[ToonTownAngel]

From the research I've found, Clonazepam has been the "recommended" treatment. I can't say this has worked for me but more likely due to the fact that I dislike taking a habit-forming prescription drug and so have always avoided it unless I absolutely have to (i.e. if I have three or four episodes of being up through the night I'll take a pill).

Anyways, I hurt a nerve in my knee a few months ago and finally got around to going to the doctor about it. She prescribed Lyrica 25 MG (Pregabalin) for 30 days. I've been on it for two weeks now and haven't had a single episode of being up through the night. This is absolutely AMAZING as my trigger seems to be lack of sleep (the more tired I am the more I'm up) and for the past two weeks I've been exceptionally tired (worked 12, 10-12 hour days in a row). Has anyone else had any experiences with this? I can't find anything online.

[patllib]

Your post was very interesting to me. I will mention Lyrica to my sleep specialist, and see what he says. I take two klonopin per night, and am to start three, but I don't want to up it. I do not think it helps, even the two. I am taking it, and have had episodes almost nightly for about two weeks now. Only one night of peaceful sleep. I cannot find anything hat lets me feel or know that I will have one of these episodes. I sometimes think it is if I am upset or anxious upon retiring, but that is not always true. Last night, it seemed as though I was dreaming the entire night, poked at my husband, and one time was pulling the bed covers saying I was looking for my coat. Needless to say after two hours of my husband not getting sleep, I went to another room. Does anyone see a relationship to taking ambien to this, because I sometimes have to take it to get back to sleep.....maybe just 1/2? Thanks for reading/listening. I'm tired.

[ToonTownAngel]

Well I've been off Lyrica now for a couple of days now and guess what? You got it...last night I was up and around throughout the night. So I Googled "sleep pattern Lyrica" and found this interesting tidbit buried in a link:

"...The results of the study, which was actually a review of findings from 14 previous Lyrica clinical trials, indicated that 'pregabalin treatment significantly decreased pain and pain-related sleep disturbances by week 1 in patients with all except those with osteoarthritis. These improvements persisted throughout the trial.' In my notes from a visit to the headache specialist last spring, I wrote that LYRICA IS THE FIRST DRUG THAT MIMICS NATURAL SLEEP PATTERNS. This study is the only place I’ve found support for this claim. The article says that HEALTHY TRIAL PARTICIPANTS HAD SIGNIFICANT INCREASES IN STAGES 3 AND 4 SLEEP AND WOKE UP LESS IN THE NIGHT WHILE TAKING LYRICA VS. A PLACEBO."

All I can say is it worked for me...but there is a but (isn't there always?). I felt kindva' "out-of-if" for the month I was on Lyrica...not quite myself....almost foggy-headed. I'm going to ask my doctor if taking Lyrica would work on an occasional basis....I'll let you know how I make out.

[patllib]

Your last post on Lyrica was in June. Have you discovered anything more about taking this for REM. I am now taking 3mg. of Klonopin everynight for sleep, and my nightmares have diminished greatly. I still have episodes, but not so drastic. Instead of screaming, I may just yell. I would love to find out what is causing this. I am still wondering if it is taking Wellbutrin which I have been on since before this all started. The sleep events became worse after a life threatening experience.

[ToonTownAngel]

I have an appointment with my doctor on November 17th to discuss my sleep issues. I've been re-injuring and re-injuring my shoulder during sleep and it's not healing....since it's related to RSBD I'm hoping she's going to have something to say. She's probably the best doctor in my town because not only is she a med-lab technician but she's also a licensed pharmacist...so she knows her drugs!! (And she absolutely refuses to put me on Clonazepam as she says it's too addictive.

I'll post an update after my visit...

[ToonTownAngel]

Sorry it's taken me so long to respond.

First off, let me tell you a bit about my doctor. She started out as a med lab tech (so she knows her tests and lab results) and then moved on to become a pharmacist (so she knows her prescription drugs). She then moved on to becoming a physician who specializes in family medicine. So what I'm saying is she knows her stuff.

I told her about how I didn't have any sleep issues the month I was on Lyrica and she said that that made perfect sense as Lyrica is a drug that works on your neurological (nerves) system. Originally meant as a medicine for MS patients, it is now used for patients with fibromyalgia and has recently been prescribed for patients with Restless Leg Syndrome (which brings me to a quick aside, my mother has RLS and she's been on Lyrica now for about six months and has not had one single symptom of it since she's been on this medication). Anyways, my doctor told me Lyrica is a drug that has no issues surrounding it. It's not addictive. It doesn't cause any other medical issues, etc. etc. etc. About three weeks ago she told me she would investigate REM Sleep Behaviour Disorder and write to the drug company about me and my experience and see what they had to say. I'll give her a call someone in January to see if she's had a response.

My doctor told me that sometimes this is how "cures" are discovered - serendipitously like this - a patient is given a drug for one reason and it cures/fixes something else.

I'll keep you in the loop….but I’m optimistic…..

[patllib]

Thank you for your reply. I anxiously await your reply. I have been taking klonopin for so long; am concerned how difficult it will be to quit. I also take ambien during the night when waking up if I can't get back to sleep. I just don't understand how this all started. As I said, the 3mg. of klonopin has diminished my acting out, but not totally. The episodes seem to run a course of maybe a week, or two, then quit for a while. I have not related it to being tired....since I am always tired! Thanks again, and hope to hear from you. What city do you live in? I live in Pittsburgh, Pa.

[ToonTownAngel]

I live in Canada about 300 miles north of Montana.

A girlfriend of my has Restless Leg Syndrome and she's going to ask her doctor about Lyrica. I'm curious to know if it works as well for her as it did for my mom.

[ToonTownAngel]

Hello! So my journey continues....

My family doctor managed to get me into the sleep disorder clinic for an initial appointment and I met with the doctor this past Wednesday (January 20/10). How quick was that?! I expected to have to wait upward to a year and got in in two months!

After extensive questioning (two hours) the sleep disorder doctor told me he thinks I have Narcolepsy! I told him "NO WAY!" ('because isn't that the sleep disorder where you fall asleep while you are walking, talking, working, etc.?). He went on to say that he actually thought that I may have more than one sleep disorder (oh joy!). He also said that since I dream immediately upon falling asleep and my "sleepwalking" is ALWAYS in the first part of the night that it can't be REM Sleep Behavior Disorder because people with that disorder only sleepwalk in the latter part of the night. So my question to everyone out there is, is that your experience? Do you do your rambling, kicking, wandering, talking, moving, etc. in the first half or the last half of the night?

Anyways, the doctor is so intrigued with me because I don't seem to correlate to anything he's seen before that, even though the waitlist to get into the sleep lab is two to three years long, he wants to see me within the next two to three months. I'll keep you in the loop.

BTW, we did talk about Lyrica and he (like my family doctor) said that this is how other "cures" are found and then he gave Viagra as an example (medicine is created/prescribed for one medical issue and is then found to have another benefit/cure). He said he'd be hesitant to prescribe Lyrica (which is the exact opposite of what my family doctor said). I think I'll just wait to get a "proper" diagnosis.

So I'll post again when I have something new to tell.

[ToonTownAngel]

My girlfridend with the RLS ended up on 150 mg of Lyrica and, unlike my mother (who takes 75 mg) it did not work for her.