Questions for anyone who's taken Methadone

[rikku9]

I stopped taking Ropinerole (requip) 5 weeks ago and was on 200 mg of Tradamadol which worked somewhat. I've just switched over to 5 mg of methadone but I got no sleep at all tonight despite taking the pill 3 hours earlier than my bedtime. Is this normal for the first dose? Does methadone need time to build up in my system to start working or do I maybe need to increase my dose? If it needs time to build up in my system, how many days until it starts working?

For those that have used Methadone for RLS, what dose were you on and how well did it work? Did it take a while for the methadone to be effective?

I've already had so many sleepless nights these past few weeks that I don't know how many more I can do while figuring out my dose for methadone

[stjohnh]

Yes methadone has a very long Half-Life and takes a while to get working. This is a big problem for those trying to get off methadone, it may take some people a month to get off it. It is also one of the reasons why is extremely important to not increase the dose without being very careful. I'm sure you've heard about the recent actions by the FDA to make prescribing opiates more difficult, because of the high death rate amongst prescription opioid users. The prescription opiate associated with the greatest number of deaths in the United States is methadone. Anyway, it's very important to not try to increase your dose of methadone too soon so that it doesn't accidentally build up in your system.

It takes a full week on a steady dose level until the level in your blood is stable.

One possible solution is to ask your doctor for a prescription for a short-acting opiate to use in addition to the methadone until the methadone dose gets worked out.

The methadone will likely take care of your jumpy legs, but there is a good likelihood that you will still have some insomnia that will require additional treatment (most commonly Med marijuana and/or gabapentin).

[ViewsAskew]

I needed 10 mg to work and it was effective immediately - I was augmented at the time. While it definitely builds up because of the long half life, you likely would have had at least some relief if this dose was enough - did it help some, just not enough to sleep? Holland has some great advice - give it a few days more. But if there is no relief at all, talk to your doctor. If there is some relief, you may want to increase only in 2.5 mg increments even if the doctor says to go to 10 mg. The most important thing - as I understand it from Dr. Buchfuhrer - is that when you use opioids, do not strive for complete coverage, rather 90%. That will go a long way to prevent tolerance. And, tolerance is not a good thing!

[rikku9]

Thanks! I appreciate the answers. I think it did help some since the RLS wasn't as bad as it should have been if I was completely unmedicated, but it was not enough to allow me to sleep at all the entire night.

So it seems like I should try just taking one pill again (5mg) tonight and hopefully it should work better tonight. If not and I have to take the extra 2.5 mg, would that kick in within an hour? It seems like that first dose took a bit longer than an hour to kick in

[ViewsAskew]

Have you used other opioids before? If you have, it's likely safe to go up, but do check with your doctor. If you have not, do be careful!

[rikku9]

Thanks. Besides the 4 weeks of Tramadol I've never taken opiates before. I will try to reach the doctor today to see what I should do tonight.

I was hoping that once I've been of DA for a while I'd be able to alternate between a DA and opiate like ViewsAskew in order to prevent augmentation and tolerance. I'm wondering now if I will be able to do that if I need to have certain levels of the methadone in my bloodstream already for it to work.

[debbluebird]

I ended up with 5 mg in the early evening, then 5 mg around 11 pm and sometimes another 5 mg when I woke up around 2 or 3 am Also, when I first increased my dose, I terrible nausea for about 2 months. It finally went away. I think I increased my dose too quickly. I don't know. I took it for five years. But now, sad to say, I have had to stop Methadone, due to central sleep apnea, otherwise, I probably would still be taking it. It worked very well for me.
Good luck.

[ViewsAskew]

You are basically opioid naive, so definitely a good thing to go slowly.

I alternated with methadone for years. I did find that the first day was a bit rough. But, it was worth it. Day 1 taking it, to me, was about 75% coverage. Day 2 was 85-90. That said, I do have symptoms for about 18 hours a day, so I was covering day and night. That may have impacted why it worked.

There are other opioids that would work well if you find methadone isn't as good for you - many are much shorter acting. One of the reasons I really like methadone was that initially I only had to dose once a day, even with symptoms occurring most of the day. Only after tolerance set in did I need to split my doses between 2-3 doses.

[rikku9]

I can't express my gratitude to everyone on this board, thank you so much for taking the time to help and reply, it means a lot to me. The last month has been grim and the reality of how bad my RLS has gotten over the years has really been getting me down. The fact that I will be struggling with this the rest of my life and the fact that the quality of my life depends on having a doctor who actually understands the disease (which is so unbelievably rare) fills me with fear and dread for the future. Knowing that this board exists and that you are all out there and understand the struggle and are willing to take the time to share advice and lend an ear has given me so much more hope. Thank you all so much.

The doctor told me to take 2 of the 5mg methadone pills tonight so I'm hoping I'll get some rest. I'm wondering if maybe I need 10 mg right now because maybe I'm having Tramadol withdrawals since I took 200mg of it daily for about a month now. Or maybe my RLS has just gotten that bad. I guess for now I just can't know that.

[ViewsAskew]

We've all been there - and for many of us, those who came before us here in very real ways saved our lives...or so it felt .

Tramadol is the only non-dopamine agonist known to cause (albeit very rarely) augmentation. I have to wonder...it may not be augmentation, but rather opioid-like withdrawals with the weird sensations that are very RLS-like. So, that is possible.

Here's hoping you are happily sleeping and won't see this until morning.

[badnights]

the reality of how bad my RLS has gotten over the years has really been getting me down. The fact that I will be struggling with this the rest of my life and the fact that the quality of my life depends on having a doctor who actually understands the disease (which is so unbelievably rare) fills me with fear and dread for the future.

That is exactly where I was a few years ago. I wish I could tell you how I got away from that fear, but I don't know for sure, probably a combination of things. Plenty of others have felt that fear, too, and no longer do, so you can look forward to being without it at some point not too distant.

It's not that our circumstances change; it's that our attitudes change. That makes all the difference. When the fear is gone and hope has taken its place, you start feeling in control of your life again. There is every reason to expect that to happen to you, even though you don't know why it would.

[Polar Bear]

rikku9 - knowledge is power, it gives us the ability to discuss treatment with our doctor, to be able to back up discussions with reliable informative brochures from the Foundation Web Site. As we ourselves learn and our confidence in our knowledge gains, I believe this helps ease our fear.
I still have fears of finding myself with an uncooperative doctor but in the meantime my current GP is amenable.

Being as informed as possible definitely helps our attitude change towards the positive.
I wish you a good night.

[Rustsmith]

rikku9 - I was in a very similar position to yours just a few months ago. I had been augmenting on either Neupro or pramipexole for over a year and had been averaging just 3.5 to 4 hrs of sleep during that time with marginal control of my RLS. My doctor told me to start with 5mg methadone and that I should increase it to 10mg once I felt that I had stabilized at 5. I stayed at 5 for about 10 days and then increased it to 10mg/day (morning and night). After about a week at 10 I realized one morning that my thoughts were in a fog and the fog was not going away, so I dropped back to 5, which my doctor agreed was appropriate as long as my RLS symptoms were stable.

However, unlike you I was also taking gabapentin during all of this to help manage my migraines. The gabapentin had the side benefit of helping me fall asleep shortly after taking it, which is something that none of the classical sleep medications would do. In fact, my doctor is so concerned about my lack of proper sleep that her written instructions were to use the methadone to control my urge-to-move symptoms and to use a combination of gabapentin and medical marijuana (legal where I live) with a target of getting at least 7.5 hrs of sleep each night. It has been 3 months since I started with the methadone and it has brought my RLS under control. And the combination of sleep inducing meds has me sleeping now for 6.5 to 7 hrs/night. That isn't quite to her target of 7.5 hrs, but hopefully is close enough that she lets me stay with this combination when I see her this coming week.

So, my suggestion is that if you are not doing any better with your sleep by now, talk with you doctor to see if he/she would be willing to let you try gabapentin because it seems to be the prescription medication that helps those of us with RLS get to sleep.

[Rlstader]

Rikku9: I could have written every word you did.

"I can't express my gratitude to everyone on this board, thank you so much for taking the time to help and reply, it means a lot to me. The last month has been grim and the reality of how bad my RLS has gotten over the years has really been getting me down. The fact that I will be struggling with this the rest of my life and the fact that the quality of my life depends on having a doctor who actually understands the disease (which is so unbelievably rare) fills me with fear and dread for the future."

I am incredibly fearful for the future as well. Opioids are all that work for me and knowing the pressure on doctors not to prescribe it I think makes it a pretty realistic fear.

But this board has helped me a lot too and I thank everyone for that too.

[Rustsmith]

I completely agree with you Rlsader. Of all the issues and potential complications involved with taking opioid, the only thing that bothers me is the potential that the feds will take away my methadone. Since I cannot go back to using a non-opioid treatment, the idea of having to exist with severe, essentially untreated RLS is my worst nightmare and borders on terror.

As a result, I have been doing everything that I can to work to push back, including talking with the Foundation staff on multiple occasions encouraging them to involve us in their efforts. But they have to walk a thin line since their status as a charity prevents them from becoming involved in any form of political advocacy activity.