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Posted by: Lory ® 11/05/2010, 01:10:15 |
Hi all....
I was diagnosed with bleph in September after months of seeing doctors to see what was wrong. I got botox treatments from a reputable neurologist who specializes in bleph and movement disorders. Since my treatments, I have had relief in keeping my eyes open more, but have drooping eyelids but more importantly, facial twitching and sometimes difficulty catching my breath (because of twitching maybe and the anxiety it brings?) I have to take a couple of xanax during the day to settle my twitching down. Is this a normal side affect? I didn't have this before....it was more just my eyes. I have a call into my doctor but haven't heard back yet. It's been two weeks since my first treatment. Also I am having alot of muscle fatigue too and have since this all started especially in my back and legs. Is this normal? I need answers...so frustrated, but am doing my best. I am a 50 year old very active Mom of 3 daughters and 1 beautiful granddaughter who keeps me smiling! Thank you and I'm so happy to have found this forum! Lory |
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Posted by: JBHASLAM ® 11/05/2010, 04:38:00 |
Hello Lory, I have a similar effect after Botox. I was told that either the spasms have to go somewhere so migrate down the face, or the condition has progressed. I used to have a very significant 'bunny nose' after the injections. I've since had slightly more injections and am on medication, Procyclidine, which has offered me respite for much longer than usual. When I was first injected, I suffered with extreme tiredness for about 6 weeks. I even contacted Allergan as I thought I had such an adverse reaction to the drug. Muscle fatigue was very evident for me. However, that has worn off after a few weeks. I'm off balance and keep veering to the right. I also seem to have slight spasms when breathing. I seem to be unable to breathe in or out temporarily. I'm not anxious at the time. Despite these side effects, I was unable previously to open my eyes at all. The spasms are less with the injections and I opened my eyes for the first time in 3 years. For me, it was miraculous! Feeling under the weather is a side effect for me, a pay off for being able to see. I prefer seeing! I walk as though I'm drunk which could be embarrassing. However, my world is so much larger now that I wouldn't stop the Dysport. (Botox) I hope yours doesn't last too long. It's scary though and I'm pleased that you've posted so that people can share their experience with you. Jane (UK) |
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Posted by: Lory ® 11/05/2010, 06:51:42 |
Thank you both for your responses! Linda, I do take magnesium supplements (250) mgs. a day along with others. How much did you take per day? |
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Posted by: Lory ® 11/05/2010, 06:57:55 |
Jane, Funny you would call yours a "bunny nose"....my mom called me "Sam" for awhile while she was staying with me meaning Samantha from the show Bewitched!
Thank you!
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Posted by: JBHASLAM ® 11/05/2010, 10:33:40 |
Hello Lory, I know that a few other people have taked about their 'bunny nose'. I get the impression that it's fairly common among us. The medication I was warned would initially give me dry mouth, dizziness or double vision and a need to introduce exercise very gradually. I didn't have dry mouth but was dizzy and absolutely exhausted after doing my normal exercise routine. I thought it meant doing anything MORE than usual! That passed as suggested it would by the Doctor. She said that it would diminish spasms and help me when the Dysport was wearing off. That's exactly what has happened. I checked it out on the Internet. It's used for people with Parkinson's. In small print at the bottom it is recommended/used for people with Blepharospasm. I have tried numerous other drugs but this one (Procyclidine) was prescribed by the Doctor who injected me. She told me to continue through the side effects which should ease after two weeks or so. I felt reassured that it was a drug prescribed especially for our condition. It's working for me. Hopefully you'll get replies from others too who experience taking other drugs. Jane (UK) Modified by JBHASLAM at Fri, Nov 05, 2010, 10:36:14 |
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Posted by: Lory ® 11/05/2010, 13:41:38 |
Thanks Jane!
I appreciate so much your writing and letting me know of your experience. I am to talk to my doctor this evening and will ask about this drug. I am going to post a new question about drugs to see what the responses may be. Thanks,
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| Procyclidine (Kemadrin) | | ||
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Posted by: Shirley Barr in New Mexico ® 11/05/2010, 18:14:23 |
Lory, If you live in the United States, Procyclidine is no longer available here. Our bulletin board had a conversation about this some months back. This particular drug was not taken off the market here but the company that produced it here in the US just stopped making it.
It is an anticholinergic medication so if that type medication would help you, there are many others that might work, too. Shirley in New Mexico click on link below to go to information on Procyclidine: Related link: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605037.html |
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Posted by: Lory ® 11/05/2010, 18:20:30 |
Thanks Shirley.....I appreciate the info and will look further! Lory |
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Posted by: JBHASLAM ® 11/06/2010, 04:50:07 |
Dear Shirley, You are absolutely right! I remember the conversation now! I had forgotten. I never used to forget things so much. It's either age or a result of this condition. Sometimes I need to see something visually in order to remember it or process it. Jane (UK) |
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Posted by: Shirley Barr in New Mexico ® 11/06/2010, 11:34:41 |
Don't feel badly about it, Jane. I'm the same way. I didn't specifically remember either...just thought that the drug name sounded familiar...as in something that we had discussed "fairly" recently so I did a search and then it was like "oh, now I remember". I did have to have a "visual" though to jog my memory about it. :-) I love the "Find" function and the archives. They make me look smarter than I am. :-) Shirley in New Mexico, USA |
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Posted by: Lory ® 11/07/2010, 11:35:25 |
Thanks Shirley....do you know another drug that would be comparable to Procyclidine available in the U.S. that might work as well? I have also heard Valium is good and more effective than the xanax I'm taking now. Do you or anyone know anything about the good or bad of Valium? Thank you,
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Posted by: Shirley Barr in New Mexico ® 11/07/2010, 12:15:28 |
Procyclidine is an anticholinergic drug. I don't know of an "equivalent" drug here in the US but there are many others that are within that same classification....Artane, Scopolamine patches, many antihistamines...plain Benadryl is sometimes helpful and can be purchased over the counter. All these medications can have a drying effect and can make dry eye symptoms worse. They may also cause drowsiness. Valium and Xanax are both in the classification of drugs that are called Benzodiazepines. Ativan and Klonopin are also in this category. They are commonly referred to as anti-anxiety medications producing a calming and muscle relaxant type effect. They also can produce drowsiness. Sometimes one works better for an individual than another. Sometimes one will stop working as well....where it did before....and a switch to another might be helpful. I think that most people on the bulletin board that take a Benzodiazepine, take Klonopin or Ativan. They are the two that we hear the most about. That by no way means that everyone is taking them. Doses vary from .25mg (1/4mg) of Klonopin once daily to four times daily to a few folks taking much higher doses four times a day. Some people take .5 mg, one to four times daily. Klonopin can be taken once a day...at bedtime...as it has a longer duration of action...a longer half life. Some doctors only prescribe it as a once a day dose (at bedtime) as it can cause drowsiness. Most of the patients on the bulletin board seem to take it in divided daily doses though. None of these drugs is better or worse than another. It is a matter of trial and error and what your doctor is comfortable prescribing for you with your own medical history. Xanax is very similar to Valium with a slightly different chemical makeup. Shirley in New Mexico |
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Posted by: Lory ® 11/08/2010, 18:25:31 |
Thanks Shirley for your reply....my doctor just put me on Valium this evening after talking with him on the phone. He thought it would be the best for me to try right now. I am to call him in a week to let me know how I am doing. He mentioned that I would probably have to have shots in my face as well as my eyes next time because of the problems that I am having, but that he did not do it last time because he thought it was just my eyes affected and said something about not doing the shots if he didn't have to for cosmetic reasons. I didn't ask him what he meant at the time, but am since questioning it. The shots in my eyes have changed the look of my eyes somewhat and I hope that will get better? I am wondering if the shots in the face will make my facial features look different too? If so, does it last or is it just temporary?
Thanks, Lory |
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| Injections for Meige | | ||
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Posted by: Shirley Barr in New Mexico ® 11/08/2010, 19:17:43 |
Injections for lower facial movement/spasms/meige "can" make that area of your face look different after being injected. Side-effects can include drooping of the muscles around and below the injection area .... for example, drooping of the upper lip making it impossible to smile or even eat well. It really depends on where you are injected and how that particular injection effects you and how "good" your injector is. Some people don't have too much trouble with this and the spasms are just relieved. I've gotten injections high up on my cheek area and it wiped out my upper lip for a good two months. Too high of a dose on either side of my nose will do the same thing to me. Truly, you will just need to talk to your injector about this and where else you might need to be injected and ask what potential side effects you might have from those added injections and then make a decision as to whether you want to deal with the spasms or risk the possible side effects. Any side-effects from botox are temporary and will go away by the time that the botox wears off. Shirley in New Mexico |
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Posted by: Lory ® 11/08/2010, 19:59:22 |
Thanks again Shirley....I will talk to my doctor about it my next visit. You've been a big help! Lory |
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| Klonopin(clonazepam) | | ||
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Posted by: Shirley Barr in New Mexico ® 11/05/2010, 18:25:37 |
Klonopin, Xanax, Ativan and Valium are all Benzodiazepines that have similar addictive qualities. None of these should be stopped suddenly. Klonopin does have a longer duration of action but does have the same potential for addiction as the others. Shirley in New Mexico click on the link below to go to a Benzodiazepine equivalents table: Related link: http://www.non-benzodiazepines.org.uk/equivalents.html |
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Posted by: kenavis ® 11/10/2010, 08:14:06 |
HI i forget my my teeth an some time i cant not remember people i m talking to it come an gos sort time lost of memory take medacatation for blepharospasm is not worth the side effects i wonted to get off of it computuley how woulf i do it under a docroe help the va won help i tryed to get them to returm my call you can go to seethem anyou cn not ge a ppoment for the exares of my heck the doctors are so busey trying thier best it not thier foult being over loded an over work an my heck brace i ware some time i for get to ware it are ware it to long seeing dobble in no fun if your hav side effect on the medacations you are takeing some i can not see in side the house at all staring in to a blank space with a smile on you face mabe i can try drinking out side with all the light in the cating places i go to i fould som larg safty glasses mabey i can ware thedm when i drive an go shopping i hopl they donttank in over doin it i ask a watress could i have some tape to put on my mouth what i need to do is is go back fishing an out rideing in a bat again an camoing an enjoy my self in stead of setting arounf smoke filled coffie houses an sml som frest ait do you know any body rhat thier doctor help them to get off Colonzepam it says for depression an pantic attack dont dive a car well how come my soctor releast me bach to work an daid i could still drive some one is more crazey than i am maby i suold chech my self in to a insane sallem at ask them for help all the peopl keep trying to kill me in my own house an wirh a gun an shot me in my own yard ar run over me with a car i wonder it i was in a insane ward wolud they kepp the deallers from killein me ar wouuld they com in s drug me sory i not worried at all just getting you yo uthink for you self can you walk in my shoes an i wil walk in your shoes do any of you stop yoiu car an warch people run in to the dich trying to run off he road hahe you been hit head on some one going a hundred mile an hou an you come of a live an in a coma can you go in to a coma after a rack an than come out an dont know wwhere you at have a bad head act an flash back no evr funny |
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Posted by: Lory ® 11/10/2010, 08:18:32 |
Thanks for all your input....appreciate it! Am trying valium right now, but it's only been 1 day, so we'll see if it helps! Lory |
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| KENAVIS~~~Re: Klonopin(clonazepam) | | ||
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Posted by: judith k ® 11/10/2010, 09:27:06 |
Hi Kenavis, Please clarify this. Are you saying that you want to get off Klonopin, and that the VA won't assign a doctor to help you to do this? What dose of Klonopin are you taking? Thanks, Judith K Modified by judith k at Wed, Nov 10, 2010, 09:27:43 |
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Posted by: kenavis ® 11/10/2010, 21:53:59 |
HI Judith K thanks i taake 0.5mg Clonazepam. tanlets three time a day (24) the bottle says for panicet attact an for depresions not for Blepharospasm the va Doctors say i m takeing it for Blepharospasm i have been releast bach to work an from the doctor the inssrance made him to release me under false lies saying i did not have blepharospasm i was thake the medacxations for depressionss an panict attact mood what i wont to know can the va doctor help some one who is takeing clonazepam for blepharospasm get off it it is agants the law for for doctors at the hospitoal are when you go the the hospitoal in an ablanance you can call are i cal call 911 an tell them i on clonazepam they wiil tell you are takeing it for dprissions an that iam lieing you can go to ant doctor an ask than what is clonazeppam do they take it for blepharospasm
the fda wont do any thing about it the doctors acotions wiil not go agant the fda the fda wont go agant the doctors who priceibe it m was takeing for blepharospasm now i wont to get off of it all to geather iit had to mant side effects i dont have a doctor im only 64 im not on madacade or madea care or sssi i had to wait to get my cheech when i turn 62 i watied in till i was 62 an a half i have a small disaility comeing with the other church i still comfued i m not drawing my company retire ment i take ti kind of blood prrusser medacations at the conbie time they took both blood prusser medacations an put it in to ome my eye have dobble visions glass do not help all the time i t hard to be in side a bulding when your eyes is closeing on you i dont kike people call mre a homosexual an a queer all the time i nor a agay people keeep giveing a goos cussing all the time i had to quiet going to the flea markeet because cuss me out every time i went thier how would like people come on yourr land trying to beat you up juat because they wont to sale thoe drugs in in my heborhood no one is going to harrash me by telephone an just wont to be left alone an live my life in peape bach to the doctor the doctor had me disabled for a bad liver all these years an i could nt get any medical tretment ony iterfloream nterfroram the say i have hapice c i dot have h c i go the wFFLE HOUSE IN VIDOR TEXAS ALL THE TIME AN THE BUGER KINGA LLTHE TIME DALLAR TTORE ALL THE TIME WITH MY SISTER SHE CAN NOT DRIVE AN CANT DRIVE BECAUSE SHE WAS IN A BAD CAR RACK AN HER NERVIES IS TO BAD TO DRIVE I AM NOT MAD AT ANY ONE JUST WONT TO LIVEIN PEACE WITH EVERY ONE EWHAT ORNG IN WITH THAT YOU CAN CHEECK WITH THE VA AN THE DOCTOR I USED TO BE UNDEFD YOU CAN COME AN GET ME AN WE CAN WORK THIS OUT IN A PEACEFUL WAY WHAT GOOD IS IT WHEN SOME ONE TTY TO SHOOT YOU WWITH A PISTOAL AN HI A BRASS ROADE ARE SHOOT YOU IN THE MOUTH IN IT COME OUT YOUR BUT ARE IM NOT BULIET PROFF JUST GOD GRACE AMACE GRACE I FIIL SORRY FOR THE ONE WHO ALLWAY IN THE WORNG WISH THEM NO HARM KENAVIS YOU CAN CAKK THE FBI AN THE CIA MABE THEY WILL SAY 305 BEAMMER |
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Posted by: judith k ® 11/10/2010, 23:05:16 |
Hi Kenavis, Well, I don't understand this! Maybe you are having such a hard time because the VA is a government agency, and they have a lot of rules that may sometimes become stumbling-blocks. Many drugs have off-label uses. You know from reading this bulletin board that many people take various medications to help control spasms, especially along with Botox. And that one of the most common medications prescribed is clonazepam. I get Botox injections, but also take clonazepam because it seems to help the Botox work better, and is especially useful when the Botox begins to lose effect. I get clonazepam by prescription, but never, ever has the label said 'for blepharospasm.'
What are the bad side effects you have that make you want to stop taking it?
It wouldn't be a good idea to stop abruptly.
I think you should do it with a doctor's supervision. (I am assuming you have never had panic attacks, which is what it sounds like you are saying.) You should work with a doctor, particularly because a doctor can observe you. Maybe taking clonazepam at .5 mg 3x daily will give you side effects that you don't like, but .5 once a day may help with the spasms without giving you side effects.
Perhaps it's not so strange that you are having trouble getting a doctor to help you because you are dealing with a bureaucracy. But I have no idea how that works. Weren't you going to request a copy of your medical records at some point? Did you ever get a copy? I seem to remember a discussion about this some months ago. I'm really sorry that you are having such a difficult time with the VA and I hope you can get to talk with a doctor who makes sense. There are all these posts on this bulletin board, and also lots of articles on the internet that talk about clonazepam being one of the top medications used in helping to treat blepharospasm.
Sorry I'm so confused about this! Good luck,
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Posted by: kenavis ® 11/11/2010, 00:11:50 |
thanks no coment better let the oberbertorry handle it let the insurance handle it an the an the lawers handle it spies are ever where even on this web site good day |
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Posted by: judith k ® 11/11/2010, 08:45:46 |
OK, well good luck! Sorry if I asked too many questions! I ask a lot of questions when I'm trying to understand something. You have a good day, too, Kenavis. VETERANS DAY!
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