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.
bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

Thanks for the info Rlsgirl, but that drug just scares me.......have you ever been on methadone? What is the difference between that stuff you are on and methadone?
thanks
Mia

rlsgirl
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Joined: Wed Nov 26, 2008 2:28 am

Post by rlsgirl »

bharrod wrote: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.


Have you thought about Subutex? I'm on it and I'm hungry all the time. Have no issues in keeping any food down. Also, I came off of it not to long ago and have very little withdrawl had a little but no painful withdrawl more like a headache during the day for the first day and some shaky feelings every once in a while but that was it.

bharrod
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Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

rlsgirl, i cannot see getting off of one addictive drug and getting right back on another one, there are clinics out there to get people off the drug that you are taking. I am trying to get off the methadone because it messes up the HPA axis in the body, which is what all opiate type drugs do eventually do to those who take them. I just got my punishment quite early in the game. I am going to be trying some holistic type meds to calm the RLS, but until then I will need a lot of prayers to get through the withdrawals of the methadone, which I quit yesterday - wish me luck,
thanks
Mia

Neco
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Post by Neco »

Mia..

Methadone has caused me absolutely no problems that I am aware of. Quite the contrary it has actually made me a potentially more productive person. Since I started Methadone, I have actually been able to establish a normal sleep pattern. It's a bit of a drag to get up at 4am most of the week for my early morning job, but I usually have no problems doing so as long as I am in bed early enough. and almost never have trouble falling alseep.. No other medication I have specifically taken to help me sleep throughout my life, has ever had this drastic of an effect on my ability to fall asleep and stay that way. It's been almost a year and I can't believe it, I've even stopped worrying it will quit working for the most part.

However there are somethings you have to understand about me first.. I am an unusual person, and have issues stemming from adolescence that have carried over into adulthood - long before I ever began taking Methadone.

I can't function like "normal" people, in that yes, I do wear down easily, but I do not suffer from an initial lack of energy like would be experienced from chronic fatigue like symptoms. I just have below average stamina from what I can make of things. I can't function for more than a few days on little sleep, without at some point falling asleep during the day and having a nap, etc.. I just can't do it - I've never been able to once I hit my late teens. I don't mentally understand how the rest of my family and other people in the world, can go to bed at 12, get up at 5, be up at school / working and get home between 7 - 10pm, maybe make it to bed an hour earlier and get up and do it again.

I am incapable of doing that.. Also, I have allergies which although I've never had officially diagnosed, I believe to be seasonal allergies to things like dust, etc.. My allergy problems usually consist of stuffy/runny nose - so it is not often for me to not feel well, or to feel like I am sick when it is really just my allergies. Medication works but I don't always take it unless they get really bad and I start getting headaches.

Also, I am a very timid person in real life.. Although you wouldn't guess it by my vocabulary and the authority I convey on knowledgeable subjects when I post here - I am a bit of a spaz. I constantly worry about things, and many times a year I can stress myself out to the point where I become physically ill. I only really catch a cold and get sick only a few times a year. In addition I believe I am easily vulnerable to minor food poisoning, whereas a normal person wouldn't even feel sick or display symptoms, I at least feel under the weather.

The only side effects I ever experience from Methadone are..

If I take more than 25mg I will begin experiencing severe insomnia where I don't feel tired and like I need to go to bed, but I constantly nod off, or am able to only get minimal sleep.

Ocassionally I might get some edema (water retention) in my legs in higher doses as well. But this is very rare and non-threatening to me, as I just put my legs up when I go to bed or lay down to watch TV to help it get absorbed and turned into urine. I pretty much just treat it as a warning I'm taking an excessive amount of medication and need to cool it.

Sometimes in the maximum end of my dose range (20mg/day) I will experience uncontrollable hiccups only when I try to inhale while smoking a cigarette.. Sometimes it is very minor, sometimes it will hit at the first inhalation after I light up. I don't know why it happens, but its the only severely annoying side effect I really hate and again is somewhat of a benchmark I use to tell myself I am starting to go beyond the prescribed limit of what I am allowed in a given day.

Other than those.. I get the usual constipation issues. Which can be brutal, and usually involves a bit of blood (not in the stool, but from friction of pushing or straining).. This usually happens only when I get lazy with my fiber intake, or if I decide to polish off a whole box of my favorite Oatmeal Raisin granola bars, or eat a ton of instant oatmeal in a 2 or 3 day period.

The final side effect I experience is a random twitch.. Remeniscent of my Ultram induced seizure experience, and the subsequent loss of muscle control I had while continuing to take it and suffer in silence hoping it would go away.. However these twitches are COMPLETELY different and are not life threatening in any way, unlike my Ultram related ones had the potential to be.. (I had one brief twitch while driving a car that is out of alignment as it is.. THAT was scary, thankfully I was able to get on the Methadone shortly after)

I do not experience a loss of muscle control or anything.. They only show up when I am in bed about to fall asleep (from time to time) or am otherwise tired/drowsey.. Be it sitting at the PC or watching TV in bed, etc.. They have never happened while I was standing. And its just a muscle twitch, like a jerk when you wake up from a falling dream - my doctor told me that it can be a side effect of the Methadone, as a cancer patient taking it also was reported to twitch randomly, as reported by his family.


I have done a lot of light reading on methadone around the web, and overall never came across anything that realistically made me scared. The whole Methadone rots your teeth myth, methadone leeches calcium, etc.. is all crap from what I can tell.. It doesn't help that addiction treatment / detox centers seem to perpetuate this myth to scare people off methadone, thus making money as people run to them to detox...

Here is a good web site you can do some reading on. This particular page is a question/answer test.. seems to only work properly in Internet explorer tho (the answers popup when you mouse-over the "answer" link)

http://www.methadone.org/library/methad ... _test.html

Interesting to note, one of the answers mentions the immune system and endocrin function. In which they state it may actually normalize the immune system or enhance it - something no other opiate does.. Again not discounting the issues you are facing, but you seem to have come to this conclusion on your own, based on something.. I don't know if you read it somewhere or just came up the idea yourself.. But I really reitterate you won't know for sure unless you see a real specialist or diagnostician who knows their stuff.. Its your choice.

That being said.. I don't consider Methadone addictive. You need to separate addiction from dependence. Addiction is a purely psychological problem. Like with your alcoholism you just needed to keep drinking, you always wanted your drinks, or wated more of them.

The same as with my opiate addiction.. I wasn't taking extra medication because I was in such severe pain or medically needed it - I was taking it because it made me feel good, and I craved being in that state of mind all day long..

Dependence is a legitimate medical side effect to many medications. Ambien, etc as you noted. There is nothing wrong with being dependent on a medication that you legitimately need to function as a human being or otherwise relieve suffering.

Missing a dose and going into withdrawal doesn't mean you are an addict. Addicts are not the only people who go through withdrawal by any means. Withdrawal is not a sign of addiction - It is a sign of physical dependence. Your body has become used to the medication and is trying to cope with the fact it isn't there anymore. Being in withdrawal is nothing to be ashamed of, and doesn't automatically make someone an addict. But in today's culture it seems like everyone is taught to blame themselves when it comes to these kinds of things, which just makes it worse.

It's not about replacing one addictive medication with another - and I would like to see information from a medical source that states Buprinorphine (subutex) is addictive - again don't confuse addiction with dependence. And as far as I know, you DON'T need a special special license to prescribe Suboxone/Subutex, just like with Methadone, you may have to take some general exam that covers other meds in its category but I would walk into my doctors office tomorrow and ask for a prescription for Subutex, as far as I know. Likewise I could go to the county and get a prescription for Subutex from the physiatrist there, although he can't prescribe Methadone.

It all has to do with funny rules and regulations mostly.. I do not feel addicted to Methadone like I was to other opiates (and remember subutex is NOT an opiate - its an opiate blocker)

http://www.methadone.org/namadocuments/es03myths.html

This is also a very interesting read, on the issues of addiction, dependence and prejudice. It is a very old essay, but it is still worth reading as most of it rings true to this day.

Ultimately the choice is yours. I just hope that, again, you are making this decision based on some sound medical counseling (which based on your responses it doesn't sound like you've gotten, or haven't asked the right questions when getting it) and not just some gut feeling that is HAS to be your medication causing these problems, at this specific time in your life, after taking it for so long without issues from the start.

I still remember how you freaked out about Methadone when you read about that idiot mother in Australia that gave it to her baby and killed it.. I just want to make sure you are making a decision after in-depth discussions with at least your own doctor, or someone in the medical field.

I do not doubt that it could be the methadone, I just want to make sure you are doing what you feel is right, for the right reasons and not out of fear.

We all wish you luck in whatever you decide you need to do, and if your RLS is making you insane we will always be here to listen and to comfort you when you need to post.

bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

Zach, thanks for posting that message, it was very informative and I loved it!!

You are absolutely right, I am not addicted to the methadone, in fact I forget to take it all the time :-) - I am dependent on it physically though, for sure! Thanks for clearing that up for me, because you are absolutely right on that one. I know what addiction is, as I was highly addicted to alcohol for many years, not anymore though, but I know what it's like to crave something very badly, and I never crave my methadone. So you are right.

It should be noted that I am in contact with a drug rehab doctor named Dr. Dave, and he specializes in methadone withdrawals and has for many years now.

A lot of what he is saying is absolutely correct because it's happened to me, I went from gardening all the time and cleaning daily to doing absolutely nothing at all for months at a time, I have bouts of energy but then it's back downhill again.

I, like you, have that past that causes me problems in my adult life and have been in therapy for many years over those issues, that is why I became an alcoholic too, it causes me depression and some bipolar "type" issues, but NEVER in my life have I been this sick and tired all the time, this all started while on the methadone.

My adrenal glands and thyroid gland are not working, there is no family history at all of this, and from what the doctors can see, it seems that I have thyroid resistance, which is more typical in toxic cases such as mine (where opiates or toxins are involved). So it all makes sense....I suspect that many of my issues will go away now that I have quit the methadone. But it will take many months for my adrenal and thyroid glands to recover from the devastation of the methadone. The doctor that I have been talking to says that the adrenals are ALWAYS effected by the use of opiates and in my case that has happened for sure! Losing your adrenals isn't fun, that causes major fatigue and allergies.
I do not know what I will do about my RLS, but I can tell you that I will not be going on any drugs that will cause physical or mental dependence! I will have to suffer throught the RLS. This time it might not be so bad though, you see before when I had bad RLS (before using the methadone) I was a heavy smoker, heavy beer drinker, heavy coffee drinker, all of those things are major triggers for RLS and now I am using none of those subtances, so I am hoping that the RLS will be more tolerable now like my mother's and my sister's, they all have RLS but only mildly.

For now, I am going to start taking Lunesta to help me sleep for the next 2 weeks while I detox off the methadone and I am taking tons of vitamins and minerals too to get me through this.



I will post a bit of his emails to me here:

"Hi Mia...of course everyone on methadone, or any other opiate, suffers from fatigue...all opiates negatively effect what is called the hypothalamic, pituitary, adrenal (HPA) axis...which basically means all bio/neurochemical processes in the human body are negatively affected...at what level depends on many factors...nutritional intake, genetics, and others...some more negatively affected than others...and we see this in treatment...some march through the detox in 7 days...some take 6 weeks...on the average most get through the process in 12-14 days or so...even then on the average it takes 3-6 weeks on the average to return to the original sense of normalcy...and while your levels of the neurotransmitters appear normal and the vitamins appear normal...you are certainly not utilizing them to the extent that a normal patient does...just because they are there doesn't mean they are operating under normal situations...they are not...and if fact the proof in the pudding is that all on opiates for extended periods of time get immune deficient...and the fatigue is another marker of this inbalance in neurochemistry and biochemistry...so while you may be producing the Neurotransmitters it doesn't say anything about the receptors that they work on...receptors are amino acid complexes that are upregulated and down regulated as per the genetics or blue print...since methadone and all opiates are strong dopamine/norepinephrine reuptake inhibitors--it is a good likely hood that these receptors are and have been down regulated...that in a nut shell is why people go through withdrawals...simply the symptoms that people go through that mark the effort the body/mind goes through in shifting the chemistry back to some sense of normalcy...opiates have a negative effect on GI function also...toxins that would be normally eliminated are recycle time after time, methadone definitely puts strain on the adrenals, all who are on opiates in general down regulate adrenal function.
dr dave"

Neco
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Post by Neco »

Honestly?

It sounds like some of what he is saying... is some marketing line.. Most specifically the bit about the recycling of toxins over and over - that's the same line these quick colin clense / bowel health people spew on TV or whatever, about constipation, etc.

Constipation is not normal, and keeping a steady fiber intake usually helps most people deal with it.. But he also kind of make a blanket statement about what opiates do to people... A few of us here are on opiates, and millions around the country take them..

The majority of us have jobs, have energy, and life active meaningful lives.

In your case he is absolutely right, it has had a negative impact on you and is most likely the culprit (I hope to god it is, and you're not going through this for nothing) but I have a severe dislike of the way he worded some of what he has said.. I have never seen anything in reputable medical sources that say this kind of stuff about opiates, either one in particular or as a whole.. It sounds like he is also one of these neurotransmitter imbalance believers, and is trying to apply that to opiates as well.. Or maybe he just worded what he was trying to say poorly.


HOWEVER. That's just my opinion. As long as you've done your homework, and he and the place where he works seems like credible upstanding institutions, there is no reason not to detox under his supervision.

Maybe I am just being pissy and defensive of my medication, I dunno. But I don't "buy" half of what he wrote - and it may just be because of the way he wrote it, not necessarily the science itself.

Again, I hope all goes well for you, and you find some way to manage and cope with your RLS..

ViewsAskew
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Post by ViewsAskew »

In the past ten years or so, adrenal function, along with thyroid and other glands, has come into the limelight. Several doctors have written books about adrenal fatigue and you can get tested for it.

When I asked my regular doctor, she said she didn't believe in it

Now, it's one of two things: A) these doctors are ahead of everyone else and the rest of the world hasn't caught up, along with research or B) it's a way to make money....

I honestly don't know which it is. I started reading these books looooooong before I started methadone. My fatigue is definitely something that's been around for 15 years, the last 8-10 pretty terribly.

Does methadone hurt? At one point I thought it did. But, I've found that what seems to hurt me is sleeping too much. With methadone, I can finally sleep. And I don't like getting up. Never have, not since I was a toddler. So, I stay in bed, 10, 12, 14 hours.

But, starting a few months ago, I just started MAKING myself get up. Like Zach, I can't have too little sleep, either, but I find that there is a perfect place and that if I hit it, I'm just fine. If I have too little, I'm screwed. If I have too much, I'm screwed.

I've also found that I MUST have physical activity. The last 8 months I thought the fatigue was worse. But, that's when I injured my knee and pretty much stopped all activity. A few months ago, I said the heck with it, if it hurts it hurts, but I'll try to find things that don't. I was successful. Today, after lugging heavy bales of sphagnum moss, perlite, vermiculite and then making a container gardening mix, taking heavy old soil and removing it and lugging it to the dumpster, etc., I feel great.

So, again, not the methadone. Just me not being able to do what my body needs me to do.

I still think I don't function as well cognitively while on the methadone, but again, it got SO bad when I augmented and didn't sleep for a long, long time, that it's still much better than it was. Will I ever get it all back? Don't know. And don't know if the methadone is keeping me from doing so. But, it's still so much better than it was. And, that is good.
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.

bharrod
Posts: 163
Joined: Sun Jun 10, 2007 3:51 am

Post by bharrod »

Adrenal Fatigue is very real, my doctor didn't believe in it either, so he sent me to a specialist, an Endocrinologist who finally diagnosed me with it, but they call it "Adrenal Insufficiency". I have an article written about it from Johns Hopkins University! But basically your body doesn't produce enough cortisol, which causes all sorts of problems.

Zach, I too have those twiches you are talking about, maybe mine are different though, but basically my skin moves on my side, hips, stomach, legs etc....and sometimes I can see it moving (the way an eyelid twitches)....This is caused from the methadone, I never had that before the methadone. And I am sorry but if a drug causes my skin to twitch on the outside, I can only imagine what it's doing to my organs on the inside!! Scary..........

Mia

bharrod
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Post by bharrod »

Adrenal Fatigue can also be caused by undiagnosed or undertreated thyroid problems like hypothyroidism. Turns out that I Have thyroid resistance, meaning that my thyroid tests always come back normal (as if I don't have a thyroid problem) but when I took thyroid meds I felt dramatically better, that is when I knew I had a thyroid problem finally. I still take my thyroid meds now, but hopefully my thyroid problems are caused from the methadone and not permanent.
Mia

Neco
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Post by Neco »

Actually Mia, my twitches are "full body" as I mentioned before, if you've ever jerked awake in a car, or chair etc, from a dream where you thought you were falling, etc.. That's what mine are like.

No doubt the Methadone is playing a role, as one period where I was on Vicodin temporarily they diminished in frequency and severity and then stopped, until I got back on the Methadone.

That being said, what you are describing, with your "skin" is more like a muscle twitch. I have those on ocassion too, but can't recall back far enough to remember if it happened before Methadone, in my case. Touching the affect area usually helps. I actually had a period for a whole week where my eye would randomly start twitching, in the muscle just below the the eyeball. Then it passed and I've not had problems again, yet.

It's really weird. I still think you should contact the endocrinologist again, and ask for their opinion on Methadones involvement, if you haven't already. I would assume they knew you were on Methadone, and then say something if they thought it was part of the problems, tho.

Hopefully you will find out soon enough one way or the other, if removing it fixes your problems.

Wayne
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Post by Wayne »

I've experienced the muscle twitches you describe Mia.

I think everyone experiences the occasional random muscle twitch or "tic" as I think they're called.

For me, on very rare occasion, the twitch will persist for hours or all day long, not painful, but annoying for sure. Typically it will be gone after getting a night's sleep or just by getting your focus shifted off of the twitching and onto something else.

My memory does stretch back quite a ways and I can recall having these persistent tics long before RLS or medications and I don't take any kind of opiate, never have.

bharrod
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Post by bharrod »

Wayne, thanks for replying, but I have talked with all my family and friends and none of them get these twitches, I get them up to 10 or 20 times per day, sometimes less sometimes more, but every day no less.

My doctor said they are not normal, but he didn't know what was causing them either. I think they are common in MS patients, but I do not have MS though and never will (positive thinking) :-)
Mia

Aiken
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Post by Aiken »

I've been out of the country while dealing with a family issue, so I'm a little late to the game here, and not sure I've seen everything to date, but here are some quick thoughts:

- I'd suggest researching "fasciculations", as that sounds like the sort of twitching you're talking about. I got these during a period in which I was extremely stressed and taking a benzo to address the stress. Not sure which was at fault. They're usually benign, albeit really annoying. YMMV.

- I haven't seen you say anything about liver function. You were a heavy drinker until last year, if memory serves. That's very hard on your liver, and your liver plays a key role in the metabolizing of opioids. As a result, you may be experiencing effects from 5mg of methadone that would require 40mg for someone else. It's all down to how much methadone gets metabolized into the active substance by your liver. Thus, you may be as physically dependent on methadone as someone who gets 40mg per day at a clinic. I'm just throwing out numbers here, but you get the idea. If you haven't already, you should have some serious liver function testing done.

- While occam's razor says that because the symptoms came on with the methadone, the methadone probably caused them, it's still not a given. Going off of methadone will throw your body and mind into turmoil that may be difficult to read results from. Take your time, and be careful, when drawing conclusions.
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.

bharrod
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Post by bharrod »

Thanks Aiken,
I quit the Methadone on Wednesday, but didn't sleep at night Friday night or Saturday night, it was driving me CRAZY. NOt the RLS, but the pain, I had pain in my legs and pain in my upper arms and RLS was severe in my arms (not in my legs)........So I had to break down at 4:30am this morning after not sleeping at all for 2 nights and take 2.5 mg of Methadone. I am awake still, but the pain is gone now.
Funny thing is that before taking Methadone I never had pain with my RLS, now I do in my arms and legs.
The Lunesta sleeping pill the doctor gave me didn't work one bit, so I took another one, still didn't work one bit. Strange.
I think I am doomed to be on methadone the rest of my life, there is no way to quit this stuff and now I am angry as hell that I ever decided to get on this stuff in the first place.

mackjergens
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Why "Cold Turkey"

Post by mackjergens »

Why are you going "cold turkey" ? I would think you would have to taper off this med. Can you not stand just by taking 1/4 less than you were for a couple days, and then go down more and more, it of course would take alot longer to get off.

The trama you are putting your body thru by going cold turkey, is horrid, you will never know exactly how you are going to handle being off this med without doing it slowly, because personally I dont think you will ever make it without tapering off.

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