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.
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Helen518
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Post by Helen518 »

Help! I am having a terrible week! My legs have been tingling for about a week - it's just getting worse even though I moved to from 7.5 to 10 mg of methadone last friday. I'm having panic attacks, crying, because I can't get comfortable and it's too cold to walk comfortably. I've walked, but I think the cold makes it worse. I think if I could get the anxiety under control, I would be OK, I want to take some klonopin, but I know that I"m not supposed to take that with methadone. Strangely, I can sleep, but when I'm awake, I can't get a break from the symptoms. I'm seeing the psych tonight. I'll do anything to get some releif - I'm that desperate, I'm not even worried about whether we have another baby . . . just make it stop, please . . .

ViewsAskew
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Post by ViewsAskew »

I am so sorry you are having such a rough time. That feeling of being willing to do anything to make it stop....I really hate that feeling and can empathize with how horrible you feel.

You've made so many changes in such a short time. It may take awhile to get it all worked out. I hope your meeting with the psych goes well and she or he offers some way to make it better.
Ann - Take what you need, leave the rest

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Polar Bear
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Post by Polar Bear »

Helen, you have such a lot going on at the moment, and it is so awful when you hit that pitch of desperation when you are screaming inside.

Good luck with your psych appt.
Betty
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Helen518
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Post by Helen518 »

Thanks for your replies, Ann and Polar Bear. The Psych put me back on Neurontin, but is spreading the dose throughout the day instead of all at once like the neuro had me doing before. It seems to help my anxiety in addition to my RLS. I really wanted some Klonopin but he wants to avoid me having to go thru benzo withdrawal again if we decide in a couple of months to continue with the IVF.

He also gave me something called Provigil 100mg to take in the morning. It is usually given to folks who have daytime sleepiness due to MS, sleep apnea, Lupus, depression or shift work and has been given to Parkinsons patients. He said it has properties that should help my RLS. I am a bit nervous about it because from what I have read it can wind folks up a bit. SOme folks report that it reallly helps them concentrate. It also can cause loss of appetite. I am already down to 112 pounds and I look like a cancer patient (I am 5 ft 3). My family and friends are really worried about me. I spend 30 minutes last night trying to convince my husband that I am TRYING to eat, but I get full so quickly.

Neco
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Post by Neco »

I'm sorry you're having such a rough time.. Are you still spreading out your methadone? How much total are you taking a day?

I feel like I have also been having a rough time lately, even when I take my extra 5mg at night.. I am wondering if it is because it has been so cold lately, as I think my most difficult periods over the years have been in the summer or winter when weather changes in the extreme...

I hope the neurontin helps you out a little.. The provigil sounds like some kind of stimulant, so I don't know how it will effect the RLS, but if it doesn't make it worse it should at least make it easier to stay awake and less groggy from the Neurontin..

It sounds like you've had trouble keeping your weight up for a while, was this going on before you started Methadone too? Have you asked a doctor if it could be anything serious?

Hang in there..

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Helen518
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Post by Helen518 »

So you are having symptoms despite taking the methadone, too? When you have difficult periods despite the methadone, how many days do they last? Do you eventually reach a level of comfort again? Enough to relax and enjoy yourself? What do you do to feel better? I forget - how much do you take per day? is it 15 mg with an occaisional extra 5mg? I am taking 5 mg at 5pm and at 5 am took 5 mg (since last friday) but it didn't help so I dropped back to 2.5 mg at 5am this morning. So, I was at 10 mg/day for 7 days but today went back to 7.5 mg.

The psychiatrist wants me to wean off the methadone completely. I'm not sure Im ready to give up on it yet.

I am seeing the neurologist next Wednesday. I'm wondering if I need to get a new one. How long does it take your neurologist to get back to you when you call him? Mine takes about 3 days, unless I sound very desperate in my voice message, then he might call me back within 24 hours.

Do you really think it coudl be the cold weather making symptoms worse? In WI, you have REAL cold, not like the wimpy cold we get in the mid-atlantic region. My first summer with RLS (2007) I was convinced the heat and humidity made it worse. When fall 07 came, it seemed like the cool made it much better. But this past summer I didn't experience worsening with heat/humidity.

I've been losing weight since september when I stopped the requip and the remeron. It seems to have got worse since I stopped the benzos and then when I stopped the neurontin. Neurontin increases the appetite, right? My psych seems to think it is stress related. My husband suspects that the medications are causing me to lose weight. Today I am starting a concerted effort to increase my calorie intake (about 1000 so far today - not bad!). The trick is doing it without taking in too much sugar (I suspect the sugar makes my RLS worse). I guess I'll call the GP if I don't starting gaining weight soon. I've been in her office every week it seems like - I had a respiratory infection, pink eye, and now I've developed a lumbar disc problem. She did say that she wanted to know if I lost any more weight. I wonder if it is related to taking nexium.

Neco
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Post by Neco »

Wow..you have a full plate..

I take between 15 and 20mg a day, yes.. I don't suffer prolonged periods of suffering unless I have been undermedicated. To be honest I don't think you need to ween off the methadone - I think you need an INCREASE. It sounds like you never really took more than 10mg per day. Which while may be fine for some people, just doesn't cut it for others.

Ann takes 20mg I think and is still looking at another increase in her future. It really is an ongoing battle.. Because of the IvF I know your choices are limited.. But you might want to concentrate on two meds like you are now with the Methadone + Neurontin.

I am not at all surprised at your weight loss after quitting Remeron and then an benzo. I think Ann or someone else lost a ton of weight when they quit their benzo too. When I was on Remeron I ballooned up to over 200lbs even to the point where I was worried about it. I was eating entire plates of food which is something I never did before.

I'm stable around 200 now, give or take.. But when I was actually working for a living I was more stable at 160 - 170. I can't even fit my 36 waist clothes anymore, and pretty much have kissed my 34's goodbye.


When I experience extra symptoms, I do my best to deal with it, to be honest. Because I stagger my doses I get good coverage into the evening. I can usually sleep through the night with no problems, even when I am experiencing symptoms, knowing that in the morning when I get up I will have a fresh supply waiting for me on the counter.

I think you should try 5mg 3x a day or something, or 10 in the morning and 10 in the evening. It seemed like the doctor who prescribed it to you was willing to increase your dose - if you haven't told him I think you need to. If your symptoms are NOT controlled by an increase of 5 - 10mg then I agree something is wrong and you need to be checked out thuroughly. Otherwise I think its just a matter of finding the right dose.

Maybe you should e-mail doctor B. Tell him about your situation, and ask if he would reccomend trying a bigger increase, to your physician.


I don't have a neuro. I belong to the working poor, if not the destitute class, lol.. Everything I do for my RLS is done through my GP who has been very kind to me over the years.

If you want colories... Load up on sugar free junk food, that has a good deal of fat content. Cookies, chips. Or find a good nutrition chart and look for things you can buy. Peanut butter is high in both fat and protein. Eat a PBJ sandwhich once or twice a day, it may help your energy level too. Pizza is full of fat, as is red meat like ground chuck, etc.

I think the peanut butter, and red meat will be good for your diet. They all have high protein, a decent amount of fat, and practically no sugar. Red meat also has iron, so if you get any benefit from iron over time that might help. The protein will keep you going between meals and keep your energy and metabolism up, I think. The key is to find a good balance between fat and protein. When you eat just fat and sugar, your body burns through the carbs, but when you eat filling foods with good protein content, it keeps you full and you get better energy reserves. Which in turn might make you more active, and you might eat more.

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Helen518
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Post by Helen518 »

As always, thanks for the feedback and support! You are lucky your GP is so helpful - that is great to have a good relationship with your doc. I like my GP pretty well, too, and she did not freak out when I told her I was going to take methadone.

Yes, I never took more than 10 mg/day. What I don't understand is why 5 mg worked so well for a week or so, then stopped working, then 7.5 worked for a week, then stopped working. Then the increase to 10 didn't help at all! Why is that? I believe I got anxious becuase of the increase in symptoms, and not the other way around.

OK, I'm going to hang in there with the methadone and neurontin and talk to the neuro on Wednesday. I'm going to join the YMCA again and do the treadmill and do my walking meditation. I just ordered a biofeedback device that I tried last summer which really helps my anxiety - hubby said I could have it for my birthday which is coming up.

I feel better knowing I can take the neurontin for anxiety. I hate it when I feel like there is nothing I can do and I am just trapped. I would rather take some Klonopin, but I guess I"m not ready to go down that road again yet.

I think my psych feels frustrated with the neuro that he doesn't respond quickly enough when I am suffering. I think he really wants to help but seems to think he can solve the problem by searching the internet and only just discovered the practioner section of rls.org last night while I was in his office! It's funny, but I feel sort of disloyal to the psych when I go with the neuro's advice instead of the psych's advice. He has been so great to me, but he just doesn't have the expertise that the neuro has, while the neuro has lots of expertise but is not very patient-centered.

Everyone, Zach, Ann, Polar Bear, Susan . . . thanks for your support - others have said it but I'll say it again, it would be so much harder if you all weren't out there, just a click away, understanding how it feels and offering your insight, sympathy, and advice.

SquirmingSusan
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Post by SquirmingSusan »

Hi Helen,

Wow, you really are having a time of it lately. I do hope you can get some relief soon.

It sounds like your psych needs to talk to your neurologist, and vice versa. It's hard when you have one doctor going in one direction, and another questioning it.

Some people do take clonazepam with methadone; my pain doctor prescribed it for me when I first started taking methadone, but it made me way too sleepy the next day, but not sleepy enough at night when I took it. But I certainly understand not wanting to go through a taper if you do the IVF.

Nexium? It's a heartburn medicine and shouldn't cause weight loss.

Provigil - I take it (200 mg.), and it does help me stay awake during the day. But it seems to make my RLS slightly worse. I know of no reason why it should help with RLS itself - it doesn't cause an increase in dopamine like the amphetamines. It also doesn't make me wound up at all. It's a nice relaxed kind of wakefulness. I could stand being a bit more wound up most days; I might get something done. And it does suppress the appetite a bit. I wish it suppressed mine more. It doesn't seem like a great choice for you, unless you're having problems staying awake during the day.

Maybe you're just not taking enough methadone yet? It sounds like you have a fast metabolism, so maybe you're just burning through it. I would give it a chance with another dose increase or two.

Best wishes.
Susan

Neco
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Post by Neco »

Susan makes a good point.. If you are having weight issues and have a fast metabolis, etc.. These could all be affecting you and how your body goes through your methadone..

In this case, taking 5mg morning, noon, and evening/night might help you better.. It may even take a little more than 5mg, at 3x a time.. In the end you won't know until you try. We all do deal with tolerance to our doses, but I have been on the same dose for half a year now and only recently got my increase in the last 2 months.. I think once you find a stable dose, where it stops needing more, it might get better.

If the drug is simply wearing off faster, because of your metabolism, then you are going to need doses more often. Also you have to remember, Methadone is NOT a controlled release medication. The instructions for dosing on pharmacy bottles read 5 - 10mg every 4 - 6 hours. (I would get unopened 100ct bottles from time to time).

You may need to try the 5mg 3x a day and see if you get better control.. Then tweak it with a little extra per dose when you see a pattern of needing it there. If you want to explore controlled release medications, then Oxycontin or MS Contin might be better choices.. I don't know about MS Contin, but Oxycontin is extremely expensive if your insurance doesn't cover it, and the co-pay still may be high.. It's around $400/mo out of pocket I think. Depends on your prescription, and mg per pill, how many pills, etc.

I am not sure of Oxycodone or Morphine are safe for an entire pregnancy though, so you have to keep that in mind too.

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Helen518
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Post by Helen518 »

I never thought about my fast metabolism causing me to burn off the methadone quicker. That makes sense. Maybe the Neuro will give me an increase on Wednesday.

I am interested to hear about your provigil experience, Susan. It makes you relaxed, yet it makes your RLS slightly worse? for me, anything that makes the RLS worse makes me anxious!! Provigil sounded to me like it could possibly make RLS worse. He has encouraged me to increase the dose over the weekend but I don't think I will. He is basing this on a hunch . . . something do do with the fact that it works in the opposite way that antihistamines work . . . and antihistamines make RLS worse, so he thinks this will make it better . . . I can't wait to hear what the Neuro has to say about it.

I AM having trouble staying awake during my afternoon commute. It seems to be worse with the increase in methadone. My drive is a boring straight shot on a very fast highway and I've been doing head-bobs. So, I take the slower road that runs parallel to it, so I have to pay more attention to lights, etc.-this is helping. However, about 10 days ago when I was in the worst of the sinus infection I fell asleep at the wheel at about 20 mph near my home and hit a curb and blew out my tire and alignment. I think this was due to a combination of lack of sleep due to congestion and methadone. Thank goodness no one was hurt and I did not hit anyone else.

Neco
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Post by Neco »

Helen, I can sympathize with your driving.. I generally do not take a significant amount of medication when I know I am going to be driving within the next few hours...

Are you taking your meds close to the time that you are driving? If not, I am not really sure this could be the cause.. However I could also be wrong. I know people complaing about drowsiness during the day with methadone, but I have no idea when their last dose is, how long the drowsiness lasts, etc..

I would say if you don't think the provigil is making anything worse, then the methadone may be significantly masking the symptoms, if it is increasing them at all. So give it a chance and don't stop because you THINK something bad might happen.. Take it and be positive, don't think it will make it worse or placebo will set in and then it will be true.. If the provigil helps you stay awake, but you have to compensate with a little extra methadone overall, I don't think thats a bad trade off..

Also, Neurontin can make you really tired as well, when taken in significant amounts. People complain about next-day sleepiness also. So if your blow out incident happened while you were on Neurontin also, that could be a contributor.

This is the unfortunate part about taking so many medications.. They may be helping a lot, but finding out which are truly necesarry and what you can't take at certain times, or what can be cut out totally, can be a real trial an error process..

Consider taking something like the 5hour energy boost when you are driving. I know it is a little expensive, but its better than Red bull or other drinks because those make you all jittery and crap.. 5hour can do it too IF you have not been eating enough lately, etc.. I had one experience with that one morning, but eating an apple quickly settled my body down.

Just hang in there and do what you can to make yourself comfortable.. I know its bad form to do this, but I would say don't wait for the Neuro and try out the 5mg x3 per day while you're waiting to hear back.. See if it helps, and keep up with the provigil.. If anything it will help during the wait, and if he OK's the increase continue as normal, otherwise you can go back to what you were doing before, and try to work out your doses with your maximum daily amount.

Neco
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Post by Neco »

Also I had an idea.. don't know if it will help.. I was prescribed Oxazepam for a while, to help try to control my IBS. It is an anti-anxiety medication, I'm not sure if it is a benzo or related to benzos or not.. However if you want to try to control your anxiety, ask your doc(s) if Oxazepam is safe for pregnancy, or if it can be safe for a while and then tapered before you give birth. It didn't do much for my IBS, but I did get a minor benefit from the anti-anxiety effects.. Originally I was given Librax, which is a weak benzo or related to benzo's in some way, I'm not sure if that is gonna help at all but it did have calming effects as well, although if you try and take too much you'll get severe cottonmouth. No idea if its safe for pregnancy either, but I'm guessing not..

Still, I think you should ask about the Oxazepam or another anti-anxiety med that is safe for you with the methadone and the pregnancy.. And its not that these drugs don't mix with methadone period, its that when overindulged, or started together they can cause severe problems with breathing. Once you are tolerant to the Methadone (and I would think by now you are) I don't think taking a small amount of a benzo under doctor supervision, would be much of a problem.

However I could be wrong, or understating the issue.. But it wouldn't hurt to check with your doctors.. Also, if one is trying to push you off a medicine you feel is helping, but just needs some tweaking, I.E the Methadone.. Don't be afraid to push back. Just tell them, "I know you care but I need this medication to maintain my quality of life, and it is one of the only few that are safe for me since I am trying to get pregnant, please respect that".

Your psych in particular should understand this if you say it to them, and if they don't, then I don't know.. But I would not take it kindly if my counselor tried to push me off a drug that is helping or tried to solely control my treatment.. Having one doctor manage your meds is a good idea, however sometimes that just isn't possible.. As long as all your doctors are aware of everything you are taking, just make it clear you want them to leave you alone about medication they DON'T prescribe to you.. Anytime you get a new script, just have a list ready to give the prescribing doctor, with everything you are currently taking.

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Helen518
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Post by Helen518 »

Surprise! The Neuro called me back at 6pm tonight! Of course, he always calls when I am in the check out line at the supermarket or driving home after picking up my son from day care. I was putting my cart back in teh supermarket parking lot!

Of course my thought were not collected. I am so nervous when he calls me- especially when I don't expect to hear from him - I make such an effor to be polite that I forget to say what I want to say!! I told him what the Psych said/did this week. He said that provigil is likely to cause augmentation and not likley to help my RLS. I definitely think that my legs were worse today. I don't think I'm going to take it anymore.

He told me that his methadone patients are typically on 10-20 mg. I asked if I should increase the methadone. I had told him that despite my symptoms, the methadone make sme so drowsy that I do fall asleep at night and that I've had a little trouble during my afternoon commute with drowsiness (this is about 1/5 hours before my evening dose). He said he'd rather increase the neurontin than the methadone today, but we could talk about it on my TUesday appointment.

Also, my job is usually pretty insane in February. He was concerned about the pregnancy safeness of neurontin, but I told him we'd be putting off the IVF unti March.

Well, as soon as I got off the phone with him, I was like, WHY DIDN"T I SAY I WANTED AN INCREASE???!!! I'm definitely going to ask for the increase on Tuesday. If I can get the increase, then I don't think I'll need tne neurontin.

Strangely, Neurontin no longer makes me very sleepy. When I first took it in Nov and Dec, it made me so sleepy I fell asleep face down on the rug in the family room! Now it doesn't have such a dramatic effect.

Guess what? In DE, the prescription has to be filled within 7 day sof the date on teh prescription, otherwise they have to call and verify it with teh doc. I tried to get my refill today which I received in the mail yesterday, and they had to call the doc at 4:45, or I was going to have to take the script to PA!! I can't believe they got hold of him. I can pick it up tonight.

I have to re-read your posts about the med suggestions you made and write them down and talk to the doc about them. Thanks for taking the time to write them out! I'll probably write a nother reply later. THANKS!

Neco
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Post by Neco »

It sounds like you did ask him for an increase in your Methadone though, not directly... So I think he got the point, as he said you can talk about it Tuesday.

Just be sure to have your thoughts written down and organized and you will do fine.. Neurontins sleepiness does wear off for most people after a while so that's not unusual. I think stopping the provigil is likely going to be a good call, as you don't want augmentation or anything..

When you discuss the Methadone, be sure and bring up the fact that you have problems with it becoming less effective after more than a week. I would ask about the possibility of smaller doses 3x a day because I think that might really help you..

And let him know, that ultimately if you decide to scrap the IVF altogether and the Methadone is still not helping consisently, you would like to know about controlled release medications. Again stressing the point to him that the meds seem to work great, but your body just seems to filter them out too fast compared to what the rest of us have reported about how long we get relief from it. At least 5mg, 3x a day - OR a controlled release medication have GOT to be one of the answers here.

I don't have a fancy M.D or PhD after my name, but I feel pretty strongly it's got to be one of the two, and lord knows I've unfortunately had tons of experience with opiates over the past few years.

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