Experiences with Methadone

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.
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Anonymous

Experiences with Methadone

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 3:58 pm, edited 1 time in total.

Ridgerunner
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Location: WI

Post by Ridgerunner »

I have been taking methadone for about 6 months now. Before this I tried Requip and Mirapex (for about a year) with little relief and harsh side-effects. I also tried Xanax, Clonazepam, and Valium with Tylenol #4 for about a year after the dopamine agonists failed and things were better.

Opiates sure do relieve the RLS symptoms, Benzodiazapines mostly just help with sleep. Opiates with tylenol in them is not the way to go long-term. This is why my MD and I tried the Methadone. He actually wanted to try Oxycodone but based on my own research I suggested Methadone and he went along with it.

Methadone is the best! It is dirt cheap and has a long half life so it can be dosed once daily and no worries of withdrawl. I do at times get to where I can sleep a very long time like 10 hours and then I wake up sort of feeling blah. Otherwise constipation is an issue for some but I eat such a high fiber diet that I have no problems.

I take 5mg at bedtime and 2.5mg as needed. Often I will take 2.5mg at 5-6 pm and the other 2.5mg at bedtime and I am fine. Occasionally I will wake in the am and get symptoms (6 hours or so after taking the medicine) and need to take another 2.5mg but not often. I may need to jump up to 7.5mg at bedtime, we'll see at my next appointment.

I have heard that us RLSers can usually get by with less than 20-30mg daily and use it long term like that. Dose escalation with Methadone is not a problem like it often is with other long acting drugs like ms contin or oxycontin. Hope that help.

ksxroads
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Post by ksxroads »

Thanks RR for your personal experience... I look forward to others commenting.
Opiates with tylenol in them is not the way to go long-term
That is so true, eventually with the medical facts and personal info my dr will see moving beyond using the hydrocodone apa.

Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 3:59 pm, edited 1 time in total.

ViewsAskew
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Post by ViewsAskew »

I wonder how long it takes to get used to - or if there are some people who don't. I am so glad that you have found someone who really does listen, "get" it, and it trying so hard to help you. I will keep holding you in my heart - hoping that you find something that allows you to get back at least a semblance of your former self, if not more.

I am sooooooo tired when I wake up in the morning. But, I've been like that for years. I said that to my neuro after my first two weeks on Mirapex. I kept thinking that if I was finally sleeping better I should want to get up in the morning. But, it didn't happen. Eventually I got insomnia from the Mirapex and that's the only time during all of this that I wanted to get up (meaning I was physically awake) - of course mentally I was appalled that I was awake at 5 AM!

I digress (again).

After over a year on Methadone, I am tired in the morning. I sleep wonderfully - the best I've ever slept. I can easily sleep for 10-12 hours and have to force myself up between 7 1/2 and 9. If I force myself up at 7 1/2 all week, I need one day of 12 hours to recoup and feel untired.

At this point, I have no idea of what it drug-induced, what is PLMD, what is RLS, what is screwed up dopamine and circadian rhythms, what is long-term sleep deprivation results, etc. I do know that my life is not what it was. It won't ever be again. I have mourned that and am pretty comfortable with it. Sometimes I still wish it were different, but mostly I just try to figure out how to fit the best of my life into this way of living it.

Not sure I really answered your questions, Em. Just sort of musing out loud.
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.

FidgetBoy
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Location: Minnesota

Post by FidgetBoy »

I'm sorry you're still not feeling well, Emily. You and I have chatted about this before but it took me a while to get used to my oxycodone as well.... at first, it made me nauseous, dizzy and super tired. But- I kept taking it because my legs could finally settle down. Now I barely know that I even took it! I am, however, finding it hard to get up in the morning. I'm not sure that will ever go away. Some people get used to narcotics over time and do really well, and others struggle throughout treatment and find they need to switch to a different narcotic. The auditory issues you are having and confusion are very common with narcotics. I have found that after I take my oxy, I need to go on the computer for a while- relax, try to not put the tv on due to high sensitivity to noise. The confusion stuff should go away with time as you get used to the narcotic. I hope that the methadone will soon work for you, Emily! Stay strong. Josh

Brenda B
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methadone problems

Post by Brenda B »

Hi,
I'm new to methadone also, after developing terrible augmentation from 8 years worth of Mirapex. It seems to take awhile to adjust to. I'm only in my 3rd week of using it, I'm on 2.5 mgs once at night and still trying to cut down the Mirapex. At one time I was as high as 1.5 mg, now I'm down to .5 mg (Mirapex). The methadone, at first made me very nauseous, dizzy and tired. Two Dr's couldn't tell me whether or not it would get better so I was feeling pretty helpless and hopeless. Thank goodness for online support groups! The side effects are definitely getting better, but I've also noticed that the RLS is creeping back in a little more, so I know I'm going to have to up my dose again. I'm sure it'll mean more nausea, dizziness and tiredness but hopefully, the RLS levels off and I can find a dosage that works. I was surprised to find that methadone will stay in my system for 24 hours....... that's how long it was taking to get over being sick to my stomach. To help ease into taking methadone, I take hydrocodone during the day instead. I've been using that for 4-5 months but it never stopped the RLS at night so knew it would NEVER take the place of Mirapex. Methadone DEFINITELY does! I know it's just going to take time to adjust, and my Dr. isn't a lot of help as far as dosage, so I'm winging it on my own (and lots of help from online!) I've been hearing from others who also cannot tolerate dopamine agonist drugs, and are getting by very well on methadone, so there's definitely hope!
Brenda :D

ViewsAskew
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Post by ViewsAskew »

Hi Brenda! Good to "see" you here. Glad to here that you are tolerating it a little better. I hope that the next increase isn't too awful for you.

After trying hydrocodone and one other narcotics (one of the weaker ones), I also was so surprised at Methadone. The others didn't really help the RLS much at all.
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.

Aiken
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Post by Aiken »

Make Mine Coffee wrote:normal noises seem really loud to me,

My experience with other opioids, though I've never taken methadone, is that they all increase something to do with the startle response. When I've taken something, even snapping my own fingers or rapping a table will give me an electric shock of startlement over my entire skin.

I've gotten used to it. I don't turn the TV up loud and I don't snap my fingers. :) The only problem is that my wife has a habit of violently grabbing and turning door handles (KA-CHUNK) and that makes me jump three feet out of my skin. She's getting better, though.
Last edited by Aiken on Sat Apr 14, 2007 10:04 pm, edited 1 time in total.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 4:13 pm, edited 1 time in total.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi Em, and to all,
I'm sorry to hear that you've had to up the meds so early. :? So is there really no change in the facial RLS at all? WOW, I'm just shocked, but I wanted to tell you I'm still with you and that moon is too.
I am always tired in the morning, worst yet, since my doc wanted to add to my cocktail, I suffer with huge bouts of "I wanna nap" syndrome in the afternoon now. I now I shouldn't and fight it hard. But like Ann, I find that once a week, if I'm lucky I just try to sleep when my body tells me to. It's a wasted day for others that live with me, but I feel like it helps to do so.
I hope this finds everyone filled still with hope. I'm with ya on that one. Maybe it's this awful weather. Come on winter.
Love hugs and the moon
Lynne

ViewsAskew
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Post by ViewsAskew »

Em, since I'm at 15 mg at one time, it doesn't surprise me that it doesn't work quite yet. Of course, it may not ever, but I sure hope it does. When mine was crazy, it seemed like nothing could interrupt it. Once it did and I broke that vicious cycle, it seems like it takes less now to resolve it. Not sure that makes sense. . .

I was thinking about you today and hoping to see a post from you. Glad you are still hangin' in there.
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.

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 3:59 pm, edited 1 time in total.

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

Em- I was wondering how you were doing! I'm glad you checked in with us. I'm sorry you're still dealing with your legs. Let us know if you need anything....

tazzer
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Post by tazzer »

amen! bring on the winter.

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

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