Posted by: June in Toronto ®
01/08/2003, 09:23:46
Author Profile Mail author
|
Hi Ken, welcome to the beb bb. Its great that you are helping your mother with this disease (others call it a disorder or dis-order), and this is a wonderful forum for questions, answers,caring and sharing.Its hard to answer your question as everyone of us has somewhat different symptoms, take different medications (after much experimentation with our doctors) and try different injection sites for the botox inections. Some have also had a limited or full myectomy surgery with varying results. It sounds like the depression your Mother is suffering from might contribute a lot to her panic attacks and general condition. I'm sure you have printed information on beb/meige and you all understand (somewhat as we all do) what its all about - if not you should obtain the brochures available. Have the doctors tried different injection sites to help - how much botox (units) was given? Please share more information if you care to and I'm sure others will post back to you. I've had beb and meige for 8 year's now - I believe my meige is reasonably mild and I get 90 units of botox every few months. I have side effects from the botox (for about a month) but then can lead a reasonably `normal' life. I am 63, was born in London, England, and had to leave my job at the University of Toronto because of beb at the age of 55. I'm glad you had `excellent support from the U.K.National Health Service' - that's good to hear. Best wishes to your mother - she is not alone - we ALL care. June in Toronto
|
Posted by: ClaireW ®
01/08/2003, 09:35:36
Author Profile Mail author
|
Welcome to the board Ken. I'm Claire,46 with two teenage sons and live in Macclesfield. I was diagnosed with BEB and Meige in June this year...being treated with BOTOX...and sadly it does seem to be getting worse...however, since i have found the support of this BBand the wonderful people here I have found it so much easier to cope. Can your Mum use the internet? it would be so good if she could "talk" with these dear folk here...however she obviously has a very caring son.
It sounds as if your Mum is having to deal with depression as well as the BEB. BEB is not nice...and harder to deal with when you are feeling down. One briliant source of help has been the BEBRF info pack and newsletter.(There is a link at the top of the board). I sent $15 cash to USA. It came by return.)
One of the ladies on the BB lives in Scotland..I'm sure she'll reply to you at some point!
Sorry, I want to say more but eyes are giving up...
Lots and lots of kind thoughts to you and your Mum,
Claire
|
Posted by: Anita Croce ®
01/08/2003, 09:39:31
Author Profile Mail author
|
Blepharospasm, Meige's Sydrome can come in different degrees. Some people have strictly blepharospasm, others may have the Meige's along with it. This is what I have. I feel depending on where the injections of Botox are placed and who the doctor is that's placing the injections might determine how well your mother might do. If she isn't getting good results from the doctor that she is seeing, I would recommend seeing another doctor. I have never tried Tretabenazine, but recently have tried Clonazepam. My eyes began to clam shut hardly and the doctor thought this might help with the situation and it did. I once was told that where you are with your spasms after five years of having it, this is probably how bad it will get. Although, we are now hearing of nerve sprouting, so I'm not sure if this is true. There are stages mentioned in our Blue Book that BEBRF gives out and possibly, your mother can't (because of her sight) read it or hasn't worked through these stages. It's not uncommon for a person to be depressed who doesn't get relief from these devastating spasms, plus she can't see. If she is sleeping often, this could be two things - she's depressed and needs to find a doctor that can place injections in the area that gives her relief and then when people with blepharospasm close their eyes, this is when the spasms don't occur, so this might be why she wants to sleep so much. If you have not been in touch with our Foundation, BEBRF, I suggest contacting them for informative material, as well as a doctor your mother could see. Their email address is: bebrf@ih2000.net Best wishes to your mother and to you.
Anita Croce, North Central District Director, BEBRF
|
Posted by: MaryNY ®
01/08/2003, 14:47:58
Author Profile Mail author
|
Welcome, Ken. Great of you to be helping your mother. As mentioned by Anita, I think one of the best meds I was prescribed is klonopin (clonozapin is generic ). It helps immensely with anxiety, panic attacks,etc., which I am sure either causes or makes worse BEB. I also take Zoloft, as some other patients do, for depression. With those meds and Botox every 8 weeks, I am able to function quite well.
First step is to get in touch with the foundation, address on this site. Loads of helpful information. And the Bulletin Board is the very best source for understanding and helpful information. Good luck! Mary
|
Posted by: Sally - in - Idaho ®
01/08/2003, 15:55:38
Author Profile Mail author
|
Hi Ken,Welcome to you and your mom. It's great that she has you to help her sort out the myriad of problems and questions that come along with this disease/disorder. I have been diagnosed with BEB/Meige for about four years now, after searching several years for the cuse of my symptoms. The neurologist I was originally with told me that USUALLY if one's dystonia begins with BEB it does not progress to other areas, although Meige tends to go along with it. I think we all have our ups and downs and times of being better and worse. I have Botox injections every two months but do not take other drugs for BEB. I do take lots for other causes and take Paxil for depression. The panic attacks come to me also under certain circumstances: I crumple under pressure of having a company meal prepared at a precise time, having to prepare food for any outside occasion, having people come to my house (invited or not), and lots of other quirky little incidences. I just try to avoid having those occurences to deal with. Just guessing, I'd say that your mom is dealing with depression, probably as related to being struck with this terrible, frustrating condition. Has the doctor talked with her about that and how she might overcome it? If there is any way that we on this BB can help her or you, I know there will be all kinds of gentle souls at your command. Just ask us. Please feel free to discuss any of your/mother's concerns and fears, and don't worry about making "far out" comments. A big hug to your mom. Sally in North Idaho where the fog really has us zonked in today.
|
Posted by: Ann Doyle ®
01/08/2003, 18:45:44
Author Profile Mail author
|
I have a very good dr. within one days driving distance at a Movement disorder clinic with Vanderbilt hospital. My only complaint is that he won't geve me shots more than 10 weeks.and I do think I could take more. I have the exact same symptoms as your mom. Once I couldn't see for 7 weeks and just went from the bed to the davenport to the refrigerator and since this whole thing started 5 years ago , I have gained 50 lbs. Most people in depression stop eatting. I eat. I do fake Klonopin. Someone else used the other name for it chlorazapam . That's the usual . One of the side effects is depression so I take Zoloft for that. It take awhile to build up. She should try Botox again my a movement disorder specialis or someone who gives lot of shots for Ble;h. Some DRS. are now adding Albumin to the Botox to make it more effective. But while I was blind, I felt and acted exactly like your mom. I still have very bad periods when I really can't do anything but go to bed. and count the days to the next shots.
It's a terrible disease and I've willed my brain to the dystonia foundation in Maryland so that maybe some else can be helped. I am 72. We are of all ages. I feel sorry for the kids. It's tough enough being a teenager or trying to date or find a job or look after kids. Ann Doyle. Tell your mom we care and if she has any questions we/ll be glad to answer them.
|
Posted by: Kelly Saffell ®
01/08/2003, 23:05:44
Author Profile Mail author
|
I'm so sorry your mother is having such a hard time right now. I remember the days of being depressed - and still am at times but not as much. I was diagnosed with BEB/Meige in 1995 when I was 26. My grandmother also has beb. I'm now 33 and on disability. My girls are 7 and almost 5. I receive 140 units of botox for beb and 60 units for meige every 10 weeks. I also take klonopin and parsitan(antiparkinsons from Canada). With the meds and high dose of botox I do manage to function around the house and care for the kids. I don't drive more than 5 miles, don't read much, and am very sensitive to light, wind and cold. It can be very frightening to leave the house, especially alone, for fear of shutting down in the middle of a store or parking lot. I've shut down completely a couple of times and one of my "little girls" runs to my rescue and gets me to the car. Injection sites and dosages are VERY important and I would encourage your mother to continue to work with her doctor or contact the foundation and see if there is a more qualified doctor in your area.Kelly Saffell
Dallas, Tx BEBRF Rep. (whose ancestors are from Scotland. I even have a skirt made from the "Scott family plaid")
|
Posted by: Ann Doyle ®
01/09/2003, 07:24:48
Author Profile Mail author
|
Since your mom and I have the same condtion exactly for right now, She might want to write to me privately. I left my email address. Just press my name. You might want to teach her how to use this page.
Last time I visited my Dr. I asked him that same question and then answered it myself. It' s like answering a cancer patient how long do I have to live. Generally speaking it reaches it's peak at 5 years but it sure does vary a lot. Ann Doyle
|
Posted by: June in Toronto ®
01/09/2003, 09:47:25
Author Profile Mail author
|
You said you are like Ken's Mum right now - does that mean your eyes are closing all the time and you are depressed? We need to know, you know:-) We have time to start a pity party before I leave on Sunday and then the others to can attend and enjoy it! Take care - June in Toronto
|
Posted by: Ann Doyle ®
01/09/2003, 13:55:15
Author Profile Mail author
|
Not now. But that is exactly how I get. Especially if it's a long time to next Botox. How I envy Sirley and hew DR giving it to her every 8 months and someone else who is getting 140 in her face plus the other places As loing as I am being envioous, I might as well be envioous of a woman here in town sho only has it in her eyes and gets shots every 12 weeks and it last 11, She has been like that for 10 years. Then I think of all the little ones. I just feel so sorry for them. Today my eyes are fine.
Usually the Botox takes affect the next day. It didn't start working until 2 days ago. It really had me worried. Thank for asking Ann Doyle
|
|
