Posted by: June in Toronto ®
01/03/2003, 11:10:43
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How Anna, thanks for sharing with us how much better you seem to be doing - a nice start to 2003, to hear this. You must be very happy to have been able to continue working in your chosen profession as an RN and going back to school in February.Others on the bb have thought that wearing contacts might have started, or at least aggrevated, their beb. It doesn't make sense to me if someone was blinking (or had eye closures) a lot, that wearing contacts would help that condition! What do you think helped you go from having botox that lasted only one month, and taking 17 days to work, to going to your current 3-months? An ew doctor perhaps, new injections sites? I so envy you not having light sensitivity and dry eyes - any ideas how that came about? Please share as much as you can - someone might be able to use your suggestions. Thanks again for posting. Happy 2003. June in Toronto
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Posted by: ANNA FUZIE ®
01/03/2003, 14:39:56
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Thank you June...
To be honest I am not sure what it was that has made me more stable than I was. I agree that I do believe the contacts exacerbated the condition but I do recall having some signs and symptoms prior to the contact issue, mostly squinting and that's why I ended up at the optomitrist thinking that I just needed glasses and then opted for contacts. I had such a horrible time trying to put them in (you'd think at 44 I could do this but couldn't) and ended up with an eye infection... long story short, after several trips to urgent care in one week and then to family doctor who ordered valium because I was "stressed"... etc... finally to the specialist who dx my condition which took about 2 weeks.
My first injections were by a different doctor initially but then after that my doctor and sites have stayed the same as well as the amount.
The artane works very well (but the doctor that gives me the botox would only give me ativan and not artane). I do believe that the artane has made the difference for me and initially was on it twice a day and then had to increase it for a while but now am back to 5mg a day.
I have rambled on but in part because I wasn't sure if I wanted to add this last part... I am not particularly a religious person but I do believe in a god and feel that I am spiritual. Two people with whom I work with from different departments on the same day contacted me. The first one was the director of the county hospital for which I work, called me personally to ask if she could put me in her prayers as she knew that I was struggling with this disorder. I was very moved and said of course and I told her that knowing her...she probably had already done so. She laughed and I thanked her. Later that day, a nurse who used to work for me but is now in a different department came by and brought me a little card that stated that (she is Catholic) a candle had been lit for me and would burn for 90 days and prayer would be said for me for those 90 days. I was deeply moved by both of these people and to be honest...shortly after that I started feeling so much better. I do believe in the power of positive thinking and have had a lot of support from staff that I work with and family and friends.
I did attend the conference in Texas this past August and while I was thrilled to have the opportunity to attend, I was somewhat disheartened because I learned so much more and really saw others struggling so much and here...realizing that everyone is so different in what works or doesn't for each person.
But as I stated, I still have mild Meige and the other thing I didn't mention is that I have a continual low grade temp between 99-100 all the time, and joint aches most days (I assumed it is a side effect of the botox) and take 800 mg of motrin a day which greatly helps.
I do not consider myself cured but only stable and am deeply grateful.
And as I said in the previous post I was wondering if anyone has experienced any kind of remission and for how long?
Thank you again June, and I so hope that there will be a cure soon for everyone.
Anna
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Posted by: June in Toronto ®
01/03/2003, 17:10:01
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Hi Anna, thank you sharing more of your story with us. Whoever/Whatever it is that is helping you - God and prayers of your friends and family, Secondary BEB (as Shirley mentioned in her post-doesn't she write a good one?) I'm so glad it has happened. Keep letting us know how you progress.June in Toronto
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Posted by: Shirley-Arkansas-USA ®
01/04/2003, 17:05:40
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Anna,
I know of two people that have gone into remission after having had BEB for several years. One is Susan Hasselle who used to post frequently on the bb-she was at the conference with her husband. They lead an opening session on the first day. You might remember her. After using the Scopalamine patch for years, her symptoms went away and she no longer has to use the patch. She still attends the conferences every year and posts sporadically. She is a nurse practitioner and I really miss her input.
The other is Mindy from New York. She took Parsitan for some time and did a lot of mind/body/healing and went into remission. She checks in periodically. A wonderful lady that dealt with this for years. She worked very hard to get through this and go into remission.
I wish that they would both pop in to tell their stories.
I believe that Delaine also knows someone that went into remission.I personally believe that there are countless others that have mild forms of Blepharospasm that may be caused by specific things that do get better and their symptoms go away. Sorry that I didn't get to meet you at the conference. Shirley in Arkansas
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Posted by: ANNA FUZIE ®
01/04/2003, 20:29:57
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Hi Shirley and Kelly,
I wish that I had met you both. I was at one of the breakout groups on Friday night... the Meige group and was bit distressed with that particular group and the leader as this seems to be my major problem at the moment though it is actually mild and I notice it more than anyone else does. I didn't go to the morning session on Saturday so I would't have met Kelly then either. I was pretty quiet and stayed in the back because this was still quite a shock to me.
A few of the nurses I work with say they can barely tell anymore and they were with me in the beginning. I started using benadryl before I even saw a doctor (it was after the infection from the contacts, etc) because the symptoms I had seemed to mirror the symptoms of the patients I see who had EPS (Extra Pyramidal Symtoms) which happens to patients who are on certain psychiatric medications. The benadryl was of great help and I almost seemed "cured" after two weeks of suffering...then suddenly one Saturday, this entire thing came back with a vengance and I spent a week in urgent care every day... I was sure they were going to have someone come see me and lock me up! I think I was fortunate that most...because my daughter saw a small little article in one of her teen magazines and she brought it out to me... It talked about unusual conditions...and blepharospasm was one of them... I hugged her and haven't stopped. The specialist I see told me I am very lucky because people often go years and are misdiagnosed.
While it took 17 frustrating days the first time... it has gotten better and better. I still can't say it was because of the contacts because I did have some signs (mostly squinting) a month or two prior.
I have been fortunate because I also work with doctors who are most willing to help me in anyway and have been very supportive.
I appreciate both your responses. The doctor friend/psychiatrist whom I have known for over ten years that gives me the Artane is frustrated because he prefers I take valium with the Artane but the specialist prefers that I take the ativan instead. While I have access to both I rarely take either one. I prefer to not be groggy and the artane works perfectly. I rarely have to take an ativan. Ativan makes me nauseated and gives me a headache. Valium on the other hand makes me want to sleep so it is just Artane for me (occasionaly...depending on the Meige I take a 1mg Ativan in the AM with 5mg of Artane and that is it for me).
I did want to say that though I don't have such severe response to the light...occasionally the sun is still a bit bright but I have found that Maui Jim sunglasses with a Maui Rose tint works better than the FL41's that I did purchase in the beginning. These can be found in almost any mall in Sunglasses Hut. And they are a $100.00's cheaper or more than the other ones I ordered. I don't wear either one much anymore but if I do...it is the Maui Jim's that I wear. Just an FYI. My botox doctor had recommended them and I believe will start carrying them in the office as they do have an optical department.
I really have been mostly a lurker since I discovered this wonderful website and will probably go back to being more of a lurker but it has been nice to be able to share with all of you. Thank you for the opportunity and I do read most every post and learn every time I am on here something new.
A hug to all,
Anna
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Posted by: Sally - in - Idaho ®
01/04/2003, 20:44:55
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Hi Anna,You have brought out some interesting information and given us more insight into how this condition affects you. Please be more of a contributor than lurker in the future. Thanks for sharing. Sally in North Idaho
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Posted by: Delaine Inman ®
01/04/2003, 20:47:10
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Come out from the lurking more often. You have an interesting story. I have heard of people taking a low dose of Klonopin with their Artane for a better effect. I take 1/4mg as needed and it doesn't make me groggy. I had really mixed feelings when I attended my first conference and didn't socialize a lot and lived to regret it. I was having a really hard time with my eyes and the lights and presentations sent me into spasms beyond belief. It was also hard to see others worse and not wonder if that was going to be me someday. Now that I know and love so many people from the BB I do want to go back to a conference just to be with them. Shirley came to TX while I was visiting my son and it meant the world to me. She means so much to me and so many others. She is a national treasure. Also Kelly and I got to meet when she came to TN to visit her parents and we felt an immediate connection and when I hugged her good bye the energy was so awewome it made me teary because I could feel the love flow from one to the other. That is the way it feels with other BEB folks. I do a group in Nashville 4 times a year and help get another group going in Knoxville. It is the greatest feeling in the world to meet and spend time with these people who come to the meetings. So don't be a stranger we need you too.
Delaine RN from TN and State Coordinator
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Posted by: Shirley-Arkansas-USA ®
01/04/2003, 21:23:01
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Anna,
I know exactly what you are talking about with that Meige group. I was supposed to introduce the speaker that we didn't think was going to show up. I was quite disappointed in that little session. Apparently it was difficult to fill that spot with a speaker that evening and this doctor said that he would do it. He was an ophthalmologist and didn't treat Meige patients. I was delighted when Dr. Stacy showed up (in his blue jeans VBG) and was going to pinch hit for the speaker that we thought was going to be a no show. It would have been a very good session. But alas, the speaker did show up and I was not too impressed. I disagreed with him about several things. It could have been a very informative session.
So.... we were even in the very same small room.I was quite paranoid and pretty quiet the first conference I attended. I did go away feeling pretty good about things though and having met face to face some of the people that I had talked to on the bb. And at the two conferences since then, I've had a whole heck of a lot of fun. Hey, it's my social event of the year! It's ok to be a lurker but I think that you will find that it is more fun to join in. Shirley in Arkansas
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Posted by: June in Toronto ®
01/05/2003, 08:11:02
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Shirley, you said Dr. Stacy showed up (in his blue jeans VBG) - tell us please what that means OR do you want us all to have a guessing game? You KNOW we could come up with some real doozers as an explanation - very big gut, virtual bad guy, vital broad g.....- what?June in Toronto who tried to get Shirley to have a pity party for laughs, now I'm aiming at this - gotta hae a laugh somehow!
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Posted by: Ann Doyle ®
01/05/2003, 11:09:35
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Virtually a Bad Guy. Couldn't help it Jone, You started a new topic. Ann Doyle
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Posted by: Shirley-Arkansas-USA ®
01/05/2003, 14:22:57
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I'm sorry June. It's computer lingo for VERY BIG GRIN (VBG). The guy is just a gorgeous hunk of a man. (Scuse me) :-) He looked particularly nice that evening very casually dressed in a plaid shirt and faded blue jeans. I'd say something about his cute butt but that would be inappropriate, so I won't. He very graciously was going to fill in for the Meige Speaker and did so for about 5 to 10 minutes, much to my delight, until the Real speaker showed up. He is a Neurologist that specializes in Movement Disorders and would have given an excellent presentation without any preparation. I know that he has been a speaker at the conferences that I have attended and has done an excellent job and has a wonderful sense of humor.So, not only do I like Dr. Anderson's boots but I also like Dr. Stacy's ...........jeans. (VVBG) Shirley in Arkansas
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Posted by: Delaine Inman ®
01/05/2003, 15:08:41
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Oh My Goodness.........Little Sis........Go to time out now. You naughty girl. I don't think you would have heard a word he said anyway! Your punishment was the speaker showed up. It's all your fault.
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Posted by: Shirley-Arkansas-USA ®
01/05/2003, 17:41:22
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I was so listening to him......I was hanging on every word.
Please don't blame that speaker on me! I should have locked the doors when Dr. Stacy showed up to fill in and refused to let the speaker in.(or Stacy out)
If we had just all stayed really quiet in there, maybe he would have thought no one showed up and gone back to where-ever. Of course, Don Peaslee was in there too and heaven knows that you can't keep that man quiet. :-)Shirley in Time Out :-( just because I like blue jeans....
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Posted by: Delaine Inman ®
01/05/2003, 20:51:42
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Time out just because you like blue jeans??? I don't think so. Admit it, you don't like jeans on a hanger. The jeans don't give you the VVBG, now tell the truth or you'll have to stay in there longer. Come on and fess up girl!
--modified by Delaine Inman at Sun, Jan 05, 2003, 20:53:15
Modified by at Sun, Jan 05, 2003, 20:53:17
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Posted by: Ann Doyle ®
01/06/2003, 09:42:43
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Is Shirley behind bars again? Here's a get out of jail card free. Ann Doyle
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Posted by: Delaine Inman ®
01/06/2003, 10:09:32
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No we are just in time out for being naughty. Now that I'm in time out too, we still are being naughty.
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Posted by: colleen ®
01/06/2003, 18:30:07
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I guess that i am naughty too,but i can still tell when a man lookes good in blues jeans. I might be 70 but still think young
Hang in there Shirley we all need a good laugh. Colleen in IL I WENT DEC 9TH and got my botox.Eyes still open. Have
neven gone this long before.
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Posted by: Sally - in - Idaho ®
01/05/2003, 16:10:30
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Shirley, I don't know how you manage to face all these famous doctors at the conferences after you carry on publicly all year about their personal details: cute butt, sexy boots that could go under your bed (or somebody's bed ... maybe Ann's?), wondering what kind of underwear they wear ....!My, oh my. I just don't know what has happened to my little sister in the Ozarks (you are in the Ozarks, aren't you?)? I was thinking of going to Philadelphia, but will give a second thought ... might get corrupted. Sally in North Idaho
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Posted by: Shirley-Arkansas-USA ®
01/05/2003, 17:49:40
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Well, I'm hoping that they are too busy to read the bb. And I think that I'm getting blamed for a little more than what I've actually said although I've said enough. I usually get a little help. I never said anything about boots under my bed-that had to be somebody else!
No, I don't live in the Ozarks and I wear shoes and everything. :-)Mary Lou will probably never ask me to introduce any of the speakers again! Alright, I've been bad. But he does look good in jeans. Sorry. Shirley hanging her head in shame with a grin on her face. :-)
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Posted by: Rita Molnar ®
01/06/2003, 00:08:00
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Well...
What an incentive to join you guys in Philadelphia ....Thanks, Shirley....I need to see that "VBG" for myself. If it's as nice as some of the "VBG's" I've managed to see in my lifetime...that alone would be worth the trip.Come on, Shirley, tell us what "VBG" REALLY means. p.s. I like blue jeans, too !!!
--modified by Rita Molnar at Mon, Jan 06, 2003, 00:09:15
Modified by at Mon, Jan 06, 2003, 00:09:16
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Posted by: Delaine Inman ®
01/06/2003, 09:40:21
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You can sure tell we don't get out much anymore, the way this conversation is going downhill. VBG (very big grin) should not be confused with VNB (very nice boots/butt) which sometimes Shirley refers to when she is discussing doctors who speak at the conference. This should also not be confused with VNB when referring to Alan's very nice beard which makes him a wonderful Santa. Judy will probably put us all in time out. This is more fun than a pity party. Hey we've got to have a good laugh every day along with all the things we face or we can't cope well, right? VBG to ya'll anytime you see the "B" word that makes you grin very big. Friends can't talk about BEB/Meige and dystonia or underwear all the time.
Delaine in TN going to join Shirley in time out for having VBG when discussing VNB.
--modified by Delaine Inman at Mon, Jan 06, 2003, 09:48:52
Modified by at Mon, Jan 06, 2003, 09:48:54
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 11:43:51
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Yes, Delaine, I think that you deserve to be tossed into "time-out" also for your paraphrasing and adding fuel to the fire. Rita is going to be in there also. :-)
That "hindsight" comment was purely coincidental and I cracked up when I saw your mention of it.
I think that Sally needs to oversee the "time-out" girls and give us instruction on proper behavior.Shirley in Arkansas
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Posted by: June in Toronto ®
01/06/2003, 11:49:12
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Im glad nobody remembers I started this VBG thread - I just enjoy the fun and don't get told off or put in cyber jail:-)June in Toronto who kept trying to get a laugh on this bb - first with a pity party for Shirley - no go (she wasn't having any), then this - thank Goodness something worked, I needed it!
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 12:31:27
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I think that instigators should receive equal punishment. And June, I do remember that you started this. :-) I was being so good and look what you've done! You deserve to be in cyber jail also. Attire is casual-most of us will be wearing jeans. Sally is the cyber-warden and will have a dress on and will look and act in an appropriate and ladylike manner.
Most of us will still have a VBG on our faces even though we have been put in cyber jail.Shirley in Arkansas
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Posted by: Alan Phair ®
01/06/2003, 13:48:46
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I think that I should put all of you across my lap and give you a good spanking. Then again, you probably would like it. Just thought I would put my two cents in...... Alan (where it is snowing again and can't wait for my trip to Aruba later this month.
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Posted by: Delaine Inman ®
01/06/2003, 14:10:54
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Hey Alan(Very Good Beard) that was good for a Very Big Grin. I won't comment on how you look in blue jeans and boots. When I met you I never got past your smiling face. You do have a great grin. We love attention and get it anyway we can if we can get ourselves laughing. It is good medicine and know you understand. We are harmless and like I said, we don't get out much and have a case of cabin fever crazy. Your 2 cents are always welcome and respected.
Delaine in TN where it is getting colder and gloomy. Sunshine in the form of family on the way, so forecast is looking up.
--modified by Delaine Inman at Mon, Jan 06, 2003, 14:17:36
Modified by at Mon, Jan 06, 2003, 14:17:39
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Posted by: Ann Doyle ®
01/06/2003, 19:05:01
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I'm glad I'm not mixed up with you naughty people ;^)
Sweet Ann who is always good 8:-)
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Posted by: Sally - in - Idaho ®
01/06/2003, 22:39:54
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Alan, May I come house sit and enjoy your lovely snow while you travel to sunny climes?Sally in snowless North Idaho
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Posted by: June in Toronto ®
01/06/2003, 15:46:43
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That's fine by me - I'll join `you guys' in cyber jail, I've always wanted to meet you anyway:-) Only stipulation is that I have to be OUT by Sunday as we are leaving for a 2-week vacation in St. Maarten then (HOORAY).June in Toronto
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Posted by: Delaine Inman ®
01/06/2003, 15:55:49
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I think we should establish cyberjail and time out st St Maarten. I want to go, too. I want to be where it is warmer. No, I just remembered, My Mom and Sister are coming Saturday and we are going to a taping of the Wheel of Fortune (My Mom's favorite show.....we aren't allowed to call her while it is on unless it is an emergency and it better be a real emergency!) Maybe Pat and Vanna will give us a free vacation to somewhere warm. I'll wave at everybody!
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Posted by: Sally - in - Idaho ®
01/06/2003, 22:37:18
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I'm sorry, but I do not want to wear a dress!Sally in North Idaho who had enough hassle with time-out kids being sent to the office in school. We'll just laugh it up and have a good ol' time.
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 10:05:11
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It Really does stand for Very Big Grin! Rita, you're as bad as I am. I guess that we all need to get out just a little more!
Poor Dr. Stacy won't know what everybody is grinning and whispering about the next time that he is a speaker at the conference. I can't bring myself to feel too sorry for him, though. :-)
I hope that you do get to go to Philadelphia in August, Rita. Hopefully I'll get to go, too.Shirley in Arkansas who thinks that she isn't the only one out there that likes a nice pair of blue jeans.
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Posted by: Delaine Inman ®
01/06/2003, 10:11:40
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I can't believe you are still blaming it on the blue jeans.....they mean nothing if you don't have a VNB to put in them.
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 12:40:44
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I can see right now that you are never getting out of time-out, Delaine. Sally has her work cut out for her. It will be difficult for her to teach us proper manners (without grinning). She may have to get out the whip and handcuffs.
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Posted by: ClaireW ®
01/06/2003, 15:56:43
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Whips, handcuffs and VBG's...do you have to be over 18 to read this board. Am I in the right place???? ;<)
Claire...with one ptosised eye.......
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Posted by: Delaine Inman ®
01/06/2003, 17:59:21
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Sorry we dropped to an all time low. We'll become PG again. We seriously do want you to be in the right place. Forgive us. We wlll now get back on track.
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Posted by: Ann Doyle ®
01/06/2003, 19:15:50
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I know the devil >:-> made you do it. Now be nice 0:) Angel Ann
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Posted by: Rita Molnar ®
01/06/2003, 22:02:46
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.....not to mention Alan's "spanking".... (sorry....couldn't resist) Rita in New Jersey having dreams about "VBG's".....
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Posted by: Ann Doyle ®
01/06/2003, 09:39:55
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Hey Shirley, we have something in common--love nice butts especially tennis players and runners have the best. Foorball players are the worst. See you at Wimbleton. Ann Doyle
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Posted by: Delaine Inman ®
01/06/2003, 09:46:35
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Hey Ann, don't start with me about football players. I appreciate their .......... uh.. dedication to the game! Go Titans. Eddie, Eddie, Eddie.....VVVBG.
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 12:47:04
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Ann, you're going to cyber jail too. Stop encouraging Delaine. She's gone off the deep end and may never be able to get back on topic again.
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Posted by: Delaine Inman ®
01/06/2003, 13:38:17
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Have you noticed that Virginia rarely needs time out. Maybe she can help Sally as warden. Thanks for the laughs everyone. My son will be here for "Christmas" tomorrow. He is already in the state making his rounds trying to see everyone. The tree looks so good I may leave it up until after Chinese New Years. That will take the guilt and pressure off for a while longer.
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Posted by: Virginia ®
01/06/2003, 13:52:14
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I've been lurking with a VBG. If I'd known Dr. Stacy was going to be in the Meige group, I could have stood guard at the door for Shirley. He's a VKD (very knowledgeable doctor) in addition to whatever other assets he may have.Virginia in AL, thinking of celebrating the Chinese New Year, too.
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Posted by: Sally - in - Idaho ®
01/06/2003, 22:31:22
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Delaine, my mother-in-law had her Christmas tree up until well past Valentine's Day one year. Her excuse was that it was so cold in the living room (unheated unless a door to another room was opened) and it was a long, very cold winter. She did get it down before Easter.Merry Christmas@ Having your son there will make it a happy event no matter what the calendar says. Selly in North Idaho who had such a pretty wild tree this year that it was really hard to take it out.
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Posted by: Joanne Matuzas ®
01/06/2003, 13:39:50
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I'm on lunch at work but I have to get my two cents in here--Shirley
is correct in her assessment of Dr. Stacy...:<) I missed the meige
breakout you are referring to at the 2002 conference but I chatted with Dr. Stacy at the 2001 conference in Scottsdale when he recommended I
consult with Dr. Lew at USC. IMHO, Dr. Stacy is well, it's already been commented on so now you all know....
Joanne M. San Diego, CA
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Posted by: Christel-California ®
01/06/2003, 22:52:04
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I just can't believe you guys carrying on like that. A week in striped suits with a diet of dry bread and water should straighten you out. You are VNG. :-)Christel in Ca. where it's blowing up to 70 mph and the patio furniture and everything else out there is up-side-down all over the place. It's a mess. I want to go with Sally and house-sit for Alan and play in the snow.
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Posted by: Sally - in - Idaho ®
01/06/2003, 23:01:24
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That would be lovely, Christel. We'd have such a good time rambling around Alan's big beautiful house and watching the snow fall. Wonder if he will leave us lots of tea and crumpets or something to munch on.Sally in Idaho
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Posted by: Christel-California ®
01/06/2003, 23:08:46
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Sally, of course he will. You can bet he has a huge walk-in pantry loaded with goodies. And just think, we can go figure skating on his pool. :-)Christel in Ca.
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Posted by: Sally - in - Idaho ®
01/07/2003, 17:11:35
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And remember, Christel, he said the snow storm kept all the guests away when they had a huge Christmas dinner prepared. Should be lots of yummy leftovers there.Sally in foggy North Idaho
--modified by Sally - in - Idaho at Tue, Jan 07, 2003, 17:18:45
Modified by at Tue, Jan 07, 2003, 17:18:50
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Posted by: Kelly Saffell ®
01/05/2003, 08:57:03
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I almost went to the Meige session since that is a big problem for me as well but I wanted to hear Dr. Anderson speak so I stayed for the blepharospasm session. It was great. I had a front row seat since I stood in for the Southern district (I'm the Dallas rep) and introduced the Southern district states during the Friday night session. I would love to attend PA but that probably won't happen. That is the first week of school and my "baby" starts kindergarten this year. I do hope to go to the next one since it is going to be held in Alabama if I remember correctly.I developed BEB/Meige 7 years ago after my first baby was born. It has worsened and I finally went on disability 3 years ago. The girls are 7 and almost 5 and it was just too much to work and care for them with this mess. I still get really depressed at times when I can't do something simple like take them to buy new clothes or drive Morgan to basketball practice but overall I am "better" and that is a blessing. My job as a CPA just became too much with the commute and constant computer usage and stress.
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Posted by: patti miller ®
01/05/2003, 14:25:00
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Shirley, I'm leary about posting this, but since your quote on there's more 'stories out there' - here goes. We had our third support meeting in Greenville yesterday and Jane came after Dr. Siddens kept telling her to come to the meeting and tell 'her story'. This was her story, but not a remission story: She's had BEB for 6-7 years and she went to an herbalist (I met the herbalist years ago). Jane looked great - like normal. We asked her what did she do. She said the herbalist put her on a stress management program. That consisted of her quitting her stressful job (which I nor a lot of others on the BB couldn't/can't do). She took another job, stress-free, and began taking the series of three herbs. Ironically, I knew very much about these herbs because I got these very same herbs for my daughter, who has bi-polar. I was shocked when Jane said she took the recommended dosages and has gotten off two and only taking the one now and gets Botox injections every 5-6 months. I had no idea this combination would/could work for someone with BEB. The group commended her for this working for her, but also warned the group that this might not work for others, since there's still no cure for BEB. This has just kept Jane at a place that she functions very well and leads a normal life, still with BEB - she was 35 when she was diagnosed with BEB. I missed some of the details since everyone started asking her questions at the same time, but am going to call Jane today. Since I just had my surgery and don't want to have to take botox unless I have to, I think personally I'm going to try it knowing it might not work for me like her. It'll be cheaper than my injections right now since, I'm out of work waiting on SSD. I'm not here promoting the product - I know the rules. Just thought you might like to hear Jane's story. Patti in SC
--modified by patti miller at Sun, Jan 05, 2003, 14:28:42
Modified by at Sun, Jan 05, 2003, 14:28:42
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Posted by: Shirley-Arkansas-USA ®
01/05/2003, 15:04:39
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Hi Patti
I think that we all like to hear about what various people have tried to help with their symptoms. You can even post what the herbs are that worked for that particular person (just don't post a link to where you purchase the items). At least that is the rule on the dystonia bb. We just all have to use common sense and do our homework and know that seemingly harmless herbal and non-prescription drugs as well as prescription drugs can have serious side-effects and can also interfere with other medications people might be taken. We should always check with our doctors before we dive head first into a new treatment plan. Better safe than sorry.
And Judy's reminder post from a couple of days ago should always be taken into consideration:
http://www.blepharospasm.org/forums/beb/posts/29868.htmlWhat works for one may only work for that one person.
I'm certainly open for new things to try. Patti, you might be one of the lucky ones that won't have to continue your BOTOX injections. Time will tell. I had my injections about 5 weeks before my surgery and within a month I knew that I would need to continue my injections for the lower lids and nose area. My lower lids felt like they would turn themselves inside out.
We're all just a little different but have oh so much in common. Thanks for sharing the story. Shirley in Arkansas
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Posted by: June in Toronto ®
01/05/2003, 19:07:51
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W'd all like to here what herbs they were Patti and, as Shirley said, as long as you don't say where to purchase them, it should be ok. Thanks for telling the story.June in Toronto
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Posted by: patti miller ®
01/06/2003, 19:11:20
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I talked to Jane last night to get more details. She said she was real bad and didn't know what she had and was driving herself and her family crazy when she went to the herbalist, who didn't know what she had, but started her on this program. She started her on two herbs that you probably can only purchase from a place that sells herbs and all natural products - "Mood Elevator" (used to be called "ADC") and "Nerve Control" (used to be called "Re-X"). She said she felt the results with her eyes within days. So I'm assuming if it's going to work, you at least can tell a difference by the time you complete the first bottle. The instructions say 4-2x day for Mood Elevator ($19.40)and Nerve Control 2-2xday ($13.40). She continued taking these two for 1 year, and the herbalist had her wean off those two and started taking "Nutri-Calm" 1-3xday. This is a natural vitamin for the nervous system. ($29.25)These are all for the nervous system. She said she doesn't take this one every day now, only when she needs it. She said she gets botox every 5-6 months that keeps her BEB under control. I didn't ask her when she finally was diagnosed with BEB, but she said she's had it for 6-7 years. She couldn't believe there were people at the meeting that had to quit work with BEB. If you want to e-mail her for more information, it is cooperman@prodigy.net. She seems very willing to share her story with others, that's why she came to the meeting and said she would come back. I called my pharmacist to give them the ingredients of the first two herbs, to see if they were compatible with klonopin. She said they were except for a few in the Mood Elevator that she hadn't heard of. I've put a call into the company that makes the herbs to talk to their health and science department to be sure. This is something we all must do to be safe if we're taking other prescription drugs. That's all I know - I'm curious if she's the only one who can benefit from this program. Patti in SC
--modified by patti miller at Mon, Jan 06, 2003, 19:16:00
Modified by at Mon, Jan 06, 2003, 19:16:02
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Posted by: Ann Doyle ®
01/06/2003, 19:22:58
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When you know for sure Patti , will you please let us know? Ann Doyle
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Posted by: patti miller ®
01/07/2003, 16:07:17
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Ann, I sure will, but we know again that it might not work for all or any of us. But, I'll let you know. Patti in SC
--modified by patti miller at Tue, Jan 07, 2003, 16:07:40
Modified by at Tue, Jan 07, 2003, 16:07:43
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Posted by: Kathy in Oregon ®
01/07/2003, 16:01:55
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Does anyone else have this as a side effect of Botox other than temporarily?
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Posted by: Christine ®
01/08/2003, 02:34:25
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Do you have joint aches? I don't have a low grade temp, but 6 weeks after having my first Botox, I developed Arthritis. Before I had the Botox I was feeling fit and well. The first 6 weeks, after Botox, weren't pleasant with side effects, the worst being daily headaches and very sore eyes.Then my eyes settled down and the arthritis began. Probably a coincidence, I'm due to get more Botox in Feb, but don't think I will. I'm off to a Rheumatologist in late jan. I'd like to get the joint pain under better control before I try Botox again. Anyone out there like me? I hope this makes sense, I'm tired and am off to bed.
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Posted by: ANNA FUZIE ®
01/09/2003, 22:22:57
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I do have joint aches most every day. Better once I start moving around but if I sit for a prolonged period of time it's hard to get right up. I also have a low grade temp most days and for both I take 800mg of motrin a day.
Today was my Botox day... I have finally made it to the third month and I did not feel I needed the injections. I was kind of surprised that he was willing to give them to me (which I appreciated) but I am definitely 95% better. Still occasional (that I only seem aware of) twitching in my lids and very minute amount of facial twitching. So I will wait for my appointment in February. He is usually only there once a month so I make an appointment and go anyway regardless of how good I am doing. He was very pleased and so am I. I so wish this would be the case with every one. As I said I also take 5mg of Artane a day and occasionally 1mg of ativan but not very often.
In the very beginning I truly thought I was a botox failure case because I couldn't really go past a month and half without the twitching incapacitating me. Despite that I still live with the fear every day that eventually this may come back as bad as it was. I was reading earlier about some of the depression people feel. Having been a psychiatric nurse for a long time I understand the depression so much better. It's certainly a different feeling that what I have every really experienced. I certainly understand situational depression so much better. I don't require medication but being able to share on here has been very helpful.
I had a staff member come to me a few weeks ago... he thinks that his mom has what we have and when he described the symptoms they were exactly that. He said him mom had been suffering with this for years and no diagnosis. I urged him to get his mom to the doctor and gave him all of the information I had. I certainly will follow up and see if in fact that is what she has.
Wish all of you well.
Anna in California.
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Posted by: Kathy in Oregon ®
01/10/2003, 06:15:41
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That is great that you urged that guy to get his mother to a doctor; maybe she can be helped. One of the problems we have much discussed on here is the length of time to get a diagnosis on BEB for many people. Yes this bb helps very much with sharing problems. i agree with you on the emotional aspects of dealing with this disorder; there aren' t many words that can accurately describe what happens when your disorder acts up and you are helpless.
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Posted by: Kathy in Oregon ®
01/10/2003, 06:09:46
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well this colder weather we are having here is definitely making my joints ache , but it is much better when it warms up in the afternoon or after i get some exercise which is always a struggle.
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Posted by: Shirley-Arkansas-USA ®
01/03/2003, 14:11:26
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Hi Anna,
It's good to hear that you are doing so much better. You may have had a "Secondary Blepharospasm" that was due to some eye irritation caused by your contact lens or other irritant and when the problem was corrected, your symptoms improved. You may have the genetic predisposition to develop the Blepharospasm symptoms or Meige symptoms and thus your body reacted in the way that it did. It will probably always be there (in the background) and may surface again or worsen with stress or further eye irritation. I know that I'm not telling you (as an RN) anything that you don't already know but trying to enlighten some others out there that may be in the same situation and have symptoms that just go away after a time. This does happen.
At the last BEBRF Conference they talked about "Primary and Secondary Blepharospasm". Primary being of unknown cause and Secondary being directly caused by something. I'm sure that this must be in the last newsletter (haven't been able to read it yet) which talked about the conference.
Also, I would think that the Artane (an anticholinergic) apparently is helpful to your symptoms as well as the occasional Ativan (stress reliever and muscle relaxer). These may be controlling your symptoms fairly well. You may also find that your lower facial movements might also improve once your BOTOX has totally worn off as the injections can cause new nerves to sprout lower in your face when the eye spasms are stopped. Once the old nerves start working again(when the BOTOX wears off) the new nerve sprouts disappear thus improving symptoms in the lower face.Are you back to wearing your contacts again?
Thanks for posting, Anna and hope that you continue to improve. Shirley in Arkansas
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Posted by: ANNA FUZIE ®
01/03/2003, 14:55:19
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Hi Shirley,
Thank you for the information. Because I am an RN does not mean I know everything. I do not and while I have learned quite a bit about this disorder I still continue to learn and your post has been very informative. I have had to educate my family doctor as he had no idea regarding this condition. In fact, after attending the conference in August I had a follow up appointment with him and gave him a packet and told him that he needed to become as informed as possible regarding this if he was to remain my family care doctor. I was very frustrated with him in the beginning because he initally went right to giving me Valium (which did very little to relieve my symptoms) and was kind of disapproving when he found that I was taking ativan and artane. He since has become very helpful and knowledgeable.
I do think the contacts as I said in my last post, exacerbated what was probably already there because I was having signs and symptoms.
Again, thank you Shirley for your input...it was very helpful to me.
Wishing you well in 2003.
Anna
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Posted by: Kelly Saffell ®
01/04/2003, 09:47:48
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I'm just getting in on the tail end but I'm glad you are better. I was at the conference as well but I don't think I met you. I had to leave mid day on Sat to get back for a banquet for my husband. It is great that you were able to increase the knowledge of your doctor! My husband is an RN as well (oncology) and a fireman. I take klonopin and parsitan (antiparkinsons from Canada) in low doses and they both seem to help my symptoms, along with increasing the botox from 100 to 140. I stil can't drive more than 5 miles and don't "do" alot other than take care of the girls (7 and 4) but 3 years ago I couldn't even give a bath so I am happy!
Kelly in Dallas
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Posted by: June in Toronto ®
01/05/2003, 08:12:33
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You've shared so much with us Anna, I do hope you won't continue to lurk - we need your support as much as you might need ours.Thanks and God Bless June in Toronto
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Posted by: ANNA FUZIE ®
01/05/2003, 10:10:31
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else and all I might of missed...
I posted again last night but for some reason my post didn't get on the board.
I wanted to tell each of you listed and anyone else I might have missed how much I appreciated your responses. I haven't post much before because of my schedule and because this is still kind of scary.
I have to say Shirley that I am glad you talked about that Friday night in the Meige breakout group...I was so distraught with the person speaking... I left the group just sobbing because he was rather glib and unhelpful and I thought...I hope this isn't going to be like this all weekend.
I did not realize how much I needed to be able to vent until just this past few days...it seems I have quite rambled on and on and I so appreciate the support here and I think each of you have helped me a great deal and I hope I can do the same. Despite doing well now... I am terrified that it will progress. (So much for being a psych nurse who runs a busy emergency psych unit)... :). I have a really close doctor friend who has been very supportive and understanding...his father it seems suffered from the same condition for many years. Other than him...even children, family, friends and supportive staff really do not
understand no matter how they try. That is probably true with most things. And I hear exactly what you mean Kelly...it is very depressing at times. My children are older 20, on her own...18 working on being on her own and my 14 year old...(would like to be on her own!) but they have been supportive and helpful as much as they can. I think it scares them to see me not feel well...they're not used to that and when I have seen the botox doctor...he continually says...you need to slow down...calm down...etc. It's hard to go from 60 to almost 0 and not be able to be at the speed I once was. But I am almost there.
Thank you for allowing me to ramble on about all of this. I so appreciate the support and each of you have a unique, soothing way of responding. I will definitely not lurk as much as I have in the past.
I can't believe Shirley we were in the same room. I am sorry I didn't not get to meet you or the others there. I was pretty distraught after that first breakout session and felt that the doctor was pretty unsympathetic and not as knowlegeable as he should have been. However,
the rest of the weekend was very good and I am hoping to attend the next one this year.
I am off to work. Have great day. And thank you to each of you listed for being so nice and responding.
Anna
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Posted by: Shirley-Arkansas-USA ®
01/05/2003, 14:09:51
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Hi Anna,
You just ramble on all you want to. I've certainly done my share over the years.
Back to that speaker-In my opinion (and in hindsight)unless an expert can be the speaker for a particular topic, I feel that session should just be eliminated. The doctor was pleasant and I'm sure a very good physician but not up on Meige by any means. I was cringing through most of the session. People were there that really needed and wanted information and guidance and most left, like you, very upset and frustrated. I cornered a couple of people before they left the room to offer some additional information. I was actually flabbergasted (sp) by some of his responses.
That particular session would have been more valuable eliminated and the people allowed to go into a different session. I don't make those decisions, though and of course this is all after the fact. I am sorry for you, that this was one of the first things that you heard. It was quite obvious that most of the people that were in the room wished that they weren't. I can only assure you that this is not usually the way that things work and is one of the very few talks at a conference that I've attended that I felt like getting up and walking out.About being scared that it will progress-I was at first, probably at least the first year but that has gotten better for me as time goes on. I think that this bulletin board and the foundation and the yearly conferences have all helped me with that fear-and talking about it here. Talking about what I'm actually afraid of. I've seen and talked to people with symptoms far worse than mine and also people that aren't as bad as I am. As far as my eyes go, I think that I have probably already encountered "the worst". I certainly could develop other forms of dystonia but I feel like I will be able to deal with whatever comes along as long as I have knowledgeable physicians available and treatment options. I would like a cure but I don't expect it and I don't count on it. My job and my independence have already been taken away from me. I'll survive that and find things that I can do-like this bb and taking care of my dad and training a new puppy. :-) I'm just not scared like I used to be and I want that for others, too.
I do miss my nursing job, so Anna, give someone a kind touch for me. Shirley in Arkansas
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Posted by: Delaine Inman ®
01/05/2003, 15:26:02
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I like the way you slipped in the word hindsight. Very nice touch. I know I'm not as bad as I was the first year and I'm no longer spending time worrying about how bad it might get. I realized it was not good for me, a waste of time and was a negative attitude to have those thoughts in my head. A cure is possible, remission is possible, anything is possible. I choose to be positive, always have hope and never give up that I can still touch people. There are times that I wish for a nurse's recovery 12-step program. I miss not being able to practice my profession and yet I still know I will always have the heart and soul of a nurse. It was nice to get paid to do it, but I'd do it for free if I could. I haven't given up on turning the key that will open the door to be able to volunteer or work again as a nurse someday. In the mean time I touch people in other ways and so do you Shirley. You are Nursing your father and so many many more than you can imagine. All of us can look back and see the gifts BEB has given us despite the challanges it has brought or the things it has stolen or changed. Life is never stagnant, it is always unfolding in ways and directions we could not have imagined. If we look hard enough from a distance we see that goodness and strength have unfolded as well.
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Posted by: Virginia ®
01/05/2003, 15:26:28
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Since the breakout sessions are primarily Q&A, it is a shame not to have a knowledgeable and experienced doctor there. I went to the Meige session in 2001 with Dr. Daroff and thought he did an excellent job. I would have gone to the Meige session again (since that is more of a problem for me than my eyes), but was forewarned (thanks, Shirley). I'm going to remember that when we have the conference here in Alabama.
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Posted by: Kelly Saffell ®
01/05/2003, 16:20:55
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Anna,
It took me a long time to be able to quit putting so much pressure on myself to continue life as "normal" even though it was not. I have always been a classic overachiever : honor grad from high school, homecoming queen, graduating from college at 21 with a 3.9, passing CPA exam on my first try at 22. I jut flat refused to admit that I just couldn't do it anymore. Then one day as I was driving home from work with the girls (then 4 and 1) my eyes were spasming so hard that my throat started to spasm to the point that I was dry heaving while driving. When I allowed myself to stop, I realized that I was losing my desire to live at all and I knew then that my family and I deserved more so I left my job on disability (short term, long term and now social security) and I drastically changed my lifestyle. I listen to books on tape, plan doctor appts so my husband can drive me, get help with the girls when needed, and moved everything I could to within 3 miles of home (including hiring a mobile grooming van to come to the house to groom the dog). I have developed some lasting friendships, and through the love and support that I have received I had the courage to start a support group here in Dallas and have been interviewed by TV, magazine and newspaper about my condition. I hope you will continue to be active here and to share both your disapointments and your triumphs with your "beb family."Kelly in Dallas - it is gorgeous outside! The kids went bike riding (I walked behind since I would truly be deadly on a bike) and played basketball with Morgan.
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