Re: info re blepharospasm
Welcome to the Bulletin Board where you will find lots of information and support. Contact the BEBRF if you haven't already. I'm Delaine, 50 and have had BEB for over 2 years. I didn't have good results from Botox the first 4 times I got it and had a partial myectomy after one year of poor results with Botox. The surgery wasn't as much help as I had hoped, but when I got Botox in Nov. I did have some very good short term improvement that has declined but I'm still not as bad as before. I had tried a long list of medications with no results, but just started on a very low dose of klonopin and it seems to really be helping. I have some mild meige which is more noticeable after Botox and when my BEB is at it's worst and I am tired. I've received Botox from 2 different doctors and got 50 units the 5 times I got Botox, usually 10 injections around each eye, forehead and between eyebrows and side of nose. Hope that helps. Delaine in TN where my bulbs are peeking out every where.
Re: info re blepharospasm
Hi Patricia and welcome to the blepharospasm bulletin board. If you haven't checked with the Research Foundation (BEBRF), you should take the time to do that. You can find their address at the top of this page in the Welcome to Newcomers. They have lots of information that they can send to you and contacts in your area and doctors that are familiar with treating blepharospasm patients. There might even be a support group in your area.
We are here to help you in any way that we can. We are all a litte different but are still going through much of the same things.
I was diagnosed about two years ago. I've switched doctors several times. I get a total of 13 injections around my eyes with a total of 100 units of botox. I started out at 50 units. The botox certainly does not relieve all of my symptoms, far from it. I believe that there are probably a good number of people out there that have good results from their botox and can carry on a reasonbly normal life-style with some modifications. There are probably not too many of them on this board though as most of us have quite a bit of difficulty with our blepharospasm and meige and apraxia, etc. Some even have other forms of dystonia to deal with.
My injections are given lying down. I believe that is just a matter of personal preference for the doctor. I have been receiving injections for almost 2 years. I have gotten injections as often as every 6 weeks and now it ranges from 8-10 weeks with 8 weeks being optimal for me.
Light sensitivity is pretty par for the course. Most of us have it to some degree. Some wearing dark wrap-around sunglasses even in the house. Some of us have a special lens tinting on our glasses called an FL-41 tint that can be obtained in different degrees of strengths from Knighton Optical in Salt City, Utah. You have to send your glasses there to have them tinted. It is a rose colored tint.
I can watch very little TV. I cannot read except on the computer when I blow the font size up real large. I can no longer drive. I had to quit my job 2 years ago and am now on SSD. I am 49 years old.
Even though, I get the botox and it stops the hard squeezing and spasms, I still have difficulty opening my eyes. This is called apraxia in my case.
The disorder is very frustrating and some of the symptoms are very strange. We all try to support each other and answer questions and share information. We also have a little fun and humor that you'll notice if you go back and read many of the past posts. Just recently we were talking about our injections so you might want to look over that.
Again, welcome to the board and ask whatever you like. We're real friendly people.Shirley in AR.
Re: info re blepharospasm
Hi, Patricia,First, have you contacted the BEBRF for data? They have a lot of historical data on patient's experiences that may be useful to you. I have had BEB for close to 40 years. I did not have a correct diagnosis (misd'd TWICE by different Doctors) for the first 30; have been getting Botox shots since 1990, coincidentally the same year Botox was approved by the FDA for BEB treatment. Your experience with the shots sounds much like mine, except that my Dr's (6 of them, 3 East coast, 3 West coast) started with lots of injection points (18) and have decreased them (now 10) as they got better at site selection. Most Dr's that I have read about are VERY conservative with their dosage; Botox is about the second most toxic stuff on earth, and they are very careful not to overdose. Each of their patients reacts differently to the toxin, so until you both are satisfied with a site pattern and dosage, just expect something a little different each time. Bedside manner is a HUGE variable - no two doctors even remotely alike. Some insist you lie down (fainting is a possibility), some are slow and careful, others believe the quicker you get it over with the better condition the patient will be in (my current Doc takes at most 15 seconds for each eye). If the current dosage seems inadequate, talk it over with your Doc. Don't demand a LOT more - you have no idea how serious the toxicity is. Crossed eyes is a MINOR side-effect of overdosing. But do talk with him at length about your progress at each session. I have no personal experience with Meige - but I'm sure someone else here will fill you in. Be a bit more patient - it will get somewhat better, but at the same time you should prepare for some serious adapation of your lifestyle. And keep your sense of humor - you will need it! --- Lynn
Re: info re blepharospasm
Hi, Patricia. Welcome to the BB where we all try to listen and help and are here to cry and laugh a bit, too. I am 66, have been diagnosed about two years ... BEB, some apraxia and Meige. Spent a few years prior to that trying to get a diagnosis, as many do. My mother also had this disease. I have been having Botox injections every two months since October, 1999. I now have the full vial of 100 units each time, 6 injections around each eye. After the December treatment I was doing great and was so pleased, but the ones last week did not go nearly as well; mostly my fault. I have blurred vision and droopy eyes and bruising around them. Next time will be better. I had been able to drive again to nearby towns, nothing long haul as it makes me tired. I could not have driven across the street today, so it comes and goes. I am extremely light sensitive; have never heard anyone say that their photosensitivity improved with Botox, and no doctors promise that either. Watching TV is a struggle and I don't do a lot of it. Reading was the love of my life (I had been a librarian) and I became almost totally unable to read, except on the computer or big headlines. I had regained some of my reading ability, but don't know how that will go now with my last results. Do you want to tell us more about yourself? .... where you live, your age, working/not working, any special interests, etc. Hang in with us and we'll try to be helpful. Bring along a sense of humor, because it's frequently needed. Sally in North Idaho
Re: why'd you say that Sally?
Sally,Why did you say "MOSTLY MY FAULT" pertaining to the botox not going so well? What could you have possibly done to make the botox not work so well? Do you know something I don't? Shanasy PS How long does your blurry vision last? As long as the botox lasts? I call it fogginess and it drives me crazy - it is like looking at the world through saran wrap. Is that what you experience?
Re: why'd you say that Sally?
Shanasy, you must have missed her post on the subject. She takes blood thinners, and took them right up until she got her shots, which I think she was told not to do. I will let her respond more on that subject if she wants. I'm here really to tell you that I saw Doctor Burns last Thursday for my injections, which were 100% better than the time before. I took them very well and she had high praise for my pain tolerance. I knew you had had them before me, and I asked if yours were better the second time around, and she said she doubted you would be back. I know you experience blurriness, which have never been a side
effect for me. Let me know how you are doing. Having had botox from more than the one Doctor, I can say that I think she does a wonderful job with that needle.
Re: why'd you say that Sally?
Joanne,
That is interesting that you asked the dr about me and how I did with my last shots and that she said she didn't think I would even come back. Actually, I already HAVE an appt. set up for March 20 (planned specifically before an important vacation). Well the funny part is... is that I don't remember how much the shots hurt. I don't remember her giving them to me. I don't remember even being in the chair. Mike took me out too lunch after the appt. and I don't even remember THAT!!! I had to guess at my own dosage, but I took 3 mg of Lorazepam (generic Ativan) 45 min before the botox appt. - apparently it totally wiped out my memory - which is kinda spooky! I do know that after my FIRST botox shots were given, when I got in the car afterwards, I cried hysterically. The second time I didn't (at least that's what my husband said). I am curious, (whoever is reading this) has anyone else experienced total memory loss after taking this same drug?
PS How am I doing? Don't think it worked as well this time as the first time. Lots of blurriness. Can't drive on sunny days (I could the last time I took botox). All in all I guess it is worth it - some freedom is better than none.
Re: Ativan and memory loss
Shanasy, Amnesia is one of the side-effects of Ativan. It can be given pre-operatively just for that reason. In taking a dose larger than you normally would, you definitely, created the amnesia effect. Shirley in AR.
Re: why'd you say that Sally?
Shanasy, I have never taken 3 mg of Ativan at one time, but can imagine that it wipes out your memory. Would never have thought of doing that, but it's an idean, might do the same the next time I go for shots.
Christel in CA.
Re: why'd you say that Sally?
Hi Shanasy,Yes, it is more of a fogginess now that I think about it. I keep trying to stretch my eyes open more widely and make it go away. So annoying. It is better today. Yesterday was a terribly bright day and my husband said he would take me to visit our grand-daughter at college because she had some things here that she wanted and I had never been to her dorm. I could barely pry my eyes open yesterday and didn't enjoy the trip much. Mostly good roads but two little passes that were very slick and one recent wreck to go around. Anyway, we got there, took Angelique out for lunch and came home before dark. She had to lead me around but none of her friends were there ... I don't think she would have been embarrassed anyway. She is very mature and compassionate. As far as being my fault, I posted on my Botox day that I had forgotten to stop taking Ticlid (a blood thinner) for a week or so before the injections. No one had ever told me to do so, but I even have to do that before having my teeth cleaned, so decided a while back after a major black eye from Botox that it might be a good idea. The treatments since then had gone much better. Anyway, I mentioned to the neuro that I had not done that (remember, he never told me to in the beginning) and he said that was bad because the injections would bleed, which they did, and that causes the toxin to spread. He had already opened the vial so we couldn't postpone for a week. He put pressure on right after the two injections that bled a lot, and had me hold pressure on while he finished. I do have some bruising this time. So that's what I meant by it probably being partly my own fault. The December injections were just wonderful and I was hoping for such good results again. Oh well, next time (April). Can't win 'em all. Sally
Re: why'd you say that Sally?
I have the same "foggy eyesight" that you have from this series of Botox. I've only had Botox twice. I didn't have this problem at all with the first set. You're right. I was thinking last night that it's like looking through a fog at things. They aren't blurred like when you take off your glasses and look at things. Someone here said one to three weeks and that it doesn't happen every time. I hope not.
Re: Foggy Eyesight
I often think that, not only do I get foggy eyesight from Botox, but also from (perhaps) a build of the preservative-free drops, creams I use. All that added to some `floaters' and hey the world is always foggy! June in Toronto - except the day isn't to day - foggy I mean.
Re: Foggy Eyesight
what kind of creams do you use? I am leaving for Fla Friday. Erica will arrive just an hour before us. I am getting very excited.
Re: Foggy Eyesight
I use lacrilube gel (maybe its not really a cream!) at night, every night, 365 nights of the year. I believe this, and the other drops of various descriptions, fog/blurry up the eyes. Have a great time in Florida. June in Toronto
Re: info re blepharospasm
Hi Patricia,
I am 52 and was diagnosed with BEB about 2 years ago - started botox injections then. I had probably had it a year earlier, but took a while to get diagosed. The first couple of times I had botox it worked well and I thought it would always be that way - not so. After that, I wasn't getting much relief with the botox and had a partial (upper eyelid) myectomy last Nov. I still get botox in the areas where the muscles were not removed. I get 13 injections, 60 units of botox, lying down. The other doctors that I have seen have given them in chairs, reclined - didn't seem to matter much to me what my position was. Frequency has varied from 4 weeks to 6 months (3 months before and 3 months after surgery).I am also sensitive to light, but I have been for quite a while. I have 2 pairs of glasses with the FL41 coating (different degrees of shading). I can now read, watch TV, use the computer, etc. as long as I don't overdo and remember to use eye drops. I have Meige and get botox in the area of the bridge of my nose (hoping to ease breathing problems). I also have spasms and squeezing in the lower face and jaw. These symptoms started showing up about 6 months after I started botox. Welcome to the board and feel free to ask anything (literally - why not, the rest of us do). Virginia in AL, where last week's warm spring-like weather was a tease and now we're back to winter yuck.
Re: info re blepharospasm
Welcome, Patricia, glad you found us, this is a good place to be.
It's home away from home, cyber home, actually, and we'd be quite lost
without it.
I'm almost 66 and started having Symptoms of blepharospams about 6 years ago with meige following about a year later. Wasn't diagnosed until
2 years ago. I had Botox injections several times (lying down), but
they didn't do anything for me. Am taking Ativan in the morning and
Konopin at night, have only temporary relief. Will soon try the new Botox B, which is called Myobloc and was recently released by the
FDA, in the hope of achieving more positive results. I had to give up driving about 8 months ago, something I miss very much, but have hope
to be able to drive again one day. However, I'm lucky that I am able to read books and can also watch TV or rented movies most of the time, as long as it's not some wild action stuff. Faith, hope and this bulletin board keep me going. Do take the advice given by some of the others on this board and I hope you have someone supportive in your life.
Christel in Calif. who hopes you stick around and let us get to know you better.
Re: info re blepharospasm
hi Patricia, I too am new at this web site and I am so glad I found all these wonderful people. I was feeling low and just once that I wrote to my new friends I felt better. I am 45 and I am was an elementary school clerk and that was a lot of entering a lot of data in the computer and I
filed for workmens comp per my principal and I was moved from my location and now I'm at human resources office and I'm still working on the computer and my first injection was in december and it just relieved the tightness around my eyes. my next appointment is in march and by that time both my eyes will be closed. I don't drive anymore and TV well I have to hold my eyes open. and reading which I loved, it's hard to concentrate. I haven't written lately because I just read all the stuff everyone is sharing. and it's helpful. hang in there and read all you can from the website. I sure would like to meet Delaine, sounds like fun to be with. I need a laugh once in awhile. becca from in california
Re: info re blepharospasm
Well Patricia, we all have the same problem in varying degrees.
I was diagnosed in December, 1999. I went 6-9 months with symptoms that got progressively worse. Everyone, including myself, thought that I was developing facial ticks because of stress. Stress aggravates this disease, as does light sensitivity. I had a car accident during work hours, because of BEB, and haven't driven since. That is what I miss most. I went on a short term medical leave, which continued into a long term medical leave; and then in July was found eligible for SSD, and I took retirement. I went 90 days without botox, and my Doctor jumped all over me, because I was real bad when I went in for my shots last week. I was listening to people on the board who were going 4-6 months without botox, and I decided I was going to try for a longer time. She told me to never do that again. She couldn't even examine my eyes, because we couldn't force them open with our fingers, the squeezing had gotten so bad. I get 16 injections and she has been using 38 units of botox, but that isn't enough, and I told her so. Next time she is going to give me 50 units. I have a mild case of meige, too. My nose trembles and my top lip curls up, and I purse my lips. I get shots on either side of my nose, right in my smile lines. Feel free to e-mail me if you have other questions. I have lots more I could say, but have said it a hundred times already.
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