Methadone Users

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.
ViewsAskew
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Post by ViewsAskew »

A personal journal can be a great thing, Helen. Several of our members have done that on this site, some still post in theirs.
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.

RLJames
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Post by RLJames »

I haven't posted here for awhile.

Last January, I went on a vacation to Cancun. In my luggage, I tossed in the bottle of prescribed methadone. The first night in Cancun, I realize that in the bottle were only TWO tables left! Yeeooww! All through the rest of the trip (5 days more) I suffered so miserably. I was wiggling my feet, kicking my legs, punching my calves and was up most of every night. I also realized that my RSL has progressed to a painful one instead of just the bothersome annoying wigglly, creepy crawly feeling.

Needless to say I was happy to get back to California and immediately saw Dr. B for my refill.

BTW, Dr. B promptly told me that there were no withdrawals from the methadone but that the RSL symptoms came back with furious vengeance. I happen to agree with him

Don't leave home without your methadone!

ViewsAskew
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Post by ViewsAskew »

Br B has always maintained that none of his patients who take methadone once a day have difficulty stopping it. A couple of other people have said the same. Glad to hear it again, as many of us do worry about that.

That said, I do imagine that a few of us might have a difficult experience.
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.

Neco
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Post by Neco »

Personally, I don't quite believe there is no withdrawal from Methadone.. Even once a day on small doses.. Many an addict have relayed horrible stories of being titrated all the down to as low as 1mg - and then once the meds stopped, the pain was horrible.

I have never historically had a problem with painful RLS myself, although I do believe there is some pain involved.. But I only had severe pain issues when running out of meds, after I started taking Methadone, and am pretty sure it was withdrawal.. Clearly the pain was bad enough I saw fit to forge an early refill at one time, and I can't believe that much agony was caused by RLS alone.

Of course everyone is different, and I'm sure there are quite a few number of people that can have virtually no withdrawal symptoms from reasonable doses of Methadone, however if my response to RLS medications, and my extensive experimentation with and abuse of a number of pharmaceuticals has taught me anything, it's that nothing is absolutely certain.

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woodsie357
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Post by woodsie357 »

I'm really sorry to have to type this. My husband lost his job, last Thursday. I'm afraid I won't be able to see my Dr at John's Hopkins, or even my general practice Dr. I'm going to be uninsured. I don't have a clue how I'm going to get my medications =(*. I live in a new state and everything is different. I don't know the program names. I'm sorry I'm venting I'm just sad, scared, and don't quite know how to handle the situation. I'm on methadone, and ambien and it's been working. I've been getting 5ish hours of sleep. I'm hopeful that I can hold down a job, if I can find one.
Someone cares about your sleepless nights

ViewsAskew
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Post by ViewsAskew »

Woodsie, not sure about the Abien, but at least the methadone is very inexpensive.

If you tell your doc, I imagine he'll be understanding and find a way to help you.

That said, I can imagine how scared you must be....your husband, too. This is a scary time for many of us. I hope that things get better in the next year, but for now, it's very hard.

I've been without insurance and I know how scary that is. Your husband can take COBRA, but it is terribly expensive, I know. And, without a job, it's hard to pay for.

I hope he finds something quickly and that you find a way to get what you need.
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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woodsie357
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Post by woodsie357 »

I was just thinking I needed to get a note from Dr. Earley that explains some of the common problems one with RLS might find in the job force so I can get help. I'm not confident in this though his office is so hard to get through to, just a message machine, and they've never returned my calls. I have insurance until 5-31-09. My next appointment with Dr. Earley is June 3rd. I've already asked them to move it to may if possible.... no return call yet.
Someone cares about your sleepless nights

ViewsAskew
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Post by ViewsAskew »

Good idea to move up the appointment - tell them you will take any cancellation in case there isn't an appointment available.

Not sure how much disclosing you want to do before you are hired...I'm being cynical, but I don't trust them not to discriminate against you. But, once you are hired, you can get an accommodation. My best friend has one - she has lupus.
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.

SquirmingSusan
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Post by SquirmingSusan »

Woodsie, so sorry to hear about your husband losing his job, and all that goes along with that. That would be good if you can get your appointment moved up so that you still have insurance. I hope you can both find employment soon. These are scary times.
Susan

bharrod
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Post by bharrod »

Wow, I have not been here for such a long time!! Hi everyone! - I totally agree with Zach for SURE!! The fact that Dr. B thinks that there is no withdrawal from methadone is scary! I am only taking 5mg per day and WOW if I don't have it for a few days, I go into severe withdrawal, and being that I have been addicted to alcohol and vicodins in my past, I think I know what withdrawal symptoms are. And WOW they are horrible on methadone, in fact I recently tried to quit the methadone and was so sick that I was completely bed ridden for a few days and I had severe RLS in my arms too, which was very strange!! Once I started back on the methadone, my horrible (and I mean HORRIBLE) withdrawal symptoms went away after about 2 to 3 hours.....

Now I am on a mission to get off the methadone for good, if it can put me into that bad of withdrawal then it's not the drug for me....Also, my adrenal glands have stopped producing cortisol and my pituitary gland is malfunctioning, all because of the methadone. So I am getting off this crap very soon, my husband is going to take 2 weeks off of work to help with the kids while I go through withdrawals here at home. I already know that it will be TEERRIBLE because I just recently tried it and I caved in after 4 days :-(

But this time I will have a plan and some back up meds to get me through.
I am thinking 2 weeks should be enough time to get me through the worst part. I feel that the methadone is the cause of a lot of the issues that I am having including absorbtion of foods in my gut.

Don't get me wrong, it's been a wonder drug for fixing the RLS - it works, but at what price?

Mia

woodsie357 wrote:I'm really sorry to have to type this. My husband lost his job, last Thursday. I'm afraid I won't be able to see my Dr at John's Hopkins, or even my general practice Dr. I'm going to be uninsured. I don't have a clue how I'm going to get my medications =(*. I live in a new state and everything is different. I don't know the program names. I'm sorry I'm venting I'm just sad, scared, and don't quite know how to handle the situation. I'm on methadone, and ambien and it's been working. I've been getting 5ish hours of sleep. I'm hopeful that I can hold down a job, if I can find one.

Neco
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Post by Neco »

The only information I could seem to dig up was a less than credible page on a detox clinic site, which lists a kinds of medications and pushes some rapid detox BS stuff..

They say that MEthadone suppresses pituitary function or something like that, but then cite a dose of 80mg/day or higher.. I dunno.. They also claim Methadone will make you "dumber" over a longer period of time.

You really need to go see a doctor and have this thoroughly checked out, I mean try to get into the Mayo Clinic or Johns Hopkins or something and get some heavy testing done. Make sure you are blaming the right thing.

Because what happens if you quit, you finally get off, but none of your problems go away? You will be miserable with RLS and also have health problems.. I'm not telling you to keep taking Methadone - I just hope you have plans to have this thuroughly investigated by qualified, credible clinicians.

bharrod
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Post by bharrod »

Zach, I have not been to Mayo or anything like that, but I have been to literally dozens of doctors over the past year and I have had every test done under the sun, I even went as far as to have the mercury (silver) fillings removed from my mouth thinking that the mercury was causing these issues that I am having.....I have had my urine tested, my blood tested for dozens of things, my hair tested for mineral and vitamin deficiencies, the bills are in the thousands now from doctors and labs. Nobody can figure out what is wrong, my pituitrary, adrenal or HPA function is almost at ZERO. Methadone CAN mess the HPA axis up a lot. I am not producing cortisol, I have adrenal fatigue now. This is common in methadone users, especially people like me who are very sensitive to certain things. I kjnow that the RLS will be like pure hell for me when I get off the methadone, trust me I am scared to death over that crap. But my body is failing me, and everything in my search for truth is pointing to the methadone causing all of this crap. Tonight is my last night on the methadone, my husband took 2 weeks off of work so that I can detox over the next 2 weeks. I got some Lunesta sleeping pills and a TON of vitamins and minerals to take. I know I can get through this, I know I can. But nobody says it will be easy......I have to find something else for my RLS, Ambien worked good for me, but that is addictive too, maybe I will try some Brewers Yeast, I have heard that is good too.
I am detox bound...........and scared to death!!
Mia

Neco
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Post by Neco »

I'm in no position to dispute whether or not it causes it, but more or less these kinds of issues seem to be really high dose issues, which is what confuses me..

But you have said you are sensitive to medications, so that is likely what happens.. I would like to think your unfortunate situation is in the minority however..

If Methadone worked well for you, I would not discount opiates as a whole - because there are other options, such as time released medication.

Or you could look up Subutex. It's an alternative to Methadone treatment of drug dependence, but rlsgirl's experience shows that it can work just as well on RLS, and potentially with much smaller doses depending on the person. It also is not an opiate in any way, that I am aware of, and is actually what they call a "true opiate blocker". Although that means if you ever bust a leg or something, normal painkillers would likely do squat. However its still an alternative many former Methadone patients seem to like better. Have to get insurance to pay for it though because its about as expensive as Oxycontin.

I would ask your source on these Methadone issues (assuming at least one doctor has actually pointed at the Methadone as the problem), how much safer Subutex would be for you. Just make sure you get actual Subutex and not Suboxone, as Subutex comes without naloxone, an opiod-antagonist that may cause issues with RLS symptoms if it were ever accidentally absorbed (its a security measure to prevent crushing abuse, etc.. will send you into immediate, painful withdrawal).

The good news is, if you decide to go with it.. You don't have to prolongue your W/D and suffering, as part of the initial treatment plan requires you to be in full opiate withdrawal before it can be administered. I think you only have to be in withdrawal for a few days at most, but I could be wrong.. But generally the majority of your receptors have to be free so if the subutex strips any other opiate molecules off (and it will do this, it has an even higher binding affinity than methadone), you will not go into an immediate severe withdrawal.

bharrod
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Post by bharrod »

Zach, being a methadone patient yourself, let me ask you, do you suffer from any fatigue whatsoever? Or can you pretty much stay up and busy all day long until it's bed time?
Also, do you have any allergies, asthma, or are you sick more then once or twice a year?
Mia

rlsgirl
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Post by rlsgirl »

Zach wrote:I'm in no position to dispute whether or not it causes it, but more or less these kinds of issues seem to be really high dose issues, which is what confuses me..

But you have said you are sensitive to medications, so that is likely what happens.. I would like to think your unfortunate situation is in the minority however..

If Methadone worked well for you, I would not discount opiates as a whole - because there are other options, such as time released medication.

Or you could look up Subutex. It's an alternative to Methadone treatment of drug dependence, but rlsgirl's experience shows that it can work just as well on RLS, and potentially with much smaller doses depending on the person. It also is not an opiate in any way, that I am aware of, and is actually what they call a "true opiate blocker". Although that means if you ever bust a leg or something, normal painkillers would likely do squat. However its still an alternative many former Methadone patients seem to like better. Have to get insurance to pay for it though because its about as expensive as Oxycontin.

I would ask your source on these Methadone issues (assuming at least one doctor has actually pointed at the Methadone as the problem), how much safer Subutex would be for you. Just make sure you get actual Subutex and not Suboxone, as Subutex comes without naloxone, an opiod-antagonist that may cause issues with RLS symptoms if it were ever accidentally absorbed (its a security measure to prevent crushing abuse, etc.. will send you into immediate, painful withdrawal).

The good news is, if you decide to go with it.. You don't have to prolongue your W/D and suffering, as part of the initial treatment plan requires you to be in full opiate withdrawal before it can be administered. I think you only have to be in withdrawal for a few days at most, but I could be wrong.. But generally the majority of your receptors have to be free so if the subutex strips any other opiate molecules off (and it will do this, it has an even higher binding affinity than methadone), you will not go into an immediate severe withdrawal.


This is true....you have to be in withdrawls for 3 full days before going on Subutex. THere is a medication (believe its a blood pressure med) that you can take during this time that makes it easier on you to deal with. After that you start the Subutex and within 3 seconds of it being under your tongue you feel the effects of it. I can drop mine (only 1mg) at 5pm and it works on me into the next day. I usually start to feel a down slide about 2 pm but I hold off on taking it until 5pm just to give my legs time to wiggle for a bit during the day. It has been my wonder drug but not all Drs. can prescribe it. YOu would need to go on the suboxone website to find a dr. in your area that can prescribe it to you. I fear any kind of injury that will cause me pain and need pain meds but its worth being RLS free I will take any other pain as it comes. Good luck

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