbie I'm so glad to hear that there are other with BEB and that we can communicate about what we are going through in our daily lifes. I'm scared and at times don't know if I'll get over this illness. I have never been sick before My Mom is also a BEB and untill I got sick Never did know about just an illness. I feel very frausted having to depend on others to take you back and forth. I can't drive any more, nor watch tv I only listen to the radio sleep alot or try to rest. I was a Library-clerk at a Middle School and I took a leave of absence untill I get better. I'm a single parent of two teenagers 16 & 17yrs. I use the gentel drops and gel and use cold compresives at times. My eyes are very sensetive to the bright lights and I use dark tin glasses but still the bright sun rays hurt my eyes . I try to stay indoors alot. Thanks for posting your message Irene
Re: blepharospasm
Hi Debbie I'm so glad to hear that there are other with BEB and that we can communicate about what we are going through in our daily lifes. I'm scared and at times don't know if I'll get over this illness. I have never been sick before My Mom is also a BEB and untill I got sick Never did know about just an illness. I feel very frausted having to depend on others to take you back and forth. I can't drive any more, nor watch tv I only listen to the radio sleep alot or try to rest. I was a Library-clerk at a Middle School and I took a leave of absence untill I get better. I'm a single parent of two teenagers 16 & 17yrs. I use the gentel drops and gel and use cold compresives at times. My eyes are very sensetive to the bright lights and I use dark tin glasses but still the bright sun rays hurt my eyes . I try to stay indoors alot. Thanks for posting your message Irene
Re: blepharospasm/Irene
Welcome Irene. I've alwasy thought that a pretty name. Do your eyedrops have preservatives in them? that could further irritate your eyes and light sensitivity.Light sensitivity is also a side effect for many of us after our injections and tends to get better after a 3 week period. Most of us have to wear dark glasses , especially outside.
--modified by Kathy in Atlanta at Thu, Apr 18, 2002, 15:24:09
dark glasses
I wanted to tell you all that I tried new sunglasses this week. There is not particular brand so they better not delete this. I found them in a fashion store. The lenses are lighter than regular sunglasses, have all the proper uv protection but when you wear them inside things are not dark. They are actually pretty funky. They come in all shapes and sizes and different tint colours. I found them extremely beneficial when I was in a shopping mall with the florescent lights. Now I don't look like I need a cane!They are very reasonably priced. Around 15.00 and up for more fashionable ones. They are not very good when out in the sun. I found I needed my darkest ones.
Catherine who has so many pairs of glasses and sunglasses my husband calles them my rabbits because they are allways multplying!!!
Re: dark glasses/Catherine
Re: dark glasses/Catherine
When I go my new prescription glasses last month, I asked if they could be coated with FL-41 and she said different companies use differnt code and what did I want to block out. She listed a bunch of things. I said flourescent lights and just a light coat. They seen to work but they are even lighter that the ones I saw on the internet. Next time I'll get them doube. You can't even tell that their pink unless you are looking for it. Ann Doyld I am very pleased but would prefer funky. Ann
Re: blepharospasm
Hi Irene,Welcome to the BB where I hope you will feel at home and realize that there is a lot of support and caring going on here, along with some good times and silliness to lighten the burden. I'm sorry you have to have this disorder/disease/disgusting whatever ... but what you are experiencing is what most of us have gone through, and still do. There are times when it just gets so frustrating and difficult to deal with. What you are feeling now is a normal cycle of grief. SOMEONE ... is Delaine's "calendar" of the grief cycle still on here somewhere??? You will pass through several stages and even revert back to early ones at different times. I've been diagnosed with BEB/Meige for about three years and have Botox injections every two months (had them this morning). That is as often as my neurologist says is safe. For quite some time, they didn't do a whole lot of good. Like so many, I was hoping for an immediate "cure," and that didn't happen. It is a relief of symptoms at best. It has only been for about a year now that I can really say the dosage seems to be correct in amount and in sites of injection to give relief that is really noticeable. It takes time and patience. Just work with your doctor, keep notes of how your eyes react between sessions and pass those on to the doctor. Please feel free to ask any quesitons or make any comments. There are lots of shoulders here to lean on ... bony, pillowy, muscular, take your pick. Tell us as much about yourself and your symptoms as you would like to. Sally in North Idaho where it's cool and threatening, but hasn't rained today. I went this morning for my wrinkle-removing beauty shots. So far, so good. No bruising this time.
Re: blepharospasm
Hello, Irene,We are really sorry that you have to struggle with this condition as we have done. It's terribly frustrating and scary, especially when you think about driving a car, or even about walking down a flight of stairs, but there is help, both medical and psychological in this BB. You are fortunate to have been diagnosed quickly and accurately. Like many people here, I suffered for several years (in my case 30!) before I could find anyone to give me a correct diagnosis. Botox is an extremely potent drug, made from an extremely toxic poison, and doctors are understandly skittish about overdosing the stuff, so the first few doses you get may seem inadequate. Settling in to the right dosage level, and the most effective injection sites, is a trial-and-error process and may take as much aa a year or two to get right. So patience is your most valuable asset. Equally, stress is your worst enemy: while not actually causing the condition, stress severely agravates it, so finding ways to reduce your own stress level is important. You will also find that discovering your limits w/r/t driving etc., and adapting your life-style to them, is a struggle. We all go through it, so let's hear what you are going through. Let it all hang out! Cheers, --- Lynn
Re: blepharospasm/WELCOME
Hi Irene, welcome to the bulletin board, but so sorry to hear you have this disease. Please make sure you are using lots of preservative-free drops during the day in your eyes and use a preservative-free cream at night and cover your eyes with washable blinds. This will keep your eyes moist and stop you from getting further eye problems. Eye rests (covered with the blinds) during the day might help as well - some people use warm wash clothes over their eyes and find this helpful. Perhaps you could ask your doctor how many units of botox he is giving you (in total for the two lids) and a copy of the diagram he uses for the placement of the needles. This might be helpful in your discussion with the doctor, and us, in figuring out exactly what you might need to feel better. You can only try. I've had beb/meige for 7 years and its been trial and error. I sometimes still go through the "why me" stage and miss my independence. Still this bb is a great place to learn more and talk to the caring people on board. Keep posting, Irene, we care.June in Toronto (beb/meige)
Re: blepharospasm/WELCOME
Irene:It's not nice to have to welcome someone to this board but you will find that everyone is caring, compassionate, informative and occasionally CRAZY!!!!!.
If you are feeling up.....post. If you are feeling down......post. Any little thing you want to know but were afraid to ask .....Ask!
We have all been there and we know how you are feeling on any given day.
This is the one place where you get total understanding. Families have such a hard time understanding this disorder and therefore have very little patience sometime.
I know when I first started sharing on the bb. I felt very uncomfortable. Start by reading previous pages and you will get to know us quickly. I was scarred about actually learning about blepharospasm. I didn't want to know about what might happen in the future. How wrong I was. You will get more information here than from
any doctor. You will also be invited to more parties than you could possible manage. I think the twirling might be the start of a party!!!!! Take care Catherine in Calgary where we got more snow today!!!!!
Re: SNOW IN CALGARY?
We had 29 degrees, Catherine, yesterday - not trying to make you feel bad, just pointing out the differences in temperature in our country. "Only in Canada, eh"?:-)June in Toronto
Re: blepharospasm/WELCOME
Hi Catherine
Thanks for all your support I'm learing alot from others. And I will keep posting messages to get answers from. My Doctor is a female and seems kind of cold like they don't care. But I will have questions for her next time around . I got my first sets of shots in March 7,2002 and they were hurtfull and I was very scared but after a couple of days I was alot better. But almost a month has gone by and I'm twitching again I'm very sensitive to the bright light . And I have to wear my darkness sunglasses alot of the time. My mom and anunt are BEB also but untill I got sick I didin't know of such illness . My mom has had it for almost 12yrs and it doesn't get amy better at times. She has gone through alot and doesn't want to get her shots any more. I'm glad she is still aroung to kind of help me at times.
Irene
Re: blepharospasm/WELCOME
Hi June what kind of creams are you talking aboutso that I can try to find them here. I use the GEN-Teal-Jel and the genteal -drops and I've been using the cold compressives. But are the warmwash better and if so I'll give a try.I'll ask the Dr as to how many injections were giving to me.I've heard from others that they also take the oral medication as well. I was told by my Doctor that he Botox shots work better than the medication. I will keep posting messages to learn more about the disease. I can't believe when I posted my message their were alot of replies I thank the good lord for so may caring people out there. Thanks alot and keep me posted. Irene
Re: blepharospasm/WELCOME/Irene
Hi there Irene, glad you are getting some replies to your post.The preservative-free drops and creams I use are all by Allergan (there are others on the market). After my botox injections I use the thicker Celluvisc drops (individual phials), then later on go to Refresh Plus (individual phials), then Refresh Tears (in a bottle) during the day and when I am out and about. At night I use Lacri-lube cream, covered by eye blinds. I use these products 365 day's of the year. Others use GEN-Teal products and like them so, as long as they are preservative free that's fine. Take care June in Toronto (beb/meige)
Re: blepharospasm/WELCOME/Irene
June the support group online is very helpfull as to somethings that will help me with my disease. I'll try to find out about the creams you are using to see if it helps me. Also I bought Refresh Celluvisc Lubricate Eye drops and I like them better because it keeps my eyes more lubricated . I'll continue to you them more so because I really thought I did't need them but at times I feel them really dry. Thanks alot.
Irene
Re: blepharospasm/WELCOME
Irene, I find the warm compresses to be more helpful ... unless my eyes are burning, and then the cold feels better. I do not take any oral medication for BEB, just the BOTOX injections.Sally in North Idaho, wishing you a comfortable day.
Re: blepharospasm
Irene,Sorry to hear you have BEB. Unfortunately, there are no easy answers to BEB because we all seem to have different symptoms and triggers. What we do have in common, is we all suffer with the frustration of BEB, and how it efffects our lives.
I was just officially diagnosed in Feb., and I am going for my first set of Botox shots specific to the BEB w/apraxia next Tues. I am nervous about it because I know that it is a bit of a guessing game until they find the injection sites that work best.
The anxiety part takes time. Your adjusting to a life style change - give yourself time and take care of yourself. Even more important be nice to yourself. Stay in touch with the board - there is a lot of support here.
Take care
Denise
Re: blepharospasm
Hi Denise yes we all have different symtoms but the suffering is the same I must agree with you. The shots are a little scary but if that will help us do it . I'll be praying for you that every thing will be alright. Do you work if so how are you doing . I was working as a Library-clerk in a School but I had to take a leave- of absence and I want to finish up the schhol year. But I'm afraid I will not be able to do my job well. There are alot of supportive people posting messages and I' learning and am very greatfull to all of their response. Keep me posted .
Irene
Re: blepharospasm
Hi Irene ...I, too, worked in a school library and can really empathize with the difficulties you are having now. Oh, those tiny little numbers on the spines of books!!! And the fluorescent lighting!!! Through a rather uncanny series of circumstances (building/library closed) I would have been reassigned to another position in the district, but was offered a medical insurance premium payment that was satisfactory so I just took early retirement. I could have never done the job the next year with the way my BEB/Meige progressed. Sally in North Idaho, who is constantly amazed by life's twists and turns.
Re: blepharospasm
Irene, I feel for you. We all know what you are going through as we do it too. But I think the worst time is when it is just at the beginning and you feel so alone and vulnerable...and terrified of the future. I was diagnosed in December and finding this site haseen a lifeline for me. I live in Scotland, and know nobody who has this disorder, or who has even heard of it. You will get lots of really good advice here. One night you will be sad for someone like yourself that we can identify with, and the next night you will be crying with laughter. Yes, you really will! They are a mad bunch on this site. Stick with us, and we will all seee each other through this!
I agree with whoever it was who said to get you teenage sons to read this site regularly. They need to understand that you are not an attention seeker, or crazy.....And understanding will bring support from them. And they can type their questions on here too to ask us anything they need to know. they need a bit of support too, but you are not the person right now that can give it to them. You need it all for yourself just now.
keep your chin up! Pippa, from Scotland
Re: blepharospasm
Pippa I got online not very long ago and the response was great I was in tears the whole time that I was reading the messages on the post from different places of the world, Thanks for understanding .My youngest daugher is asking me Will I have to go trought This myself mom I'm hoping that isn't the case because my mom and aunt are BEB also. And I never knew about this disease myself untill I recieved the package from the research foundation. Pippa Good luck hope things get a little better.
Irene
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