Re: question
Hi Rhonda. Since you had a ptosis in your right eye, that means that botox got into your levator muscle(the muscle in the center of the upper lid that helps to open your eye). Even though your ptosis is now gone and not bothering you, that muscle has still been weakened by the botox and you will probably continue to have more difficulty with that eye until the botox wears off. You have probably noticed that when you are tired or by the end of the day that right eyelid is a little more droopy than the left eye. Unless you consciously try to open it, since it is in a weakened state, it will just tend to close. You are probably either trying to hold that lid up at times or touching or rubbing that eye more because of this which may be the cause of the swelling.
That is what I think is going on. There may be other opinions. Your doctor may just need to change his injection sites or technique around that right eye to help prevent a ptosis. All injections in the upper lid and brow area should be pointed away from the levator muscle and none directly over it. I don't know where he actually injected you but he may be able to inject you in the same spots if he will just point the needle in a different direction (away from the levator). He may or may not want to hear this. You could tell him about the ptosis and ask how he plans on injecting you the next time to prevent this. Then you can mention this mouthy person on the bulletin board that said such and such (that would be me) and ask if he has ever heard of the direction of the needle being a factor. Good luck to you. Everything is ok and sounds typical with having had a ptosis. Shirley in Arkansas with BEB/Apraxia and no smile and a droopy upper lip due to recent botox injections and an inexperienced doctor that I am going to gently train.
--modified by Shirley-Arkansas-USA at Thu, Nov 08, 2001, 22:09:28
Re: question
i think you're a sweetheart.please e.mail me sometime. kcoutant@aol.com see ya! rhonda
Re: question
Dear Shirley in Arkansas and all BEB patients:My name is Hillary Morris and my mother has had BEB for almost 10 years now. I am a college student at Ohio University in Athens, Ohio, and I am researching BEB for a project in a Health Comm. course. It seems that you (Shirley) know quite a lot about the disorder and the dealings with doctors who treat the disorder. I am extremely interested in hearing your story if you would not mind. I know that, even though advances are being made, that there are still alot of factors that make this disorder difficult to deal with. I would appreciate any personal insight anyone could give me to be used in my research project. Personal stories are quite important to my research as well as to my general understanding of the disorder. The more I find out about BEB, the more I realize how difficult the disorder is to deal with, and how strong those who have it are. Please tell me anything you wish...everyone!!
Sincerely,
Hillary Morris
Re: question
Sometime earlier this year our Moderator started a chain of "my story" messages that should be of value to you. I suggest you ask her to dig these out of the archives for you, if possible. I contributed to that thread, as did many others.Some other pointers: The BEBRF has a number of stories written by patients in a booklet -- I've forgotten the title, but it's something simple like "Patient Experiences". There is also a medical book of data on BEB and related dystonias, titled "Blepharospasm and Related Disorders: A Historical Review of Etiology and Treatment", available through BEBRF. --- Lynn
Re: question/Patient Stories
BEBRF sent me "Patient Stories" volume 2 when I requested it.
As I'm a relatively new BEB patient, I don't know anything about Volume 1. I certainly enjoyed the reading & got lots of ideas on what might help. Someone suggested reading "8 Weeks to Optimum Health", which I checked out of the library. That is also a good book, not specifically for BEB folks.
Joann in Ark. who got a little Christmas shopping done this a.m. My husband took me out for breakfast & we had time to spare before going to church.
Re: question
Hi Hillary. What a great research project! My story is different because of my age. I developed beb/meige right after my first daughter was born 6 years ago when I was 26. After a year of research with many doctors we decided to have another baby and not discontinue my botox treatments. I received botox injections 3 times during my pregnancy and gave birth to a perfect daughter in Feb 1998. My condition worsened alot after her birth, however and I quit my job a a CPA in Dec 1999. Being a full time mother of a 6 and 3 year old is all my body can handle!! I am now 32 and receive botox for beb every 8 weeks and for the meige in my jaw muscles every 12 weeks. I have all of the usual problems of people with beb/meige - driving difficulites (if I can drive at all), photophobia (especially sunlight), reading/computer work must be for very short periods of time, exercise makes my condition worse, and so on and so on. I was interviewed by Ladies Home Journal (Arpil issue) about the noncosmetic uses of botox and also appeared on a local fox news health report explaining dystonia, beb, and botox. I would be glad to send you copies of either if you think they would help your research. My email is ksaffell@aol.com. Thanks again for your committment.Kelly in Dallas
Re: question
Thank you all so much!! The stories you have given me will be extremely helpful to my research. I'll be sure to tell you all how it goes. Also, to anyone who still would like to share their story, I would love to hear it. Hillary
Re: question
Hillary,I'd be glad to e-mail you a story if you're interested. I noticed you didn't give your e-mail address. Mine is wdjl@canby.com Dee in OR
Re: question/Hillary
My story is similar to others. I first noticed extra blinking while driving. I talked to a couple of my sisters, who are RN's but they had no idea what was wrong. I went to my optomitrist & he didn't have any idea, said it was probably dry eyes. Next I went to an opthamologist & he checked me for dry eyes & also said I had blepharitis. So I used baby shampoo & cleaned my eyes twice a day for a couple of months. Still the blinking got worse. My GP thought it might be Shogrens Syndome. In the meantime I talked to various friends & one of them knew of a lady with a problem like mine. She came up with the name blepharospasm. I got on the internet & it sounded like my problem. So my GP refered me to The Baptist Eye Clinic in Little Rock. I made an appt with Dr. David Wilkes for a consultation. When I went there, he asked what was wrong. I said "I think I have blepharospasm" & he looked at me & said, "Yes you do". A week after that I had my first botox injections, in the fall of 1999. This helped some & & went back for more injections 3 months later. It was a 5 1/2 hr round trip drive for just 5 min. in his office. Then I saw an ad in the local Ft Smith, ARK paper from a neurologist,Dr John Kareus, with St Edwards Hosp. stating he gave botox injections. So my GP referred me to him & I've been getting my botox every 3 months from him ever since. I've gotten more confident in Dr. Kareus since the Scottsdale conf. Dr. Kareus learned the procedure of giving botox around the eyes from one of the Doctors who spoke at the conference. A year or so ago I did get another opinion at the Univ of Ark, Jones Eye Center. They gave me a good checkup but agreed the botox & medication I was getting was all they could do. I got my last botox Oct 4, which helped for a few weeks, but now the spasms are starting again. I also have a big problem with apraxia. I'm most comfortable keeping the eyes closed. I quit driving Aug 1,'01. It's a real adjustment, not only for me but for my husband as well.
I'm scheduled to have a limited myectomy with Dr. Anderson in mid January, hoping that will help. I'd really like to be able to drive again.
Joann in Ark, where it's a bright sunny. I'm thankful for the FL41 glasses.
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Good luck on your research. I am 51 and noticed that something was wrong in Jan. of 1999. I was 48 and worked as an RN. Difficulty driving was my first symptom, started as blinking constantly and eyes watering, then progressed to left eye closing while driving and watching TV or the computer screen or Heart moniters at work. Next came severe light sensitivity from sun and lights where I worked. I thought it was my contacts and stopped wearing them, but things kept progressing. The first doc in Feb. said "dry eyes" so I asked for a 2nd opinion and by the time my appointment in March the eyes had started the hard squeezing spasms that were painful. I describe it as 2 vaccuum hoses sucking my eyes into my head and slamming my eyes shut. The 2nd doc said she thought it was Blepharospasm, but told me it was nothing to worry about, that she would send me to a specialist and there was a treatment and I'd be fine............Liar! or excuse me ...misinformed.
I had been a nurse for 27 years at the time and didn't know how to spell it to look it up. She gave me nothing even though I asked her to write it down....she forgot and since she said I'd be fine I went on my merry way believing her. The specialist appt. was 4 weeks away, but in 2 weeks I called and said I can't wait 4 weeks and got to see someone the next week. I asked that doc's nurse for some info in writing and she brought me a BEBRF brochure and left me alone while I read it.....I went to pieces. I ended up going to a neuro-ophthal at Vanderbilt in Nashville and received Botox every 3 months with very little results except it made my nose and cheeks start the spasms until it wore off in a few weeks. I had to stop working in May of 1999. I had a limited myectomy in May of 2000 with very little consistent help from that. In Jan. of 2001 I started Klonopin 1/4 mg every 4 to 5 hours during the day and that has helped the most. I had tried a laundry list of prescribed and over the counter drugs and herbs and potions, and acupuncture with no results. My best therapy is working in the yard. When I look down I feel normal digging in the dirt. I am on SSD and Long Term Disability from work and have good eye days and terrible eye days no matter how close or faraway from last Botox. I can drive short distances sometimes, but always with sheer determination and great difficulty. I go with the flow and take it a day at a time.
--modified by Delaine Inman at Tue, Nov 13, 2001, 11:33:07
Re: "Going to pieces"
Hi Delaine:
Do you think there is anything that can be done to "soften" the blow of learning about BEB for the first time? I know it was the hardest thing my Mom has faced with this disease. Like you, she was told that BEB "comes and goes"..."it's not a serious condition"....by doctor #5 who was the first one to suspect BEB. We didn't know what Mom was up against until we found the BEBRF and got her packet in the mail...Not exactly easy reading, but at least it was truthful and informative.
Kerry in CT
Re: "Going to pieces"
Part of my mission is to get the BEB/Meige brochures to the doctors who diagnose and treat both. I ask every doctor who speaks at our support group and every doctor I see to "Please" keep plenty of brochures and to give them to patients and never leave them alone to read them. It was so traumatic not to get the brochure from the doctor who diagnosed me, and it was traumatic to have to ask for teaching material and then to be left alone to read it was something no one should have to do. I stopped being a nurse and became a patient and learned many great lessons from my experiences of dealing with BEB. I run my support groups a little differently because of my life experiences as a nurse and a human being. People need to have the truth presented and I think the BEBRF brochures do it in a way that is honest and compassionate. It still is a hard blow to learn the truth, but it is even harder to be misled or uninformed. We need support from the doctor, their staff, our family, friends, and our BEBRF family to grieve and cope at our own pace and in our own way. The foundation will send brochures free to anyone and I have made sure that every doctor I have ever seen for this disorder gets on the mailing list. I sent the foundation donations to help pay for SSD packets to several doctors. I have had a tremendous response from doctors who have spoken to my group or I've seen as a patient. I want them to understand the emotional aspects of treating this frustrating disorder for both the patient and the doctor. Their comments to me after my discussions or after they come as a guest to the group have given this disorder meaning and purpose in my life. I know in a way I have been "called for such a time as this". I hate the disorder but I love the gifts it has given me and the way I have allowed it to use me when I am open to helping others and making a difference any way I can.
--modified by Delaine Inman at Tue, Nov 13, 2001, 11:22:56
Re: "Going to pieces"
Bravo Delaine!
You are an inspiration in many ways. Thank you!!!
Kerry in CT
Re: question
Hi Hilary,My name is Carol Brown. I wanted to congratulate you on your research and maybe share a little of my story with you. I was diagnosed with blephro/meige in 1996 after going through 4 years of docs telling me I had "dry eyes". The meige part, they just figured was a bad habit I picked up somewhere. I was referred to Dr. Patrick Hogan, a neuroligist, for botox injections. I ended up having myectomy surgery in 1998 because the botox injections did not seem to help and I was getting worse. The myectomy surgery has helped as I don't have the terrible squeezing in my eyes I was having before. I also tried different meds, but they all made me sick (I lost 25 pounds just from throwing up all the time, what a way to lose weight!). I am much better than I was. Still go in for injections about every 3 months. Was really hoping the surgery would have taken care of it, but it didn't. I was able to get on social security disability because of this, as I worked as a typist for the state for 26 years. One more thing, I was in a terrible car accident when I was 21 years old (I am 61) and broke the windshield with my head and, of course, was knocked out. The doc thinks this may be caused the dystonia, but doesn't know for sure. I wish there was a way of finding out for sure. With regards, Carol from Naselle, Washington where we have a storm coming in today.
Re: question
My story is very similiar to the rest of the suffers. Went from Doctor to doctor. The one who finally gave me the diagnosis was very abrupt. When I asked him what was in for me in the long run, he said " You will probably need a complete face lift" . I quickly replied that I had always said that I would get one for my 50th birthday!. Then I left the office and fell apart. A friend immediately drove me to my own doctor who prescribe antidepressants. I had to go back the the same doctor to get the botox. He did not offer any literature or support. At that time I did not even have a computer to look things up. I got even more depressed and started to have panic attacks. Eventually when to a neurologist who has been a godsend. She sees me on short notice. I find that I can go quite a long time between shots. I describe it like needing a hair cut. One day it is fine and the next day it's My God give me the needles!.
I had surgery with Doctor Anderson about 19 months ago and except for the eye not closing completely which then causes dry eye I have been doing OK. I can drive and do most of the things I use to do. I get tired easily so our social life has changed as I do not feel up to organizing or having late nights out.
Glad to answer any questions you might have if it helps even just one of us.Catherine in Calgary
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