RLS and Klonopin

[CharleneNich]

Hi. New here. Does anyone know anthing about treating RLS with Klonopin (generic is Clonazepam)?? I have severe primary RLS with events 4-5 nights a week and sometimes EVERY night of the week. I have not filled the prescription for Clonazepam 1mg. 1-2 hours before bed given to me because I am afraid of benzodiazipenes(sp?). I know that they are highly addictive. I am also afraid of continuing to live with the increasingly severe and painful symptoms of RLS. I don't know what to do now.

[ctravel12]

Hi Charlenenich
I am so sorry that you have rls but glad that you found us. I had severe rls with pain 24/7 and now I take clonazapem .5mg and doing fine with the rls. I have not had to up my med and hope that it continues. Yes it is very addictive,but if works I am not going to change. I used to take Requip and it was not good for me. I know what works for one may not work for another and sometimes you have to try different meds to see how they work for you. I hope that you find relief soon as I know what it is like to go through what you are going through. I know other members will post info to you too. Welcome and please keep us posted on you are doing. This a very caring and supportive group.

[CharleneNich]

Thank you so much for replying to my post so quickly. I think the worst thing about RLS is, first, getting a doctor to listen to you, second, describing your symtoms to people, third, watching their facial expressions change from sympathy to complete disbelief when the word "syndrome" is mentioned and fifth, starting to believe that maybe you really ARE making it all up in your head.

I am, at the moment, standing equal distance from my fear of addictive drugs and my fear of living for the rest of my life with this syndrome. The sleep loss is effecting my personality and my life. The actual symptoms are bordering on unbearable and getting worse. Sometimes I wish I would have an accident that would sever both of my legs at the knees. But then I remember reading about "phantom pain" and think, "wouldn't THAT be a kick in the teeth? No legs and still stuck with the symptoms!"

You said you were taking .5mg every night. Should I worry that I am being prescribed 1mg and would it be reasonable for me to precribed half that dosage to myself?

[ViewsAskew]

CharleneNich, this is a tough point in your life. . .

For what it's worth, I would not try Klonopin first. In the reading I've done, it doesn't work all that well for most of us. Yes, it does help some, but to me the risks of extreme dependence and addiction are not worth the help it might bring.

I'd start with the Mayo Clinic's Algorithm. It's in the "sticky" post about Managing RLS in the New to RLS section. This will guide you do make some decisions about what to take.

No drug that you take is without possible problems. If you are in the majority, you'll have no problems. The people who write here are often in the minority (those who don't have any problems often don't visit us), so take what you read here with a grain of salt.

Getting through this point is really hard - the point when you realize how much RLS has control over your life. Grieving what is lost and fear of what is ahead. Hopefully you will find some help here during that process.

[ctravel12]

Hi Charlenenich
I would talk to your dr first about your dosage. Like I said before what works for one may not work for another person. I myself still have bad sleep habits and will be seeing my neurologist this coming Tuesday and will run this by him. Reading other posts is definitely a plus. I read alot of the new and old posts and get a lot of wonderful knowledge from them. I hope all works out fine for you.

[becat]

Hello to all,
First wanted to say Welcome to CharleneNich. Is this the first thing your doctor has tried? Or you have tried? There are many other options out there, but suffering is not one I'm in favor of. I'm with you there were days I would think "won't it be cool to just have legs and live life, instead of my legs controling my life?" it happens that way too often. But there is hope. Fact is that most of the medications we RLSers take are phyically addictive, not that we crave them, but our body become dependpent. Noramlly, what works for you might now for someone else, that is a standard answer around here. Why? because it's true and everyone knows it. At some point Charlene it comes down to Quality of Life, what's yours like? And if your scared of the medication, call the doc's office and ask why this one, explain to me how safe I am taking it, might there be something less addictive? Talk to them about it like Charlene said. But if it works for you, don't blink, and take your life back.

And to say that yes, CT it does work for many people. The problem lies in coming off one of these medications if it stops working or the doses become to high. I know your 5mg. is working for RLS and that is awesome, it's something all of us have as a personal goal. You can get the sleep in tow and your hubby home things will be sure to feel better. But yes, you need to sleep. Good for you that the RLS is not an issue....I won't tell you I'm jealous......LOL

Hugs to all
Lynne

[jan3213]

Hi Charlenenich

You've already received some very good adivce. I just thought I'd add to the mix.

I'm on .5 mg. Clonazepam nightly in addition two 2 mg. Mirapex. I've had RLS all my life and have been on different meds over the years and, for the past 6 months, this combination seems to be the most effective
for me. I've been on higher doses of Clonazepam and I can tell you that you have to be very careful when decreasing the dosage. But, that's the case with a lot of drugs we RLS'ers take.

I started taking meds about 25 years ago (approx.)--I didn't question my doctor. However, if you have any apprehension about taking any medication, I would certainly research, ask my doctor dozens of questions, etc. Times have changed: I've changed. I question everything now. LOL

Quality of life is very, very important to me. That's why I follow the regime I do. But, as eveyrone has said, we are all different.

I'm sorry you have RLS, am very, very glad that what you are taking seems to be helping you so much, and am also very glad that you have found this site. I hope that you find it as helpful as I have since I joined over two years ago.

Wishing you peaceful rest..........

Jan

[lynnie59]

Hi! I have been MIA for awhile but here I am. I wish I could say that I have been missing because my RLS is liveable but no, it's been worse!

Clonazepam cought my eye becasuse I used to be on it for my different reasons but decided to cut it out of my regime and I just use Mirapex now. It was my wonder drug, but now I find my symptoms are so much worse.

I am wondering if I should ask my doc to put me back on Clonazepam plus my Mirapex...I know we are all different, but maybe it would work for me...something has to...and soon!

[jan3213]

I would ask your doctor, talk to your doctor, about what's been going on. As I said above, everyone is different and I wouldn't presume that what works for me would work for you. But, it wouldn't hurt to talk to your doctor and see what she thinks about changing or rearranging your meds.

I'm so sorry you are worse. I think most of us go through those cycles and I have been on different meds or combinations of meds or dosages of meds since I was dxed with RLS.

Good luck to you and please let us know what happens.

I'd really be interested to see what you find out from our doctor.

Wishing you peacefull rest.....

Jan

[ctravel12]

Jan3213 I was reading your post to charlenenich. You said that you take .5mg of clonazapem and 2mg of mirapex. I just went to see my neurologist today and he asked how I was doing and I said with the rls it is doing fine'; however cannot sleep through the night. I told him that I had a rough month with my niece passing away and then a week later my great nephew passing away and my husband has been out of town since the 22nd of Sept and will be coming back today(YIPPE LOOKING FORWARD TO SEEING HIM). He asked if I had a sleep study and told him that I had one this year. I thought they were going to send him a copy so he asked me to stay as they faxed over the info. for him and found out that I have mild PLMD as the sleep study showed that I woke up about 7 times. Anyways, he gave me a free sample of the mirapex .125mg and gave me a prescription to up my clonazapem. He said that I should sleep through the night. I read some of the posts and also on the internet regarding mirapex and to tell you the truth I am really scared to take it as some said it causes augmentation and I had that with Requip. How are you doing with all of these two meds together? Also do you have any trouble with your sleep habits?

[ctravel12]

Hi again Jan3213. I forgot to mention that when he brought up the Mirapex he told me to check it on the internet and the rls.org and if I did not feel comfortable in taking it,then do not take it. Also when I made a mention all that went on this month that I also was crying no reason and he said that I had alot happening to me in one month and that can cause alot of things. He definitey feels that I am not depressed and neither do I. I am just sleeped deprived. BTW I am feeling alot better as I am sure that it is knowing that my DH is coming home today.

[jan3213]

Hi Charlene

I've been on Mirapex for years (I don't know how many but at least 10 years).... I've been on different doses of Mirapex during that time. A lot of people do fine on it, but a lot of people have problems. Augmentation is one of the main problems.

I thought I was suffering from augmentation, but now I don't know. I've been on this combination of meds since May and have been doing fine.

I think you just have to do what you think is best for you. If you have any qualms about being on Mirapex, don't go on it. There are other drugs that might help you. For me, right now, it's working great. So, I'm going to stay right where I am. But, honestly, I think it's a good idea to question what your doctor prescribes.

I do hope that you find something that works for you. I have to tell you that before my back surgery, even with this combination of drugs, I never slept through the night without having to get up once or twice--sometimes for an hour or two. But on the whole, it worked pretty good. Since my back surgery, I've been doing so good in the RLS department.

Good luck!!!!

Jan

[walkindafloors]

So glad to hear mention of using Mirapex. When I got frustrated with my MD and went to a neuro, she immediately changed me to Mirapex at night. I still do the sinemet during the day (sometimes 2 extended release tabs) and Ultram at bedtime but am noticing much difference in the daytime (use to be I couldn't sit at my desk but rather stood up typing!). At night I am sleeping longer, when I sleep. I'm trying to learn my body signals and obey - for instance, finding that if I go straight to bed after showering around 10:30 - 11:00 pm, I can sleep for about an hour or so (until my dh comes in), waking up with legs in such knots I have to get up and walk the stairs for nearly 30 - 40 minutes, usually staying up between 1-3 hours then being able to sleep until morning. I have not called the dr back because I can't tell if my not sleeping is totally due to my legs or meds. Dh tells me I am still kicking in my sleep, but hey, I'm sleeping! Then I'll go 2-3 nights without more than 2 hours of sleep...no rhyme or reason... Thinking of trying the klonopin instead of ultram??? Any thoughts?

[becat]

Hi everyone,
Charlene you sound like your wearing a smile again, yeah I like that. New eyes comes with a hubby home, the hope of sleep.
Walkindafloors, nice to seee you as well, I think I have missed out on some of the post lately, I know you've been here, but good to see you too.
Ok, just my thoughts on this. I wish I hadn't gotten so much Mirapex in the begining, I wish that I could have stayed at a lower dose and had some pain meds (lesserthan what I take now), because I might have lasted longer with that combination than trying a little of this and that for almost 3 yrs.....I do see a need for dopamine medications with RLS. I'm no doc, but since dopamine is part of out basic problem it seems like the natural thing to use at some rate. Jan is right many people have used Mirapex for years and done well. but since each of us is different, it makes it hard to blanket statment us a group.
I have pain, thus the reason I would have added pain meds to my mix, and a low dose of Mirapex. If you are still having trouble in any corner do talk to the doctor, we all know it is a bit of hit and miss.
And what I really what the docs to learn that RLS is a disorfer of variables. Stress, weather for some, travel, so many things make this RLS one thing for a week and then whammo something happens and it's something else for the next.
Don't be scared of Mirapex, or pain meds, or anything, if you really educate yourself about the medication. You do listen to your body, and report changes that are + or - then you should be as safe as anyone else.
It's a learning process for us all, but I think we need to remember that we all have our own little (lol or big) qurks that make it hard to just say "here this works for everyone!
Hugs to you all.
Lynne

[ctravel12]

Hi everyone. Lynne, yes I am smiling again as my hubby came home yesterday and I actually slept better last night and hope that it continues. I guess I did not realize how much I missed him until I saw him. I had mentioned to him that it was longer this time and he agreed as he usually only stays for about three weeks. He was in a shooting tournament this past weekend and took first place as he did so last year. HIs team did a nice thing with their plaques as their was some young boys there and they all gave them their plaques. What a nice thing to do. Jan3213, I decided not to try Mirapex and will continue with clonazepam as it is working good with my legs. I did have a little (just little) problem with my legs last night but was able to go to sleep. That Mirapex just scares the daylights out of me after what I went through with Requip and do not want that to happen agan. I am fortunate as I do not have it as bad as most of the members have it. Poor Lynne has it very bad and I say prayers for all of the family that they can get some much needed relief for the rls. I am so blessed to be a part of this family and hope that I can help other people as much as you people have helped me. Love you all.