Restless Legs Syndrome (RLS) Discussion Board

Joanie60 wrote:So time will tell!! At least I can go back to the oxycodone if methadone doesn't work!

Joanie how did you trial of methadone go?

Also, anyone experience dry mouth, dry lips, dry eyes and constant feeling of mucus stuck in throat. Not sure if it's post nasal drip or what. Not really sure what post nasal drip is?? I think I remember someone here dealing with chronic post nasal drip.

Methadone is the BEST DRUG EVER INVENTED!!! I take 5mg twice a day. I'm not gonna lie, I still have mild symptoms (and woke myself up with some major leg jerking last night, might have been periodic limb whatever-whatever) but methadone gives steady constant relief. There are no "ups and downs" like oxycodone. I have about 85-90% relief almost all the time. I still use my hot water bottle for some extra relief, or a hot bath for some reason helps a lot (trying to figure out how to work whist in a hot tub but I can't see it yet hahahha). But my legs are just plain steady. Sounds like a small thing but WOW it makes a difference, not to be going up and down the pain ladder. Never having to debate taking the fourth pill or sweating it out. I just take em at 10am and 6pm.

The one side effect, well, I am drinking prune juice and metamusel to handle that and it is getting better. I do not have itching and if there are any other side effects, they have not crashed through my "happy bubble" yet.

I'll check in again, it has only been a week and a half but so far, I am LOVING life!!!

I definitely have dry mouth, dry lipe, dry eyes. No mucus feeling. But, I had these before methadone, too. I was seeing an eye doc about plugs for my tear ducts 10-12 years ago. Since then, it's just gotten worse. Is the methadone partially to blame? I'm more likely to blame age....but I have no way of knowing.

but so far, I am LOVING life!!!

ViewsAskew wrote:I definitely have dry mouth, dry lipe, dry eyes. No mucus feeling. But, I had these before methadone, too. I was seeing an eye doc about plugs for my tear ducts 10-12 years ago. Since then, it's just gotten worse. Is the methadone partially to blame? I'm more likely to blame age....but I have no way of knowing.

I had this issue with Oxycodone. At first I didn't notice but after some months it became obvious that Oxycodone was causing this issue. This was the reason why I switchted to Morphine and later on to Hydromorphone.

My eyes were dry all day and I had to use artificial tears every 2 hours. Quite annoying.

I did get ill on the methadone, but it's because I took a multivitamin in the morning as it is stated on the instructions not to take multivitamin.

Ann,

I mentioned to my doc. about taking methodone in the morning since it causes me to stay awake at night. How early do you take the methodone in order to sleep i.e. if you want to sleep at 2 a.m., take it at 9 p.m. etc.?

peanut1 wrote:I did get ill on the methadone, but it's because I took a multivitamin in the morning as it is stated on the instructions not to take multivitamin.

Ann,

I mentioned to my doc. about taking methodone in the morning since it causes me to stay awake at night. How early do you take the methodone in order to sleep i.e. if you want to sleep at 2 a.m., take it at 9 p.m. etc.?

I have to take the majority of it at least 4 to 5 hours before sleep. The alerting starts about an hour after I take it. It peaks about 3 hours after it starts and winds down. Lately I've moved my schedule a bit earlier thanks to using pramipexole during the week. Since the iron infusions, I am less concerned about augmentation so have been using it more often. When I take methadone, here is what I do.

Up at 10-11 AM.
1/5 dose at 3 PM
1/5 dose at 5 PM (sometimes I take the first and second together around 4 PM)
2/5 dose at 8-9 PM
1/5 dose at 12 AM
Bedtime around 1-3 AM

I try to take that 2/5 dose as close to 8 PM as a can. If I'm late, I'm almost guaranteed to be asleep that much later. I definitely "need" at least 9 hours with the methadone. I've always needed more sleep - assumed it was the PLMS that kept me from getting decent sleep. But, the drugs seem to change my sleep architecture so that if I don't get at least 9 hours (and I wake up multiple times, sometimes with some wandering around), I am very tired. I can do it one or two days, but by day three, I need at least 10-12 hours to make up for it. I know that sounds luxurious to everyone who's lucky to get 3 or 4 hours - I hear you and I've been there, too. I have to wonder if 30 or more years of deprivation doesn't permanently make you need more sleep or something. Or maybe it's just the drugs.

Ann,

I always took the whole pill right before bed--never thought of splitting the dosage that way. Is it more effective for you to split the dosage rather than taking it all at 8 p.m.? Curious. Also curious about the iron infusion. When I talked to my doc about getting an iron infusion she told me I had too much iron to consider it (my iron level is in the 20s) Did Dr. B suggest this?

Kathy

Kathy, my dose is much higher and my symptoms are all day - so I would split my dose regardless. If I waited until a couple hours before bed, I'd miserable. I can walk off the early stuff, but 5 or 6 hours after I get up, I need my first dose or I can't sit or work at all. That said, I think the doc assumes I take one or two tabs of it in the afternoon and the majority right before bed. I don't think the docs like you to split it because it makes it look as if you're trying to spread out any "high" you might get. For me, it's all about the alerting issue! Not sure if it's more effective, but it certainly lets me control how awake I am.

Per the infusion - when you say your iron level is in your 20s - you mean serum ferritin, right? I think Dr B would give anyone with 100 or lower an infusion. Dr Earley would likely give anyone with 200 (maybe even higher) an infusion. Mine was 8 at one point. I got it up to 34 with iron, but that took months and it wouldn't go higher. It was in the teens, I think, when I had the first infusion. It relatively quickly dropped, but settled in around 75. Dr B agreed to try a second one because he'd given me 1000mg and had hoped it would be more like 300 two months after. Since it was already down in the 70's, he thought a second was worth it. Not sure he'll go for a third, though!

pjmccoy1 wrote:

Not sure if it's post nasal drip or what. Not really sure what post nasal drip is?? I think I remember someone here dealing with chronic post nasal drip.

You may very well be remembering seeing something that I wrote. I have had very severe upper respiratory allergies since I was 4yrs old. I have allergy shots for over a decade and live on anti-allergy drugs since I am allergic to virtually everything in the air.

Basically, post nasal drip occurs when mucus from your nose drains into your throat. Symptoms range from a mildly irritated throat to constant hoarseness due to all the mucus accumulating near the vocal cords. In severe situations, it cause irritation that can mimic a throat infection. Treatments try to reduce the volume of mucus being produced. In my case, I simply have had to learn to cope and live with it.

ViewsAskew wrote: I definitely "need" at least 9 hours with the methadone. I've always needed more sleep - assumed it was the PLMS that kept me from getting decent sleep. But, the drugs seem to change my sleep architecture so that if I don't get at least 9 hours (and I wake up multiple times, sometimes with some wandering around), I am very tired. I can do it one or two days, but by day three, I need at least 10-12 hours to make up for it. I know that sounds luxurious to everyone who's lucky to get 3 or 4 hours - I hear you and I've been there, too. I have to wonder if 30 or more years of deprivation doesn't permanently make you need more sleep or something. Or maybe it's just the drugs.

You did test for sleep apnea? Opioids cause muscle relaxation, so that people who are doing fine without opioids (as far as arousals are concerned) have sleep apnea with them.

Regards, F.

Frunobulax wrote:

ViewsAskew wrote: I definitely "need" at least 9 hours with the methadone. I've always needed more sleep - assumed it was the PLMS that kept me from getting decent sleep. But, the drugs seem to change my sleep architecture so that if I don't get at least 9 hours (and I wake up multiple times, sometimes with some wandering around), I am very tired. I can do it one or two days, but by day three, I need at least 10-12 hours to make up for it. I know that sounds luxurious to everyone who's lucky to get 3 or 4 hours - I hear you and I've been there, too. I have to wonder if 30 or more years of deprivation doesn't permanently make you need more sleep or something. Or maybe it's just the drugs.

You did test for sleep apnea? Opioids cause muscle relaxation, so that people who are doing fine without opioids (as far as arousals are concerned) have sleep apnea with them.

Regards, F.

Yes - no apnea.

ViewsAskew wrote:Yes - no apnea.

My sleep quality varies with the amount of PLMS that I experience. My apnea (a mild one) is well controlled since I use a mask.
I wish I knew what influences the PLMS amount, I recently had weeks without any PLMS - but a few weeks ago the PLMS came back...

Regards, F.

Frunobulax wrote:

ViewsAskew wrote:Yes - no apnea.

My sleep quality varies with the amount of PLMS that I experience. My apnea (a mild one) is well controlled since I use a mask.
I wish I knew what influences the PLMS amount, I recently had weeks without any PLMS - but a few weeks ago the PLMS came back...

Regards, F.

PLMs were my issue LONG before the WED was. And, I know I still have them with the opioids, though they are greatly reduced, which could alone count for the sleepiness I have when I use only opioids. The DAs work the best, for me, related to the PLMs. But, as with many of those here, I can't use them regularly.

The PLMs are odd, aren't they? They truly no just about nothing about them. And, for some of us, that's not good!

Well just got test results back from Rheumatologist appointment. After two types of swallowing tests, my GI doc referred me due to continued swallowing issues, mucus/lump in throat, dry mouth, dry eyes, dry lips, dry nose, joint problems and complete fatigue and exhaustion. He wanted testing done for sicca syndrome, specifically Sjogren's syndrome. It's been a long month. If I wasn't depressed enough now I was mortified I had a rare auto immune disease. Good news yesterday. My blood and urine labs in combination with physical exam did not show an auto immune disease. Praise God! Based on the timeline of when these symptoms started, the Rheumatologist thinks it is extreme side effects of an offending Rx. It's most likely the pain med (methadone). Now here comes my question, is it going to be hard to come off methadone? I've been on it just over 3 months but at a very, low dose. I see my sleep doc and Psych tomorrow. Guess I'm back to square one now. I am on Bupropion 100 sr for depression and it does help the RLS but with some side effects too. Hoping those go away as I am running out of options for both RLS treatment, as well as, depression. I have been so sick for 16 months. Was wondering about Depakote or Topamax?