Posted by: Delaine Inman in TN ®
09/10/2003, 16:53:31
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Well your inner and outer child haven't lost their sense of humor. Sounds like a good plan. I like Klonopin better than Xanax and Artane in low doses helps many people. Give it a try. You never know unless you try. Start it slow and give your body some time to adjust. Hang in there!
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Posted by: Claire from Canada ®
09/13/2003, 17:50:57
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Hi,I have been taking Artane for almost one year. It has helped quite a bit with the Meige, however,it makes my face look a little like a mask; I have lost a lot of expression in my face. It does nothing for the eyes; I have Botox injections every 6-7 weeks. I had lots of spasms in my throat, and the Artane helps there too. The main side effect that has been bothering me is the loss of memory. I can take a larger dose than I do, and it would really help much more, however, my short term memory gets seriously affected, so I have to be careful. Claire
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Posted by: Junebug ®
09/13/2003, 21:45:12
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I am hesitant about the Artane. My brothers (pharmacists) tell me that Artane is an old drug that isn't prescribed nearly as often as it used to be and that one of the main side effects is the possibility of heart irregularities. Since I have that problem anyway, I am frightened and they are against me taking it. I trust them of course. The neuro-optho didn't want to prescribe it. He wanted my internist to make the decision. I will see him Monday. I think I know what his decision will be. I don't like the sound of the side effects you are having either epecially if it is not helping your eyes. My eyes are my biggy problem.Thank you so much for answering me. Rest well.
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Posted by: Moderator-JB ®
09/13/2003, 20:43:44
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Hi,You may want to get another opinion with regard to taking that amount of Xanax. It is very sedating and seems to be addictive, however I'm certainly not a doctor. It is helpful to some people in small quantities (.25 mg.)used in times of high stress. Good luck in finding just that right Rx coctail that will work for you. Have a nice evening, Judy
blkmn36@earthlink.net
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Posted by: Junebug ®
09/13/2003, 21:42:17
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yes, I know you are right. I am supposed to talk to my internist about it. I don't know if it is more addictive than Klonopin or not. I have to deal with so many addictive drugs because of my chronic pain that I am very aware of it. I have just come off of MSContin and back on Lortabs and.......the Xanax. I have some very good drs and I have faith they will figure something out. I may not like it but they will figure it out. lolThanks for your advice. And thanks for this board.
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Posted by: Delaine Inman in TN ®
09/14/2003, 17:36:02
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Both as a nurse who has work with addiction and someone who has discussed the subject with many doctors re: the drugs that help BEB/Meige/Dystonia, I think Xanax, Valium, Ativan, Lortab, Vicodan, Hydrocodone, or anything with codeine, morphine or any addictive drug need to be used with caution and short term unless you simply can't find anything else that works and you can't function without it..all are very addictive......and you will definitely not be able to function without it once you are addicted. Klonopin is classified as an addictive drug but the neurologists I've talked with say it seems to work better in small doses without having to up the dose to get the same effect. Patients seem not to develop as much tolerance and need more and more and more. It shouldn't be stopped abruptly....most medication even heart and blood pressure medicine need to be tapered off under the supervision of a doctor. Klonopin is also given as an anti-seizure drug as a maintenance drug and with seizures and dystonia it seems to work differently in our body so that we aren't having to constantly increase the dose. I've been on the same dose or less since I started it in Jan. 2001......1/4 mg..... 4 or 5 times a day while awake. I've never needed more only less as time goes by. Since I started the Piracetam in Jan. 2003 I take the Klonopin 1/4 mg 4 times a day. I've seem people go through withdrawal from the other things I mentioned and it is not a pretty site.
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Posted by: Junebug ®
09/15/2003, 13:33:48
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I guess you don't understand my situation. I take the pain meds for Lupus, Rhuematoid Arthritis, Osteo Arthritis, Ankylosing Spondylitis plus a myriad of overlapping autoimmune problems. I don't take these meds for the spasms which are the smallest problem that I have. No one knows better than I do about pain meds and steroids and weaning off.I wish my life was such that I didn't have to have them but it's not. I have JRA since a child. I wean myself off pain meds periodically just to know myself that I am not addicted. But as all of my drs here and at Mayo say, I don't have any choice if I want to function any at all in life. If I have to take them the rest of my life, so what. I have things that can shorten my life and I prefer to live each day with as little pain as possible so that I can be of some benefit to my family and friends and not be laying on the couch complaining. I feel like I am having to defend myself. I am only taking the Xanax because I am already taking it to help me sleep and my muscles to relax and the Optho-Neuro said that to take a little more during the day might help that he doesn't want to prescribe more drugs because I take so many. He is leaving that up to the internists, rheumatologists, etc. "too many cooks in the kitchen" as he says. I came to the board to learn more about the Blepharospasms. Another problem on top of my already disabled body. I have been on disability since 1987. Maybe there is something like frequent flyer miles. lol I have two brothers who are pharmacists who keep on top of my meds and how I react to them and how they react to each other. I don't know why I am saying all of this except that I am not addicted to anything. I even took myself off MSContin against med advice just because I want to be in control of my body. I am getting ready to go back on it because I hurt so bad I can't sleep, walk, etc. I will be lurking and seeing what I can learn by reading but I think I have shared too much and have been prejudged. Thanks to all of you who have shared with me and thank you so much for the party you gave for me. That helped through a really rough time. Best wishes to you all.
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Posted by: June in Toronto ®
09/15/2003, 14:49:39
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Don't leave us - you have a lot to offer others on this bb and we enjoy your company (especially the party). The written word sometimes comes over different from that what we are trying to say. During my letter-writing days I have been accused of being 'hard' but that's not what I was trying to convey. We also are suffering a lot from beb and other medical problems and need the support of each other.June in Toronto who is hoping that you won't leave us (we `June's) have to stick together:-)
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Posted by: Delaine Inman in TN ®
09/15/2003, 17:14:36
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You don't have to defend taking anything that you need to have a better life. If that is what you got from my message then I wasn't clear. Sometimes all those drugs I mentioned are necessary especially in situations where there are multiple medical problems and chronic pain and other disorders. Please accept my apology......it was not my intention to offend you are anyone who needs any type of medication. I wasn't judging you or directing my response to you directly. I am really sorry. Don't go away and don't stop posting. I have 2 disorders and I can't imagine adding more and having the circumstances you have to deal with on a daily basis. I was speaking about choices for BEB in terms of Klonopin vs other choices, but Klonopin doesn't work for everyone either. Again my sincerest apologies. I feel like a heel now and wouldn't have intentionally hurt your feelings for anything in this world. Words can't be taken back........give me another chance and please don't go away. I need to be the one to leave if anyone leaves...........Nothing is worse than hurting a friend and I sure didn't mean to hurt you. Wow did I insert both feet in my mouth! Tastes terrible, feels terrible......Begging for forgiveness in TN
Modified by Delaine Inman in TN at Mon, Sep 15, 2003, 17:22:42
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Posted by: Claire from Canada ®
09/15/2003, 20:33:30
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We all need each other. We are all different in our symptoms, our meds, our Botox, etc. By sharing information, we are all learning to cope. No one is judgemental here, just trying to be helpful. Please come back, we need you, too!!
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Posted by: Junebug ®
09/15/2003, 21:32:18
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I know it was meant as a helpful post and goodness knows I need all the help I can get. I am not usually a defensive person. I apologize to all of you. I didn't get started off on a very good foot. I need you all and I also want to be a support for you. I hope you can forget this Okie who lashed out because of being so tired of pain, fatigue, and now trying to learn to live another disease.Please forgive me and I will work on forgiving myself.
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Posted by: Junebug ®
09/15/2003, 21:26:23
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I have had such a hard time lately with this pain syndrome that I have been too much on edge. I know you didn't mean anything by it. I apologize for being too defensive. I am not usually that way. I hate having to take all these meds and I usually don't even tell anyone that I do.Forgive me for jumping to fast and let's just start all over. You guys have been so nice to me and I have been learning so much. I just am not a happy camper right now adding another disease to my "resume".
I am so tired of pain, fatigue and now not being able to drive. I just should not have taken it out on you. I do know you weren't accusing me of being an addict. I guess I just feel like I probably should be or could be. My dr. tells me if you take pain meds for pain that all that happens is it takes care of your pain that you get addicted when you take it and don't hurt. I want to be your friend. I am so very sorry this happened. Here's a big hug for you.
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Posted by: Junebug ®
09/15/2003, 21:35:28
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to you. Please don't feel bad. I took it all too personal. I am just having a hard time right now and lashed out. Really, that is not the real me. It may take a while for you to believe that though. I didn't get started off very good. Take your feet out of your mouth and put some chocolate in. :o) Hugs. I want to be your friend and I want to support you also.
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Posted by: Delaine Inman in TN ®
09/15/2003, 21:44:48
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My internet went down and then posted before I saw your last post......that made no sense I guess.......What I'm saying is nothing to forgive yourself for ......pain, fatigue, frustration we do understand that.....I can't even imagine the basket case I would be if I was dealing with what you have to face. Don't worry about anything you said and .....what post are you talking about????????? We'll just delete the whole thing and it never happened. I'm still going to go for the chocolate if anyone has any....just because I love it. Love and super Hugs to you. Hope you feel better soon. Thanks for understanding and coming back.
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Posted by: Moderator-JB ®
09/23/2003, 17:11:04
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Chocolate ~Vitamin 'C' has always been with me in great abundance.
My daughters have even blamed me for teaching them to be choco-holics.
When they were kids I would hide Ding Dongs before going to work, in the hopes that at least one would remain until I returned home that night. One swoop of the after school bunch (2 daughters + friends with each) would clean them out (they knew my hiding places it turns out). Mmmmmmmmmm - Judy
Modified by Moderator-JB at Tue, Sep 23, 2003, 17:12:23
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Posted by: June in Toronto ®
09/25/2003, 12:20:20
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"Twill make old women young and fresh
Create new motions of the flesh
And Cause them long for you know what
If they but taste of chocolate"James Wadsworth. A history of The Nature and Quality of Chocolate. Enjoy your chocolate - you can have my share as I don't like it (I know I must be strange!). June in Toronto
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Posted by: Kathy in Atlanta ®
09/27/2003, 09:31:02
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This is delightful , june. Dark chocolate also contains tannins and is supposedly good for your heart.
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Posted by: Delaine Inman in TN ®
09/15/2003, 21:33:30
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Help me out here. We all want you to be more than lurking. We do want to understand. We learn from one another and we need you. Does anybody have any chocolate......I need some quick and lots of it.
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Posted by: Junebug ®
09/15/2003, 21:37:43
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I just posted "somewhere" to take your feet out of your mouth and put some chocolate in. Evidently you are my kind of person. I am very sorry that I reacted too quickly and strongly. I will be here. I need you and I want to be here if you need me.If I could I would share my chocolate with you right now. I have had my share and yours. I am very very sorry. Can we start over?
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Posted by: Delaine Inman in TN ®
09/15/2003, 21:50:55
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I can't talk now, my mouth is full of chocolate, I guess you just thought you ate enough for both of us. My dog house is empty. The hug felt great. Got to pick up all these wrappers and hide the evidence. Happy in TN.....
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Posted by: Sally - in - Idaho ®
09/16/2003, 21:22:27
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Delaine, get your feet out of your mouth and I'll send you some good old homemade fudge. Sounds like I missed a party! Guess I should look in more often. The BB parties are always fun and great mood brighteners. I'm glad you had one for Junebug.Sally in Idaho
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Posted by: Junebug ®
09/17/2003, 08:03:16
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So am I!!! And I needed it so badly!! Hi Sally, I am glad to meet you. I guess I got started off as kind of a pain in the neck. I am glad you are all understanding people of what can happen when you are in so much pain and depression that you don't think quite right. I hope you don't write me off as a weirdo. I could take some of that homemade fudge also. This prednisone has me on the biggest Pred Pigout that I have been on in a while. If it is chocolate, watch out! Blessings from Oklahoma.
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Posted by: APhair ®
09/18/2003, 14:28:36
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Delaine, how much of the Piracetam are you taking. I know it is an 800mg caplet. I thought I heard you say once that you were taking three a day. Do you also take the Neurontin with the Klonazapam & Piracetam? I kind of like your idea of taking 1/2 doses of the Klonopin more often. I currently am taking .5mg four times a day and I am finding that it is not lasting quite as long as it used to. Maybe gradually sqitching to the lower dose will help. I have been a little hesitatant of going full steam ahead with the Piracetam & the Neurontin yet I hate to stop the Neurontin. It does not appear that there are any contra indidcations between the two so I might give it a try and see what happens. Like you say, one never know what will word .....Alan
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Posted by: Delaine Inman in TN ®
09/18/2003, 16:40:44
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I am not taking Neurontin. It was ordered once at my request by a neuro/ophth at Vanderbilt, but she didn't feel comfortable ordering it and wouldn't give the dose that might have helped. I now see a neurologist here in Columbia, TN where I live about an hour from Nashville. I found the Klonopin at 1/2 mg made me feel spacey and didn't last any longer than the 1/4 mg which I felt no side effects. I take Piracetam 800mg with meals 3 times a day and the Klonopin at the same time plus a dose at bedtime. If I'm having a really bad day or Botox wearing off I sometimes need a dose between the evening meal(which I eat early) and bedtime if I want to watch TV and can't. 90% of the time I take only 4 doses a day especially since I'm taking the Piracetam.
Modified by Delaine Inman in TN at Thu, Sep 18, 2003, 18:12:17
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Posted by: Nancy Williams ®
09/24/2003, 08:14:10
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Good Morning Delaine..
The doctor of one of my "blefro" friends has prescribed Lorazepam for him.....could you please tell me what you know about this?
And is it used for Blepharospasm? I did a web search and found out that it is a drug used for anxiety disorders.
Thank you so much.
Nancy/ NE PA Area Rep
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Posted by: Delaine Inman in TN ®
09/24/2003, 20:54:54
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It is the same as Ativan and works on potentiation of GABA in the brain. Many of the drugs that help BEB/Meige/Dystonia work on GABA A or B or A & B. Klonopin does the same and is called an antianxiety and and antiseizure drug. Many drugs have multiple uses and work on the part of the brain that seems to help some people with decreasing symptoms of BEB. I feel no antianxiey effects from the Klonopin but it sure does open my eys and they close when it wears off. GABA stands for Y-aminobutyric acid in the brain
Modified by Delaine Inman in TN at Thu, Sep 25, 2003, 08:07:55
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Posted by: Nancy Williams ®
09/25/2003, 07:42:03
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Thank you so much, Delaine for the info..I understand now why it was given to my friend.
Nancy / NE PA Area Rep where it is feeling a bit like Autumn.
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Posted by: Kathy in Atlanta ®
09/27/2003, 09:25:29
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Delaine, can you explain the differences between ativan and klonopin for us. I have been told that ativan is NOT narcotic based.
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Posted by: Delaine Inman in TN ®
09/28/2003, 16:09:30
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I just posted this long reply and it vanished!!! Here is summary....SO here goes again1. neiher are narcotics, but both are addictive and work on GABA A & B or A or B in the brain.
2. Avitvan is lorezepam and classified as sedative/hypnotic/antianxiety
3. Klonopin is clonazepam and classified as anticonvulsant/antiseizure Many neurologist feel a low dose of Klonopin works well with Dystonias and don't see as much need to increase dosage as often. Ativan is meant for short term use for anxiety. We all know one size doesn't fit all and if Ativan works when nothing else does it would be way down on the list of "who cares if it is addictive? if it gives you back relief and function.
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Posted by: Kathy in Atlanta ®
10/01/2003, 19:23:49
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This is a new way of having this different classification of drugs explained to to me; so for this thanks. the info i have been told by more than one doctor is the opposiite of what you are saying here as far as upping the dossages and the ensuing depressive side effects. i have maintained a very low level of ativan for many years now and it DOES continue to work on eye spasms as a muscle relaxant OR i think i would again have to switch back to the klonopin. Which raises the question??? Has anyone with beb or dystonia been sucessfully been able to switch back and forth between these 2 medications when one stops working as well??
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Posted by: Delaine Inman in TN ®
10/03/2003, 14:54:06
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Just goes to show that doctors and patients feel and react differently. The docs often use what has worked for others first and we tend to stick with what works when we have tried so many things that don't.2 neurologists here in Columbia both told me they like Klonopin better. It has worked for me. I don't feel any differently emotionally, it simply opens my eyes at the low dose I take. The basic drug info came from a Nursing Drug Reference book. I worked as a nurse 27 and a half years, some in drug addiction and some in ICU. Ativan and Valium were often given for anxiety, panic attacks and seizures from drug and alcohol withdrawal. I saw Ativan and Valium abused, which has clouded my feelings I'm sure about them for more than short term use. I have had many people come to my support group that are on Ativan and Valium and say it helps them. So I believe all three work for many people. Also I think all three drugs may work differently for us than people without dystonia and that is why we tolerate it better without raising the dose. Maybe because we are taking it for a different reason than anxiety, it works on our brain to simply open our eyes.
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Posted by: Kathy in Atlanta ®
10/06/2003, 09:46:39
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Interesting!! Yes, i agree with you that the drugs probably work differently for those with beb or dystonias. I have no desire to take more ativan than i am , that's for sure.
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