Opiods

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.
Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Post by Joanie60 »

I am so sorry PJ, that you are stuck in the anxiety and depression that seem (in my case) to make RLS worse. Although I do not have addiction issues, many of my close friends do. First, I borrow the saying "One Day at a Time" from them. I am 54 and can't EVEN let myself think ahead to six months from now, much less 10, 20, or 30 years from now, as concerns RLS. I would probably want to shoot myself ;-) So I try to look at my feet, and keep myself there (ie: right in the moment).

Secondly, many of them have detoxed off heroin and opiates. From the way they describe it, most of us would be in the hospital within an hour of true detoxing. It is UGLY. Really, really ugly. The studies I have seen on long term opiate usage shows that when taken as prescribed, the risk of addiction is very slight. If I were an opiate addict, I would chew down the whole 30 day supply the first day. (Then be in RLS hell for the next 29 days). I don't. I take them as prescribed but have needed to up the dose from 10mg/daily to 15-20mg/daily. I believe this is because my symptoms, which used to only strike at night, are now round the clock. Is that from the opiates or from progression of the disease? I don't know. I wish I did.

Perhaps someone else has more scientific information than "Joanie read/heard blah blah blah" on the addiction and withdrawal issue?

As far as travel goes, my first grandson was just born in Germany. Our daughter has lived overseas most of her young adult life, since graduating from college. I cannot and will not allow RLS to rule this area of my life (it claims enough as it is). I stockpile a couple extra pills for the flight, get aisle seat, drink tons of water so I make zillions of trips to the bathroom, scope out a really absorbing book, and stretch in the area by the aircraft doors as needed. I can do anything for 7 hours (longest leg of the trip). Do I dread it? Of course. Do I prepare for it? Yuppers!

That is the best advice I can give....live for today and prepare for tomorrow. Easier said than done!! But I have gotten so much support and encouragement from the peeps here...glad you are too!!

Hugs Joanie

badnights
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Location: Northwest Territories, Canada

Re: Opiods

Post by badnights »

PJ wrote: I ask this because I take the long term pain med at 9p.m. and within 30 minutes or so of taking it I start experiencing cold flashes/chills. This goes on even after I go to bed at night after taking the pain med. However I am also taking other med's for depression but they are in the morning. Anyhow just wondered if anyone else has ever experienced the cold flashes/chills on pain med's? Again, this mimics withdrawal symptoms from pain med's.
I Don't get the chills within a half hour like you do, but I get withdrawals. When I'm on 12 mg hydromorph contin (extended-release version of hydromorphone), as I am now, I can take all of it in the evening and I'm fine. When I was on 15, though, I started to have problems in the afternoons. It took me almost a year to realize that I was having a mini-withdrawal every day. I would get increased WED and a sick feeling, nausea, a bit of cold-sweat feeling without actually sweating, and just generally be utterly useless from about 3 pm until about 8 pm - 2 hrs after my first evening dose of hydromorph.

Once I realized I was withdrawing, I started taking one 3mg pill in the morning to prevent that, and it worked. I eventually had to move up to 18 mg total, and 3 mg of that was simply to prevent withdrawal. I have since lowered my meds back to 12 mg, through diet changes. I don't get the withdrawal thing on 12.

I wonder if your chills are 1/2 hour after taking meds, or many hours after taking previous dose of meds? i.e. withdrawal from previous dose before current dose has a chance to kick in?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opiods

Post by pjmccoy1 »

badnights wrote:Once I realized I was withdrawing, I started taking one 3mg pill in the morning to prevent that, and it worked. I eventually had to move up to 18 mg total, and 3 mg of that was simply to prevent withdrawal. I have since lowered my meds back to 12 mg, through diet changes. I don't get the withdrawal thing on 12.


What kind of diet changes did you make that allowed you to lower meds?
PJ, Heaven Bound

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opiods

Post by pjmccoy1 »

Orrel wrote:I'm trying to get off mirapex using the Neupro patch which, being a DA, causes insomnia. I take 100 mgs of trazadone at bed time and another 100 mgs when I wake up in the middle of the night. I don't think that trazadone is very effective for inducing sleep for me, certainly not if I am awakened by rls, However, I seem to tolerate it okay (no constipation or weight gain.) I am not taking opioids


I didn't take the Seroquel 12.5mg last night and decided to try Trazodone 75mg when I was still awake at 1:30a.m. (not from RLS since pain med and .5mg clonazepam had that under control although I'm not sure clonazepam is doing anything anymore for sleep). I really never went to sleep just dozed and had a horrific headache and sinus congestion. I felt exhausted this a.m. due to no sleep. However RLS didn't seem as bad during the day or flair up as early as it had been when previously on Seroquel. I hate that because Seroquel does give me better sleep whether it's from insomnia or the pain med alerting effect. I wonder if everyone has alerting from pain meds? And if I switch my dose earlier will it cover evening RLS? Just not sure how much earlier in evening or day to try it. It's going to be hard to divide up my current pain med dose as it is rather low for now. But I'm willing to try. Dr. B said most patients have a sleepy effect from pain meds, however, he has a few that do have insomnia. He didn't give me any suggestions how to treat pain med induced insomnia. I sure wish I could retrial Horizant again because it definitely gave me a great night's sleep (even at 300mg dose which is lower than recommended RLS treatment) but RLS doc or Psych probably will never allow that again due to depression.
PJ, Heaven Bound

badnights
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Location: Northwest Territories, Canada

Re: Opiods

Post by badnights »

I wonder if everyone has alerting from pain meds?
I wonder if it's more common for WEDers than regular folk, to have this alerting from opioids. Ann, you, me, QyX I think?, there's someone else here who's posted about it... we all experience this alerting effect.

If the Seroquel is doing nothing for you except enabling you to sleep, I would wonder about its value to you - but if it was prescribed for something else too, then the fact that it is worsening your WED suggests you would need additional medication to deal with the worsened WED/RLS.

What kind of diet changes did you make that allowed you to lower meds?
Wahls diet. I posted about it in Non-Prescription forum. viewtopic.php?f=20&t=8812&start=30
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Opiods

Post by ViewsAskew »

badnights wrote:
I wonder if everyone has alerting from pain meds?
I wonder if it's more common for WEDers than regular folk, to have this alerting from opioids. Ann, you, me, QyX I think?, there's someone else here who's posted about it... we all experience this alerting effect.

If the Seroquel is doing nothing for you except enabling you to sleep, I would wonder about its value to you - but if it was prescribed for something else too, then the fact that it is worsening your WED suggests you would need additional medication to deal with the worsened WED/RLS.

What kind of diet changes did you make that allowed you to lower meds?
Wahls diet. I posted about it in Non-Prescription forum. viewtopic.php?f=20&t=8812&start=30


Beth, there are a lot of us here who have the alerting thing - EeFall suffered greatly from it, and I am pretty sure Neco has mentioned it, plus others. I think that we see things skewed here, though. People who do not have it and for whom opioids work well would rarely have a reason to search for this message board. As we've said many times, the board is for the outliers in many ways - the ones who have weird side effects, the ones for whom meds do not work, the ones with multiple issues (like depression) that complicate things, and the like.
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.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opiods

Post by pjmccoy1 »

I'm back.... Has anyone tried Topamax for RLS and might it help pain med insomnia too?
PJ, Heaven Bound

ViewsAskew
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Location: Los Angeles

Re: Opiods

Post by ViewsAskew »

I tried it - but it didn't work for me. None of the drugs in that category work for me, however. I do not remember if there was an insomnia because I was up anyway moving around! My guess is that it would not cause it. It's not an opioid. But, it may be similar enough to gabapentin and the drugs you are trying to avoid because of depression.
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.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Opiods

Post by Rustsmith »

I started using it about the same time that the severe form of my WED kicked in. However, there were so many changes in my life (retirement) at that time that I do not blame the Topamax. I was taking the Topamax for migraines and not WED. It helped with my migraines, but also caused a form of aphasia that started as an inability to quickly recall peoples names. I put up with that for a couple of years until the side effect expanded from peoples names to any proper noun. I guess that is why my GP laughingly refers to it as "Dopamax".

But with that said, it obviously did not help either my WED or my insomnia. Gabapentin however has helped tremendously with my insomnia. I am using it in combination with Neupro patches.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Opiods

Post by ViewsAskew »

Just had a thought....

the hardest thing - to me - is that there is just about no drug or drug combo that works the same for all of us. There are few, if any, side effects that are 100 percent. It takes a HUGE leap of faith to try just about anything. You have to know that you have ultimate control. If it doesn't work, you can stop it. If it causes something terrible, someone can help you fix it. It's one of those things that "this is the best we can do" because we can't control it or know it. We can just guess and hope.

That, to me, is scary! Maybe it helps, from a cognitive perspective, to remind yourself of the positives IF it works and have a way out in case it doesn't work. After that, it just takes doing it and finding out.

Easier said than done at times, isn't 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.

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Post by Joanie60 »

Wow, Ann, I needed to read this. Thank you so much....

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Opiods

Post by ViewsAskew »

Joanie60 wrote:Wow, Ann, I needed to read this. Thank you so much....


I am glad. Now, I hope it helps me! I tend to spend much of my time "in my head." I envy people who just make snap decisions and move forward. Even when I'm not actively thinking of something, I'm mulling it someplace in my brain.

This is a great reminder to me of how much I need meditative practices - some form of yoga, tai chi, etc. Some form of mediation. I used to write three pages every morning - stream of consciousness. It was incredibly helpful to me. I haven't done that in ages. I used to swim almost everyday. I find swimming to be very meditative - my brain is quiet, it's simply one hand in front of the other, back and forth. Walking can be done the same way. And, of course, plain ole vanilla meditation can work wonders, but I find it hard with the drugs I take. I usually simply fall asleep these days. But, I don't need that if I'm doing one or more of the others.

Time to get back to that. It makes everything else so much easier, including decisions such as these. I like it when life is easy (even when difficult things happen) because I just go with it instead of fighting back, resisting, and trying to change everything with my will and intellect.
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.

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Post by Joanie60 »

There is an excellent New Years Resolution! I confess to using the short-cut a lot (look at my feet, that triggers me to remember to keep mind and body in the same place: THE MOMENT). But I have many more tools available to me, I need to use 'em, especially when I start my big med switch in a couple weeks.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opiods

Post by pjmccoy1 »

If methadone has a half life of 8 - 59 hours you take a dose every 24hrs then you're constantly increasing your dose correct? And if one of the side effects of coming off opiates is RLS then, in effect, aren't you feeding the demon of tolerance buy using a long acting opiate like methadone? I'm no physician or pharmacologist but I can do math. Is there a reason I'm not understanding as to why you wouldn't always prefer to use shorter acting opiates instead of one with such a long half life? Or do you develop tolerance more rapidly to short acting opiates? Especially with the withdrawal symptoms when med wears off and then you have RLS withdrawal symptoms on top of regular RLS symptoms.
PJ, Heaven Bound

ViewsAskew
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Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Opiods

Post by ViewsAskew »

It only can compound for X amount of time. Eventually, it's just staying at the same rate - not sure if that is 5 days or two weeks, but it's not months of buildup.

It would depend on your WED. My symptoms are 24/7. But, I use fewer mg of a longer acting than I did of a shorter acting. also, I could never sleep through the night with shorter acting. By the 3 hour mark, I was awake as they were wearing off and I had symptoms. I had to get up, dose, and wait for them to work to get back to sleep. It was not fun. But, if someone has shorter duration, shorter acting would be great. I don't think most people stay on methadone unless they have difficult to treat symptoms with a long duration. But, that's just my guess.

As noted before, tolerance has never been shown to be an issue for WED patients. The same rules do not apply as to pain patients.

per the rest, I think it would be smart to ask Dr B.
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.

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