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Posted by: kaba ® 02/19/2010, 11:06:46 |
Hi all - I see on the board that several of you are having a lot of relief with clonezapam. I have been taking it now for about 3 weeks, but have not really had any relief at all. How long did it take for this medication to work for you? My doctor has now increased it from 0.5 to 0.75 which I have done for a week with no better results. The only nice thing is it sure makes me sleep well.
As to quitting cold turkey - I am never again doing that. I used to be on hormon therapy. Than when one of the big scares came around I asked my doctor I would like to quit and he told me "sure, just quit taking it". That's how I ended up with IBS. It took them a miserable months to figure out what was going on, and now I am stuck with it. Not nice. Klara in Central Texas |
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Posted by: Norm ® 02/19/2010, 11:57:42 |
Hi Klara, I have been on Clonazepam for over a year now and I don't feel a big difference and never did feel like it 'kicked in'. I am prescribed 3 mg a day but generally take just 2mg once in the morning and once before bed. I am also on baclofen. Any more and it makes me VERY irritable. In Dec my doctor doubled both medications to see if it would help. I really found out that it doesn't make me a "happy camper". It does help me sleep when I have nothing on my mind though.*LOL* But when I tried to stop cold turkey, I had a headache for the entire time, felt like maybe the flu was coming on and horribly fatigued. I started taking it again and now I generally have a slight headache most of the time and still I'm fatigued but not as bad. But for helping the eyes I don't feel like it helps other than a placebo effect. Although, the two have seemed to give some relief when I forget to take them. Have a great weekend
Modified by Norm at Fri, Feb 19, 2010, 12:00:08 |
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Posted by: edie ® 02/19/2010, 13:46:04 |
Klara, I have been on 2 mg ,1x per day, I take it at night of clonezapam - for me it just smoothes the rough eges out - I sleep much better - and my brain feel more restored - sorry I know that sounds a bit odd. I do know that I felt a quickly after I was upped from 1 mg to 2 mg - good luck - we are all different - I hope you find the blanace that works best for you as soo as possible! Good Eye Days to you! Edie |
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Posted by: Marilee ® 02/19/2010, 14:44:50 |
I take .5 mg, two or three times a day. I agree with Edie that it helps me sleep better, and helps me relax, so not so much stress. My doctor prescribes it as a supplement to Botox, so especially as the Botox is wearing off, it helps quiet the jerking and spasms. But the help it gives is very subtle, and not something that takes all discomfort away. Still, I feel that I benefit enough to continue. I notice a nice difference after I take a pill in the morning, about an hour after I get up and start activity. By the way, my doctor suggests I take smaller doses (.5 mg) as needed, rather than a larger dose, because it does have a residual effect as talked about in another thread. Best wishes. Marilee |
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Posted by: Delaine from TN and traveling ® 02/24/2010, 13:46:42 |
Both the .5mg and the .25mg made my eyes easier to keep open and decreased the forceful closure within 30 minutes, but the .5mg made me feel a little fuzzy and it wore off in 4 hours. The spasms came back and my eyelids felt heavy and thick after 4 hours. I decreased it to .25mg and take it 8am-12pm-4pm-7pm-10pm since 2001. I have a low tolerance to any medication. Before BEB I was a cheap drunk...I could only drink 1 mixed drink, 1 glass of wine, 1 wine cooler and I had a buzz! 1 Valium, Artane, Ativan, antidepressant or pain med in any dose knocks me out. I took Elavil for Fibromyalgia for 6 years before BEB and I could only take 10mg at night and slept like a baby. Nothing woke me up. Our chemisty is different and meds affect us in many ways with different results. |
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Posted by: lizlid ® 02/24/2010, 17:33:59 |
I've been on clonazepam since the onset of my BEP and since I was diagnosed with Dystonia 6 months later by my Neurologist who controls my meds now. I started out taking 2 .5mgs in th AM and 2 at bedtime with Baclofen 10 mg 3 times a day... I took a nap every afternoon and could hardly stay awake after dinner either but it definitely quited my condition which included constanted eye spasms and blinking and head bobbing. Weight matters in medication too. I weigh 200 lbs. so I would need more than a woman weighing 120 lbs. Now I take (because insurance doesn't cover my clonazepam anymore) 1 .5mg in the AM and 2 .5mg at night and I take only 2 Baclofen a day unless I experience more problems than usual then I can add back the 3rd pill. I take medicine for seizures too and leg cramps all involved in the dystonia... this all seems to work pretty well with the botox injections. I can't drive or read a book but I can use an enlarged computer and see a huge TV... you have to adapt... Live goes on.
I lost my husband last month and that is worse than my illness. |
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Posted by: pdb ® 02/24/2010, 20:14:51 |
It sounds like you are getting a bit more help from medication than some of us get. Thank goodness for that. But there is no medication for your loss. I feel for you on that one. Peter |
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Posted by: Shirley Barr in New Mexico ® 02/25/2010, 12:53:47 |
Just wanted to express my sympathy in the loss of your husband. You have a lot to deal with. We're always here. Shirley in New Mexico |
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Posted by: lightwave ® 02/25/2010, 17:20:11 |
I have to agree with you. I lost my husband several years ago in a horrible accident. My only son was with him and felt responsible. Suddenly, I had no one to drive me to and from work, help with all the chores, and provide moral support. I have BEB, Meige, cervical dystonia (bobbing head), and hand and leg cramps. It will take a while to grieve your loss (both of your husband and life as it once was). You will adapt because there is no other choice. Just know that there are others on this Board who have been down that road and are here to help. Glynda in Houston, TX |
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Posted by: June in Toronto ® 03/01/2010, 11:44:41 |
My deepest sympathy on the loss of your husband. You have a lot to deal with - chin up and God Bless. June in Toronto |
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Posted by: lizlid ® 02/24/2010, 17:34:27 |
I've been on clonazepam since the onset of my BEP and since I was diagnosed with Dystonia 6 months later by my Neurologist who controls my meds now. I started out taking 2 .5mgs in th AM and 2 at bedtime with Baclofen 10 mg 3 times a day... I took a nap every afternoon and could hardly stay awake after dinner either but it definitely quited my condition which included constanted eye spasms and blinking and head bobbing. Weight matters in medication too. I weigh 200 lbs. so I would need more than a woman weighing 120 lbs. Now I take (because insurance doesn't cover my clonazepam anymore) 1 .5mg in the AM and 2 .5mg at night and I take only 2 Baclofen a day unless I experience more problems than usual then I can add back the 3rd pill. I take medicine for seizures too and leg cramps all involved in the dystonia... this all seems to work pretty well with the botox injections. I can't drive or read a book but I can use an enlarged computer and see a huge TV... you have to adapt... Live goes on.
I lost my husband last month and that is worse than my illness. |
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Posted by: JetHart ® 02/19/2010, 17:17:39 |
I was prescribed two 0.5 mg clonazepam tablets per day, but found myself rather unsteady (as someone said in an earlier thread) and being a bit tippy on my feet. Sleeping was great, but waking in middle of a dream was accompanied by a period of confusion about what was reality! In general I felt pretty foggy and stupid a lot of the time. The clonazepam really helped control the head tremor that occurred during bad facial spasms. After 2 months, I decided that I needed to reduce the dose. Now I split a 0.5 mg tablet in half and take one half in the morning about 4:30 (before going to the gym) and the other half about 11 or 12. The fog lifted and I am able to walk steadily. Yay! The other good effects are somewhat reduced, but still in effect. I'm comfortable with the current dose. In the past I've taken lorazepam with spotty results, mainly centered on the anxiety that all the blinking created. Clonazepam is better in my experience. Joellen |
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Posted by: denise g. ® 02/24/2010, 20:38:06 |
Hi Joellen, Forgive me for getting off the subject a little...You mentioned head tremor during bad spasms and BINGO..I had to respond..I've been experiencing head tremor..feels like it's at the back of my head/base of neck almost..it has happens maybe a half dozen and always when I am at my very worse..just before & the few days after botox...Today, I made a appointment with a Movement Specialist Physician for that very complaint! I'm wondering if is a sign of progression as I never had it for the first 6 years just the last 2...I do take Klonopin/clonazepam and yes it does seem to help..I take it as needed...somedays none except bedtime but when I having alot of tight spasms & this head tremor, I use it up to twice a day...Question: Have you always experienced the head tremors or did it develop later on? Sorry, for side tracking; your comment about head tremor just really hit home with me today. Thanks, Denise G. on the carolina coast;) |
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Posted by: Marilee ® 02/25/2010, 14:02:19 |
Forgive me if I cause more pessism, but my CD (cervical dystonia) started with a tremor or jerking at the back of my neck, at the hairline. That was before I had any bleph symptoms, but they soon emerged also. You are wise, Denise, to see that movement specialist. If he/she isn't familiar with Dystonia, however, please see a neurologist who is, and who gives Botox. That kind of CD, that I have, is easily controlled with injections across the back of neck, and what a relief it is! However, since you girls both described yours as "tremors" and not jerking, I might be completely off base. If you can get on the DMRF (Dystonia) website, you can learn more. Unfortunately, that bulletin board is right now not working, but you can read what is already there. Best wishes, Marilee |
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Posted by: Linaka ® 02/19/2010, 18:51:07 |
Hi Klara, I take .5 mg Clonazepam. It helps me sleep, and that is about it. I receive Botox which lasts me about 2.5 mos. for the BEB. I started off with Baclofen, 10 mg. Then the dose was increased to 2x day. With the Clonazepam, it was too much, and caused "weakness," especially in my legs. I weaned myself down to 2.5 mg and take it when the Clonazepam wears off. So far that regimen is working for me. Take care, Lin. |
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Posted by: afisher ® 02/19/2010, 19:25:41 |
I don't notice that it relieves symptoms so much as it relaxes the muscles after a day of pulling and squinting and blinking and trying to hold them open ... My eyes get so sore and hurt from all this work and the Clonazepam relaxes my eyes and helps me sleep so I am fresh for the new day ahead to go at it again :-) Andrea |
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Posted by: kenavis ® 02/19/2010, 22:54:18 |
I do notice my side effects fulling down with out nitice when walking in my yard. moveing the yard an setting on a five gallon bucket .when planting my seeds allso i limiet my coffie intake to two cups a day reading the side effects really helps to know when you can go shoping an going out to eat . as for a helping me go to sleep after takeing it the clonazapam for for bb i was shock to read about way i had to try to fuctions in when i go places .i had to take off my glasses which is tented an at 5% brown some are tented more .forgetting the glasses are on your head an not on your eyes i somethang we all face each day at least i im not takeing botox an an had my eyes operated not met but we all here to help eachone to cope with our side effects an i do wish i could go back an see a doctor but have no doctor who i can get a apoment with going over my records an helping me out .the va is the only one i can get a apoments trying to keep my blood prusser down an an takeing all my medacation on time i have better peace of mind in drawing an writeing seting around the coffie shop an larning not to talk to much is helping me out trying to get your house clean up n your yard an land clean up we all can relate to thi hobors helping nobors an hve a good habor hood warch trying to stop peopl brakeing to houses an talking on my cb radio helps me over come a lot of stress just being abled to pronoince my words my friend is helpeing out s i dnt feel so isolated an an stay in the house an not go out fishing like used to do an as for hunting deer an other amials i could take pictures of them we have wild rack cones an owels an going out in a boat an trying my new water sky board wolld be a lot of fun but i will lieve it to the younger generations but it would be fun to desygn an build new type of prototypes hvea bless day an thanks to every body on this board we all need each other each day kenavis |
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Posted by: kaba ® 02/20/2010, 09:35:37 |
Thanks for all your in-put. It sounds as if most have the same effect as myself - better sleep and relaxation. I appreciate your comments. Klara in Central Texas |
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Posted by: kenavis ® 02/22/2010, 01:35:38 |
Thanks to all of you .I can sleep good an relax.Clonezapam takeing it for twenty years>learning how to vent an get on with my life. Going places i niver been before an having a good time .helping out other people in life is rewarding.
have a good blessed day kenavis |
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Posted by: Shirley Barr in New Mexico ® 02/21/2010, 14:40:32 |
Hi Klara, I think that most people that have had a bit of help with the lessening of their symptoms with Klonopin (or any of the other Benzodiazepines), knew quite soon. You take it and then within an hour, you should be aware if it is helping or not. It may be a very subtle difference. Many people take it and are aware when the benefits wear off and it is time to take another dose. Dosage is important but most that find relief don't seem to need a very large dose at all. Somewhere between .25 and .5 mg every 4 to 6 hours. Klonopin has a long "half life" (the amount of time that it takes to clear half of the medication through your system) so it continues to work for quite a while after you've taken a dose. Some doctors prescribe it to be taken ONCE a day (usually at bedtime) for this reason. A once a day dosing schedule can be effective for some while others prefer to take it 2 to 4 times a day. That's a matter of personal preference and also the preference of your doctor and how it works best for each individual. The actual amount of medication that one takes in a 24 hour period would be the same. In my opinion, if you've taken it for 3 weeks and you haven't noticed a difference in your symptoms, it's not likely to be helpful to you ....except as a sleep aid. Best of luck to you, Klara. Shirley in New Mexico |
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Posted by: kaba ® 02/21/2010, 16:19:14 |
Hi Shirley, yes, I don't think it is helping me. I have been taking the increased dosage for about 4 or 5 days and have not felt any improvement either.
I seem to be a little more forgetful, but don't know whether this could happen in such a short time, so am wondering whether I am imagining this. In any case, I will probably ask my doctor when I get my injections on Tuesday (hurrah!) if I can quit taking it. Thanks for your reply. Klara in Central Texas |
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Posted by: noonsmom ® 02/24/2010, 18:01:07 |
When i first learned that i had BEB (two years ago), my doctor said there were three treatments:
1. Valium 2. Botox 3. Surgery Naturally I opted for #2. But the Botox does wear off, as we've all observed. Thanks to Judith and a few others here, I learned about Klonopin. My husband takes it for other issues, so I experimented with lower doses of his pills but cutting them in quarters. (We have a very good pill cutter.) It seemed to help so I asked my doctor for my own Rx. She proscribe60 .5 ml pills, to take "half in the a.m. and half in the p.m. Well I've experiemented further with that little pill cutter. I quarter them! I take one quarter (ie. .125 ml) in the a.m. Around 2:30 p.m. I feel the need for another quarter. Then i take a third quarter after supper. Which leaves the last quarter or another day in combo with other day's leftovers. It seems to be working. I'm only five weeks out from the Botox shots and started the Knlonopin last week. I'll be monitoring the interaction of the klonopin with the wearing off of botox and will be happy to report back. I'm pleased that I can take such small doses and get some satisfactory results. The only negative impact I've had so far is, when the barometer drops, I get very tired and need to lie down for awhile. Otherwise I'm very alert. To those of you who are taking larger doses and not liking the side effects, I recommend the "less is more" approach. See if the smallest dose makes any change at all and stick to it. Marcia |
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Posted by: noonsmom ® 02/24/2010, 18:05:10 |
POST SCRIPT: I didn't mean ml - I meant mg. Can't get my metric system straight. |
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Posted by: kenavis ® 02/24/2010, 20:16:54 |
I take clonezapam 0.5MG TAB three time a day .Trying to keep my every eight hours three time a day but u says on yh bottle for anxoety but in my Doctors records an reading the BERBRF web page says for Blepharospasm
WHEN writeing a Diagnoded for the patients recrds and procobeing a medications the facts needs to be corect a lot of medications is procibe for a lot of other reasions but it need s to be omn the warning when you recieve each percipions before you take it when i put eyes drrops in my eyes it take ove two hours before i can drive are walk around becouse of my eyes are so bury i can not hardy see setting down warsh TV are typing on the computure are reading a book
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Posted by: denise g. ® 02/24/2010, 22:18:33 |
I've taken Klonopin for a couple of years..low dose...tried it at higher dose when first diagnosed and always fell asleep so I stopped taking it within a very short time. Ok, I now take it as needed(up to 3 times a day..IF needed that is the order) 0.5mg(which is a half of a full 1mg tab)... however, I usually half that again..so I take 0.25 a very low dose if needed during the day at bedtime I take 0.5mg it helps me sleep deep which gives me good eye time in the morning hours, but not always. I think, the dose is going to vary greatly, what works for me may not work at all for you. Everyone, is different and because a DR. says take 1mg 3 times a day everyday...does not mean you cannot call and ask for him to lower or increase the dose..once you see how it effects you & if it is effective or not. Also, Klonopin and all benzo's should never be stopped abruptly...you have to taper off. Seizures can occur from cold turkey, along with restlessness & anxiety & increased pulse & blood pressure. I worked in mental health/detox R.N. for 16 years and have seen seizures when clients were not upfront with the large amts. they were using or came in for alcohol detox and forgot to mention that they were taking Benzo's daily for 6 months. So Cold Turkey Is Very Risky...Never risk that with Benzo's! Also, thinking back it seems I took Klonopin several times over a few weeks before I ever felt relief..now, I have noticed and timed it..If, I am having bad spasms and take Klonopin..it takes about 20 to 30 minutes to feel relief and it isn't usually total relief just a decrease in the intensity so it's more bearable for me. I wish you many good eye days and hope Klonopin will help.
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