Newbie and long, need advice please methadone

kityhowl · Post by **kityhowl** » Fri Jun 19, 2009 10:58 pm

New to the boards, old to RLS, new to methadone..

Hi Thanks everyone before hand

I have been on this message board for the last few days trying to figure out what just happened to me.

First off I have had RLS since I can remember (age 50)…I remember as a child knowing that the third leg jerk would mean I was relaxing enough to go to sleep. Ah yes….growing pains….not!

I had a sleep study done many moons ago and started out on sinement. I’m not sure when but added something more…not sure..
Then on to Mirapex gradually up to 3.0 with temazepam 30 and xanax .25 TID as needed.

That went on for about twelve years. With bits and pieces of episodes of RLS still shinning through.

This past year I have been unbearable to work for, I was miserable crying, insomnia, RLS, gritting my teeth, depression, almost bi-polar…and shopping…..on my goodness I was shopping..

It was time to go back to the doctor for refills and BOOM..I let loose on what was going on. Needless to say….I needed a change.

I was ready to quit my job etc.

That’s been about six weeks ago. (I’m on leave)

In the past six weeks I have been on sinement and neurotin he didn’t want to change the temazepam until I found something different for the mirapex.

I was sleepless and miserable and trying to get off mirapex, Bless my Husbands heart for putting up with me still. Awake awake awake…miserable miserable miserable….

After about four weeks of nothing working the doctor called in a prescription for methadone. Add 5 to 10 mg of Methadone with the Temazepam
I freaked!! HUH?

I said NO!
I was going to kick this and do it naturally ..hahahaha…

Long story short…I’m taking 10mg methadone nothing else.
I’m terrified. I don’t want on this drug. But….. I’m sleeping, kind of , My RLS has subsided, my legs feel like lead, but I slept for two days straight almost, I can ride in a car without my legs going crazy.

I feel frustrated that it has come to this and I really think (after reading) I should have been given options to try other opiates instead of going straight to Methadone?

I go see the Neuro on Tuesday and I’m still all over the place with this drug, I can’t make it thru a day without a nap. I wake at night but I’m not taking temazepam because I’m afraid to. :cry:

(ok so now I'm coming off two drugs)
I don’t know if this is being used to get me off mirapex? Do they give Methadone for that?

I have so many unanswered questions but I don’t want to go into his office like a bull in a china cabinet either.

I don’t think I’ll be able to return to work anytime soon while I’m like this and with methadone I don’t know if the company will even let me.

The turmoil…is it me or is this normal? :?:

Am I stuck?

Suggestions?....help please

SquirmingSusan · Post by **SquirmingSusan** » Fri Jun 19, 2009 11:31 pm

As you've probably read around here, methadone is a wonderful and effective drug for RLS. But your doctor started you on a pretty high dose given that you haven't been taking opioids. Experienced pain doctors seem to start people on half of a .5 mg methadone, and then work up the dose slowly from there. This is to avoid excess sedation and breathing problems. It seems pretty drastic that your doctor didn't have you try Vicodin or Tramadol or something a bit milder to help you get off the Mirapex.

Anyway, if it were me, and I'm NOT a doctor, I would cut back on the methadone. I'd cut down to, at most, 5mg. and possibly half that. See how that works for you. Then slowly increase the dose until you get relief. Then stay at that dose, and not increase it unless you're not getting adequate relief. Keep in mind that methadone has a half life of about 30 hours, and if you take it a couple times a day, it builds up in your system.

BTW, it is almost impossible to get off Mirapex "naturally." Most people need to take an opioid, like Vicodin or Percocet for a while until the increased RLS symptoms settle down.

Neco · Post by **Neco** » Sat Jun 20, 2009 3:10 am

Hmm..

I think first we should try and address what appears to be, some kind of fear of Methadone.. Are you afraid of this medication for some reason? Or do you think that Methadone was only given to "drug addicts"?

If so, you shouldn't be worried.. Methadone is a legitimate pain killer, used for pain long before the maintenance programs of the 70's got started. You company can't keep you from working because you are Methadone, and for that sole reason (if they EVER try that threaten to get a lawyer and sue for descrimination) - but if you are afraid they won't let you back because of your issues with daytime sleepiness, etc. Then yes you have to do something to cut back your dose.

Your doctor was absolutely stupid to start you on 5 - 10mg, with NO previous opiate exposure, and hes lucky nothing bad happened, but don't let that scare you too much.

How long have you been on the Methadone?
Is Methadone controlling your RLS right now? If the answer is yes, then start reducing your intake. Start by trying to take a half a pill (.5mg) and see how long that lasts you.. If after 2 hours you still feel your RLS enough to bother you, take the other half, and again note how long it lasts.

Unfortunately some people just suffer from excessive tiredness when taking Methadone, and their only option is to take a really low dose and use it in combination with a weaker opiate, like Vicodin, or Oxycodone.

I don't know why your doctor jumped straight to Methadone, but he really shouldn't have.. Maybe he had misguided concerns about addiction and figured giving you Methadone would avoid all that, instead of giving you other painkillers? I don't know. But the best thing you can do right now is to stop taking SO MUCH! Just because your doctor says to take 5 - 10mg does not mean you have to take that much.

It's not against the law to take less, unlike taking more. So always start out with less. If you've been on Methadone a while, it may take you some time to adjust as you lower your dose. But try to start by taking 1/2 a pill at a time and spreading it throughout the day if you need to.

Unfortunately we can't tell you why your doctor gave you Methadone for quitting the Mirapex, as opposed to Vicodin or Oxycodone. All are suitable drugs for this period of time when quitting the Mirapex will be super hard because of the increased RLS.. However I encourage you to talk to your doctor about what his long term plan is?

Does he intend for you to stay on the Methadone or some other opiate? If not, and you find that opiates actually work well for you, question him what his goals are, because it doesn't make sense to give you a medication that works (opiates) and then take it away for something else that isn't guaranteed?? MS Contin or Oxycontin are controlled release medications that are released slowly over a number of hours. They are GREAT medications for managing RLS, especially if its 24/7 "Refractory RLS" that doesn't respond to Mirapex & Requip.

If you haven't read it before, please click the link in my signature, for the Mayo Clinic Algorithm. It may answer a lot of your questions, as well as give you additional information you might need about whats going on with your meds and where you are heading. They discuss the different types of RLS and the medications to treat them (including the practice of quitting Requip / Mirapex and giving an opiate, and switching to Methadone and other strong opiates for management of RLS).

If your doctor has never seen it, you can also print out a copy and give it to him. Though he seems to be pretty educated in terms of what treatments he is open to giving you (and believe me a doctor who will prescribe Methadone is a rarity).

I hope everything works out for you.

kityhowl · Post by **kityhowl** » Sat Jun 20, 2009 2:42 pm

Yes, the sigma of the drug itself scares me! I read some and then relax then I read some and get terrified!

My days and nights are kind of all mixing together.
I picked up the prescription on the 10th. After doing some reading I was afraid to take temazepam with it so I tried 5mg alone. That was awful. So I called the Doc and they said try it again, ugh…so I took 5mg with 15mg temezapam. That just made me up and dopier. So I tried a few days without anything, thinking I could kick this. The RLS was out of control and I was almost climbing the walls.

I kept reading and calling the Neuro…his nurse called back and told me to take more….
I finally on the 15th took 5mg methadone and 30 mg temazepam and slept most of the night and day telling my husband to check on me because I was afraid of going into a coma. On the 16th I did the same and tried to sleep with my husband (been on the couch since I disturb him and he has to work) I woke him up kicking and went back on the couch, sigh… Not sure what I did on the 17th.
The 18th I took 10mg of methadone thinking, I didn’t get rid of the RLS if I was still kicking but with 10mg I was afraid to take temazepam. I was up and down most of the night feeling rather strange.

Last night I just took 15mg of temazepam trying to get part of the methadone out of my system and I was up a few times but to drugged up to make any since of what I was doing. I was kicking most of the night.

Today I will take 2.5 of methadone and 15mg of temazepam and see how that does. I will try and hold off until around 7pm but I have a two hour car ride.

This is all so absorbing, it’s like I can’t think about anything else. Shouldn’t this be done in a controlled setting?
I feel like I don’t know what I’m doing and yet my fate is left up to me?
Thank you for your suggestions

Just tryin to get by

Neco · Post by **Neco** » Sat Jun 20, 2009 9:33 pm

Ok, slow down!

First and foremost.. When you are AWAKE during the day.. Was 5mg sufficient to relieve your urges to move and take away any uncomfortable or painful sensations you have accompanying those urges?

Kicking your your sleep IS NOT RLS! Don't take more because you are kicking in your sleep, only take more if your symptoms are not being controlled.

When you are alseep and your partner is complaining that you are kicking, that is called Periodic Limb Movement Disorder (PLMD) and is a completely separate condition from RLS - however many people with RLS also have PLMD, even though neither condition causes the other.

The treatment for PLMD is usually benzo's, such as Klonopin (clonazepam) and I think Temazepam is also a benzo, however I have little knowledge about Temazepam.

What you need to do is to separate the two in your mind.. Don't worry about how much you are kicking in terms of how much Methadone you are taking.. Because no matter how much you take it won't stop the kicking. So try to get back with as little Methadone during the day as possible.

Also... what is the temazepam specifically prescribed for? Another condition, or the RLS as well? Because if both are being prescribed for RLS I think that may be overkill. Methadone by itself should be able to control your RLS on a relatively low dose, without the need for Temazepam ontop of it. If the temazepam is for another condition (The kicking/PLMD?) Then take what you are prescribed, as long as you don't feel too "dopey" and let your doctor know whether the temazepam is helping or not, and if its not helping then ask him about another medication that might help, that won't make you feel as doped up.

Also.. what are you reading about Methadone that is making you so scared? If you have questions, let us know as several of us here have been on Methadone for a long time and can probably give you good answers and reassurance. The controlled setting is your doctors office and the guidelines he sets forth when prescribing the medication. That's all you can really go by. However the idea is to not exceed those guidelines, not necesarrily to always take as much as you are being told to, IF you can get by with less medication.

Post by **ViewsAskew** » Sat Jun 20, 2009 11:33 pm

Kityhowl, now for perspective number three

I guess I'd start by telling you I totally know how MISERABLE it is to stop the Mirapex when you've augmented like that. Just miserable. And, I'd also say that I don't think that when I was in that situation that I was making good decisions - by good, I mean that my mind was so focused on the RLS and the craziness, that I didn't think things through and was maybe a bit hysterical (OK, a lot hysterical).

In the situation you were in, I'd almost be that other neuros would have done what your neuro did. But, most importantly, there is no perfect path. He was trying to get the maximum benefit to you as quickly as possible. Could you have tried something else? Sure. Would it have worked as well (stopping the RLS within a few days is a major feat when you are that augmented)? We don't know.

Also, I think you're lucky. You have a neuro who seems to be up on what to do with major augmentation. While some, including you, may feel he jumped too quickly, he did jump! Many of us struggle to get anyone to help us and find neuros who won't do anything by give you more Mirapex, Requip, or Neurontin.

Just want to make one clarification, too: your kicking could be RLS. You said kicking, but you could have meant that you were moving around to contain the RLS. When my RLS is bad (as it has been for the last two weeks, even though I'm highly medicated), the RLS DOES happen while I am sleeping. It starts when I am asleep and wakes me up. I find myself moving while asleep and trying to to come to consciousness. But, as Zach said, it could also be PLMs. These are not well controlled by Methadone usually.

It seems to me that the remaining issues are:

Do you want to take this drug or try something else? It has done its job of helping you get off of the Mirapex hell. Good for it. Now, given it did it's job, you can ask the next question:

Do you need something this strong to control the RLS? The first question doesn't matter much if something weaker won't control the RLS. But, the third question has to be resolved first....

How long might might you need to take this before your RLS is stable? While the RLS is calmed down while taking this drug right now, the augmented state of RLS may still be here. It can take a few weeks before the RLS stabilizes. If Methadone is containing it now, it's possible that a weaker opioid would not right now, but it might later. Right now, getting sleep for a few weeks is a priority. Get calm. Get to the point you can think clearly. (I'm making an assumption - forgive me if it's not correct - this was how I was, you may not be).

When the RLS is stable, you can answer the second question by trying other drugs. If something else works, great. If not, the first question is moot, unfortunately.

And, when things are calmer and the RLS is under control, you can also make sure you have a ferritin test. Very important if it hasn't been done.

Of course, this is just my perspective for what it's worth.

(edited for spelling error)

kityhowl · Post by **kityhowl** » Sun Jun 21, 2009 3:49 am

You’re so right I’m not thinking clearly, I’m hysterical

I feel dopey when I don’t feel dopey I’m crying and angry. I hurt all over and I wanna feel “normal”.

I become afraid when night falls because I know it’s gonna be tough. I can sleep during the day (sometimes) but at night I’m up agitated or drugged and prowling.

It seems to me that I’m getting about three or four hours per day that I’m ok and the rest are null and void. Or I’m drugged.

I’m a mess and I know it….
I’m sorry

Post by **ViewsAskew** » Sun Jun 21, 2009 4:52 am

Oh, I hope you didn't think I meant that "you oughtta shape up" because my post was meant more as a "I totally have been there and it suuuuccccks!"

Is there anyone - your husband maybe - who can help you make some decisions? And, maybe be in charge of your medication right now? It's so easy to inadvertently make a mistake when we're this emotionally charged. I always think back to Heath Ledger at times when I get a bit emotionally crazy with the RLS and the side effects. ANY of us could have been in his shoes. So tired of being tired, so tired of everything being screwed up, just wanting a good night's sleep.....

Maybe you and hubby and neuro, and we'll be happy to help if we can, can come up with a list of what's important right now and try to find a way to get you there. You could decide on a course of action. Each night taking new things in new amounts....that is potentially a problem, I'd think.

I am so sorry you are feeling this badly. My heart goes out to you. This disease can certainly be difficult, can't it?

Johnny2 · Post by **Johnny2** » Mon Jun 22, 2009 3:52 am

Hello, sorry about the hell you are going through, I have been there with requip, I currently take oxycontin and a tiny dose of methadone to control
my symptoms, at a dose needed to control my symptoms methadone left me excessively sleepy during the day, my doctor lowered the methadone and added oxycontin. I also have plmd (periodic limb movement disorder) at one point it got so severe at night, the sudden jerks would bounce my wife right out of bed, after many trials and some help from this wonderful board, I figured out that it was caused by another med I was taking (paxil) which was a little strange because when I started taking paxil it actually helped my RLS, then after 2 months it quit helping but the PLMD did not get bad until 2 years later, there was no question when I dropped paxil it PLMs got much better. Another thought to help you fall asleep, you may try melatonin, it is over the counter, natural
(in vitamin aisle) it may help you sleep and it will NOT leave you groggy the next morning. our bodies produce and release melatonin at or near darkness, this is how our "body clock" is regulated, it is not a sedative but rather a substance that tells you body its time to sleep. Hang in there it takes a couple of weeks after stopping a DA (requip/mirapex)to get back to a "normal" level of RLS. If you are on an antidepressant you may talk with your doctor about trying a different med as they can exacerbate symptoms and get overlooked as a cause because it does not happen right away.

Sojourner · Post by **Sojourner** » Tue Jun 23, 2009 3:16 am

k, I cannot offer more in the way of rls advice as better heads than mine have offered so much in the way of solid information. My thought and wish to you and for you.... Be Gentle With Yourself, my friend.

M.