RLS, Fatigue, and Klonopin

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cfkid
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Re: RLS, Fatigue, and Klonopin

Postby cfkid » Wed Apr 19, 2017 10:49 am

QyX wrote:
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.


We do plan to get me off the klonopin. Luckily I'm only on .5mg at night, so it should be fairly easy to get off of them. I know it will be a long taper, but I can certainly do that.

I did start Neupro yesterday. So far I've only got a headache. I did actually dream last night, which I think is a good sign. Usually I don't, which I know can be a sign of poor sleep. Weird dream. I bought a BWM, went to pick it up and not only was most of the dash disassembled but it also had a 1960's era couch for seats. Strange. I'll report back as I progress.

Mark

yawny
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Re: RLS, Fatigue, and Klonopin

Postby yawny » Thu Apr 20, 2017 12:43 am

Welcome to the board, Mark! I have a book, The Fibro Manual (Liptan), that says Gabapentin, GABA, and magnesium supplements, among several other things, increase Deep Sleep. I'm on Gabapentin and magnesium and hope they're helping with this. I also dream a lot. And I have to say I'm envious of your dream. In mine, the BMW would likely have a mouth of shark-like like teeth and be chasing me through dirty alleys as I screamed. The dirty alleys would bother me A LOT, and I'd want to stop to clean them, but couldn't...what a nightmare! My husband has dreams that are always funny, or strange in a comical way. What up, Mr Sandman? Anyway, hope the Neupro works well for you.

Rustsmith
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Re: RLS, Fatigue, and Klonopin

Postby Rustsmith » Thu Apr 20, 2017 2:56 am

Mark, I'm curious whether your CF docs think that there could possibly be a relationship between your CF and your RLS. My interest isn't just academic. I am also a former marathoner (I keep saying I have run my last but then relent and do one more). After a number of cases of hyponatremia combined with dehydration (which confounded the docs), I started doing some research on my own. To make a long story short, I eventually met with an adult CF specialist. I don't have any of the major CF genes, but she admitted that I made a good case for having atypical CF with two of the minor genes that would cost $2K to check. When I asked whether a diagnosis of atypical CF would change the treatment for my sinus issues, my mild asthma and the salt issues while running, she said that it would not. I don't have any signs of being diabetic, but she suggested watching for it with my annual physicals and to assume CF related diabetes if it appears.

So, although I don't see that there would be a connection between CF and RLS, I figured it wouldn't hurt to ask what they have told you.
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.

ViewsAskew
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Re: RLS, Fatigue, and Klonopin

Postby ViewsAskew » Thu Apr 20, 2017 5:34 am

mark wrote:We do plan to get me off the klonopin. Luckily I'm only on .5mg at night, so it should be fairly easy to get off of them. I know it will be a long taper, but I can certainly do that.

I did start Neupro yesterday. So far I've only got a headache. I did actually dream last night, which I think is a good sign. Usually I don't, which I know can be a sign of poor sleep. Weird dream. I bought a BWM, went to pick it up and not only was most of the dash disassembled but it also had a 1960's era couch for seats. Strange. I'll report back as I progress.


Soooooo, I was taking 1 mg clonazepam for a few months - unsure exactly, but likely between 4-5 months. It took me 7-8 months to stop it - I couldn't cut more then shavings every few days or I was shaking, in pain, vomiting, etc. I lost 25-30 pounds and was still felt pretty awful even with the very slow taper. I read a lot about it and found the Ashton method - look that up in case you have difficulty. According to the Ashton folks, about fifty percent of us have no problems stopping it. The rest of us have varying degrees of difficulty. Ashton - the doctor - suggests switching to a much shorter acting benzo, but my doc wouldn't try it. Another option would be to have a compounding pharmacy create a suspension liquid so you could cut back specific amounts. I didn't have that, either. So, I would use a razor and shave off a teensy bit from the prior dose. If I got sick, I'd know I cut too much. Not very scientific! But, I got through it.

Hoping you are in the fifty percent with no difficulties!
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
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Joined: Mon Apr 17, 2017 11:17 am

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Thu Apr 20, 2017 3:39 pm

Rustsmith wrote:Mark, I'm curious whether your CF docs think that there could possibly be a relationship between your CF and your RLS. My interest isn't just academic. I am also a former marathoner (I keep saying I have run my last but then relent and do one more). After a number of cases of hyponatremia combined with dehydration (which confounded the docs), I started doing some research on my own. To make a long story short, I eventually met with an adult CF specialist. I don't have any of the major CF genes, but she admitted that I made a good case for having atypical CF with two of the minor genes that would cost $2K to check. When I asked whether a diagnosis of atypical CF would change the treatment for my sinus issues, my mild asthma and the salt issues while running, she said that it would not. I don't have any signs of being diabetic, but she suggested watching for it with my annual physicals and to assume CF related diabetes if it appears.

So, although I don't see that there would be a connection between CF and RLS, I figured it wouldn't hurt to ask what they have told you.


There's no link of which I'm aware. I know that my mother had RLS/PLMD, although I don't know that she ever had it treated. Long story. Also think some of my family (I'm the baby of 13 kids) have it. But they're too determined to actually have anyone look into it.

Have you ever had a sweat chloride test? That's the standard for diagnosis of CF. While they will do a genetic test to confirm, the sweat chloride is it and it's easy and cheap. Basically, the measure the amount of salt in your sweat. Anything over a score of 100 and you almost certainly have CF. Might be worth consideration. If you do happen to have CF, they will treat you differently. At least I would think they would.

Mark

cfkid
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Re: RLS, Fatigue, and Klonopin

Postby cfkid » Thu Apr 20, 2017 3:41 pm

ViewsAskew wrote:
mark wrote:We do plan to get me off the klonopin. Luckily I'm only on .5mg at night, so it should be fairly easy to get off of them. I know it will be a long taper, but I can certainly do that.

I did start Neupro yesterday. So far I've only got a headache. I did actually dream last night, which I think is a good sign. Usually I don't, which I know can be a sign of poor sleep. Weird dream. I bought a BWM, went to pick it up and not only was most of the dash disassembled but it also had a 1960's era couch for seats. Strange. I'll report back as I progress.


Soooooo, I was taking 1 mg clonazepam for a few months - unsure exactly, but likely between 4-5 months. It took me 7-8 months to stop it - I couldn't cut more then shavings every few days or I was shaking, in pain, vomiting, etc. I lost 25-30 pounds and was still felt pretty awful even with the very slow taper. I read a lot about it and found the Ashton method - look that up in case you have difficulty. According to the Ashton folks, about fifty percent of us have no problems stopping it. The rest of us have varying degrees of difficulty. Ashton - the doctor - suggests switching to a much shorter acting benzo, but my doc wouldn't try it. Another option would be to have a compounding pharmacy create a suspension liquid so you could cut back specific amounts. I didn't have that, either. So, I would use a razor and shave off a teensy bit from the prior dose. If I got sick, I'd know I cut too much. Not very scientific! But, I got through it.

Hoping you are in the fifty percent with no difficulties!


Actually, my wife was on clonazepam for quite some time. And I'm aware that it takes a long slow taper to get off of it. She has every side effect for every drug she takes. I, on the other hand, don't. So, I'm hoping that I can get away with it. But I am prepared for the pain, if needed. My doc also knows how to taper it. We both see the same sleep doc, so, again, I think I'm in good hands.

Mark

Rustsmith
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Re: RLS, Fatigue, and Klonopin

Postby Rustsmith » Thu Apr 20, 2017 4:10 pm

Have you ever had a sweat chloride test?


Mark, thanks for the response. I too have a anecdotal family history of RLS or PLMD.

As for CF, the specialists decided not to do the sweat test. Another long story, but in a study of hyponatremia in marathoners about a decade ago, I was one of only two participants in over 2000 in races around the world who was both dehydrated and hyponatremic. I was also much faster than the typically hyponatremic marathon finisher. That is where I first learned of the possibility of CF. The lead researcher on the project saw me later at a track meet and suggested the possibility of adult CF and also suggested that I was one of the few that she spoke with who should be taking salt tablets and loading my food with salt.

So, the CF doc concluded that the test would probably come back positive. The doc said that since my respiratory issues were already being treated and relatively controlled, all she would do in addition if I was in her adult CF system was perform an annual check of my A1C. So, we agreed that I could have that done by my GP and avoid getting labeled as having CF (for insurance reasons) unless or until the A1C indicated early diabetes. So, I know what to watch for going forward and what to tell my current or future GPs if things start to go downhill.
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.

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Fri Apr 21, 2017 11:21 am

Rustsmith wrote:
Have you ever had a sweat chloride test?


Mark, thanks for the response. I too have a anecdotal family history of RLS or PLMD.

As for CF, the specialists decided not to do the sweat test. Another long story, but in a study of hyponatremia in marathoners about a decade ago, I was one of only two participants in over 2000 in races around the world who was both dehydrated and hyponatremic. I was also much faster than the typically hyponatremic marathon finisher. That is where I first learned of the possibility of CF. The lead researcher on the project saw me later at a track meet and suggested the possibility of adult CF and also suggested that I was one of the few that she spoke with who should be taking salt tablets and loading my food with salt.

So, the CF doc concluded that the test would probably come back positive. The doc said that since my respiratory issues were already being treated and relatively controlled, all she would do in addition if I was in her adult CF system was perform an annual check of my A1C. So, we agreed that I could have that done by my GP and avoid getting labeled as having CF (for insurance reasons) unless or until the A1C indicated early diabetes. So, I know what to watch for going forward and what to tell my current or future GPs if things start to go downhill.


If it were me, I'd get tested. The meds, especially Kalydeco, can significantly improve lung function and decrease pulmonary exacerbations. But I'll let you discuss that with your doctors, as I'm not a medical expert.

cfkid
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Re: RLS, Fatigue, and Klonopin

Postby cfkid » Fri Apr 21, 2017 11:25 am

So, I've been on Neupro for 3 full days now, starting the 4th today. I've had a constant headache and more fatigue on the patch. The fatigue is much different than what I had on the klonopin alone. I can see where those side effects could dissipate over a few weeks. But I'm also irritable/angry all the time now. I'm almost 100% sure that's the dopamine. If I understand correctly, that symptom does NOT go away.

Email my doc this morning to give her the update. Also mentioned the Mayo Clinic RLS Algorithm and failing two DA's. We'll see what she says.

QyX
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Re: RLS, Fatigue, and Klonopin

Postby QyX » Fri Apr 21, 2017 1:59 pm

cfkid wrote:So, I've been on Neupro for 3 full days now, starting the 4th today. I've had a constant headache and more fatigue on the patch. The fatigue is much different than what I had on the klonopin alone. I can see where those side effects could dissipate over a few weeks. But I'm also irritable/angry all the time now. I'm almost 100% sure that's the dopamine. If I understand correctly, that symptom does NOT go away.

Email my doc this morning to give her the update. Also mentioned the Mayo Clinic RLS Algorithm and failing two DA's. We'll see what she says.


When I took Pramipexol for the first time I developed hyperakusius, became extremely sensitive even for low noises like a normal quite conversation. I just couldn't stand any noise so I was aggressively shouting at my mother and friends who visited to stop talking. This was a real horror experience for my mother and the visiting friends.

Dopamine agonists can be real ***** and it is quite obvious for me that they are not helpful in your case and even worsen your situation.

Time to get off this drugs and Klonopin and look for better treatment.

I wonder why your doctor thinks Neurpro will work while other DAs haven't.

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

Re: RLS, Fatigue, and Klonopin

Postby cfkid » Sat Apr 22, 2017 12:01 pm

QyX wrote:
cfkid wrote:So, I've been on Neupro for 3 full days now, starting the 4th today. I've had a constant headache and more fatigue on the patch. The fatigue is much different than what I had on the klonopin alone. I can see where those side effects could dissipate over a few weeks. But I'm also irritable/angry all the time now. I'm almost 100% sure that's the dopamine. If I understand correctly, that symptom does NOT go away.

Email my doc this morning to give her the update. Also mentioned the Mayo Clinic RLS Algorithm and failing two DA's. We'll see what she says.


When I took Pramipexol for the first time I developed hyperakusius, became extremely sensitive even for low noises like a normal quite conversation. I just couldn't stand any noise so I was aggressively shouting at my mother and friends who visited to stop talking. This was a real horror experience for my mother and the visiting friends.

Dopamine agonists can be real ***** and it is quite obvious for me that they are not helpful in your case and even worsen your situation.

Time to get off this drugs and Klonopin and look for better treatment.

I wonder why your doctor thinks Neurpro will work while other DAs haven't.


Agreed, just need to get her on-board. But I think the failure this quickly should do that.

cfkid
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Re: RLS, Fatigue, and Klonopin

Postby cfkid » Wed Apr 26, 2017 10:30 am

cfkid wrote:
QyX wrote:
cfkid wrote:So, I've been on Neupro for 3 full days now, starting the 4th today. I've had a constant headache and more fatigue on the patch. The fatigue is much different than what I had on the klonopin alone. I can see where those side effects could dissipate over a few weeks. But I'm also irritable/angry all the time now. I'm almost 100% sure that's the dopamine. If I understand correctly, that symptom does NOT go away.

Email my doc this morning to give her the update. Also mentioned the Mayo Clinic RLS Algorithm and failing two DA's. We'll see what she says.


When I took Pramipexol for the first time I developed hyperakusius, became extremely sensitive even for low noises like a normal quite conversation. I just couldn't stand any noise so I was aggressively shouting at my mother and friends who visited to stop talking. This was a real horror experience for my mother and the visiting friends.

Dopamine agonists can be real ***** and it is quite obvious for me that they are not helpful in your case and even worsen your situation.

Time to get off this drugs and Klonopin and look for better treatment.

I wonder why your doctor thinks Neurpro will work while other DAs haven't.


Agreed, just need to get her on-board. But I think the failure this quickly should do that.


Well, I emailed my doc about my side effects. Including the latest, which I've had on the other DA's....insomnia. Basically, I wake between 2 - 4 AM and I'm wide awake. There is no going back to sleep. This time, it seems 4 AM is the time, which is better. I think the klonopin is keeping me asleep until around that point.

The email I got back was basically, I think you need a second opinion, because I'm leaving this hospital. Luckily, my CF doc was able to get me in with the head of the Sleep Med department today at 10 AM. I'm taking the med list with me so we can discuss what I've already been, failed, etc.

I guess we'll see what happens next. But I can't stand this neupro at this point. Especially the insomnia piece.

Mark

ViewsAskew
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Re: RLS, Fatigue, and Klonopin

Postby ViewsAskew » Wed Apr 26, 2017 9:23 pm

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.

I was just wondering today if clonazepam had kept me asleep all those years ago when I used it. No idea, but it is likely it at least helped. Kratom does help me a bit now.

Yikes - doc leaving, huh? That sounds like it could be a good thing in the long run.
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 » Wed Apr 26, 2017 9:59 pm

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

Rustsmith
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Re: RLS, Fatigue, and Klonopin

Postby Rustsmith » Wed Apr 26, 2017 11:04 pm

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).
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.


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