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

RLS, Fatigue, and Klonopin

Postby cfkid » Mon Apr 17, 2017 12:40 pm

Hello everyone, new to the board but certainly not new to medical issues or RLS. Just a quick bit of background, I have had RLS for 10-12 years, maybe a bit longer. I've tried several medications, but have changed due to side effects, etc. About a year ago I had another sleep study, due to increased fatigue, and was diagnosed with OSA. That's being treated well with CPAP. However, they also discovered that I was still kicking a lot during sleep, about once every 7 seconds. Wonder why I was tired?

To make a long story short, over the years I've tried several meds, including mirapex, horizant, requip, requip XL, and am currently on klonopin. I was also started on nuvigil when the klonopin was started, as I was still significantly fatigued. I've been on nuvigil for less than 6 months.

However, I've never felt rested. And lately, I feel more fatigued. In fact, I'm actually able to nap thru the nuvigil. I'm trying to determine if my fatigue is being caused by the klonopin side effects, or because the klonopin isn't putting me in deep enough sleep to keep me asleep thru the movement. I'm able to get out of bed with no problem. I feel good for the first 3-4 hours of the day and then the fatigue hits. If I keep moving, I don't feel the fatigue as much, but if I rest, sit on the couch, etc. I'll be exhausted.

Also as a bit more background, I do also have Cystic Fibrosis, CF related diabetes, hypothyroidism, and low testosterone. All of those issues are directly related to the CF. I am also quite active, used to be a marathon runner, now a mountain biker, and enjoy all forms of exercise.

I do have a call into my sleep doc to try to figure out where to go next. However, I'm curious to see if anyone here has had a similar situation or has any suggestions for a path to take next?

Thanks,
Mark

legsbestill
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Re: RLS, Fatigue, and Klonopin

Postby legsbestill » Mon Apr 17, 2017 11:01 pm

Hi Mark,
Welcome to the board and respect for your considerable sporting achievements.

I don't have experience of klonopin but Have some familiarity with tiredness! I wondered are you saying that you notice you are additionally fatigued since starting klonopin? How long have you been on it? Were you tired when you were on the dopamine agonists (mirapexin and ropinerole)? How long were you on these?
It is unfortunately not unusual for rlsers to suffer from fatigue but I am assuming from your post that your tiredness level has increased?

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Tue Apr 18, 2017 12:06 am

legsbestill wrote:Hi Mark,
Welcome to the board and respect for your considerable sporting achievements.

I don't have experience of klonopin but Have some familiarity with tiredness! I wondered are you saying that you notice you are additionally fatigued since starting klonopin? How long have you been on it? Were you tired when you were on the dopamine agonists (mirapexin and ropinerole)? How long were you on these?
It is unfortunately not unusual for rlsers to suffer from fatigue but I am assuming from your post that your tiredness level has increased?


Thanks for the reply. I've only been on the klonopin for a few months, but when I first started it I was sleeping better and getting better rest. So, I believe it's that the klonopin isn't putting me into a deep enough sleep.

I did talk to my Doc today and we're going to make a med change. I'm going to stay on the klonopin (for now) and add neupro to see if that helps. If not, or I augment, we will try sinemet. My doc did say that she's ok with an opiate, if needed, but wants to make sure we try the other DA's first.

I was on mirapex for quite some time, but ended up with significant insomnia. But that was after several years. The requip and horizant were horrible for me. Lots of insomnia and augmentation.

Thanks again!
Mark

jul2873
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Re: RLS, Fatigue, and Klonopin

Postby jul2873 » Tue Apr 18, 2017 1:30 am

Hi CFKid

Wow, you have a wicked group of issues. I am not at all familiar with the kind of meds used for CF, but I do think that regular opioids suppress breathing, don't they? And I'm assuming that with CF that is the last thing you would want. I have asthma, and try to stay clear of anything that suppresses my breathing. That's why I'm sticking with kratom. It has some opioid properties (and handles the RLS symptoms well for me) but doesn't suppress breathing. Also, different strains of kratom have different properties. The red strains are good for pain relief ( and RLS relief) but can make you sleepy. The white and green strains can keep you awake, as can the maeng da. I use a red strain at night, and Maeng Da during the day, and it works well for me. Good luck to you. So sorry you got this sucky RLS on top of CF, which is surely a lousy enough disease all on its own.

leggo_my_legs
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Re: RLS, Fatigue, and Klonopin

Postby leggo_my_legs » Tue Apr 18, 2017 3:44 am

Welcome, this board is a great place! I just wanted to say hi, I also have OSA and I have PMLS. You're not alone.

badnights
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Re: RLS, Fatigue, and Klonopin

Postby badnights » Tue Apr 18, 2017 6:49 am

Hi Mark

Welcome to the board.

What you might be experiencing is the lingering effect of the clonazepam/Klonopin. It has a very long half-life, uas long as 40 hours in some people. Given that you take it every 24 hours, it is not much more than a quarter gone, and the dose from two days ago is only about half gone or a bit more, and the dose from 3 days ago is still about 1/8th in you, and so on. It will build up in your system. It's a wonder to me, but some people don't seem to notice this. Others, and I suspect you're one, seem to be very sensitive to it.

Trying Sinemet for daily WED/RLS goes against all published protocols for dealing with the disease - see for example the Foundation's Medical Bulletin for Healthcare providers, instructions in the link in my signature line. Augmentation is so common and easy on levo-carbidopa/Sinemet that its use is now restricted by experienced providers to occasional use for breakthough symptoms in patients with daily WED/RLS.

There's something about thyroid meds and dopamine agonists - or is it iron - a caution of some sort - anyone remember?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Tue Apr 18, 2017 9:36 am

jul2873 wrote:Hi CFKid

Wow, you have a wicked group of issues. I am not at all familiar with the kind of meds used for CF, but I do think that regular opioids suppress breathing, don't they? And I'm assuming that with CF that is the last thing you would want. I have asthma, and try to stay clear of anything that suppresses my breathing. That's why I'm sticking with kratom. It has some opioid properties (and handles the RLS symptoms well for me) but doesn't suppress breathing. Also, different strains of kratom have different properties. The red strains are good for pain relief ( and RLS relief) but can make you sleepy. The white and green strains can keep you awake, as can the maeng da. I use a red strain at night, and Maeng Da during the day, and it works well for me. Good luck to you. So sorry you got this sucky RLS on top of CF, which is surely a lousy enough disease all on its own.


Well, it's a fun group of issues to handle. The beauty is that since I've always had CF, I can pretty well handle anything. I've never known what "normal" is. My lung function is actually in the normal range, FEV1 of 84% last week. So, I'm not too concerned about the opioids. The good news is that my sleep doc is also a pulmonologist, so she's pretty good about thinking thru the CF side as well. I will keep the kratom in mind.

Can you point me to more information on it or should I just search the board?

Mark

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Tue Apr 18, 2017 9:36 am

leggo_my_legs wrote:Welcome, this board is a great place! I just wanted to say hi, I also have OSA and I have PMLS. You're not alone.


Thanks for the welcome and the support!

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Tue Apr 18, 2017 9:46 am

badnights wrote:Hi Mark

Welcome to the board.

What you might be experiencing is the lingering effect of the clonazepam/Klonopin. It has a very long half-life, uas long as 40 hours in some people. Given that you take it every 24 hours, it is not much more than a quarter gone, and the dose from two days ago is only about half gone or a bit more, and the dose from 3 days ago is still about 1/8th in you, and so on. It will build up in your system. It's a wonder to me, but some people don't seem to notice this. Others, and I suspect you're one, seem to be very sensitive to it.

Trying Sinemet for daily WED/RLS goes against all published protocols for dealing with the disease - see for example the Foundation's Medical Bulletin for Healthcare providers, instructions in the link in my signature line. Augmentation is so common and easy on levo-carbidopa/Sinemet that its use is now restricted by experienced providers to occasional use for breakthough symptoms in patients with daily WED/RLS.

There's something about thyroid meds and dopamine agonists - or is it iron - a caution of some sort - anyone remember?


I did think about the hang over effect from the klonopin, in fact that is the main concern I had for my doc. However, I have no problem getting out of bed in the morning. I'm not foggy and actually function very well early in the morning. My doc told me that klonopin might not be the best choice when we decided to start on it, but I hadn't really slept in months. My plumonary functions tests were declining, I was living on sugar and caffeine, and NEEDED something to get me some sleep. It did work and I am significantly better than I was then. I would just like to try to fine tune this while I can. I could certainly more than survive at the level I currently am, but I am certainly not 100%.

My doc also said that sinemet is always good "in a pinch." To get you through say a long plane flight, etc. So I may have misspoken when I stated that we'd try it next. With my medical history, she is actually very good about letting me have a say in what we do. For example, yesterday she was just going to bump the nuvigil dose, but I asked if we could actually try to address the root cause. She told me that is what she would like to do as well, but wanted to try to get me more of a "lift" first. We decided, instead, to actually go after the root cause and fix the problem. I don't like to put bandaids on things.

I will look at the bulletin and make sure that she has seen it as well. My doctor is at the University of Cincinnati, and while they aren't a Quality Care Center, I do believe that she knows the disease well. So I think I'm in good hands.

Mark

badnights
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Re: RLS, Fatigue, and Klonopin

Postby badnights » Tue Apr 18, 2017 10:05 am

From what you're saying I'd agree you're in good hands. The Sinemet clarification was needed :)
I take modafinil - I think it's marketed as Provigil - and I have never had trouble napping when I've taken it. I can't figure out the root cause, though; is it the hydromorph contin, which has an alerting effect, but maybe as it wears off leaves me fatigued? Is it the small amount of zopiclone I take to counter the alerting effect? Or is it simply that I never sleep enough? It's one of the mysteries of my current life ...

I like your approach, to look for the root cause. Sometimes you need to have the energy that extra meds would give you in order to deal with the search, probably that is what your doctor was thinking, but it's always better to search without adding meds if you can. Do let us know if you figure it out!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
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Re: RLS, Fatigue, and Klonopin

Postby badnights » Tue Apr 18, 2017 10:08 am

Iron interferes with the uptake of thyroid meds - you probably already know that. It's important for RLSers because we often have low ferritin levels, and need to take oral or IV iron to raise them. Raising ferritin can reduce the severity of symptoms, and reduce the risk of augmentation on DAs.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Tue Apr 18, 2017 10:53 am

badnights wrote:Iron interferes with the uptake of thyroid meds - you probably already know that. It's important for RLSers because we often have low ferritin levels, and need to take oral or IV iron to raise them. Raising ferritin can reduce the severity of symptoms, and reduce the risk of augmentation on DAs.


Actually, I should have mentioned that. My last ferritin level was 77 in June 2016, not bad but it could have been better. I did ask the doc's MA if I could get an order to get it tested again. My symptoms have gotten worse lately, so I'd like to rule that out. However, my wife, also a Nurse Practitioner, doubts my level is really low, as my CBC shows that i'm not anemic. Anyway, I will get it tested.

As for the synthroid, I did not know that but I'm sure my sleep and endocrine docs would. Funny thing is that the CF causes issues with absorption of synthroid. I'm already on 300 mcg a day to keep it at a therapeutic level. Hate to see it if I need iron too!

Mark

ViewsAskew
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Re: RLS, Fatigue, and Klonopin

Postby ViewsAskew » Tue Apr 18, 2017 7:04 pm

cfkid wrote:
badnights wrote:Iron interferes with the uptake of thyroid meds - you probably already know that. It's important for RLSers because we often have low ferritin levels, and need to take oral or IV iron to raise them. Raising ferritin can reduce the severity of symptoms, and reduce the risk of augmentation on DAs.


Actually, I should have mentioned that. My last ferritin level was 77 in June 2016, not bad but it could have been better. I did ask the doc's MA if I could get an order to get it tested again. My symptoms have gotten worse lately, so I'd like to rule that out. However, my wife, also a Nurse Practitioner, doubts my level is really low, as my CBC shows that i'm not anemic. Anyway, I will get it tested.

As for the synthroid, I did not know that but I'm sure my sleep and endocrine docs would. Funny thing is that the CF causes issues with absorption of synthroid. I'm already on 300 mcg a day to keep it at a therapeutic level. Hate to see it if I need iron too!

Mark


it can be hard for many medical folks to understand the issues with ferritin and RLS. We often do not have low hemoglobin (mine is usually on the high end of normal). But, I need my ferritin over 175 to reduce my RLS. When it is around 200-250, I reduce my symptoms by 50%. The level needed varies by person (some 50, some 75, some 100, and so on) and some of us get no benefit when we increase it. I have had doctors look at me as if I were crazy when I explain this - it goes against everything they learned about iron.
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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Re: RLS, Fatigue, and Klonopin

Postby QyX » Tue Apr 18, 2017 8:33 pm

I haven't read through the other answers because I am short on time and maybe somebody already posted what I am going to write.

So all Benzodiazepines will worsen your sleep quality if taken over a longer period. Some are not that much affected while others even notice how one single pill will dramatically worsen quality of sleep.

Sleep consists of 4 different phases and Benzodiazepines especially do damage to deep sleep phases (stage IV). They also inhibit REM sleep, the part were you dream but that doesn't seem to be that important. After all you really do need deep sleep phases. Otherwise you won't feel rested.

My advice: stop the Benzodiazepines slowly and explore other treatment options. Especially opioids but they can be problematic because of your OSA. So you really do need to see an expert, one who believes in opioids and knows how to deal with OSA.

I looked it up. OSA is not an absolute contraindication for opioids. Some doctors say it is but that is simply not true. With your history I don't see any other class of drugs promising. I am going to read the other answers later and then maybe post further information.

Good Luck

QyX
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Re: RLS, Fatigue, and Klonopin

Postby QyX » Tue Apr 18, 2017 8:55 pm

cfkid wrote:
legsbestill wrote: My doc did say that she's ok with an opiate, if needed, but wants to make sure we try the other DA's first.

I was on mirapex for quite some time, but ended up with significant insomnia. But that was after several years. The requip and horizant were horrible for me. Lots of insomnia and augmentation.



Luck you! Opioids will be much likely your only long term option. When you experienced augmentation and insomnia from DAs it will just happen again. Probably it is just a matter of days or some weeks.

Also DAs wont work right as long as you take Benzodiazepines. You won't now what is really going on with your brain as long as you take these drugs. For me it is still shocking how many doctors do underestimate the negative effects Benzodiazepines have on sleep.

Okay, I do have to admit that especially Clonazepam can work well for quite a time when you suffer from RLS. However after some months sleep quality will worsen and worsen and there is no way to improve the situation then stopping the Benzodiazepines. Remember my words! (I don't want to sound too dramatic. It is just something so basic when it comes to treating chronic insomnia. Benzos are great and wonderful if you use them for a couple of weeks but then ...)

Opioids: no matter which opioid you are going to try / take: all of them do have to some extent an alterting effect. When you do have no opioid tolerance I would recommend Codeine, Dihydrocodeine or Morphine. These are the three opioids with the most potent sedative effects to overcome the alerting side effect. Especially Oxycodone and Methadone can be highly alterting but there are also some people who are not affected by this. In general insomina is a common opioid side effect.

In my case it took around 3 years to overcome this side effect and I still need additional drugs in the morning and in the evening to be able to sleep. I do take Ritalin (Methylphenidat) during the day to simulate dopaminergic bursts to be tired in the evening and then additional Carbamazepin during the day and especially at the night to sedate me a little bit and stop my brain who just doesn't want to sleep.

So opioids alone haven't been a solution for me. They are super in a way but can cause new problems.


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