Clonazepam for Sleep

[debbluebird]

As I read through the posts I realized that this was the first drug a doctor (a neurologist) put me on. It wasn't long before I knew that it wasn't helping. I then moved to a different state, so consequently saw a new doctor also a neurologist. The second one started me on the Mirapex. I don't really remember how the clonazepam effected me.
Ever since I found out how little sleep, that you actually get, I've felt concerned. (Probably me the nurse)
After my last two weeks of very little sleep, I feel for you

[stitch]

Thank you Beth for all the information. I never thought it could be the pain meds. It will be three years this November that I have cut back. And my legs started getting bad about 6 months ago. I do know all about Augmentation and I had it when I was on too much Requip. I checked out what I am taking of Pramipexole and I am at the limited. I have read all about RLS on Southern California site and posted many times on the board and was in the live chat room for awhile with Becat. We became very close. I even asked Dr. Buchfuhrer a question in the chat room. I have been around for along time and I do appricate you answering my post. Jeannie/stitch

[badnights]

stitch/jeannie - I knew I'd seen your name a lot, years ago when I first started here

[stitch]

Beth, That's me and I show up every so often. I like reading the boards. It was along time ago when becat was posting on the boards. We got real close and I miss her. I tried to send a pm but it didn't go. I hope you are doing well and hope the boards has helped you. I stopped coming because my bad back was over taking my RLS. Now I am just getting old. LOL

[badnights]

haha we're all getting old, it's only a matter of who realizes it yet! Becat helped me register for the board and we exchanged a few personal emails. She and Ann and Susan, and others, helped me out when I was in dire straits. It was such a relief to talk to people who knew what it was all about.

I'm glad you stop by - I hope it isn't because your RLS is getting worse

[Greensteps]

I would never go on clonazepam again. Mind boggling for me to get off and only on for a month. Augmented on mirapex after two months. I'm so leery now of taking any mind altering drug to help my severe rls. Sticking with opioids .

[ViewsAskew]

greensteps, your reactions sound very similar to mine. Do you know what your ferritin is? Mine was around 8, if I remember correctly, when I augmented (a high of 16 at the time) in about ten days.

[badnights]

Ann had a nightmare of a time getting off clonazepam too, greensteps, like you after taking it for not very long. All these medications affect everyone so differently. Opioids are probably the best bang for the buck for most people (effectiveness vs. side effects).

In my personal opinion, the dopamine agents should be banned from RLS/WED treatment until what they're doing to us is properly understood. And the benzos- - they have a role for some people but not for most of us.

[stjohnh]

...

In my personal opinion, the dopamine agents should be banned from RLS/WED treatment until what they're doing to us is properly understood. And the benzos- - they have a role for some people but not for most of us.

Well, the actual way that most medicines truly work is only poorly understood for all medicines. Dopamine agonists provide excellent relief for many people for many years. There are no other medications that are as easy to use that provide as good relief for a large number of people.

[Yankiwi]

I'm not a doctor or a scientist but from reading anecdotal evidence it seems to me the problem with dopamine agonists used to treat RLS is that they work so well at first, that many front line doctors don't know about augmentation and allow the dosage to go too high.
My first ropinerole prescription said "take ONE (.25mg) tablet at night (2-3 hours before bedtime, can increase by ONE tablet every week up to a maximum of FOUR tablets as required. The first tablet was a miracle. By the time I got up to 2.5 tablets I had augmented. Luckily I was on this discussion board and cut back in time, back to one .25mg tablet. It isn't perfect but I can deal with the RLS especially knowing the hell that so many are going through, often due to augmentation.

[ViewsAskew]

...

In my personal opinion, the dopamine agents should be banned from RLS/WED treatment until what they're doing to us is properly understood. And the benzos- - they have a role for some people but not for most of us.

Well, the actual way that most medicines truly work is only poorly understood for all medicines. Dopamine agonists provide excellent relief for many people for many years. There are no other medications that are as easy to use that provide as good relief for a large number of people.

Here's my take for what it's worth....Holland's point is sad, but true. That doesn't mean, to me, that we couldn't change things to better treat patients.

If I were Empress and could decide what happened in the world, I'd absolutely change how we used DAs. Empress Anabel's rules would be...

- Because of the augmentation risk, daily use DAs would be prescribed only when serum ferritin was above 100; anyone who was anemic would have to get iron in the target range before trying these drugs. Semi-annual blood work would be required.

-Any long term DA use would require drug holiday at regular intervals.

-Screening for augmentation and compulsive behavior would be required during treatment (and a risk assessment before).

-Docs would have to demonstrate how to successfully deal with augmentation before they could prescribe it. If anyone did what my doctor did, he/she would have to do something along the lines of restorative justice, lol, such as having to wear a device that simulated RLS as well as work at a free clinic.

-The max dose would be much smaller than it is now!

-All patients would be told of augmentation and there would be a hotline for them to call in case it happened.

And, maybe more....but my legs are going crazy so i have to get up and walk.

[debbluebird]

I totally agree. My Doctor did the same thing. Kept increasing my dose. While I was augmentating he said I must have some other disease. What was happening to me shouldn't be happening. He probably still doesn't have a clue.

[badnights]

What I meant wasn't very clear the way I wrote it. I should remember to be very literal here. Given the existence of augmentation and the extremes of suffering it involves, and given the suspicion expressed by a number of specialists that use of DAs in WED may cause long-term changes in dopaminergic function - not to mention the personal experiences of a number of us who would swear to a permanent worsening of WED after augmenting - given these two things, I would like to see DAs removed from first-line status until the question of long-term damage from DA use is settled.



from Hening, Early, Chokroverty and Allen

"There is a concern that augmentation represents a significant disruption of the dopaminergic system that may become a major problem for the patients later in life. The delayed onset of augmentation suggests some slow but persistently developing process disrupting dopaminergic function. We assume that at some critical point this process stabilizes and does not continue causing dopaminergic disruption. But the delay in expression of the problem may reflect a slow, persistent process continuing indefinitely. In such a situation the effects of this slow, persistent process could be masked for years by slow increases in doses of the DA's. It will take several years of extensive clinical experience treating RLS with these meds before we will know the long-term significance, if any of RLS augmentation".

[stjohnh]

...

In my personal opinion, the dopamine agents should be banned from RLS/WED treatment until what they're doing to us is properly understood. And the benzos- - they have a role for some people but not for most of us.

Well, the actual way that most medicines truly work is only poorly understood for all medicines. Dopamine agonists provide excellent relief for many people for many years. There are no other medications that are as easy to use that provide as good relief for a large number of people.

Here's my take for what it's worth....Holland's point is sad, but true. That doesn't mean, to me, that we couldn't change things to better treat patients.

If I were Empress and could decide what happened in the world, I'd absolutely change how we used DAs. Empress Anabel's rules would be...

- Because of the augmentation risk, daily use DAs would be prescribed only when serum ferritin was above 100; anyone who was anemic would have to get iron in the target range before trying these drugs. Semi-annual blood work would be required.

-Any long term DA use would require drug holiday at regular intervals.

-Screening for augmentation and compulsive behavior would be required during treatment (and a risk assessment before).

-Docs would have to demonstrate how to successfully deal with augmentation before they could prescribe it. If anyone did what my doctor did, he/she would have to do something along the lines of restorative justice, lol, such as having to wear a device that simulated RLS as well as work at a free clinic.

-The max dose would be much smaller than it is now!

-All patients would be told of augmentation and there would be a hotline for them to call in case it happened.

And, maybe more....but my legs are going crazy so i have to get up and walk.

Ann,
I agree with your points about prescribing a dopamine agonist, if you look at them they mostly revolve around better education and communication by doctors. For some reason RLS has been given short shrift when it comes to doctor's education. I'm not quite sure exactly why that is. It could be that the name RLS suggests that it's a minor problem. If a few doctors were successfully sued by patients who were not informed about augmentation problems I imagine that would change.

I'm a retired doctor and even though I have RLS, I received no training about RLS while I was in my training and even though I did yearly continuing education studies I don't remember any of it having to do with RLS. Because RLS was not on my radar, I probably missed many cases.

[debbluebird]

I believe that most people, and doctors believe that RLS is a minor thing, almost nonexistent. Unless you have it, you don't get it.