Posted by: June in Toronto ®
02/16/2003, 19:12:59
Author Profile Mail author
|
You will understand Pam in time, at least as much as we do - just keep asking your questions. As long as I keep up with the botox injections (and don't let it disappear) my eyes don't clamp shut - the eyelids close on occasion like on a cold, windy day or when they are very tired. If I don't get Botox scheduled on time, I can't raise my eyelids to talk to people and end up talking to their shoes! So, yes a person can have Blepharospasm and not have the eyelids clamp shut.As far as taking Klonopin is concerned I believe some people take only 1/4 of a tablet 3 times per day or even twice per day - they find it too much to take more. I started to use this medication to extend my Botox when it was social necessary (i.e., to attend a wedding or such like) and the doctor said to start on 1/2 tablet twice a day, then increase it in a week to 3 times per day until at 6 weeks I was taking 3 full tablets each day. I found it far too much and I was a zombie even on 1 1/2 tablets a day, so I went to a 1/4 tablet (3 per day). I'll let others post back to you about what they take. I'm sorry you are so frustrated in trying to help your Dad - we are as well in trying to help ourselves. Its a hard disease to understand so we all do the best we can. Vent anytime you feel like it. June in Toronto (beb/meige)
|
Posted by: Virginia ®
02/16/2003, 19:45:11
Author Profile Mail author
|
It's possible that your father has apraxia of eyelid opening. See the link below for more information. At least it would be worth asking his doctor about. You can have BEB and apraxia at the same time and it makes treatment complicated.He should not stop the Klonopin abruptly. Again his doctor should suggest a taper if he wants to decrease the dosage or stop it altogether. A doctor at one of the conferences suggested to me that I might want to cut back a by half of a tablet a month and when I had been on a single half-tablet daily for a month, to take it every other day for another month. So you can see that it can take a while to get off completely, especially if he is on 3 tablets. The side effects for me (when trying to cut back too quickly) were increased symptoms of dystonia - not just my eyes (even my hands, which is one place I don't normally have symptoms). I take 1 1/2 to 2 .5 mg tablets a day. Virginia in AL Related link: http://www.blepharospasm.org/blephar4.html#A1
Related link: http://www.blepharospasm.org/blephar4.html#A1
|
Posted by: Kelly Saffell ®
02/17/2003, 07:49:08
Author Profile Mail author
|
I agree that you should check out the apraxia sight as well. As far as the klonopin goes, I take 3/4 of a tablet per day. It definitely makes me drowsy. Prior to Botox, my neuro had me on 3-4 pills per day to get me through my sister's wedding. Once I received Botox, I weaned off of the medication completely, but not slowly enough! I was very anxious, depressed, and I still remember only sleeping about 3 hours per night for 6 weeks. I had a 9 month old and was exhausted. I was later told to wean 1/4 tablet per 2-4 weeks to minimize side effects. Is your dad receiving Botox injections? My eyelids fall rather than clamp shut with Botox. Always come here to vent - we understand!!
Kelly in Dallas
|
Posted by: Kathy in Oregon ®
02/17/2003, 08:00:14
Author Profile Mail author
|
As far as I understand , Pam, there are 3 kinds of eye closures: rapid eyeblinking, tonic closures, like the ones you sre describing that your father has, and clonic closures, where the eyes clamp shut and there is very forceful squeezing, very bad discomfort and pain. I have all 3 at various times.
Your father may indeed be overmedicated!! I think that to discuss this with his doctor would be a good step, cutting back slowly on the klonopin by 1/2 pill at a time. I have seen this same situation in my own mother and others who were overdrugged to the point of zombieness.
|
Posted by: Alan Phair ®
02/17/2003, 10:22:14
Author Profile Mail author
|
Pam, I don't know if it is the Artane or the Klonopin but the two of them together can be pretty potent. I know some people do take both. Personally, I could never tolerate the Artane which is when I switched to Klonopin. I know they are not the same drugs. I take Klonopin .5mg four times a day but I am a pretty big guy. I think that three times a day is the normal dose although I know quite a few people only take the .25mg. Perhaps he should regulate when he takes the meds to see if a different regiment works bett er for him.. For example, I take the fourth dose of Klonopin just before I go to bed and that way, I still have some in my system in the morning when I wake up. Before I did this, I was horrible in the morning until the medication kicked in from the morning dose.He should talk to the doctor however to see what he (or she) thinks....Alan
|
Posted by: joyce whitt/NC ®
02/17/2003, 18:53:59
Author Profile Mail author
|
Pam, You are such a good daughter. You love your Dad so much that it frustrates you not to get the answers that you need. When I first started having my "eye problem" people told me that I looked like I was sleepy, and I remember telling the doctor,, "Why are my eyes closing all the time, they feel like I have magnets in my eyelids " I also was very light sensitive all the time, I could not go out in the sun without my eyes closing down. I had a ophthalmologist tell me that the reason my eyes closed out in the sun was because I had blue eyes. What about the days it was cloudy , or rainy, or dark in the morning when I went to work. I too thought later on that I might have been misdiagnosed because Botox never worked very well for me, but I do have the spasms in the eyelids and also under the eyes and lower face. I said all that to say, I don't remember blinking a lot but I would stand in front of a mirrow and I could see quivers in my eyelids as they slowly closed down. That is a weird sensation to watch your eyelids do things you had no control over. Sometimes their are no answers. I take Klonipin 2 - 4 (.5mg)a day. I take two in the morning and sometimes that is all I need but on a very bad day, I have been know to take 6, two at a time - spaced out during the day. I was not the one spaced, just the length of time between medication. I am like you tho, nothing seems to work (medications that is) so when I finish up with the klonipin and other things I take (Elavil at night to help me sleep) I am going to try to see if I can do with out them. I do want to try Artane, if my doctor will let me but I want to be off everything else. I have heard that it has helped some people. Hope springs eternal. Hang in there Pam, Joyce in NC where it is icy and cold.
|
Posted by: Delaine Inman ®
02/17/2003, 19:06:34
Author Profile Mail author
|
Sometimes a little is better than more. Don't abruptly stop medications it can be very dangerous. I take 1/4mg of Klonopin 4 or 5 times a day. I can tell when it wears off. More doesn't last longer.
|
Posted by: debbie campbell ®
02/17/2003, 21:24:28
Author Profile Mail author
|
Pam, I understand your frustration. I feel the same way and at times, wonder about the BEB as well because my eyes have never clamped or squeezed shut, in the time leading up to be diagnosed to now.They have always just closed and I'm not able to open them. At first it was like a slow blink and they just took their time to open but through time, I just plain wasn't able to open them until they were ready to open themselves. Just before the diagnoses, my eyes remained close for 95% of the day. But since being diagnosed, I receive the botox injections and they are very effective. I don't take any meds at all. I was diagnose Jan 02.
Debbie from Canada
|
Posted by: Sherrie Feltz ®
02/21/2003, 22:28:21
Author Profile Mail author
|
I was first diagnosed with BEB, then within 6 months after that I was sent to Dr Patrinely at his FL office. He has also diagnosed me with Apraxia....closure of the eyelids. Mine don't squeeze shut,they just close and stay that way until I use me hand to open them. I'm not on any of the meds that your dad is on. I am scheduled for a myectomy for the BEB and and if I still have problems with the closure after that there is another procedure called frontalis sling, where artificial muscle is put in to replace the affected muscles, which should allow the eyelids to operate on their own again. At least for awhile. Don't know if I was any help, but that is what the deal is with my eye closure.
Sherrie in FL
|
|
