RLS, Fatigue, and Klonopin

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
cfkid
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Joined: Mon Apr 17, 2017 11:17 am

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Thu Apr 27, 2017 12:09 am

Rustsmith wrote:Sounds like you hit the jackpot, a doctor who understands RLS, listens to her patients and encourages her patients to become knowledgeable about their condition rather than feeling defensive about your knowledge and wants you to ask questions so that you can become more informed. I really hope that this works out for you.

As for the temazapam, just be aware of the fact that this is a benzodiazapine sleep aid and that benzos can be very difficult to get off of in the future. Benzos also are not supposed to be used with opioids, so if the gabapentin stops being effective, it could place you in a difficult position where you have to detox off the temazapam before you could try to opioid. However, that said, she has a point about needing to improve your sleep. So, just don't let it drag out too long if the temazapam doesn't seem to be working (benzos didn't work for me, the just made me walk around the house in a drunken stagger).


Thanks Steve. We did discuss that. Actually the klonopin has helped my sleep significantly, but I've still felt fatigue during the day. She believes that's just because it is not putting me into a deep enough sleep. So, adding the gabapentin should help me sleep deeper. She also said that due to the absorption issues with CF, I'll likely need to stay on these type meds for possibly the rest of my life to improve my sleep quality.

Also, since the half life of the temazapam is much shorter, I should have less hangover and it SHOULD be easier to come off, if needed.

Thanks for the advice and help!
Mark

ViewsAskew
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Re: RLS, Fatigue, and Klonopin

Postby ViewsAskew » Thu Apr 27, 2017 12:49 am

cfkid wrote:
ViewsAskew wrote:Yikes - doc leaving, huh? That sounds like it could be a good thing in the long run.


Well, it's interesting you say that. My jaw hit the floor when I met with my new doc today. I go through what's been going on, the fatigue, the kicking at night, blah, blah, blah. She says, "Well, I can certainly see why you're tired. None of the meds are treating your actual problem."

It seems my old doctor either didn't listen to me, or I didn't understand, or both. See, my RLS doesn't bug me a lot. Never has. The problem I have is that my sleep sucks because I wake up about every 20 seconds from the PLMD. Neupro isn't used to treat PLMD, only RLS. Neither is the horizant or several of the other meds I've been on.

I thought RLS and PMLD were only different in when they happened, but not in how they are treated. Evidently I'm wrong.

So, to make a long story short. She stopped the Neupro and started me on straight gabapentin and temazapam. Basically said that the mirapex and requip are the only meds to stop the kicking. Since I failed on those, it's basically time to knock me out.

I like the new doc. Very decisive and seems to know her stuff. Also was happy to hear that I was doing research on my condition, and encouraged me to ask questions, etc.

Maybe I'll actually sleep tonight!

Mark


:clap:

Also, you are describing me before I augmented. I would keep tally marks by the bed - 30 or more times I was aware of being awake, let alone all the times I wasn't aware. Many years of that and I was darn tired....

Not much research on PLMS, yet. That, in part, makes treatment of people like you and me so difficult.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
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Location: Berlin / Germany

Re: RLS, Fatigue, and Klonopin

Postby QyX » Thu Apr 27, 2017 6:37 pm

ViewsAskew wrote:Mark, my experience with DAs is that I am initially sleepy. Then I start awakening through the night with greater frequency. Both drowsiness and insomnia, IIRC, are listed as side effects, interestingly. For me, the awakenings are accompanied by a fast rise in body temp; I cannot fall back to sleep until I cool off. The first awakening starts around 3 hours after I go to sleep. Sometimes I can be up for as long as an hour. If I cool off, though, I can usually get back to sleep for at least another hour, but after that the awakenings occur every 45 minutes, then every 30 minutes, etc. until (if I keep trying to sleep), they happen every 3-5 minutes.


Very interesting! I have a similar experience with DA, especially the hole body temp. and need to cool off.

Also DAs made me sleepy initially but at some point the RLS symptoms came back and I woke up. Taking another pill at this point made things worse and I started worsening my whole RLS severely with burning foots and being heavily awake.

ViewsAskew
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Re: RLS, Fatigue, and Klonopin

Postby ViewsAskew » Thu Apr 27, 2017 8:07 pm

QyX wrote:
ViewsAskew wrote:Mark, my experience with DAs is that I am initially sleepy. Then I start awakening through the night with greater frequency. Both drowsiness and insomnia, IIRC, are listed as side effects, interestingly. For me, the awakenings are accompanied by a fast rise in body temp; I cannot fall back to sleep until I cool off. The first awakening starts around 3 hours after I go to sleep. Sometimes I can be up for as long as an hour. If I cool off, though, I can usually get back to sleep for at least another hour, but after that the awakenings occur every 45 minutes, then every 30 minutes, etc. until (if I keep trying to sleep), they happen every 3-5 minutes.


Very interesting! I have a similar experience with DA, especially the hole body temp. and need to cool off.

Also DAs made me sleepy initially but at some point the RLS symptoms came back and I woke up. Taking another pill at this point made things worse and I started worsening my whole RLS severely with burning foots and being heavily awake.


I haven't seen too many people say that!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

cfkid
Posts: 16
Joined: Mon Apr 17, 2017 11:17 am

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Sat Apr 29, 2017 12:26 pm

Well, I thought I'd provide an update. I've been on temazepam and gabapentin for 4 days or so. The first night I slept like a rock, I woke up 7 minutes before my alarm went off, but don't remember moving all night. I was a bit tangled in my cpap, so I had to move. Usually I wake a few times and rollover, move my cpap hose, etc. Not that night. I was very foggy at first, but after about 10-15 minutes of being up and moving, it cleared.

The nights following have all been good as well, not sleeping like the dead but I awake feeling rested and barely any fog at all. I also feel better during the day. I'm still taking the nuvigil, but I don't feel like I NEED a nap at 10 AM. I really hope this continues so I can get back to feeling normal.

All this makes me wonder. First, as I drifted off into the temazepam/gabapentin haze the first night, I felt myself kick my own calf. It hurt, I can't believe that's what I've been doing all these years. Second, when my parents were alive, my father complained a lot that 'Your mother tries to beat me up in her sleep.' We knew that mom has RLS, or at least I did. But I'm fairly certain she never had it treated. So, I wonder how much her RLS/PMLS(D) had to do with her dementia in her last year or two. I can't imagine not getting quality sleep for likely 20 or more years.

Anyway, I do appreciate the support you all have given me. I will certainly be around and post occasionally. Now that my RLS/PMLD is on the right track I can move on to the easy stuff, like finding a new job. My position is being eliminated on 5/31/2017 after nearly 21 years. Time for a new beginning and a new adventure.

Mark

Rustsmith
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Re: RLS, Fatigue, and Klonopin

Postby Rustsmith » Sat Apr 29, 2017 1:50 pm

It is wonderful to hear that the medication change has been a success. I hope that this works for you for a very long time. And good luck with the career change. I retired nine years ago and was almost immediately swamped with requests for help, so much so that I had to learn to tell people that I couldn't handle any more. So, I hope that the same is true for you and that you find something that you truly love doing (and that pays well).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: RLS, Fatigue, and Klonopin

Postby badnights » Sun Apr 30, 2017 9:27 am

Now that my RLS/PMLD is on the right track I can move on to the easy stuff, like finding a new job. My position is being eliminated on 5/31/2017 after nearly 21 years. Time for a new beginning and a new adventure.
It's wonderful that you can face this with some quality sleep under your belt and the confidence that you'll be getting it regularly. :) I hope you have fun!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Polar Bear
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Re: RLS, Fatigue, and Klonopin

Postby Polar Bear » Sun Apr 30, 2017 12:43 pm

Good luck with your new adventure and a better future.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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