Restless Legs Syndrome (RLS) Discussion Board

I went to see the doctor today to get refills on my meds. The P.A. I usually see isn't there anymore so I had to see the regular doc. He asked how long I have been on Klonopin. I told him since June of '08. I'm taking 2.5 mgs every night. He said he don't like Klonopin because of how easy you can become addicted to it. I told him that one night I didn't take it cuz my mom was sick and she has a bad heart. I wanted to make sure I could hear her if she needed me. Within 2 hours of getting up the next morning (about 7 hrs of sleep) I was having withdraws and had to take .5 mgs to make it subside. He said I was addicted to the Klonopin badly and need to come off it.

So starting Sunday I will go down every Sunday .5 mgs unless I feel bad withdraws. Then I go back up .5 mgs until the next Sunday.

I knew I had become addicted to it but I didn't think it was that bad. Shows what I know! I'm not looking forwards to this, but I don't want to end up so addicted I can't get off the Klonopin.

Please, wish me luck.

I wish you good things, Heather, and being successful getting off the Klonopin. I to take Klonopin and have taken it for years. I take only .5 mg at bedtime. I have read how addictive it is and how hard it is to get off it. I remember in the past that I have stopped taking it for awhile and didn't notice any bad results. But my neuro wants me to continue taking it. I also take Mirapex. I don't sleep well anyway, but do sleep better since starting on the Mirapex.

So I wish you success in getting off it. Let us know how you are doing.

BETTY/WV

Thanks Betty. I went off it when I was only taking .5 for a sleep study with no problem, but with being so addicted to it now...... I don't look forward to this at all. I'm a former addict, so this really scares the crap out of me.

Heather, it may help you to think about this a bit differently. You're NOT an addict regarding this drug! You're body is physically dependent. Period. You're not drug seeking, lying to get multiple scripts, feeling that you MUST take it or you'll die....all those things that an addict may/can do.

You're body is simply used to it.

That doesn't mean that withdrawing from it is any easier, unfortunately.

I found .5 much too fast but it works for some people. I hope it works for you. But, if it doesn't, know that you can still do it going more slowly.

Hang in there.

I didn't think of it that way Ann. Thanks.

I will do what I need to do to get off the Klonopin. If it takes months, then that's what it takes. I'm just afraid of the withdraws. I went through them when I was addicted to Tylenol 3 as a teenager. I went off those cold turkey. This time I will be weaning off the med. I just have to remember to take it slow and not push myself.

I was only one it for 6 months or so. It took me about 7 or 8 months to stop it. I was only taking 1.0 mg. I accidentally stopped them cold turkey (just not thinking) and was so sick I thought I would die!

As soon as I figured it out, I started them again. We tried cutting by .5 and I was just as sick. Then I just started shaving off small amounts and each week taking off a bit more. I wasn't precise, I'm sure, and that may be why I stayed a bit sick for the whole time. I wasn't deathly ill, but I wasn't hungry, was a bit nauseous from time to time, and had some bone aches.

I was a very happy person when I finally could stop it. I know, now, that it's not a drug that works for me (it also didn't help my RLS - but it definitely helped me stay asleep) so I doubt I'll ever be tempted to try it again.

I am glad that Ann made her point.

We must remember we are not addicts, we are sufferers who are depedent on a medication.

Heather,
I was on Klonopin for many, many years when a doctor told me that once you are on Klonopin you are always on Klonopin. And that got me thinking and I decided to stop. Klonopin has a very long 1/2 life - about 4 days. So I actually felt okay for the first three days and on day four I couldn't walk/move. It felt like I had a wet wool army blanket on top of me, cold sweats, etc. It was my husband that said it sounded like withdrawal and then I remembered the Klonopin. That's when I started researching "Klonopin withdrawal" on the Internet. There is a lot of information on there (European countries are pushing especially hard to get people off it and their doctors are not prescribing readily). There are many ways to successfully stop Klonopin and the one thing they have in common is to take it slow!

The point I wanted to make is that since it has such a long 1/2 life you may find that it is Wednesday (assuming you cut the dose on Sunday) that you feel the worst.

The second point is that knowing what the withdrawal symptoms were really helped me. Some people might find them scary but for me it was easier once I knew what was actually happening and I handled them much better. I let my husband know what I was going to go through and he was on board with it and very supportive. However, I did find that things were only about 10% as bad as what people had posted. It didn't take anywhere near as long as what I had read. So there are pros and cons to reading on the Internet!

I wish you all the best and am so very glad that you've decided to go this route. I will never regret stopping Klonopin!
Shari

mutsy67 wrote:However, I did find that things were only about 10% as bad as what people had posted. It didn't take anywhere near as long as what I had read. So there are pros and cons to reading on the Internet!

Shari

But, sometimes they are. Like you, I think it's good to know the range.

Some people have NO withdrawal symptoms at all. They can stop cold turkey even after years. The estimate is about 50% of people have no reaction to stopping.

The other 50% have a reaction from mild to extreme. It's great that you were in the mild range, Shari. I hope that Heather is, too. Just in case, I'm glad she knows that others are not so she's not surprised if hers isn't as mild.

Several of us here have used information from The Ashton Method, a UK based group that helps people get off of benzos. It's named after a doctor, if I remember correctly. Initially, being on the forum helped. After awhile, my symptoms settled down and I was steadily cutting back, albeit tiny amounts, so I spent much less time there. The forum has moved since I last needed it (5 years ago, I think), but searching on The Ashton method should find it.

Heather,
I just gotta throw in my two cents, because I do not agree with the doctor... altho I do think, Heather, you should do as your doc says. I have been on Klonopin since 1998, that's 12 years. I started on .5 split in quarters. Today I am on .5 three times a day. I had very gradual dose increases, including scripts that threw in an extra ten on top of what I was on, as an in-between solution. There are other people out there, I've read about them at different health websites, that have been on Klonopin even longer than me.

The only time the drug becomes problematic, in my opinion, is when either (a) you gotta have more and more and more too quickly and get no relief, or (b) you fall over and crash into a coffee table and don't remember it (something similar to that happened to the Fleetwood Mac lead singer). So, my point is that if Klonopin is helping you, what is the big problemo? I have to take other drugs that I am dependent on and are very hard to get off, but as long as I'm comfortable, by golly I take my medicines, I'm a happy camper, and my quality of life is so improved from the times when I really thought I would lose my mind.

On the tapering question, Heather, another way to judge your reduction in dose and length of time, there's a real simple way I read about online one time, which I did myself on another medicine: You cut dose a small amount and live with that until you start to feel normal. THAT'S when you cut back again. You keep going until you get down to nothing. After you're off, you will experience a couple weeks of being spaced out, but at long last you will be free of any drug you go off. Some drugs are so powerful that another drug has to be given to ease the withdrawals. One more tip, my own advice, if you find yourself really upset and not handling it very well at a particular time during your tapering situation, just remember, you can go to your pills, break a pill into quarters and take a quarter, and you'll make it through... just go right back down to the dose you were working on the next day.

Of all the medicines I've taken and had to get off, I gotta say that the SSRI antidepressants were the worst. Talk about a "life medicine," gosh, that one sure is. On the other hand, some people don't have any problems with it. So, go figure. Heather, I wish you success in whatever new management of your RLS that your doc thinks will work best, but if at any time you think he's not helping you well enough, change docs. Not that you need to now, by any means... it's just I went through a few before I found the ones that really care about my situation, will go thru great lengths to help me out, and I'm settled with my selection of medicines and most definitely don't want to rock the boat on those. I mean, I'm going to have RLS for life, so my medicines for that will be with me for life, and same thing with my other health conditions.

It just made me so mad that your doc just up and freaks out about some tranquilizers that help you... gee whiz. But perhaps you will do better without the Klonopin, I hope so, and as long as he gives you something else that works for you, then I think you will do better, because after all, "Every drug (rose) has its thorn."
GG

Wow, that's so sad..

I'm sorry this doctor can't distinguish addiction from legitimate dependence. I'm also sorry he seems to have convinced you you are addicted as well.

I hope you are able to ween off it without any problems, and that you receive a suitable medication in its place. Because it does not sound like this doctor has much of a plan so far.

too true, what zach says.

Thanks everyone.

When I said I am an addict I wasn't just counting the Klonopin. I was addicted to Tylenol 3 when I was 15. I started off taking them as needed like the doc said. I then started to realize I felt damn good on them, so I popped them when the high started to go. 1 about every 2 1/2 hours.

I am going down every Sunday .5 mgs like the doc said. I had the starts of a migraine and bad nausea for the first week. Last week and so far this week I have just had a annoying headache and slight nausea.

I feel I'm doing well coming off the Klonopin. I'm going to find something else to take once I'm fully off the Klonopin.

Heather, it's great to hear that you're doing so well coming off the Klonopin. Are you taking that for RLS or to help you sleep?

I've been on Klonopin for decades. Once in awhile i'll go off of them b/c in my head I need to know i'm not addicted to anything and then theres the times when I'm having problems with my RLS even with the 3mg of Klonopin and will stop and start again. I've never had a problem going off of them.

Brenda