Re: Good News
Hi Joyce,Well congratulations! I have to renew my driver's license this month also. I'm a bit nervous about it, although I'm sure I'll do okay. I just have visions of something happening to my eyes when I'm taking the eye test. I thought it was interesting when you mentioned a sign test. Here in Washington, we only take an eye test. Happy Birthday in advance. Carol Brown in Naselle, Washington where we're having a good mix of different weather, rain, snow, sleet, wind, sun, etc.
Re: Good News
my botox and eyes go down every 2 months so i don't
know if i could pass a drivers test unless i
scheduled it just so.am i worse than everyone else? 100 units every 2
months. my doctor said that is just how much you
take. it sounds like you ladies are not as
incapacitated as me when you are down. rhonda coutant
Re: Symptoms Vary
Hi Rhonda,
We all have our good days and our bad days and over time our criteria for what makes an eye day good or bad does change. I was getting 100 units of botox every 8 weeks before my surgery. I'm now getting 50 units but only get the injections in about half as many places as I was before the surgery.
I picked a good day to get my drivers license renewed(you have a little over a month). I basically just need it for an ID at this point as I rarely am able to drive.
We all have varying degrees of symptoms for any given day. Some days I'm hiding away under the covers in bed because I give up trying to do anything else. That doesn't happen nearly as often as it used to but I still go to bed early some evenings just out of sheer frustration.
I do have good days that I can do most everything and unless someone really stayed with me and watched closely they wouldn't know that I had a problem. I'm never symptom free, though. After almost three years of this, I pretty much know what I can do and can't do and try to manage my day accordingly. Many others out there have had BEB much longer than I. You learn to deal with certain things that in the beginning you don't think that you can deal with.Botox works differently for different people and everyone is unique in how much they need and where. Yes, some people do have milder symptoms and others are dealing with much more than just BEB. Throw in a "little" Spasmodic Torticollis or Spasmodic Dysphonia or breathing problems or any number of other things and I for one feel quite lucky that I am only dealing with BEB and Apraxia. That in itself keeps me from working and doing many things that I would like to do or enjoy. You may be worse than some and better than others. That's just the way that it is. The disorder is difficult to deal with with minimal symptoms and can be quite incapacitating with worsening symptoms.
Try to enjoy your good days and we'll be here for you whether you are having a good day or a bad day.
Rhonda, I do know how you feel. When I started posting on this bb a long time ago, someone got mad at me when I mentioned that my symptoms might be worse than someone else's as they were able to drive and I couldn't. I never could really understand why they were mad.
Everyone's symptoms are different.
Shirley in Arkansas
--modified by Shirley-Arkansas-USA at Thu, Dec 06, 2001, 16:14:28
Re: Symptoms Vary
thanks for responding. i'm in bed all morning on days
my eyes are going bad and after the injections when
they're getting better. i hate living like this but
i guess i'm getting used to it slowly.rhonda coutant
Re: Symptoms Vary
It sure is a bummer having to get used to it, though.
Hang in there. You will have "good days". The bad days don't last forever. Just when you think you can't take anymore-a good day "happens".Shirley in Arkansas with BEB/Apraxia
Re: Symptoms Vary/rhonda
rhonda, do you have any hobbies or things you like to do or learn? maybe a little pet would help, like a parakeet. they don't need walking and they sing delightfully and are fascinating to watch. you can also teach them to talk.
if i could get my blankety blank left eye to stop high speed blinking today, that would be something!
Re: Symptoms Vary
Shirley:You've made some good points. We are all different. I remember going to BEB support meetings (1 per yr. here in WA) and thinking 'why am I wearing dark wrap around sunglasses over my glasses and the majority of people here don't?' .... However, I can read with no problem and many can't. Many people have both eyes shut down at the same time and stay that way for long periods. .... However, only one of my eyes shuts down much of the time due to Apraxia with the other joining in under adverse situations (or just because it feels like it). Many with Dystonia have all over crumpled or constantly gyrating bodies. .... However, I was not in the World Trade Center on September 11, 2001. Hang in there folks, life's a journey and we will never be sure of the end until we're there. .... However, I do wish I'd forgone the opportunity of firsthand knowledge of BEB, Meige, ST or generalized spasms :)
Re: Good News
Rhonda, It was only by the grace of God that my eyes stayed open today. When I got up this morning I had a bad headache (had one yesterday and it kept me in bed most of the day because eyes were scratchy & squeezing so bad). My eyes usually get a little better as the day goes on so we went to Wal-Mart first and I walked around most of the time with my eyes closed but when I came out I told my husband - let's go for it. All they can do is say no and I'll go back another day. We got there at 11:30 and they took me right away. My eyes were droopy but they stayed open long enought to look into that machine for the eye test and sign test. I am to have minor eye surgery Dec. 18th (the day before my birthday) He is going to tack up my eye brow (arch area) because my spasms have been so forceful they pulled them down. That is why I wanted to get it done before the surgery. We all are so different and each one of us probably think we are "worse than someone else". I know I wonder why my Botox shots doesn't work for me like it does for others but then I read where they are having a rough day. We all hid our feeling a lot of times because we don't want people to think we complain all the time. I am guilty of complaining too much. Since I can't complain at home I have to complain on the BB because no one listens to me at home and the BB understands what we all go through. Joyce in NC who is going to go visit her daughter in SC tomorrow and I am looking forward to it. We will return Saturday so it will be a short visit.
Re: Good News
Joyce, I love your complaining. :-) It helps countless other "lurkers" out there that might not ask a question or may be having the same problems that you are. When we offer you suggestions or sympathize with you, it just may very well be helping someone else or giving them an "idea" that they can use themselves. They may not have anyone to listen to them either and you just saying that may make them feel so not alone.I also wonder why the botox doesn't work for me as well as it does some others but I know that I will never have an answer to that. Just knowing that there are others that it doesn't work so well for is a little comforting to me. I hate to think what kind of mental state I would be in if I didn't have this bulletin board to find out these things and compare "notes". My first botox doctor couldn't figure out why I wasn't responding to the botox like his other patients did. That really made me feel somehow "different". But what do you do with that information if that is all the information that you have or are given.
I can just say that my sanity is intact due in big part to this bulletin board.
So, Joyce complain all you want to and I will never complain about anybody's complaining.
And you also offer great suggestions. I still love the crockpot washcloth warmer idea. Shirley in Arkansas
Re: Good News
Hi Rhonda...Part of my frustration is the unpredictability associated with my Botox injections. If you had asked me over the summer months whether I thought my condition was worse than yours, I'd have said "for sure" because at that point in time, I didn't think anything could have been as bad. My injections never worked at all, likely because of the extreme stress I was under, so for 3 full months I crawled under covers, avoided the sunshine, hid myself in the house, couldn't drive, or walk without bumping into walls, and didn't even want to see or talk to anyone. Then came my next set of injections, and I was OK again. "OK" for me is NEVER 100%, but I'm among the lucky ones who can drive and function reasonably well when the Botox IS working. My bad days begin around 2 to 2-1/2 months after my shots, and I get the shots every 3 months. I would be getting them at more frequent intervals, but I try to put off the Botox for as long as I can stand to. I'm not too sure we can measure the intensity of BEB merely by the symptoms we display, because all of ours seem so very different. But what seems to me to be the same, is what we're all feeling -- the frustrations over being unable to overcome this thing; the anger over having been dealt this low blow; the hopelessness of knowing that there is not yet a cure; the confusion over how to deal with it. In these feelings, we are all the same, aren't we? hugs....
Re: Good News
Glad to hear Carol that you got your license renewed. Not sure when mine expires as I haven't used it at all in the last 9 months. Hope this batch of Botox helps.I know what you mean my everyone is different. I went to new doctor on Tuesday at Wills Eye and he wants me to continue on the Botox and we'll see if I need any surgery down the road. Other 2 doctors had me scheduled for surgery in a couple of weeks after 2 sets of injections. New doctor says to get this under control with the injections and then we will see. I really was impressed with him. He doesn't schedule appointment because each patient is different. Just call when you need more. He wasn't upset with me for using a cane to get around with during the bad times and understood that I use it to alert others that I am stopping. Other doctor thought it was silly. Totally different attitude from the last one. When I asked for the map of the sites he gladly had a copy made and gave it to me. I think some doctors are like the blind man and the elephant. Last one wanted me to have surgery because I was worse than his other patients and he never puts anyone on disability for this disorder. This new one says he has patients much worse than me but realizes it is disabling and we'll see how it progresses. It was nice to be treated like I was a part of my own team. Got more injections over the bridge of the nose (5) and less the middle of the eyes. Same amount of units total - 65 but in different sites.
Should be seeing results pretty soon. Coleen in Central PA who went to Target to find a winter headband for a night mask and came home with one with the Powerpuff Girls on it. The things we do with this. Thanks Shirley for the suggestion but it still doesn't stay on all night. My son suggested a chin strap. Whatever works!
Re: Good News
That is good news. In Aug.I got mine renewed for 4 years. However I do very little driving. I stay within a mile of home, but have the grocery store, bank, beauty shop & Post Office within that distance, so feel fortunate.
Joann in Ark where it is very mild & warm.
Re: Good News
Joyce I am happy for your good news. I got my renewed lastyear i got
lucky.Here in IL with a good driving record i renewed them by mail and did
not take any test at all.
I went Nov 21 and got my shots they started closing Nov 30. I got 100 units. Not very good results I will try and keep my spirits up but it wont be easy.
Colleen in IL All of you might hear mr screaming before this is over
Re: Eyes closing
Hi Colleen, Maybe you are just having a bad spell with your eyes right now for some reason-more stress, weather conditions, who knows. Hopefully you will still have some good effects from your botox. You say that they are closing now. Do you have a ptosis or apraxia or are they squeezing closed? Do you take any medication for the BEB besides the botox?
We'll come running if you start screaming. We'll just set you up with a wintertime pity party.Shirley in Arkansas
Re: Eyes closing
Hi, Shirley My eyes just shut. They dont squeeze or anythingjust like i close them to sleep.My husband cant tell if i shut them or they close on their own.I take Sinemet andMirapex for pd. Dr. Racette said that it could help my eyes.
I can still do what i want most of the time.
Colleen in IL who will never go to St. Louis again the day before
Thanksgiving
Re: Eyes closing
Colleen, it sounds like the botox might be working if your eyes are no longer squeezing. You may just have apraxia problems like I do and that is very difficult to treat. The botox can actually make the apraxia worse as it weakens the muscles to relieve the squeezing. There aren't many meds that are helpful for apraxia. I also don't know what other meds you could take with the Sinemet and Mirapex for your PD. Benadryl helped me in getting my eyes to open easier and the Parsitan that I am taking now, helps some. The Parsitan is also a drug that is used as an anti-parkinsonian (to relieve Parkinson's symptoms) But you are already taking meds for that and like Dr. Racette says, they may also help your eyes.
There is just not a whole lot to be done for an apraxia problem. Surgery can help some but that is a personal choice. You might ask Dr. Racette the next time that you see him if he thinks that your eye closure is apraxia and what can be done to help. See if he has any suggestions.I'm glad that you are still able to do things but I know how frustrating it can be. Shirley in Arkansas
Re: Good News/colleen
colleen, how long have you been getting 100 units?
Re: Good News/colleen
Hi Kathy I have been taking 100 close to 3 years
Re: Good News/colleen
thanks. if and when i have to have my dosage increased this info on what you all get will help me.
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