Re: HOW IS EVERYONE FEELING THESE DAYS?
Hi June
Ifeel good today it has been 3 weeks since i got my botox b my eyes are still open & no side effects. I can drive without taking my little ice pack along. Hope you had a good day.
Colleen IL
Re: Myobloc
Colleen,
Have you been able to tell any difference in the Myobloc injections versus the botox that you were getting before? I'm glad that you are able to drive. Sounds like you are doing well. I'll be going up to St.Louis for my botox Wednesday.Shirley in AR.
Re: Myobloc
My eyes feel better with Myobloc than with botox a.No more side effects than with botox a. I talked to my Doc. today.I told him my eyes felt weak & he told me that is what he wanted.
Good luck in St.Louis. Do you know if you will get Myobloc?
Colleen
Re: Myobloc
Colleen, I don't plan to at this time.. I haven't discussed it with Dr.Perlmutter at all. He might suggest it when I go in this time since I am thinking about having surgery done. I'm not real keen on the idea of getting the myobloc, yet. I'd rather wait awhile and see how it works on people. You seem to have had good luck with it. Keep us posted on how things go and how long it lasts, etc. We are all interested.
Re: COLLEEN
That's great, Colleen, that you don't have any side effects from the injections, and that you can drive. Thanks for telling us. YOU HAVE A GREAT DAY. June
--modified by June in Toronto at Sat, Feb 24, 2001, 06:22:16
Re: HOW IS EVERYONE FEELING THESE DAYS?
Hi June,
You've been doing a good job keeping things going.
I've been having a rough time lately. Yesterday was one of those total shut down days where I spent most of the time on the couch and went to bed early. Couldn't see to do anything else. The hubby had Cheerios for supper. I'm trying to keep going but can barely get my eyes to open. Headaches are coming on due to the strain of trying to see. I'm gritting my teeth and making noises to keep my eyes open. My doc has been out of the country but came back early so I get to go in a week before my scheduled appointment. This doc and his staff are wonderful. So June, thanks for asking, but I feel like s---. I am addicted to the bb so will struggle and get on, anyway. Things will get better.Shirley in AR.wishing that I could participate more.
Re: HOW IS EVERYONE FEELING THESE DAYS?
Shirley, Yes, things will get better, although I'm sorry you've been having such a hard time. I'm glad you have an earlier appt. than originally scheduled. I've been having aching in my eye, so have an appt. in the morning to have the pressure checked.
Evelyn
Re: HOW IS EVERYONE FEELING THESE DAYS?
I'm glad that you are going in and having it checked. You can't be too careful. We all want you "seeing" for years to come. Let us know what the doctor says. I'll be thinking about you and hope that you've just been on this computer too much and your eye is tired. Not that I'm trying to get rid of you. You have become a friendly permanent member of the bb group.Take care,
Shirley in AR. who is headed to bed before she has to feel her way up the stairs.
Re: EVELYN
Good luck, Evelyn, with the pressure testing.
A special hug to you (I think we all need them for the February blues)
June in Toronto
--modified by June in Toronto at Sat, Feb 24, 2001, 06:22:51
Re: EVELYN
Thanks, June. I like hugs. I'm going back to page one and post what the eye dr. found.
Evelyn
Re: SHIRLEY
Hi Shirley, Sorry you feel so punk - I'm getting that way too - can't wait until March 7th for those injections. I know its my fault though as I've delayed them on purpose - but one has to try and live around this damn disease. I'm getting the headaches as well, but so far the only noises I'm making are whining ones!!!! Glad your doc/staff are great - that at least helps. Hang in there - better days ahead for us all.
Hugs
June inToronto
--modified by June in Toronto at Sat, Feb 24, 2001, 06:06:23 --modified by June in Toronto at Sat, Feb 24, 2001, 06:23:59
Re: HOW IS EVERYONE FEELING THESE DAYS?
I had a temporary MIRACLE CURE for the past three days. Today failed me though! What was my secret? ...drum roll please...I picked out new carpet for my new house! The power of the mind is an amazing thing! I LOVE to decorate and have a new house to do totally over from scratch (slowly as money permits). This carpet decision has held me up on doing anything (choosing furniture, drapes, blinds, etc.) Once I finally made the decision I was so excited about going out to choose all this other stuff that somehow my BEB has been 90% for 3 days. I drove more the last 4 days (by myself) than I have in 2 years! It has been amazing! I haven't had this good of 3 days since I got this a few years ago.I have wanted to discuss this "power of the mind" thing on the BB here, but have been too scared because it crosses over the "it's all in your head" issue and I don't want anyone mad at me. Unfortunately, today was not too good. I did drive all day (which I haven't been able to do until this week) but it was a little difficult at times, but not dangerously bad. Although maybe today was bad because I hardly slept last night cause I was so excited over my decorating ideas - silly me! Hugs to all!
Shanasy
Re: HOW IS EVERYONE FEELING THESE DAYS?
There is nothing wrong with discussing the power of the mind thing. We've done it before. Adrenaline has been discussed. I think that sometimes it may work for us and sometimes against us. A combination of the excitement of doing something you truly love and the adrenaline and you did get some botox fairly recently. I think that it is almost like one of the "tricks" and the brain is fooled into thinking about something else for awhile that is "overwhelming" and just can't deal with the overload and instead of shutting down your eyes, the brain gets it's wires crossed and your symptoms go away for a while. Hey, three days is good. I like the idea of three really good days.
It probably is "all in your head" but that is where the problem is.
I'll bet that you will still be able to do some decorating. I tend to do better if I am working on a project like painting a room or cleaning out a cabinet.
I'm glad that you had some good days. It makes me smile.Shirley in AR. No one could possibly get mad at someone called
Puddin Head.
Re: HOW IS EVERYONE FEELING THESE DAYS?
Hi Shanasy,
We had a house built almost four years ago, and what fun I had picking out new carpet and all the things involved in putting a new house together. We got almost all new furniture and it was so much fun. I did get tired, but the outcome was worth it. I picked seafoam green for the carpets, and my accessories are burgandy/cranberry, pink and some seafoam green. It turned out really nice, and even little children who came for Halloween once, looked in and exclaimed about how pretty our house was. I'm glad the decorating has caused such good things to happen for you.
Evelyn, who had been feeling great with all the sunshine, but worked too hard, and has had a couple of bad days.
Re: HOW IS EVERYONE FEELING THESE DAYS?
Hi Evelyn,Well beisdes being Tofu Sisters - we also have the same taste! My new carpet is seafoam green mixed with light slate blue. I also decorate in burgandy with my greens. Shanasy, where its too icy today to see if I can drive 5 full days in a row.
Re: HOW IS EVERYONE FEELING THESE DAYS?
Shanasy,
I'm glad I checked on page 2. I usually only get the first page read. That's really someting that you like the same colors as I do. Makes a good combination, I think.
Evelyn
Re: HOW IS EVERYONE FEELING THESE DAYS?
My eyes still get very tired quickly and lately I've been really pushing it, which I know is dumb. But sometimes I just hate the idea of spending so much time asleep. We had two days that were nice enough to work out in the yard, but that bothers them too if I go too long. For the most part I've been hybernating indoors in my dimly lit world.graceanne in port orchard
Re: Grace Anne
Hi Grace Anne, so what have you been doing to push yourself so much these days? I'm envious about your 2 nice days that you were able to work outside - our weather has been so cold, and I don't have a garden anyway - just 3 balconies, that I do plant on in the summer months (BUT THAT'S DEFINITELY NOT THE SAME AS A GARDEN).
I know what you mean about your eyes getting tired - just keeping them open is such an effort. I always seem to close my eyes (on purpose) at every opportunity, on the telphone, listening to music, even talking to my hubby or a close friend, as they understand why I'm doing it. Also when I'm out with my dark wrap-arounds on I close them if I'm in a restaurant talking, in the car (not driving of course - LOL) or on every possible occasion - just to relieve them.
Spring is around the corner (isn't it?) - chin up
Hugs to you
June in Toronto
Re: Grace Anne
June, I envy you your lovely cold weather and the snow that all in the eastern part of the nation have been having. We've had such a blah winter and I feel cheated. Summer is so hard on me and I always feel that once I live through it, I have earned the right to a lovely long fall (which we did have) and a snowy, cold winter. Most people think I am cracked, but it takes all kinds. Right?Sally in the Pacific Northwest where it's getting muddy
Re: Sally
Right Sally!June in Toronto, where it snowed again tonight and ice rain is forecast - then tomorrow its to be plus 7 degrees - crazy!
Re: Sally
Lovely!! Enjoy!!!!!!!
Sally
Re: Grace Anne
I would like to say I'm into genealogy, but I get no where looking up things on the net. It's very time consuming and addictive. Good thing I'm not hooked on casinos. Genealogy is bad enough - it's like 'well, I'll try just one more....one more....' Then I also am trying to write, get on the treadmill, listen to my talking books, figuring out who's cooking dinner - me or Shari's. Those nice days only lasted the two days, then it was so so cold. I converted my garden into an oriental-like rock garden. I'll probably get a patio tomato this year. I do plant lettuce in a raised bed which my husband built for me.Tomorrow we're taking a train to Portland, only cause we need something different to do and we need a 'run away from home time', but also because we love trains and the special fare of $11 each was too good to pass up. Besides my husband is a big train freak. graceanne in port orchard
Re: WHAT ABOUT THE GUYS - HOW ARE YA ALL?
I think the guys must have gone fishin (that's as in ice..I mean)! It would be nice to hear from you all. Give us up-to-dates please.June in Toronto, who is trying to do double duty for Shirley who is feeling like ..... and must not be disturbed at the moment!
Re: HOW IS EVERYONE FEELING THESE DAYS?
Thanks for asking, but my stress level has been high and my computer cable system has not been feeling well either. I'm still here but not doing as well 2 weeks ago. Hopefully things are on the upswing.
Re: DELAINE
Sorry about your stress level, Delaine, do you ever consider that machines feel stress from us and act up even more? I feel that way - when I get upset - machines ALWAYS go wrong. I hope things get better for your soon.June in Toronto
Re: DELAINE
The stressful situation seems to be improving, but my life will be changing and I will be going through some new coping situations but I believe it will be a positive experience. My daughter and granddaughter may be moving in with us for awhile. My son from Texas came to TN to help her move and support both of us with his presence. I adore my family so things will be fine. Thanks to everyone who has been sending me prayers, positive thoughts and love. I felt it and it certainly changed a very difficult situation. Friends and family are so wonderful.
Re: HOW IS EVERYONE FEELING THESE DAYS?
You have all been so supportive so wanted to give you an update--my
flu is on its way out--still have cough and congestion--will call
neurology tomorrow and see about the botox injections for Tues--I really
would like to be in good health when I receive those--the stress of
just getting them is bad enough. It's been a rough week--my darling
golden, Beau worsened so quickly--couldn't walk or relieve himself--my daughter and I took him yesterday and together with the vet escorted him over the heaven's gate while he still could smile--a part of my heart is broken with missing him but another part of me is doing what I can for the good memories and to memoralize my best friend in my heart...I didn't believe it would hurt this much but how could it not, I loved him so and the love was mutual....Thank you all for your support and prayers--there's another little one waiting out there for me when the time is right. God Bless you all.... With Love, Joanne M. San Diego, CA
Re: HOW IS EVERYONE FEELING THESE DAYS?
I'm new to this bulletin board. Question where are the guys? I feel like I'm definitely a minority group of one!
I have lots of questions. Had these things for over a year now, and know very little about them. My Dr does'nt say much except that the botax is about the only treatment...and not a very good one. Have any of you had the surgical prccedure and does it work? Well this good for a start...would appreciate any info Thanks Tom
Re: HOW IS EVERYONE FEELING THESE DAYS?
HI Tom
Welcome to the bb. Do you have any Dystonia with your bb?Botex works really good for some people & so does some medications. Are you taking any thing now? Keep asking your Doc questions if he doesnot have any answers go to a different Doc.
Good Luck Colleen IL
Re: Attn Colleen
Hi Colleen,Just curious, where in IL are you from? If you're from No. IL or can get up here, we're having another "Blinkfest" March 21st (just a bunch of blephos for lunch at TGI Fridays in Rockford). We'd love to have you join us. Email me separately if you are interested so I can put you on the "reminder" list. Shanasy
Attn. Shanasy
I could not find your e mail not very good with the computer.
Carbondale is in the southern part of the state home to Southern IL.University.You may have heard of it.Would love to come if it was closer.Sounds like a lot of fun. Ihanks Colleen
Re: Attn. Colleen
Well duhhhhhhhhhhh! Clunk ME on the head! You couldn't find my email because I forgot to make it accessible to you! (Now you can just double-click on my name above and it should work. Sorry - the botox must have over-toxified my brain!Yep Carbondale sounds like a long ways away! Too bad! Well the invitation is still open in the even you have any relatives or some other reason you find to come up north. So far, we have about 9 ladies, 4-5 of which are on the BB here. Your almost neighbor
Shanasy
Re:Welcome Tom
Hi Tom and welcome to the bulletin board. You are a minority here but there are guys that post and several of them have had surgery for their Blepharospasm. I'm sure that they will come around and say hi. I know that us ladies get kind of gabby at times but I do wish that the guys would post more about whatever is important to them. We do have several regulars so just give it a little time and they will post. It might be helpful to you if you go back and read as many of the past posts as you can. Just skip over the gabby things and read what is important to you. The BEBRF main pages at the top of this page is also very informative if you click on it. I believe that the surgery is mentioned there, also. If you are considering surgery, read up on it as much as you can. You can contact the Blepharospasm Foundation if you have not already done so. The address can be found in the Welcome to Newcomers at the top of this page. They have videos of the surgery that you can watch. You would also want to have someone who is very experienced at doing the surgery and not someone that does one every once and a while. Your best results will be from someone very experienced at doing this specific procedure. Don't by any means let someone "practice" on you.
My first doctor didn't tell me much either but I have gotten a lot of useful information here and from the foundation and I also attended the yearly conference last August. It is a rare disorder and a lot of medical people have never heard of it much less know how to treat it.
I'm 49 and was diagnosed about 2 years ago. I have changed doctors several times since then and now am at the point where I am also seriously considering having surgery done.
There are a number of medications that also can be tried to help. There is no cure but there are medical and surgical treatments available.
Ask as many questions as you like and we'll try to answer them the best we can. There are many knowledgable people on this Bulletin board.Shirley in AR. Alan, Lynn, John, Andy, Marcellin, Larry---Talk to this man and let him know that you are here. Sorry if I left somebody out. It's been a long day.
Re: WELCOME TO THE BB TOM
Welcome to the beb bulletin board, Tom. I've had beb for over 6 years and botox works well for me - it last 4-6 months (I do have 3-4 weeks of side effects after the injections), but overall it does a good job. Medications did not work for me at all.
Shirley told it like it is - so I won't repeat.
I hope the other guys come out of hiding to greet you.June in Toronto
Re:GUYS, MALES, MEN ... come out, come out wherever you are
Hi Tom ... Welcome to the BEB BB. Hopefully some of the guys will wander onto the board and keep you company. We gals tend to outnumber and out-talk them, but when they're needed, they lend their support.
I am not going to talk much tonight as my eyes are closing down bigtime. Hang in here though, you'll get lots of support and encouragement.Sally in North Idaho
Re: HOW IS EVERYONE FEELING THESE DAYS?
Hi Tom,
I don't have beb, but I can relate to the diabetes. I've been one for over forty three years. Got it when I was ten. The way I found out about this board, is that Judy, the moderator, and I have been friends since fourth grade. Hey, I've been to Omaha. I had a cousin who lived there years ago, and we went through there just about three years ago. My youngest brother lived in Lincoln, Eagle and Valentine. His wife is from Nebraska.
Evelyn in Washington, where we had a cool but beautiful day.
Re: Reporting on my visit to the eye doctor
Because my eye was aching I went to the Opthamologist yesterday morning. He found that my pressure was okay, but also that the stitch that was to have dissolved about now, hadn't. It had partially come apart and had even fragmented a bit. He took the small piece out of my eye, which relieved the aching somewhat. He said the stitch was sticking out too far also, whch was another reason for the aching, and was putting small scratches on my cornea. He said if it gets more painful, to go back to the surgeon and have him make a little slit so he could remove the stitch. The cataract is growing in intensity very quickly. He prescribed antibiotic drops, which seem to be helping.
Evelyn
--modified by Evelyn at Mon, Feb 26, 2001, 00:38:47
Re: Reporting on my visit to the eye doctor
Hi Evelyn, Glad that you found out what was wrong and your doctor was able to at least partially correct the problem. You don't need any scratches on your cornea. I'm sure that the antibiotic drops will help somewhat. Keep "an eye" on it. When do they think that they will be able to do your cataract surgery?Shirley in AR.
Re: Reporting on my visit to the eye doctor
Shirley, I have an appt. on Mar.20, and at that time they will schedule the cataract surgery. Today I went to get a perm. I asked the lady that did my hair if she had heard of blepharospasm. She said yes, that she had a lady client that came in with bandaids on her lids to hold her eyes open long enough to get her hair done. I told her that this lady would enjoy the bb, but I guess she doesn't have a computer. That's another BEB lady, here in Arlington, who needs support .Maybe eventually I can find out who she is.
Evelyn
--modified by Evelyn at Mon, Feb 26, 2001, 21:30:50
Re: Reporting on my visit to the eye doctor
Evelyn, You are such a dear person. You could email Mary Smith at the BEBRF and get some of those little cards that can be handed out and carry them around with you. You could give your beauty shop lady one of the cards to give to her in case she is not familiar with the Foundation.
One of the things that bothered me the most when I went to the BEB conference in Kentucky was the fact that so many of those people spoke of feeling all alone with this with no one to talk to and no one that understood. They asked how many people had computers and lots of hands went up and then they asked how many people were aware of or used this bb and only a few hands went up. I stood up and did a little plea, actually for them, to get on the bb if they had a computer or get one if they did not. I almost cried at times when people related that they felt totally alone with this disorder and were very depressed. I found this bb fairly quickly and I am thankful every day that I did. I wish that we could reach everybody out there.
Thank you Evelyn for wanting to help us. You get bonus points for this one and a great big cyber hug.Shirley in AR.
Re: Reporting on my visit to the eye doctor
Shirley, I wish I could do more. Right now, my vision is too blurry to even try to find how to order the cards. But that's a good idea.
Evelyn
Re: HOW IS EVERYONE FEELING THESE DAYS?
Tom;Hello, sorry to see another person here but if you are going to have this mess you might as well have contact with others who know what you are dealing with. Your Dr is right when he said there is a lack of decent treatments for this condition. I have had BEB for about 7 years now but only the last 2 years have been truly miserable. I have tried several medications and been very dissatisfied with them all. The Artane had such impact on my memory I kept forgetting why I was taking it and the Kolonapin was a nightmare. I have steadfastly refused to go for Botox (very stubborn) and surgery for me is a last option, they can cut on my eyes after I’m dead (I’m an organ donor with my eyes designated for a politician). Currently I am experimenting with Human Growth Hormone. I was on the verge of going for Botox before I tried the HGH but there is no way now. I went off the HGH almost 3 week ago now just to confirm that the effects I’ve gotten were from the HGH and not from dropping all my medications. During the last week I have started gaining weight, loosing ground at the gym, back to not sleeping well and my eyes have taken the express to the crapper. I have ordered more and will be back on it as soon as it arrives. We all respond differently however to different treatments, the point being you may want to try other alternatives before you opt for an irreversible option. What ever you decide to do, I wish you the best of luck and keep us posted. You will find this to be an interesting (is that a tactful way to put it?) community but we do care John – by the way Sally, sorry I got you name mixed up – I got BEB you know.
Another "guy" here
Hi Tom and welcome to the board. I am one of the few "regulars as far as men go on here and the ladies tell me that sometimes I talk too much. Actually they are very nice and contribute an awful lot to people such as yourself who are just finding out about this disorder.I am one of those that the Botox does not work well on. I have had a Limited Myectomy in Aug 1997 and and Upper Extended Myectomy done by Dr. Richard Anderson in Feb of 2000. I am scheduled to go in for the Lower Extended Myectomy on March 8. I first developed this disorder in 1996 and my case is very similar to most on this board with the exception of the botox not working. There are a lot of people that it does work for and that should certainly be the first avenue of attack along with medications. Please feel free to contact me or EMail me at any time. I would be more than happy to answer any questions you might have. Good Luck.. I care.
Re: HOW IS EVERYONE FEELING THESE DAYS?
Dear Tom, Welcome aboard...You will really enjoy the BB after you get over having to write to all the women. If you are new to these conditions it will take you a while to "get it" I have had BEb and
Apraxia for over one year now, but the first six months and six doctors later-- I finally have come to terms with it and had surgery and take medications and have Botox every 7 weeks... and am almost living a nornal live again. I drive, read, and work a stressful 40 hour week but have learned how to take care of myself. That was the hardest lesson to learn. when you are tired, rest. when you are hungry, eat etc. Some times I make plans to do something, but when the time comes, I am unable to do what I had planned and have to say no... that is ok... you need to learn to take care of yourself and find a wonderful doctor to help you do this. I wish you the best in finding the answers.. Mary
Re: HOW IS EVERYONE FEELING THESE DAYS?
Dear June-=- Please enlighten me-- what are Myoblock injections? I just had my Botox last Thursday so I could go on vacation this Friday and have a few good weeks between injections. I do not know what Myobloc is and would appreciate some information. I have not posted in a while so maybe that is why I am out of the loop... I have BEB and Apraxia and have Botox every seven weeks and have frontalis slings, so all in all, am doing quite well. Still working 40 hrs a week and driving etc. Need to get on the BB more so I know what is going on... Mary
Re: MYOBLOC
Mary, Myobloc is the U.S. trade name for botulinum toxin type B - a new form of botox. It is manufactured by the Elan Corp.The following is from the BEBRF Newsletter, Vol. 20, #1, Jan/Feb. 2001, p.3.
"Myobloc is a formulation of botulinum toxin produced using a manufacturing process that assures a highly purified toxin in a stable formulation. Myobloc ready-to-use solution does not require reconstitution and is available in 3 convenient vial configurations of 2,5000, 5,000 and 10,000 units providing maximum flexibility for dosing. Myobloc is stable for up to 21 months in refrigerator storage. In the U.S. you can call 1-888-GO-1-CALL, for any information regarding Myobloc, including answers to questions, reimbursement assistance and patient education materials." . I understand it is a thicker solution and may be (?) a little more painful to inject. I hope this helps.
June in Toronto
--modified by June in Toronto at Mon, Feb 26, 2001, 21:39:42
Re: Mary - You Are Doing Well!
Mary, if you are working 40 hrs a week and driving - you are doing so well. That's great to hear. When I get my botox injections, I am out of action for 3-4 weeks - I couldn't go on vacation then if I tried with the painful side affects I experience. But then I go 4-5 months now between injections - I have beb and meige. Hope you have a great holiday - where are you going?June in Toronto
Neurontin
June:Good topic! I've been trying Neurontin for about a month now. The dosage is at 300 mg. x 3 per day. It has dramatically helped my sleeping. Previously I often got up during the wee hours to prowl the house because of various dystonic spasms, one of which was RLS (Restless Legs Syndrome). I now sleep through the night. Let me restate that. I sleep through the night until the puppy wakes me to go outside :) No noticible side effects, perhaps a little bit sleepier during the day. Most likely has descreased my daytime body spasms, though certainly not eliminated them. Can't see that it's done anything for the BEB. The down side, it's expensive! Out of pocket was $117 for a one month supply. Insurance coverage will rebate most of that, however the bucks have to come out of your pocketbook initially. Take care, Judy
blkmn36@earthlink.net
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