Started Methadone

[Midnightmarathon]

Hi, I’ve been meaning to write for many weeks now, but it just feels like I am on a roller coaster that I can’t seem to get off. In the past 2 months I have been put on continued disability due to the severity of the RLS/PLMS, lost my job due to this (and I am a single mom with 2 kids with disabilities), started a new treatment regime, diagnosed with diabetes, ended a 10 ½ year relationship, gone from 120 to 108lbs from all the stress -( I am 5”8 so this is not a good thing). I feel like I am one step away from either the looney bin or the grave.
But I also feel like maybe, just maybe, I am going to turn things around. This disease if a vicious demon that attempts to eat us alive but I see how many of you strong here who battle it with dignity, strength and education. I am battling many demons at once but you all give me inspiration and hope.
Here is my good news. I was able to get seen at John Hopkins. They called on a Monday, they had a cancelation that Wednesday, I was there! Not only was I able to get seen but the doctor was WONDERFUL. Compassionate. He actually Got it!!! He started me on Methadone. He told that this is a poorly understood disease, even by the medical community, that I would get funny looks from providers and pharmacist, but not to think twice, that I NEED this! WOW!!! What a breath of fresh air. My kid and I got up at 3:45 am and drove 12 hours round trip and it was worth every minute Route 95!!!
So how has it been working? Well, at first it was an absolute miracle, but now, after a few weeks, it is not working as well but I am still doing much better than before! I am on 5mg. I am also still on Gabapentin 600 mg. I can call them and increase the dose and I am very afraid based on some of what I have read so far – ie decreased pain sensitivity, increased chance of waking up during anesthesia; also, the probability (?) that I will need a higher and higher dose of this as time goes on? Really scary. I am 60. My father is 93. I don’t think I will ever live that long, I’m beginning to wonder if I will see 65, but still.
Once again, I am open to your wealth of knowledge and support. Thank you so much for getting me this far!

[Rustsmith]

That is fantastic that you were able to get in to see one of the doctors at Johns Hopkins. I completely understand your feelings about finding a doctor who really understands the issues that we face.

In my case, I have been on 5 mg methadone for seven months now. Like you, I was also taking gabapentin before and have continued it at 900mg. I mostly have good days/nights and will occasionally have a bad night (especially if I forget to take my methadone on time). I have seen where a number of the specialists have stated that the trick to not having to increase your dosages is to only take what is required for 90% control. That means that we need to accept a few bad nights to be able to keep it under control in the long run. In my case, thank goodness that very hot baths continue to calm my nighttime symptoms most of the time. I might only be getting one third of the sleep that I manage if the baths didn't work.

And don't worry too much about your weight, just be like me and enjoy the fact that you can eat more and can enjoy eating junk food without any guilt. FYI, I am 64, 5'10" and currently weigh 132, so my BMI is only a bit higher than yours. As for longevity, I completely understand. When I look back a few years to during the time before I was diagnosed and during the time that I was augmenting on DAs, I sometimes wonder how I managed not to kill myself in a car accident because I was so chronically sleep deprived. My episode earlier this summer when becoming near suicidal due to too much of a good thing (marijuana that was helping me get more sleep) also taught me how much I both need all of these meds and how much effort I have to give to make certain that I have just the right dose (not too much and not too little).

Finally, I really love your username. Part of the reason is because I am a competitive runner and am currently training for (yet another) marathon. One of the first questions I get from my running friends when they learn about my RLS is whether there is a connection. I assure them that the two are completely unrelated, which is mostly true.

[ViewsAskew]

A shining star event in the sea of misery that is RLS/WED. What a lovely thing to have had that cancellation and excellent doctor.

As someone who was at one point in a similar place regarding my medication, methadone was truly a godsend to me. Here's what I wish I'd known then - hopefully none of this is new to you, but in case, here goes.

1. keep the dose as low as you can as long as you can. So, up the gabapentin if you need or see about adding something else.

2. don't shoot for 100% coverage from the methadone alone. As long as you keep it slightly below full coverage, your risk of tolerance goes way down.

3. if at any point you think you have tolerance, take a break from it. If you follow along here, people will likely know the best strategy to use that is in practice by the docs. Your doc may know, but it's good to check in here and make sure.

4. wear a protective layer that insulates you from the dentist, pharmacist, other doctors, friends, and relatives who learn you are taking this drug. I was completely unprepared for just how uneducated others were and how often they would inject their ignorant comments into my happy place . Seriously - I've had pharmacists refuse to fill it, doctors fire me because I must be a drug seeker, and more. You have to just know that you are doing this for right reasons and ignore these people.

[Midnightmarathon]

Thanks Ann & Steve, Thanks for your feedback! I am learning so much here. I guess I will stick with the 5mg for now and deal with the bad nights. I wake up pretty much every night with "the jerks" but mostly I am able to get back to sleep. It's just that intial falling to sleep that is the tough one which leads to another question. Steve, I'm confused about your comment about "becoming near suicidal" & marijuana. I too use this as a sleep aid. Not every night, but on those nights when the hot bath fails and I get into panic mode. Do you mean you were using too much of it? I don't even like it, but my ex hubby got me to try it for sleep and it DOES help.
Ann, I am very happy that I have NOT told anyone other than my best friend and my daughter about the methadone. I DID get quite a look from the pharmacist who I dropped the script off with, especially since I probably LOOK like a junkie at this point, but another one who I'm friendly with was there and I gave her the scoop. Still, I am prepared for the ignorance.

[ViewsAskew]

I think the place to shoot for is about 90% coverage. For me, that means a few symptoms in the evening and waking up a couple to 3 times with symptoms that I can get rid of relatively quickly and get back to sleep. If I get complete sleep cycles - around 90 minutes between falling to sleep and ending REM (back to stage 1), even if I wake up after each cycle, I'm OK. When cycles are interrupted, then I head to the doctor and say I need something better/different/more.

Would love to hear how others manage it.

Another thing I do now - I found that I'm one that has tolerance. My initial 10 mg became 12.5 in 4 months, then 15 in another 9 months, then 20, etc. I stayed at 25 for at least 6 years after I started alternating it with pramipexole. Yep, it's what I augmented on, but now that my ferritin isn't 8 (which it was when I augmented), I can use it for at least a week or so without issue. I've alternated in many ways and all have worked to keep me from having tolerance or augmentation. It's not perfect, but for me it's the best I've come up with.

[debbluebird]

How wonderful that you found a good doctor. I've been taking Methadone since 2010. I also lost my job because of sleep deprivation. When I first started it, I had been taking five different medications. I had also already augmented with Mirapex. At the time, my doctor wasn't that informed. I was the one who decided to stop all of my other medications one at a time. I ended up taking Methadone 5 mg tabs, times three, during each night. One during the early evening, one at midnight, one around 3 am. Stayed on that for several years. Then I developed central sleep apnea. My new sleep doctor wanted me to try and stop the Methadone. I complied, but went through withdrawal for a month and continued for another month. It did not go well. I could no longer tolerate the other meds, Mirapex and gabapentin. I was only sleeping 2 to 4 hours a night. He agreed that I could go back to Methadone. Now I am only taking 5 mg of Methadone, in the evening and a second one around 1 am. So going through the withdrawal was worth it, so that now I take less.
Through all of these years, I have found that RLS/PLM is like a roller coaster. Some nights are better than others. I've always stayed with the same dose. If I go through a really bad period, then I will add gabapentin for a short period. Ann is correct when she says that you will only get about 90 % coverage. I might get 95 %.

[Rustsmith]

midnightmarathon, I had a problem this past summer where I went from my normal cheerful self to the depths of depression the likes of which I do not remember having experienced since those horrible days as a teenager. It only took about a week for the change to occur. At first I thought that it had to do with a reduction in the number of miles that I was running, since I have used running as a very effective antidepressant in the past. But increasing my mileage did nothing and I continued to spiral into the darkness. At that point I KNEW that it had to be a drug interaction, so I called my doctor and started my own research into the four drugs that I was taking. My doctor is a researcher/professor, so she only has clinic hours one afternoon a week. The office staff (and her nurse) didn't bother to pass along my message. After a week of multiple calls and no reply, I finally got a senior office assistant who understood what I was saying when I said that I was near suicide. Another doctor's nurse called within 10 minutes, gathered my info and called my doctor, who was at a different hospital that day. My doctor called within an hour and we talked for at least 20 minutes. She adjusted the doses of the 3 prescription meds that I was taking and asked me to stop the marijuana. In less than 48 hrs the depression completely disappeared and I started feeling the emotional boost from the methadone once again. It was only then that I found a research article that reported that THC is a VERY effective antidepressant with few side effects at low doses (that makes it faster and better than any antidepressant currently available). However, at higher doses it turns on you and plunges you into a deep, near suicidal depression. I had been using edible THC every day for about 8 months when I had the problem. I now believe that the THC residual in my body was slowly growing during that time even though I was never eating more than 10mg/night and usually only 5. Once I stopped using it, the levels in my body quickly dropped back below the critical level and it went back to being an antidepressant.

So now, I try to only use 2.5 to 5mg/night and never for more than 4 or 5 nights in a row. I then take 3 or 4 days off before going back on it. The edible THC is the only thing that I have found that allows me to sleep for more than about 4 hrs/night, so as long as I use it sparingly and am aware of the potential downside, I consider it to be as important to the control of my RLS as the methadone and gabapentin that I must take every day.

[Midnightmarathon]

Steve, Wow, I am so sorry you went through that and also grateful that you stuck around!!! I too was getting to the point of suicide this summer. This monster pushes us right to the edge of that cliff doesn't he? Anyway, I also am in a much better place now. I take it you are in a state where you can obtain THC legally since you are talking about actual dosages. Don't have that luguxy here in NJ, but I will certainly be very careful and vigilant given what you have told me. I use very little. I have been tempted to use some during the day to try to stimulate my appetite but I guess I will nix that idea. Can I ask what other drugs besides Gabapentin are you on? I was so glad to get off of a few things!

[Midnightmarathon]

Debbluebird, Thank you for your response. It sounds like Steve, you also, have suffered horribly with this thing. I tell people that sometimes I feel like Linda blair! Were you ever able to work again? I have so much going on with my health right now, I can't imagine even looking for a job much less working one. I have a high stress 50 hr (supposed to be 30) job. I don't miss it. Not sure how I'll pay the mortagage but I have been careful with $ so have a cushion thank God. I am told it's near impossible to get LT disabilty for this.

[ViewsAskew]

We've had a few people succeed with disability. My accountant told me I should try...but he's an accountant, lol. I am going to give the infusions and similar one last shot - if that doesn't work, then I think I'll go that route and see what happens.

[badnights]

That's wonderful that you got in at Johns Hopkins. What a relief to have a doctor who gets it!! Who did you see?

I could see a lot of worry in your first post in this thread. I can tell you're already re-focusing just from talking to people here, but it can't hurt to consciously remind yourself that there are always bad things that might happen, and when a chronic illness hits us, we tend for the first while to focus on all those bad things that might happen. After a while, though, you realize that you're wasting your precious mental abilities worrying about waking up under anesthesia when you might never need anesthesia. There are and always have been a bazillion bad things that might happen to us, and it's not really that different now that we're saddled with a chronic disease. It's a matter of what we choose to focus on, and we should make every effort, as soon as we feel able, to focus on all the possible GOOD things that might happen, instead of every side effect with a 0.1% chance of happening with the medication we're on.

You WILL find a way through the years ahead. Whether it's a combination of medications or a brand new medication, lifestyle changes, miracles, whatever! there are things that work and you can find them, especially now that you have a good doctor on your side. I love Ann's advice re building a barrier - - I don't take methadone but I do take an opioid (hydromorphone) and I have learned to never tell anyone that I do. People are so mis-informed, as I was before I was forced to learn better. So that part is awkward, and worse with methadone than other opioids, but not everybody is a jerk.

Sleeping is hard for us, even when the symptoms are stilled. Many of us find opioids to be alerting, so that might be part of what is happening to you. I ended up taking zopiclone, a mild sleep aid. The only time I can fall asleep without it is when it isn't nighttime. hahah. My GP initially didn't want me to be on it long-term, but my WED/RLS specialist clarified that for her.

[Alan]

I am a 70 year old physician (retired). I had severe restless legs and either failed or augmented on gabapentin, codeine, ropinirole, mirapex, rotigotine patch. My doctor wanted to start me on methadone years ago, but I resisted, not wanting to go on a major opioid, even on my best responses to these other meds, I still had episodes of RLS 3-4 times a week; and of course the augmentations episondes were awful. I started on 5mg of methadone which I take at 8pm. I now have essentially NO episodes, and am sleeping 7-9 hours a night. If I do have an episode (less that 1-2/mo) it usually relates to a known trigger, or taking methadone too late at night. This reqponse has lasted over a year. I have no side effects

Recently I was put on Cymbalta for a chronic back pain and almost immediately my RLS roared back. My sleep doctor suggested I add Gabapentin 300mg at bedtime and it immediately went away again. RLS is a known symptom of cymbalta. Interestingly Gabapentin never did anything for my RLS previously despite incredibly high doses. For me methadone has been a real miracle. I hope the DOJ will not interfere too much with access!

[badnights]

Alan is there something besides duloxetine that you could try for your back? You are now taking a medication (gabapentin) solely to deal with the side effect of a medication (duloxetine). Not a happy rabbit hole to be falling down.

Interesting that the gabapentin affects your RLS/WED symptoms now but didn't before. Other people here have noticed that trying a medication years later can be like trying something brand new.

[Rustsmith]

Alan wrote:
For me methadone has been a real miracle. I hope the DOJ will not interfere too much with access!

That is exactly the way that I feel about it. A simply 5mg pill has almost banished my severe RLS, which is much more than I can say about the DAs that I was given. And although I know that I will need to take it for the rest of my life, my greatest fear is that the DEA and/or CDC decide that opioids are not necessary for chronic diseases and end up taking them away from us. Not that they haven't done a pretty good job of doing that already. To be honest, the thought of life without methadone quite frankly terrifies me.