Restless Legs Syndrome (RLS) Discussion Board

Did not see this problem elsewhere. Anyone on methadone needs to read this. After 4 years on methadone and watching refill dates closely, I suddenly realized our vacation to Alaska started 5 days before I could fill my methadone. Called the doctor, and he said there would be no pharmacy in any other state (like Alaska) that would fill a written prescription for methadone. And he has always advised that the methadone refills have to basically dictate your vacation dates. He had a patient who had a car wreck in Florida (we are in Michigan) and he lost his methadone in the accident. My doctor and his PA spent a 1/2 day trying to find a doctor or an ER in Florida who would write a new script. So. after I got over my panic attack, my husband & I were able to change the cruise date, airplane tickets, etc. so on the way to the airport, we will stop & pick up prescription from my doctor and then walk across the hall and fill it at the pharmacy there. (they always have been the pharmacy to fill it)....then methadone in hand have to head for airport. Writing this makes me feel like a full blown drug addict...and maybe when on methadone, kind of looks that way. I will say this...the frantic changes in travel plans, my husband took quite well. Once he chased a Fed Ex truck all over metro Detroit, that had my methadone on board...(that is a more complicated story) I think of all this and think it is stupid to be on a drug I have to plan vacations around. but nothing else worked and augmentation I never, ever want to experience again. So it is not the drug per se, it is the rls I have to work around. And then I also realized I am on a medication that has to be IV infusion _all day deal---once a month and that I have for a zillion years had to schedule my vacations around that.. So, for those of you on a super controlled drug like methadone...before you actually firm up plans for a vacation. make sure your methadone refills don't fall in the middle of your vacation

So crazy. And, thank you for that very important piece of info!. You must be relieved that you could get it resolved.

I highly recommend that anyone taking ANY controlled drug to do whatever you can to create a small stash. From losing them on a trip to a stolen purse to vacations, things happen that can definitely make it difficult for us. I spent years cutting back a half dose here and there to create a stash. A year or so ago, circumstances arose where I was VERY happy to have that! I depleted almost all of it, but did not run out. Then set about creating a new stash. Recently, because of a screw up with the doctor's staff, I needed it again and used all of it. Am not happy to have no stash again...but so relieved I had it to begin with.

In the case of vacation, though, it really doesn't help because you cannot even fill it at all. Definitely important to make sure take that into account.

At the moment I have no stash, this is a timely reminder to do what you did Ann, save a pill here, a pill there, get my little stash gathered up again.

I am fortunate in that my GP will be flexible. Scripts are issued every 28 days, and for certain medications we may get a two month supply on the one script. His flexibilty extends to writing a script sometimes a few days early to accommodate a holiday. BUT, I am not on methadon.

I am exceedingly fortunate to have a doctor who will do anything to get around the stupid 30 day rule. She writes my prescriptions so that I get a 90 day supply for my "30 days" of medication. At my last visit she even gave me a prescription that is dated for September that I will try to get filled at the appropriate time. But I also have a backup appointment to come in and get a new prescription in the pharmacy says no.

The really ridiculous thing about all this is that it effectively requires us to be at home at a given time every 30 days. I have a 3 week cruise vacation coming up next spring. If not for my doctor's generosity and desire to reduce the effort that both her staff and I have to go through, I doubt that I would be able to make it work (except that I also have a rather significant stash). And since a number of us are retired, this also limits opportunities to visit the kids, tour the country, etc. in our retirement.

Steve - would that all doctors were like yours. A fine example of understanding and sensibility.

Betty - yes, I understand what a real gem that she is. To become the patient of a doctor who is willing to "game the system", who does RLS research so she truly knows our issues and who has been willing to accept my level of understanding of RLS treatment options has been wonderful. And since I have had to fire a couple of neurologists for poor care, I can understand the challenges that most RLS patients face.

My doctor write for more when I knew I would be gone.
Another way I get around it, is for my husband to get it filled and mail it to me. Also, my doctor writes three hard copies at a time. If I ever lose this doctor I will be dead.

I am glad that my doctor is younger than me - he will take longer to retire !!

I agree with the stash idea. Sounds like I am a drug addict (these drugs certainly have you thinking like one...and truth is methadone is highly addictive) ) but we are going to a dude ranch in March. I already figured if each month I manage to save one pill . I will have an 8 day stash....just in case.

and truth is methadone is highly addictive

Gaelyl, just to clarify your comment about addiction. Research has shown that the low doses of methadone used to treat RLS are rarely addictive. Yes, we become dependent upon it and have to go through withdrawal if/when we quit, but dependence is not addiction. Addiction is where you become psychologically dependent upon the high that higher doses can cause. Another definition of addiction that I have seen used is that addiction is where you would steal from family or loved ones just to get the money for the next high. Most of us would willingly go through the pains of withdrawal before we would hurt those around us.

For comparison, most of us take 5 to 20 mg/day. The dose used to treat heroin addicts who are addicted is often 80 to 100mg.

To follow up on what Steve said...those who write about addiction - including medical personnel - often confuse addiction and dependence. They make it sounds as if ANYONE who takes these drugs is an addict!

We are NOT. It is one of those topics that makes me get my panties in a twist, lol. When I hear strangers say it, I want to interrupt them and set the record straight ;-0.

I so wish that everyone who writes about it or portrays it in movies or TV would get it right! Then maybe those of us who need it would not feel so terribly about it.

Sometimes I like to shock my sanctimonious friends who haughtily proclaim "I don't take drugs". I say something like, oh, I take heaps of drugs! Really, for fairly bad, chronic RLS I don't take much, only one ropinerole cut in half and a 100mg tramadol, the occasional codeine and a paracetamol or ibuprofen just to go along for the ride at bedtime. But I also take six other prescription drugs due to no thyroid or parathyroids.

Yankiwi - I tend to like to shock anyone who is being sanctimonious about anything. And, i hope anytime I get sanctimonious that someone will shock me, lol.

I take about 8 different medications and 6 are for RLS or to deal with a side effect of the RLS or the RLS medication.

Hi...Gaely here,,,I read the replies & realized that I made a huge mistake in making Methadone sound addictive for me, .I think it would make more sense if I had addressed it as at that short of notice I did not have time to switch to an alternative med to get me thru the 2 week trip. I had already been the augmentation route and that to me is far more scary than any drug, like methadone, literally saved my sanity. So I guess the panic I showed was real, but I am sorry if it came across that I was really concerned about addiction And as someone suggested, yesp, I started a little stash now to cover a March vacation