Klonopin, anyone?
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Guest
Klonopin, anyone?
Went to a new doctor today and we are trying something new. The old meds don't seem to be working well so he wants to try Klonopin. I know some have tried it or are using it now. Any suggestions or concerns?
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I went to a new doctor also who diagnosed me with fibromyalgia 
BUT, he is very familiar with RLS and the current thoughts as to what causes it. He is taking me off the Wellbutrin (okay by me) and putting me on Klonopin. So I would like to get feed-back on this too. He is also doing research on Mirapex because he thinks I have been on it too long and may need a change. Maybe just use the Klonopin and Neurontin. But he said that if he took me off the Mirapex cold turkey, I would be coming after him with an ax! So he is doing some research (yes, a doctor willing to do research first!) to see what is the best course. I start tonight with the Klonopin and I'm a little nervous. Also not doing the best with the fibro diagnosis. He is sending me for a nerve conduction test and EMG to rule out a few other things and a blood sugar test for diabetes. Wants to see if I have peripheral neuropathy or not. The last doctor diagnosed me with PN without any tests. So he wants to be sure. Anyway, any info you can send us would be welcome.
BUT, he is very familiar with RLS and the current thoughts as to what causes it. He is taking me off the Wellbutrin (okay by me) and putting me on Klonopin. So I would like to get feed-back on this too. He is also doing research on Mirapex because he thinks I have been on it too long and may need a change. Maybe just use the Klonopin and Neurontin. But he said that if he took me off the Mirapex cold turkey, I would be coming after him with an ax! So he is doing some research (yes, a doctor willing to do research first!) to see what is the best course. I start tonight with the Klonopin and I'm a little nervous. Also not doing the best with the fibro diagnosis. He is sending me for a nerve conduction test and EMG to rule out a few other things and a blood sugar test for diabetes. Wants to see if I have peripheral neuropathy or not. The last doctor diagnosed me with PN without any tests. So he wants to be sure. Anyway, any info you can send us would be welcome.Awwwwww ((((Rubyslippers))))))
(((((((HUGS TO RUBY)))))))
I'm so sorry to hear that Ruby, but maybe relief is in sight with the right diagnosis. I fear that I am not much help for the Klonopin question, Jan will be. She'll be helpful with the fibro info as well. I know that I stopped Mirapex all at once and with a little time I can tell you it wasn't as easy as I thought. I have seen a spike in miagrianes since I stopped taking it. Geeeezzzz never thought it did that well for me.
I just wanted to send you my love and hugs and support. Your not leaving us now are you?
Guest welcome to the group. Don't worry, someone will chime in on this subject and help with info.
Hugs to you and keep your chin up our Ruby, OZ can be a beautiful place.
I'm so sorry to hear that Ruby, but maybe relief is in sight with the right diagnosis. I fear that I am not much help for the Klonopin question, Jan will be. She'll be helpful with the fibro info as well. I know that I stopped Mirapex all at once and with a little time I can tell you it wasn't as easy as I thought. I have seen a spike in miagrianes since I stopped taking it. Geeeezzzz never thought it did that well for me.
I just wanted to send you my love and hugs and support. Your not leaving us now are you?
Guest welcome to the group. Don't worry, someone will chime in on this subject and help with info.
Hugs to you and keep your chin up our Ruby, OZ can be a beautiful place.
Clonazapem/Klonopin
I'm taking it,I have for just about two years now.First I started with one tablet,which helped for a few days,then increased it to two tablets which helped for awhile,with very few episodes.Lately I have been extremely tired and have been getting very very terrible episodes.
I'll shake my arms and legs and just let my arms fall with a thud if I'm doing a simple task.Praying that the people I'm with don't think I'm angry or crazy.I'm sick of it and sick of people who don't believe in it.I'm sick of people who think we're crazy.I'm always walking and I use a treadmill which I think helps my legs.Don't really know what to do for my arms and especially my torso.I twist my arms,massage them and when I'm alone shake them about.I just realized,I have the small weights,if I use those,it could help.The motion should help.
To get back on the subject,the med makes me extremely tired and when doing certain activities,makes me dizzy.My family physician is giving this to me as a followup to when it was originally prescribed to me.It's difficult to find someone who specializes in rls.I've finally decided I MUST find someone!!!I have an appt to see a neurologist at the end of February.
I'm trying to go back to one tablet at night.This is my third night,and I'm not sure if it's a result of the change,but I have a very dizzy headache.Time will tell.I usually have a very difficult time concentrating and could not focus on a post this long(so I apologize that mine is long).
HHmm,can't do anymore.
I'll shake my arms and legs and just let my arms fall with a thud if I'm doing a simple task.Praying that the people I'm with don't think I'm angry or crazy.I'm sick of it and sick of people who don't believe in it.I'm sick of people who think we're crazy.I'm always walking and I use a treadmill which I think helps my legs.Don't really know what to do for my arms and especially my torso.I twist my arms,massage them and when I'm alone shake them about.I just realized,I have the small weights,if I use those,it could help.The motion should help.
To get back on the subject,the med makes me extremely tired and when doing certain activities,makes me dizzy.My family physician is giving this to me as a followup to when it was originally prescribed to me.It's difficult to find someone who specializes in rls.I've finally decided I MUST find someone!!!I have an appt to see a neurologist at the end of February.
I'm trying to go back to one tablet at night.This is my third night,and I'm not sure if it's a result of the change,but I have a very dizzy headache.Time will tell.I usually have a very difficult time concentrating and could not focus on a post this long(so I apologize that mine is long).
HHmm,can't do anymore.
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lifejoy
Hello Guest, and welcome 
I tried about 5 different drugs for RLS, including sinemet (cardiopa/levedopa) which was supposed to be "the best" for treating rls. After 3 months it was done and I was waking up with a feeling like i'd been out all nite partying. It was horrible. Anyways, the doctor cautiously started me on klonopin. I had tried 2 other benzos (prescribed more for insomnia, not movements) and ambien (don't bother..i can't believe docs would prescribe it for rls) and I can now say after about 6 months of klonopin, that it works great for my rls. Klonopin has a long half-life in the body and therefore has less potential for addiction (perhaps the least of the benzodiazepine group.) In England Klonopin is only prescribed for epilepsy and related disorders, which explains why it has a good chance of doing the trick. When you first start taking it you will probably feel like you've had a little to drink or you will be sleeping like a baby...either is fine if it does the job, but the side effects will leave eventually. The most important advice I can give is to stick with exactly what is prescribed, no more no less. Let your body adjust. If you increase the dosage for "better sleep" you'll wind up a huge wreck and a prescription will be gone fast. I'm saying this for everyone who might reads this, not to you directly. I trust that you're responsible. Anyways..GOOD LUCK and God Bless
I tried about 5 different drugs for RLS, including sinemet (cardiopa/levedopa) which was supposed to be "the best" for treating rls. After 3 months it was done and I was waking up with a feeling like i'd been out all nite partying. It was horrible. Anyways, the doctor cautiously started me on klonopin. I had tried 2 other benzos (prescribed more for insomnia, not movements) and ambien (don't bother..i can't believe docs would prescribe it for rls) and I can now say after about 6 months of klonopin, that it works great for my rls. Klonopin has a long half-life in the body and therefore has less potential for addiction (perhaps the least of the benzodiazepine group.) In England Klonopin is only prescribed for epilepsy and related disorders, which explains why it has a good chance of doing the trick. When you first start taking it you will probably feel like you've had a little to drink or you will be sleeping like a baby...either is fine if it does the job, but the side effects will leave eventually. The most important advice I can give is to stick with exactly what is prescribed, no more no less. Let your body adjust. If you increase the dosage for "better sleep" you'll wind up a huge wreck and a prescription will be gone fast. I'm saying this for everyone who might reads this, not to you directly. I trust that you're responsible. Anyways..GOOD LUCK and God Bless Ruby, sorry it has taken me so long to answer you.
It's Jan
As you know, I've been on Klonopin for over five years and have had good results from it, with the exception of being too sleepy during the day when my prescribed dose was 2 mg. a day. I now take 1 mg. a day.
I was diagnosed with fibromyalgia in late October, 2004. Klonopin works very well in helping my symptoms of fibro, and, in fact, many people think it is the drug of choice.
Ruby, I know you have visited the following site, but I thought I'd let everyone else know it: www.immunesupport.com is an excellent site for support and information. Since many people who end up being diagnosed with fibro have RLS, I thought some of you might like to find out a little bit about the disorder. Just because you have RLS, however, doesn't mean you will EVER have fibromyalgia.
It is very interesting how RLS, fibromyalgia and other autoimmune diseases like Lupus, etc. are intertwined.
Good luck, Ruby. Gosh, I'm so sorry you have fibro; but, if you're anything like me, I was relieved when I found out what was wrong with me.
As usual, it is hard to find a good doctor who doesn't think it is "all in your head". And, the support of your family is essential. There is a "letter to normals" on that site (in a post someone wrote) that is a wonderful way to explain how your life will change. When I read it to my husband, his whol attitude changed from not wanting to discuss it at all (pretenting that I didn't have fibro) to acknowledging the fact that I do have it and being support toward me. So many people do just fine the rest of their lives, Ruby. That's the way I choose to deal with fibro! There is always someone worse off than me and, so far, I've just notieced little things.
Ruby, you take care! I'm always here for you!
Love,
Jan
As you know, I've been on Klonopin for over five years and have had good results from it, with the exception of being too sleepy during the day when my prescribed dose was 2 mg. a day. I now take 1 mg. a day.
I was diagnosed with fibromyalgia in late October, 2004. Klonopin works very well in helping my symptoms of fibro, and, in fact, many people think it is the drug of choice.
Ruby, I know you have visited the following site, but I thought I'd let everyone else know it: www.immunesupport.com is an excellent site for support and information. Since many people who end up being diagnosed with fibro have RLS, I thought some of you might like to find out a little bit about the disorder. Just because you have RLS, however, doesn't mean you will EVER have fibromyalgia.
It is very interesting how RLS, fibromyalgia and other autoimmune diseases like Lupus, etc. are intertwined.
Good luck, Ruby. Gosh, I'm so sorry you have fibro; but, if you're anything like me, I was relieved when I found out what was wrong with me.
As usual, it is hard to find a good doctor who doesn't think it is "all in your head". And, the support of your family is essential. There is a "letter to normals" on that site (in a post someone wrote) that is a wonderful way to explain how your life will change. When I read it to my husband, his whol attitude changed from not wanting to discuss it at all (pretenting that I didn't have fibro) to acknowledging the fact that I do have it and being support toward me. So many people do just fine the rest of their lives, Ruby. That's the way I choose to deal with fibro! There is always someone worse off than me and, so far, I've just notieced little things.
Ruby, you take care! I'm always here for you!
Love,
Jan
No one is alone who had friends.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Thanks everyone for your support. I tried 1/2 pill the first night and it did nothing. So last night I tried 1 pill and I slept pretty good. I'm pretty sleepy this morning but my legs don't bother me. I need to check out the letter on the immunesupport website because Kenny isn't getting the idea that I need to slow down. I'm involved in so many things that take up all my spare time and I need to cut back. Already he's complaining because I don't want to go to a wedding shower tonight. My daughter and I hosted a shower last night for this young lady and I was glad to do it. But I really don't feel like turning around tonight and going to another one for her. Don't get me wrong, I love her dearly and wish her the best but I just don't feel like going out tonight. Clearly there are thunderclouds ahead. I have always been the one to pick up the slack and do what needs to be done. I don't know, I'm just depressed at this stage. Why does life have to be so complicated? I have a real disorder (okay, two of them) so why can't I educate myself and others and tyr to take care of myself without others giving me grief? Sorry, I'm just feeling sorry for myself. Jan, I will try the letter and see if that makes any difference. Thanks to all my friends.
No, Ruby, you're not just feeling sorry for youself!
It's Jan
I had the very same problem with Wendall! He would say that I didn't keep house like I used to!! He thought if I read about fibro, I would "catch" everything I read about. They DON"T get it and I think it's because men hate change!! Mayby wives would too, I don't know. But, it's hard for them to accept the fact that you will be a different YOU!! I am, but I can still do things, just more slowly! It may take me three days to clean my house when, even 3 months ago, I could have done it in 3 hours! Also, my priorities have changed, Ruby. A floor you "can eat on" doesn't seem quite as important to me as it once did. I have had to decide what's most important to me, too. And, girl, you still WORK outside the home. I'm fortunate in that I was able to retire before the fibro hit the fan! Hang in there, honey. You have my number and you have TONS of friends!!! We are ALL here for you. I'll see you soon, Ruby! In the meantime, ANYTIME you want to talk, CALL ME!!!!
Love you,
Jan
I had the very same problem with Wendall! He would say that I didn't keep house like I used to!! He thought if I read about fibro, I would "catch" everything I read about. They DON"T get it and I think it's because men hate change!! Mayby wives would too, I don't know. But, it's hard for them to accept the fact that you will be a different YOU!! I am, but I can still do things, just more slowly! It may take me three days to clean my house when, even 3 months ago, I could have done it in 3 hours! Also, my priorities have changed, Ruby. A floor you "can eat on" doesn't seem quite as important to me as it once did. I have had to decide what's most important to me, too. And, girl, you still WORK outside the home. I'm fortunate in that I was able to retire before the fibro hit the fan! Hang in there, honey. You have my number and you have TONS of friends!!! We are ALL here for you. I'll see you soon, Ruby! In the meantime, ANYTIME you want to talk, CALL ME!!!!
Love you,
Jan
No one is alone who had friends.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Becat, don't worry, I'm not leaving this site. Whenever I visit another site I just click my heels 3 times and say "There's no place like home" and travel right back to my friends. After taking Klonopin the past three nights (increased the dose after the first night with docs permission) I feel like the wicked witch who had the house fall on her. Sleep is much better but I am in a daze most of the day. Slept away most of the week-end and can't type worth a darn right now. But I will stick with it for awhile to see if those symptoms go away. I know from experience that the body needs an adjustment time for new drugs. The aches and pains have been a little better, at least until this morning. Went out to take care of my puppies and fell on the ice. I mean flat on my back!! Of course then the dogs thought it was a new game and jumped on top!! I felt like a turtle on its back 
Thought about just laying there as with the new drug fog it really didn't feel too uncomfortable but the dogs licking my face kept me awake. 
Just out of curiosity, lack of concentration and brain fog go hand-in-hand with RLS and fibro. How do others deal with it or don't you have that problem? I'm finding it harder and harder to concentrate at work and I forget to do things. I think I will take the day tomorrow to organize my office a little better although I do a pretty good job of keeping things going at work. Home is where I have the most problems. I semi-quit one group I work with in an effort to have less stress. How do the rest of you cope? Hugs to all who have been here for me. Love to you all.
Thought about just laying there as with the new drug fog it really didn't feel too uncomfortable but the dogs licking my face kept me awake. Just out of curiosity, lack of concentration and brain fog go hand-in-hand with RLS and fibro. How do others deal with it or don't you have that problem? I'm finding it harder and harder to concentrate at work and I forget to do things. I think I will take the day tomorrow to organize my office a little better although I do a pretty good job of keeping things going at work. Home is where I have the most problems. I semi-quit one group I work with in an effort to have less stress. How do the rest of you cope? Hugs to all who have been here for me. Love to you all.BRAIN FOG
Hi, it's Jan
AWWW Ruby, I'm afraid brain fog is part of it----I had it anyway with RLS, but it's worse with fibro, at least it is for ME. Maybe I'm just more susceptible to it!!! Ha!!!
I write things down, now. Keep post-it notes everywhere. I talk to a lot of people who have fibro and they say it's the same with them.
I hope you get adjusted to the Klonopin. I wish it made ME sleep like that. It's funny how different we all are with meds!!!
Glad to hear from you. I'm really sorry that you fell! Hope you are okay and didn't hurt your back!!!!!
Love you
Jan
AWWW Ruby, I'm afraid brain fog is part of it----I had it anyway with RLS, but it's worse with fibro, at least it is for ME. Maybe I'm just more susceptible to it!!! Ha!!!
I write things down, now. Keep post-it notes everywhere. I talk to a lot of people who have fibro and they say it's the same with them.
I hope you get adjusted to the Klonopin. I wish it made ME sleep like that. It's funny how different we all are with meds!!!
Glad to hear from you. I'm really sorry that you fell! Hope you are okay and didn't hurt your back!!!!!
Love you
Jan
No one is alone who had friends.
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musiclover
- Posts: 21
- Joined: Sat Feb 05, 2005 11:14 pm
Hi - new to the site but glad to find it! Also glad to find other Klonopin users.
I've been on Klonopin for so long I can't remember. Started with .5 mg pills as needed. After a year or so found I was waking up to take one everynight. Then gave in and took one before bed everynight and occasionally needed a second. (Anyone have this - sleep great for 1 hour then wake up with the legs driving you nuts. Probably - I haven't read a lot of the threads yet.)
Now I'm up to 1 mg tablets and occasionally a second if needed.
Looking forward to reading more!
I've been on Klonopin for so long I can't remember. Started with .5 mg pills as needed. After a year or so found I was waking up to take one everynight. Then gave in and took one before bed everynight and occasionally needed a second. (Anyone have this - sleep great for 1 hour then wake up with the legs driving you nuts. Probably - I haven't read a lot of the threads yet.)
Now I'm up to 1 mg tablets and occasionally a second if needed.
Looking forward to reading more!
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TheeMonkey
Klonopin et al
I have suffered from RLS for over 26 years. Currently I am on Klonopin, Carbodopa/Levidopa and Mirapex plus just started on Flurazepam for insomonia(what a waste). The combo drugs used to work for awhile but not any more. I am really suffering. The RLS has moved to my arms, etc. and I cannot get relief unless I take a hydromorphone which I have as a result of pain from post bladder (NeoBladder) surgery. I have read some posts about many drugs out there - ReQuip, Mirapex with Nerotin and Ultram for pain, Lunesta....I am so confused and my doc doesn't seem to know much more. (Internal Med). I live in a small town but do go to Mayo (Nuero there put me on the combo of the three). I am going crazy and could use some GREAT advise! Thanks!
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
The best advice I can give you is to either bug your current doctor until you get relief or try another doctor. All of us have our own cocktail that seldom works for others along with non-pharma methods to get us through (like hot baths, herbal teas, etc.) Just don't give up. 99% of the medical professionals out there have no idea what we are going through. It's up to us to educate them. If that takes bugging the crap out of them until we get relief or trying doctor after doctor until we find one that will help us, then that's what we have to do. It has taken me 5 years to find a "recipe" that works and now I have other medical problems to take care of that include more meds. Some of us can manage without meds, come can't. It's all about quality of life and only you can know what that is for you. Hang in there. Educate yourself and go armed to the doctor. Keep us posted on your journey. We care, we've been there, we're there now. The road to Oz is not an easy one. Love, Rubyslipper
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Mary Pierce
- Posts: 5
- Joined: Fri Mar 04, 2005 2:31 am
Klonopin and Mirapex and Iron
My RLS had gotten so bad that 2 mg a day of Mirapex had almost no effect. I was hospitalized with bleeding ulcers and severe anemia(just one month ago). Transfusions got me feeling better but RLS was still severe. Then I was put on iron supplements 3x/day. Relief was almost immediate. Now I take iron with every meal, one Mirapex in AM and one
Klonopin at bedtime. I am beyond ecstatic at the relief I have gotten.
Klonopin at bedtime. I am beyond ecstatic at the relief I have gotten.
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ViewsAskew
- Moderator
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- Location: Los Angeles
Glad the iron helped. I wish I could say the same. I've been doing it for 2 months and my RLS is now worse than it was when I started.
The Klonipin thing has me concerned. I started taking more because I was waking with RLS and insomnia (an effect from the Mirapex for me). But after a few days of an increased dose (1 mg to 2 mg from .5mg to 1 3/4 mg), I began to be unable to get out of bed in the morning. Then I was not functional for hours after I'd get up. My brain was tired and felt like an elephant was sitting on it. A few days ago I just started sitting and doing nothing for hours after I'd awake. I didn't actually feel like myslelf until 7 ot 8 PM each night.
I stopped it a few days ago. I switched back to temazepam because of the shorter 1/2 life. Today the fog was diminished. I actually felt awake by around noon or 1 PM. I'm hoping tomorrow will be better yet.
This drug is obviously not for all of us (but that's true for all of them, I suppose). I'm glad I had it when I really needed it, but I can see it's not going to be a long-term thing for me.
Ann
The Klonipin thing has me concerned. I started taking more because I was waking with RLS and insomnia (an effect from the Mirapex for me). But after a few days of an increased dose (1 mg to 2 mg from .5mg to 1 3/4 mg), I began to be unable to get out of bed in the morning. Then I was not functional for hours after I'd get up. My brain was tired and felt like an elephant was sitting on it. A few days ago I just started sitting and doing nothing for hours after I'd awake. I didn't actually feel like myslelf until 7 ot 8 PM each night.
I stopped it a few days ago. I switched back to temazepam because of the shorter 1/2 life. Today the fog was diminished. I actually felt awake by around noon or 1 PM. I'm hoping tomorrow will be better yet.
This drug is obviously not for all of us (but that's true for all of them, I suppose). I'm glad I had it when I really needed it, but I can see it's not going to be a long-term thing for me.
Ann