Restless Legs Syndrome (RLS) Discussion Board

I've been taking clonozapam for about 8 yrs and also need depression meds. I started at .5 mg and it worked great. Then after a while I needed to up the dosage. At one point I was up to 2mg it wasn't working and I was very frustrated. At one point I tried Requip and after throwing up for 2 days, vivid dream, hallucinations, etc. I quit the Requip. My doctor feels the depression is partially from the "severe sleep deprivation" I suffer. No kidding! Actually, I'm glad he is aware of this. I told him I wanted off the clonozapam because it really doesn't work now and I don't like the drugged feeling all the time. I dropped from 2mg to 1.5mmg to 1mg fairly quickly, but when I tried to drop to .5 mg I ended up in the hospital with a migraine of all migraine's including other sypmtons of nausea and dizziness. I sent a note to Dr. B and he said it absolutely sounded like withdrawl and that some people suffer and some don't. Now my doctor is having me take Remeron and I am trying to back off of the clonozopam again. He said to try .5 at a time every other day for a week and then every day for a week. I reminded him of the hopsital visit and he changed his mind to .25 at a time. I guess I will have to be patient.

I do have a question though, has anyone used Remeron? It's an antidepressant that makes you sleepy and he's hoping for now it will work with my Cymbalta to help me sleep and also function during the day. I do sleep really well with it if I take it before the legs start kicking, and I am up less time if I have to get up. It does have one drawback and it is it takes about 10 days to two weeks to start working in your system without side affects. Mine right now can be described as "out of body experience" and the notes they put one the RX's about not driving until you are sure of side effects(?) they aren't kidding.

I'm really glad to see that others have be on clonozopam and had to stop taking also. Not glad they have a problem, but glad I am not alone. I also hope this works for awhile because my dream is to get off everything except what will give me some peace from my restless legs.

Hello all... I've been taking Klonopin (Clonozapam) for about a month. The Rx says to take .5 to 1mg at bedtime. I've been taking .5mg every other night. I think it's helping some... in that I feel like I've been sleeping better - waking up less often in the night.

However, I don't see much difference at all in the daytime sleepiness or the RLS symptoms.

I'm so frustrated, because the multiple doctor's appointments are killing our finances. We opted not to do the sleep study because it was just too expensive - even with insurance.

I wish I would have been keeping track of my symptoms before I started seeing the doctor about it. I've said in another post... that I almost feel like it's gotten worse since I've started "paying attention to it".

UGH... I'm rambling...

Hi Scarlett,

Have you asked your Dr. about taking Requip or Mirapex along with the Clonazepam to try to stop your RLS symptoms? Usually they will prescribe something along with a benzo. to help with RLS. I'm not surprised that the Clonazepam is not working by itself.

Let us know how it goes.

Sincerely,

Maddie

Slee,

I also take Cymbalta for depression, along with Mirapex and Clonazpepam for RLS. The Clonazepam is working now for the sleep and RLS control, but I anticipate having to go up on it because I've read all about the tolerance levels. That's not something I want to do. I too had a horrible headache just going from 1 mg. to .75--nothing that put me in the hospital, but certainly was painful. No surprise about severe sleep deprivation causing depression or it could have been the other way around. Either way, it has to be corrected and sounds like you might be on the right track.

I've heard that Remeron is a good drug and many people take it for depression, sleep, etc. I personally haven't taken it, but maybe someone on the forum can offer some advice.

Let us know how it goes.

Maddie

maddielouise1 wrote:Hi Scarlett,

Have you asked your Dr. about taking Requip or Mirapex along with the Clonazepam to try to stop your RLS symptoms? Usually they will prescribe something along with a benzo. to help with RLS. I'm not surprised that the Clonazepam is not working by itself.

Let us know how it goes.

Sincerely,

Maddie

Hi Maddie -
I was sort of thinking the same thing after reading some more posts around here. But the Clonazepam was my doctor's alternative to Mirapex. His first treatment (after I refused the sleep study) was a starter pack of Mirapex. It did NOT work, and if anything may have started a downhill slide of worsening symptoms. So when I returned, he wrote for the Clonazepam.

but long time RLS sufferer. my nightly dose of clonazepam was as high as 8mg, but I have taken it since 1991. I'm currently down to 3mg (first week of titrating from 4mg to stopping). I have been given a ReQuip 2 week sample kit. I would like to start the requip once my clonazepam dose is between 1-2mg. any thoughts?

I think I posted way back on page 2 but then reading more of the posts it just proves how different everyone is with meds. We were talking last nite in rls voice chat about how people are so different with taking different meds. Some can't take anything without having a really bad time and then there is me, I seem to be able to take almost anything. My only problem is finding the right med that doesn't bug me up.

So far I have been on clonazepam since 1985 and at one time on 2mg's everynite without side effects. Now I am taking 1mg and it's no different. Also never had a problem with the requip until they gave me too much. Now I am on mirapex and that is working great.

We also talked last nite about all these different meds we take and what they can do to out minds and bodies. Like I said it was very interesting chat last nite and also last week. I really love the voice chat and hope more ppl will come listen to Lynne and me talk. lol Love you Lynne

Everyone is different and every med works different in our bodies. I am one of the lucky ones I guess. Take care, Jeannie/stitch

You are sure right about that, Jeanie. The good news about benzos is that about 50% have NO problems with them (regarding stopping them). I have tended to be extremely sensitive to everything we've tried so far - from a tiny dose of Mirapex causing augmentation in a week to a relatively small dose of clonazepam causing horrific withdrawal. Go figure.

What I appreciate about this board is that we all can safely list our experiences so that anyone coming here, new, can see the gamut. Now, that might scare some people I suppose, but it calms me. It makes me feel that there is both hope...but that I need to be watchful. It gives me knowledge and to me, that is rarely a bad thing.

Glad you like the voice chat! I tend to prefer typing to talking, but completely appreciate that others feel the exact opposite from me. It's so wonderful that Hos took the time to research this and set it up for those who prefer the talking to typing. Thanks again, Hos.

This question is for Scarlett (if she sees it). I'm just curious about why you declined the sleep study.

I had one and was very glad I did. It actually brought the RLS/PLMD to light, whereas otherwise, I don't know if it would have really come up. I knew I moved like crazy, but never thought it was unusual-ha!

I was also hesitant to have a sleep study, but it ended up being fine. Just curious if you feel like sharing.

I'm taking Klonipin (the generic form) .5 mg. together with Neupro patch and carblevo (Synamet) 25-100mg one or twice a day to control my severe RLS. The combination works pretty well, but I hate taking drugs. I tried to cut the Klonipin to one every other day and after a week, got headaches (which I normally never get) and insomnia. It didn't seem to affect my RLS much, so I was hoping I'd be able to suffer through. Not being able to sleep at night was too much for me, though. So, you've got company with being unable to get off it without miserable withdrawal.

maddielouise1 wrote:This question is for Scarlett (if she sees it). I'm just curious about why you declined the sleep study.

I had one and was very glad I did. It actually brought the RLS/PLMD to light, whereas otherwise, I don't know if it would have really come up. I knew I moved like crazy, but never thought it was unusual-ha!

I was also hesitant to have a sleep study, but it ended up being fine. Just curious if you feel like sharing.

I would love to have been able to do the sleep study...
But thank goodness I researched it before the day came! It was strictly a financial decision.
It was going to cost me over $850 out of pocket. My DH has been off work for a year due to an injury, so every bit IN the pocket counts. We just couldn't scrape that much all at once, and still eat.

The doctor has suggested "making a deal" with the owner of the lab... But that hasn't come about quite yet...

Ahh ... only just found this thread and have some stats of my own to contribute re clonazepam tapering.

Most regulars will remember that I did a complete "detox" off of ALL of my medications back in the first half of 2006.

I was on several medications at the time (cant remember which ones exactly) but the clonazepam would prove to be the toughest of the lot ... because I had unconsciously allowed myself to reach a gigantic dose of 5mg/day.

Yes, my poor sleep doc was horrified and I was furious at myself for letting it get out of hand; however, it was me who did it to myself, so it was going to be me who would suffer the consequences of the weaning off.

If I remember correctly, I started cutting back in 0.5mg dosages once a week until I was down to 3mg, then it was by 0.25mg per week as by that stage I was the insomniac from hell. I had an agreed plan of tapering of each medication from my sleep doc.

Yes, I did manage to see through the detox to the end and remained completely drug free for a total of three weeks to ensure there was nothing "hanging around". Yes, it was pure torture NOT being on any drugs as I have Primary Refractory RLS.

Now, I am back on Clonazepam (amongst other things) and my daily dosage varies between 2mg & 3mg, depending on how "dopey" I am from the previous night's dose. Of all the medications I'm taking, it IS the most addictive and I am very careful to NOT take an extra half dose here and there if i'm having a bad nights sleep, and instead, find other ways to get back to sleep.

Hope that sheds some light on your initial query way back on page one of this thread.

Take care of you

Oh Nadia I just read your post. OMG 5mg/day of clonazapem. I also take clonazapem and it is definitely addictive. When I first started taking clonazapem about 2 yrs ago I was only taking .5mg and it seemed to work in the beginning and then I decided to go off of it "cold turkey"

My previous dr did not say it was habit forming so I paid dearly for it. I was up for seven (7) nights walking the floors, punching my legs (I looked like an abused wife) and also crying. I was lucky if I got 1/2 hour sleep a night.

When I went back to this dr she said "oh this is habit forming" duhhhh. I blame myself in one way as I should of checked this out. She had me take 1mg so I would start sleeping and it did work.

I am now going to a neurologist and he weaned me down to .75mg as he said this one med that you do not go down quickly. Whether I will get off of it completely I do not know as it does not give me any weird feelings in the daytime.

I will do what I feel will help me and the clonazapem does help me sleep but do not sleep through the night. He has me on .125mg mirapex which I am trying to get off of. Will be seeing him next month and will see what he will give me.

Thank you Scarlett,

I thought maybe it was because you were afraid to have it done for some other reason. Will your insurance not pay for any of it-assuming you have insurance under the circumstances?

maddie - Well, I was initially afraid for silly reasons... I talk in my sleep, and swear like a sailor in my sleep too. But I got over those fears quickly. LOL

That cost is including what my insurance would pay... I have a very high deductible, and pretty much nothing is "covered" until that is satisfied. And even on top of that, there's the 20% that I am still responsible for.