Frustrated with opiates

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.
rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Frustrated with opiates

Postby rlm » Sun Nov 27, 2016 9:01 pm

Hello,

I have now been on opiates exclusively for about six months and haven't had as much relief as I thought I would get with them.

My history is that I have augmented on Mirapex, Neupro, and ropinirole. I've tried Lyrica and Horizant alone and in combinations too many to remember and got very little symptom relief and in general, couldn't tolerate them at 75 mg so they were stopped. Then I moved to oxycodone up to 20 mg per night and kept waking up with symptoms so was put on on oxycontin. I worked up to 20 mg of oxycontin and still only got about 2 hours of continuous sleep before having to get up and move.

I stopped the oxycontin two weeks ago and started 5 mg methadone with no weaning of the oxycontin. I don't know if this is good but my doctor didn't mention any withdrawal from the oxycontin. So now after two weeks on the methadone I am waking up some nights every hour with symptoms. I can barely force myself to get up and move but it's hell if I don't. At the most I'm getting two consecutive hours almost all of which happen in the morning. I'm taking the methadone between 7-8 pm and rarely get any sleep before midnight and then it's as described above. I am becoming very frustrated and find myself moving into a desparate place.

I guess I thought that I would be getting more relief from these opiates and it's scary because I've gone through all the other recommended meds.

Is my dose too small and should a higher dose work better?

Is it realistic to get 2+ hours of sleep consecutively?

Is there a better time to take them?

Any advice will be greatly appreciated.

Rustsmith
Moderator
Posts: 2331
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Frustrated with opiates

Postby Rustsmith » Sun Nov 27, 2016 11:34 pm

rlm, have the opiates been helping address the urge to move or creepy crawly symptoms? Personally, I find that my methadone (5mg) helps with my urge to move issues but it does little or nothing for my sleep problems. My doctor has me taking 900mg gabapentin 30 minutes before bedtime and that helps me fall asleep. I am usually able to stay asleep for about 4 hrs, which is when the gabapentin starts to wear off. I often use an edible form of medical marijuana that help extend that out to about 6 hrs. My doctor isn't happy about just 6 hrs, so she had me go through a sleep study last week. I didn't use the marijuana, so I only slept for about 4 hrs. I hope to find the results of the tests this week. I was afraid that I would get 8 hrs of sleep that night, so for once I was actually happy to wake up at 2AM. I probably won't know where this will go until I see my doctor in 2 wks.

Another issue that you might be experiencing with the opiates is a condition that we usually refer to as alerting. The opiate addresses the urge to move problems, but seems to turn your mind on so that it becomes very difficult to fall asleep. I was told to take my dose of methadone at lunchtime to help reduce this. Of course, the addition of the gabapentin might be masking any residual alerting effect that I might be experiencing.

Finally, no it is not unrealistic to expect more than 2 hrs of undisturbed sleep. Failure to get a good, full night of sleep each night works to reduce our life expectancy. Even the experts are not always sure what needs to be done, but you should be pressing your doctor to keep trying more and more things until you find something that works for you. Whether this is a combination of two or more drugs (opiate plus things to fall asleep and then stay asleep) or whether it has to do when you take each of them, that is something that will be specific to you and will probably require quite a bit of experimentation.
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.

jul2873
Posts: 340
Joined: Thu Nov 15, 2012 7:32 pm

Re: Frustrated with opiates

Postby jul2873 » Mon Nov 28, 2016 3:58 pm

Hi Rim,

I have not taken opioids for my RLS but have been taking kratom for almost four years, that functions much like a mild opioid, in that it affects the mu receptors.

With kratom I can usually sleep in 2-4 hour blocks of time. I'm guessing that if I folded in a dopamine drug, or Ambien, I could perhaps sleep for longer intervals, but I am very hesitant to start the road to Rx drugs. So I've decided to make do with the kratom. Here is how I manage it.

I have a couple of iPods loaded with my favorite audio books. When my legs wake me up, I get up right away, and walk downstairs to the kitchen to get a dose (usually 1-2 grams dissolved in orange juice) of kratom out of the refrigerator. I drink it slowly walking around. If my legs feel okay when I've finished it, I go back to bed. If not, I stay up a little longer until my legs calm down.

And I always listen to an audio book as I'm trying to go back to sleep. I listen to a book I know well (so I can just enjoy it and not worry about what happens next.) In a average night, I'm up three or four times. Sometimes I wake up more often, after an hour of sleep. If this happens more than two or three times, I start making myself stay up, and not having any more kratom, until at least two hours have passed since my last dose. After one or two nights of this, I find I sleep at least two hours at a time again. I usually average at least six or seven hours total of sleep, often more, especially if I can sleep in.

I've made peace with this, and stopped worrying about trying to sleep right through. For one thing, I'm 72, and probably wouldn't sleep straight through anyway, without RLS. And I'm retired, so I can always nap if I need to. I think the big thing is to find a program that works for you, and to try to stop worrying.

Peace. Hope you figure things out.

Mary

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Mon Nov 28, 2016 4:27 pm

Steve,

Thanks for your response. The opiates do work to quiet my legs, however, when I wake up it seems to happen because my legs are going. I guess I was hoping that the quieting from the opiates would last longer than an hour at a time. This is the part that is the most disappointing.

My doctor has never mentioned alerting but I have wondered why I feel so awake late at night when I've been extremely tired all day. I think this might explain it if I understand what you're saying.

As I mention, gabapentin, Lyrica, and Horizant were drugs I couldn't tolerate even at lower dosages and I also was given zolpidem. I only got about 3 hours of sleep with that and it just seemed it wasn't worth it. Medicare doesn't cover it because of seniors and falls . . .

Does your 5mg of methadone taken at lunchtime cover your symptoms through the night? Perhaps I should be taking it earlier; I'm not convinced my doctor knows enough about it after reading your post.

Mary,

Thanks for your reply. I haven't tried kratrom but it sounds interesting. I appreciate hearing how you use it. I agree that stopping the worrying is a big thing. It's been three years of trying to find some consistency and something that works for me and I'm still not there but I continue to work on it.

Best, Rebecca

Rustsmith
Moderator
Posts: 2331
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Frustrated with opiates

Postby Rustsmith » Mon Nov 28, 2016 4:51 pm

Rebecca, my doctor moved my methadone dose to lunchtime from bedtime because I was having breakthrough movement issues in the late afternoon and evening. Taking it earlier in the day helps with the later afternoon RLS issues and might help with alerting issues at night. One of the differences between methadone and the other opiates is the long half life of methadone. It tends to stick around for one to 4 days where the others only last for a few hours. So once you have been on methadone for a while, its benefits tend to level out other than during the first couple of hours after you take it when the levels are a bit higher (due to the latest dose) than the rest of the time.

In looking back at my previous post, I noticed that I failed to mention my pramipexole. My RLS also includes PLMS issues (85% of us also have the symptoms of PLMS). My doctor currently has me taking pramipexole to try to quell the PLMS. Whether that is working or not is something that we hope to see in sleep study that I did last week.

As for the zolpidem, the sleep hypnotics often do no work for those of us with RLS. The RLS simply overwhelms the sleep drug's role of putting you to sleep. So often we still end up walking around at night, but this time the walk can become a stagger because the drug inhibits motor control. I liken it to a drunk who has been drinking coffee and is now a wide awake drunk.

If you are a member of the Foundation, there are a number of webinars in the member section that could be very helpful to you. The one on opiates provides an excellent education into opiates (maybe even for your doctor). There are also a couple that deal with sleep issues.

Finally, recent research at Johns Hopkins is indicating that there are two separate neurological issues with RLS. The well known one is the issue with dopamine levels and how this controls the need to move. The "new" one has to do with glutamate levels in the same portion of the brain where the dopamine problems occur. Glutamate levels control our wake sleep cycle and we appear to have problems in this area. Since this is an ongoing area of research, they don't have any targeted treatments for this yet, but may end up finding that this is how gabapentin, Horizant and Lyrica function for us.
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.

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Mon Nov 28, 2016 7:53 pm

Steve,

Thanks for the additional information.

I agree with your description about being on sleep hypnotics; I found myself getting acquainted with several walls in my house on my walks. I don't miss zolpidem and have resisted my doctor's suggestions about other sleep meds. I have been experimenting with marijuana (not medical) for the insomnia piece and it seems to work fairly well. The only problem is that when my legs wake me up I can be extra groggy. I would rather do this than the sleep hypnotics.

Rebecca

Rustsmith
Moderator
Posts: 2331
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Frustrated with opiates

Postby Rustsmith » Tue Nov 29, 2016 12:24 am

Rebecca, one of the things that I have learned after a year of experimenting with various forms of marijuana is that the smoked form works almost instantly, but also ends after a couple of hours. Tinctures take 5-10 minutes, but then stick around for a longer time. Edibles (candies, cookies, ...) take about 2 hrs to kick in and then last for up to 8 hrs. That sort of performance not only allows you to select the desired benefits by adjusting THC/CBD ratios, but also allows you to tailor the timing. Since I need the time delay for sleep, I almost always use edible THC.
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.

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Tue Nov 29, 2016 12:59 am

Steve,

Unfortunately, I don't have access to the "legal" forms of marijuana that you describe.

Rustsmith
Moderator
Posts: 2331
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Frustrated with opiates

Postby Rustsmith » Tue Nov 29, 2016 3:16 am

I fully understand. We went through an interstate move last year so that both my wife and I could have access. It helps my sleep, but it has been of even greater help for her MS.
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.

stjohnh
Posts: 276
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Frustrated with opiates

Postby stjohnh » Tue Nov 29, 2016 4:03 am

The sleep problem with rls may be amenable to antiseizure medications. So far, on this board, medicines that help sleep are gabapentin (and their cousins Horizant and Lyrica), carbamazepine (much discussed by QyX, a german medical student with very severe rls) and marijuana. What do these have in common? All treat seizures. They work by stabilizing neuron discharges, and that could be the underlying pathophysiolgy of rls insomnia.

My medicine regimen is mirapex, 50mg gabapentin, 10mg THC (as ground up marijuana Brownie), and 720mg kratom, all at 7:30 pm. Jumpy legs stop about 8:30 and I get very sleepy about 9 pm and go to bed at 9-9:30. I usually fall asleep in less than 15 minutes. I wake up to pee in 1-3 hrs, and at that time take 5mg THC, 50mg gabapentin, and 360 mg kratom. This gives me 6-7 hrs sleep fairly reliably with little or no hangover.

I can't take gabapentin at "usual" doses (one 300mg dose turns me into zombie the next day) but the two 50mg doses I take definitely improve my sleep in that I feel less sleep deprived the next day.

The kratom helps my sleep a little, but the main benefit is that I have been able to control my leg jumping with only a small amount of mirapex (0.125mg). The two work very well together.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 14539
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Frustrated with opiates

Postby ViewsAskew » Tue Nov 29, 2016 7:28 am

Rebecca - I am tired, so forgive me if I didn't see this. Do you or your docs want you to stay at 5 mg methadone for a reason? Could it simply be that it's not enough? I needed 10-15 mg when I first started taking methadone. I never would have slept with 5 mg. At least not for more than a few minutes at at time - probably 15 -20 at most.

You were on 20 mg of oxy. That doesn't translate to 5 mg methadone. Did it every cover all the symptoms? How long did it take you to increase it - do you think it was tolerance? Sorry for all the questions - am so tired and don't want to forget so am firing them at you!

And, how long did it take you to augment on pramipexole? I ask only because I had tolerance with opioids and only by going back to DAs and alternating - a few days on DAs, a few days on opioids - was I able to stop the regular increase of the opioids. For almost 7 years I needed no increases of the opioids. I originally augmented in about ten days. With the infusions, I've gone as long as a month as a test - no augmentation.

My next step - I've had another infusion - is to stop the opioids completely for 2-4 months and hope that I do not augment on DAs during. I don't think I will, but we'll see. That break, I hope, will allow my body reset so that I can use fewer opioids and then continue to alternate the two so that I avoid augmentation and tolerance, all while using much less of them.
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.

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Wed Nov 30, 2016 3:51 am

Holland,

It's very interesting hearing what your regime is. I could only tolerate 50 mg of Lyrica and only got some help sleeping from it. My doctor seemed to think it wasn't worth it.

Ann,

My doctor's philosophy is to start me at the lowest dose of any new medication for two weeks minimum before he will consider upping the dose. It's been hard for me because I can tell it's not working. I'm up every hour (or less) on 5 mg of methadone and I believe it's not enough.

I started out the same way with oxycodone going from 5 mg to 20 mg over a period of months. I was only getting 1-2 hours of sleep at a time by the time I was on the 20 mg oxycodone so he switched me to 20 mg oxycontin thinking that the extended release would work better. Basically, the same scenario happened--up every 1-2 hours. My doctor also will not prescribe over the recommended dosages in the blue book. You ask if it was tolerance and I guess I don't know. How do you know if you're becoming tolerant?

I was on Mirapex for about 12 years. I now realize that I had augmented quite some time before I stopped taking it. My doctor at the time didn't understand augmentation and kept giving me more at every annual visit for my worsening symptoms. I think it took me about six months to augment on Neupro and about the same for ropinirole.

I have mentioned the idea of switching opiates and DAs to my doc but he doesn't seem interested in trying it for some reason. I'm really struggling and I believe he is becoming very frustrated and feels like there are very few options left.

Thanks, Rebecca

stjohnh
Posts: 276
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Frustrated with opiates

Postby stjohnh » Thu Dec 01, 2016 12:31 am

Rebecca, Ann's suggestions are great. Before I hit on my current regimen I had been planning to alternate somewhat like Ann suggests, but using kratom rather than a prescription opiate. I didn't because I found that my sleeping wasn't as good using kratom alone, and I have been able to use the current regimen for 5-6 months now without augmenting. If I augment again I may try the alternating DA and kratom. I suspect the kratom without mirapex may work better if I add the THC and gabapentin to it.
Blessings,
Holland

legsbestill
Posts: 297
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Frustrated with opiates

Postby legsbestill » Thu Dec 01, 2016 9:29 pm

Hi Rebecca,

Just in relation to coming off OxyContin, this might also be a factor. I took this for my rls in the summer. Incidentally, I found that it required 30mg to completely still my legs (torso, arms etc) and it may be that your use of 20mg was just not enough. I decided to come off OxyContin for a variety of reasons. I only took it for about 6 weeks at a dose of 30mg but found I had significant withdrawal symptoms which lasted for at least 5 weeks after stopping, the most noticeable of which was a huge restlessness, particularly in bed at night VERY similar to rls - I had rls as well but the OxyContin withdrawal symptom was additional. Depending on how long you were on OxyContin, this may also be a factor which is inhibiting the apparent effectiveness of the methadone - though it does sound to me like your dose might be a little low also.

Like you, I spent many years on pramipexole and was very augmented by the end. After I came off it, earlier this year, I spent months in despair, experimenting and not finding an effective regime. For what it's worth, this is what I finally came up with - it's working for now (!): I take 2mg neupro - I haven't augmented on this yet but suppose it's only a matter of time. 2mg neupro is not enough for my symptoms so I also take 10mg OxyContin. This combination is fantastic for my rls symptoms - just covering them so that I am occassionally aware of them - not 100% coverage which I am afraid of as many people seem to find that this is the quickest way to dependence/augmentation. OxyContin, even at 10mg, causes the 'alerting' that Steve referred to above (thank goodness for this website as it would have taken me ages to work it out on my own - given wisdom about opiates being that they induce dopey-ness (?sp) - my pharmacist was amazed when I mentioned 'alerting' to her but after considering for a few minutes she thought that it could make sense) so I now take 50mg of pregabalin (Lyrica) even though I had a disastrous time on a higher dose (150mg) of that drug earlier in the Summer. The 50mg of pregabalin is enough to induce and maintain sleep over the alerting.

My hope is that if I notice any sign of augmentation on neupro, I can reduce my dose of it and increase the OxyContin for a while - sort of tweaking so that I can prolong the life of the D/A.

For the rest, definitely check your iron if you haven't already. This can make a big difference. I absolutely agree about traditional sleep meds - useless - they just make being awake with rls even more unpleasant than it needs to be; conversely, in common with Mary, I love, love, love my audio books, they make being awake so much less unpleasant - I do exactly same as Mary - listen to one I am already familiar with - only problem is pavlovian response - if I put one on in the car, I start to feel sleepy!

I really hope you find a solution. It is so devastating when the drugs don't work and you really sound like you are going through the mill at the moment. It might be worth considering experimenting with combinations of drugs - if you can convince your health carer(s) - as well as considering different types of drugs. It is definitely worth checking out the webinar by Dr. Early concerning the various types of opiates.

ViewsAskew
Moderator
Posts: 14539
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Frustrated with opiates

Postby ViewsAskew » Thu Dec 01, 2016 10:23 pm

Rebecca - I feel for you. To have to go this slowly is torture.

Any possibility of another doctor???
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.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest