Trials and tribulations with opioids

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.
legsbestill
Posts: 349
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Location: Dublin Ireland

Re: Trials and tribulations with opioids

Postby legsbestill » Sun Jan 01, 2017 11:00 pm

Everyone is different but I have not found gabapentin to be particularly effective for actual leg jerks - only for combating the alerting effect of opiates. When my leg jerks play up I increase my opiate intake which for you would mean increasing the methadone. I always reduce the dose again after a couple of days and at present I am able to get by with a very low dose most days. I really feel for you. Three or four hours a night is not enough.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Wed Jan 04, 2017 12:18 am

Holland, thanks. I think I did explain in my post that I was having trouble with insomnia and then my legs also began to give me problems. When that happened, I did up the dose of pramipexole, however reluctantly. The problems with the legs lasted only two days. I think that this is something that just happens every so often: The legs are under control, and then suddenly I experience some problems with the legs, but they don't last. In any event, I don't think I can tolerate the gabapentin, al least not at 300mg, and I am not sure I can get the lower doses here. The 300mg does comes in a capsule which I can't split. I stopped the gabapentin and my feelings of drug overdose (headachy, dizziness) receded. I was left with the problems caused by the insomnia. So, much as I hated to do it, I went back to 5mg ambien (from 2.5mg) and only then did I get 3-4 hours of solid sleep. I want to get off the ambien, but right now I desperately needed a few days of feeling near-normal. I'll have to get back to tapering down on the ambien. But what will I do about the insomnia if I can't tolerate gabapentin???? Sigh....
David

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Trials and tribulations with opioids

Postby stjohnh » Wed Jan 04, 2017 1:22 am

dgarmaise wrote:. ...But what will I do about the insomnia if I can't tolerate gabapentin???? Sigh....

David, I can't take over about 100mg gabapentin in 24 hours. A 300mg capsule turns me into zombie. I empty the contents of a 300mg capsule and weigh 50mg of gabapentin into empty capsules. I take one about 2 hours before bed and another 3-4 hours later.
Blessings,
Holland

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Fri Jan 06, 2017 3:29 am

Holland, thanks for the tips. I guess I am still juggling dosages. Two nights ago, I took 50mg of gabapentin at 2:30 am. (I am still on 5mg of Ambien and not quite brave enough to stop it.) It worked, but I had a hangover the next day. Last night, I took 50mg of gabapentin at 11 pm. It also worked. I was up at 6 am, but I think I would have slept longer were I not dealing with some side issues... But I have a hangover again today, almost as severe as the one yesterday. Anybody ever go below the 50mg dose?
David

dgarmaise
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Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Sat Jan 07, 2017 6:49 pm

Hi. I was sure I had relied to Holland's last post, but I must have put it on the wrong thread. Apologies if I duplicate information. Anyhow, in short, I followed his advice and split the 300mg gabapentin capsule into six 50mg capsules. Wednesday last, I took one capsule around 11:20 pm, after having earlier taken 0.125 mg of pramipexole and 2.5mg of Ambien (Stilnox, zopidem). The gapabentin was quite effective but I had a hangover the next day. On Thursday, I took 50mg of gabapentin at 9:00 pm. Same result. On Friday night, I again took 50mg of gabapentin at 9:00 pm. It had no effect at all. From 10 pm on, I got almost no sleep. I was fasting in preparation for an ultrasound Saturday, but I don't see why that would be a factor. The timing couldn't have been worse. I spent 10 hours at the hospital Saturday for the ultrasound, followed by a catscan for problems unrelated to RLS/WED. It was a really horrible day. I don't understand why, suddenly, the gabapentin had no effect at all. Saturday night, I desperately needed a good night's sleep, and I really did not want to face another hangover Sunday. I dropped the gabapentin, and I went back to 10mg Ambien. It is 2:00 am Sunday as a write this; too early to report on how my night went.
David

dgarmaise
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Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Sat Jan 07, 2017 6:51 pm

Addendum... Now that I have posted this, I see that I have duplicated information. I see two or three posts that were not on my screen a minute ago. I don't know what I did to make that happen. Sorry.
David

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Mon Jan 09, 2017 8:59 pm

Hi, again. (I see what happened; I forgot that the messages spilled over to page 2. Blame it on the gabapentin! It disorients me.) I really don't think I can tolerate the gabapentin, even at 50mg, because of the nausea and other side effects. But what can I replace it with?
David

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Mon Jan 09, 2017 9:00 pm

Addendum (sorry...). The gabapentin is also not consistently effective for me.
David

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Mon Jan 09, 2017 9:50 pm

Apologies for the spate of postings. When the gabapentin is working for me, I get 4-5 hours of sleep and suffer through the hangover-like side effects for all of the next day. When the gabapentin is not effective, which is the case tonight, I struggle to get 1-2 hours of sleep, I deal with the side effects all night long, and I have the side effects again all the next day. I simply cannot tolerate the gabapentin. I feel like I am in a room with no exit doors. My current cocktail is 5mg methadone, 0.125mg pramipexole (thought I've had to increase the dose lately) and 50mg gabapentin. I dropped the sleeping pills a day or so ago. I've tried all of the other opiates available to me in Thailand; methadone is the only one that seemed to work. Methadone is known to cause insomnia. I was already prone to insomnia. If I drop the gabapentin, will I ever get any sleep? Kratom does not seem to get along with methadone (I am basing that on just a few attempts to take both) and, anyway, for me the kratom is useful when my legs were not under control, but I don't think it directly helped me sleep. My problem is not getting my legs under control, rather it is dealing with all the bloody side effects. I just don't see a way out.

A question: If methadone causes insomnia, would it help if I took my dose in the mornings instead of in the evenings?
David

ViewsAskew
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Re: Trials and tribulations with opioids

Postby ViewsAskew » Mon Jan 09, 2017 9:59 pm

I definitely have better luck taking my methadone earlier - the insomnia for me is worst for about 3-4 hours after i take it.
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
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Trials and tribulations with opioids

Postby QyX » Fri Jan 13, 2017 3:47 am

Can I ask why do you still take Pramipexole?

If I were you, I would forget about the Pramipexole because in the long-term DAs tend to worsen RLS extremely and with Methadone you have the most powerful drug available for RLS.

5 mg Methadone is a very low dose. You could double it and take it earlier to avoid Methadone related insomnia.

For Gabapentin: it seems obvious that you don't tolerate the drug. So I simply would stop taking it and wait until things stabilise under Methadone.

If you have trouble getting of Ambien (Zolpidem right?) you might try Diazepam. It works on the same receptors but because of the much longer half-life of Diazepam it is much easier to tamper down and stop it. You can easily just substitute Ambien with Diazepam (Valium) and then reduce the dose over 4 weeks to zero.

10 mg of Ambien equal 5 mg of Diazepam. So you can start taking 5 mg Diazepam for 2-3 days and then reduce 1 mg every week.

You might wanna read here: http://benzo.org.uk/manual/index.htm

This site gives a lot of scientific information on how to stop drugs like Ambien or any other drug who works on the Benzodiazepine-Receptor.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Sun Jan 15, 2017 9:46 pm

Thanks, QyX. I guess we all respond differently. I did drop the gabapentin. As you noted, I have been taking 5mg of methadone and 0.125mg of pramipexole. I thought by taking the minimum (and maximum) recommended dose of pramipezole, that would allow me to stay at 5mg of methadone and not have to increase the dose. For a while, with or without the gabapentin, this regimen was enough to control my legs. The issue was the side effects. When I stopped the gabapentin, I thought this would resolve the side effects. It has not quite worked out that way, though I should add that the last few weeks have been stressful ones for me, for a variety of reasons, including that I had to deal with another medical quasi-emergency. Also, my restless leg symptoms starting breaking through again. I found myself(very reluctantly) upping the dose of pramipexole to deal with that. This other medical issue is not resolved yet. I hoped the increased dose of pramipexole would be temporary. Two days ago, I decided to up the dose of methadone to 7.5mg, in the hope that this would take care of my leg symptoms and allow me to reduce my dose of pramipexole. Unfortunately, the only thing that happened was that I did not sleep a wink that night and I had symptoms that felt like I was overdosing on my meds again. Headache, light-headedness, nausea, stomach cramps. I reverted to 5mg immediately. I have started taking the methadone a bit earlier – 4-5 pm instead of 7-8 pm – and can take it earlier still. This might help with the nausea, but I don't see it helping with the side effects of an increased dose. So, if some people are on 10mg methadone, why am I stuck at 5mg? I wish I understood. I am off the sleeping pills. I went off quickly while I was still taking gabapentin. So maybe some of my current woes are caused by going off the Ambien too fast.

One of the things I noticed when I increased the methadone to 7.5 mg was a hint of shortness of breath. I can't say for sure that was what it was, or that whatever I was feeling was due to the methadone. But it worries me. I am starting to wonder if methadone is not for me. But at this stage, I don't have anything else to turn to.
David

Rustsmith
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Re: Trials and tribulations with opioids

Postby Rustsmith » Sun Jan 15, 2017 10:59 pm

David, my medication regime is similar to what you have been using. I take 5mg methadone at noon and then 900mg gabapentin and 0.25mg pramipexole 30 minutes before bedtime. My doctor suggested that I move the methadone to lunchtime because I was getting RLS breakthroughs in the late afternoon shortly before taking my pill. Her thinking was that by moving the dose to noontime, it works with my circadian rhythm to prevent RLS breakthroughs during the morning when the methadone levels are lower.

When I first started taking methadone a year ago, my doctor told me to go to 7.5mg after a few days and then up to 10mg once I felt like I had adjusted to the 7.5. After about 4 days at 7.5 I realized that I had a constant fuzzy, drugged feeling. I cut back to 5mg and then contacted my doctor who confirmed that decision. I had a different neurologist as well as my own doctor tell me that 10mg is the "normal" dose but that if 5mg is controlling my movement issues, then 5mg is the right number for me.

As for taking pramipexole, I also have PLMS and my doctor wants me to take the pramipexole to control the nighttime leg movement issues so that they don't disturb my sleep. I don't seem to be having any of the augmentation issues that I was having prior to starting the methadone and don't have any other side effects, so I am willing to continue with it. My doctor told me and I have seen elsewhere that methadone is fine for the movement issues but doesn't do anything for PLMS.

As for the gabapentin, it is a dual purpose drug for me. I am subject to getting migraines and gabapentin is far and away the best drug that I have taken for migraines. It is also the only medication that I have taken that addresses the insomnia issues resulting from my RLS. I have tried all of the classical and new development sleep aids (several benzos, Ambien, Lunesta, Sonata, etc.) and none of them were able to override my RLS. But gabapentin is like putting me onto a shutdown timer. That doesn't mean that my RLS won't wake me up an hour later on the bad nights, but at least it allows me to fall asleep on the normal nights and since I have to take it for the migraines anyway, ...
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.

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Mon Jan 16, 2017 12:45 am

Thanks, Steve. One other thing that could be affecting my situation is that I am still taking 2mg clonazepam every evening. I know that stopping clonazepam is not easy.
David

dgarmaise
Posts: 111
Joined: Thu Jan 25, 2007 8:24 am
Location: Pattaya, Thailand

Re: Trials and tribulations with opioids

Postby dgarmaise » Fri Jan 20, 2017 10:24 am

Well, I feel like I am between a rock and a hard place. My regimen of 5mg methadone and 0.125mg pramipexole (and 2mg clonazepam), all taken in the evening, is simply not doing it for me. It is usually, but not always, enough to control the legs at night. It is not enough to control them during the day if I try to lie down. And I am suffering from insomnia.

Any tinkering with the regimen seems to result in side effects. I tried increasing the methadone to 7.5mg. I felt overdose symptoms for a day and half. Reluctantly, in the last two weeks, I have upped the dose of prampipexole to 0.25mg and sometimes higher, just to get through some nights. I think this has already resulted in augmentation. I couldn't tolerate the gabapentin when I tried to add it to the regimen (at just a 50mg dose!). I was able to get off sleeping pills, which I had taken for years, when I was trying the gabapentin. But I'm not sleeping. I'm beginning to think that methadone is not for me, but I've already tried all of the other opiates available in Thailand. I've tried kratom a few times. Sometimes it helps a bit; other times, it brings back the overdose-like symptoms. I think I read that kratom and methadone may not work well together.

Something has to give. The only thing I can think of is to add one-half of a sleeping pill back into the regimen. As I recall, before I stopped the sleeping pills, they were helping me sleep, but there was some interaction between the pills (Ambien) and the methadone. I can't remember what that felt like. If I add the one-half sleeping pill to the mix, I just hope that the added sleep more than makes up for the side effects I am going to experience.

One or two people on this forum mentioned that it might be better to take the methadone earlier the day becuse the first few hours after taking methdone is when the insomnia should be at its worst. That did not work for me. In fact, I think I get my best hours of sleep just after taking the methadone.

I am willing to try a regimen that is not identical every night, but can I go on and off methadone that easily?

What we all realy need are more treatment options!
David


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