Update -sigh-

Well, I started out on 2.5 mg of methadone twice a day and didn't notice any difference. I'm currently at 5 mg twice a day and still nothing. I'm supposed to check in with the Dr tomorrow. I assume he'll want to go up to 10 mg twice a day, but I'm not sure if that's a good idea. How high is it safe to go up to on the medicine? How high should we go before giving up on it? I really didn't think 2.5 mg would do anything, but I had a really good feeling about 5 mg... so I'm pretty bummed out right now.

44 Replies

  • Oh ookla, thats is a bummer. What did Dr.B say the dose could be, did he say in his email to you, i cant remember. Or maybe his website will say...??

  • His website says the range is 5 mg - 30 mg per day. I think I'd be willing to go up to 20 mg (10 mg twice a day), but I think 30 mg is too high. I'm still nervous about being on this medication, not to mention I can barely keep my eyes open (I'm hoping the drowsiness and nausea will go away after a few days).

  • You can get something for the nausea from your doctor, but the drowsiness is another story, you can only wait to see if that passes as your body adjusts to it. Make sure the anti nausea med is one that doesnt make RLS worse. Oh, and dont keep taking it if you are not happy with it and you are not seeing any results, just my opinion...

  • LOL that would be just like my doctor to prescribe something that makes RLS worse! :P

    I don't want to be a difficult patient. I've had this condition for so long. I don't want to seem unreasonable giving up on something after only a week. Especially since this is the last thing we can try before he sends me somewhere else. So I'll give it another week before throwing in the towel.

  • Absolutely, try it a bit longer, i meant to say to not carry on for too long without seeing any results. :) Look up the RLS friendly anti nausea meds before asking your doctor for some, probably find them on Dr.B's website if you are in the USA, the only one i know of in the UK is called Motilium 10.

  • The nausea is manageable for now with some chocolate and ginger ale ;) but if i find a dose of this med that actually seems to work and i plan to stay on it, and the nausea hasn't gone away, then i will follow your advice and get something for it. How are things going for you. Are you on something that's working for you? Or still searching?

  • Ok thats a good idea for you, and i do like the chocolate to help with the nausea, i could eat that all day....lol...not over keen on ginger ale, but that is good for feeling sick.

    I am taking Pramipexole, i have good and bad days, i am really sensitive to the meds and sometimes the side effects get me. Yesterday i was fine, today i feel dizzy and sleepy, so thats how it goes for me, i didnt sleep well last night either. I have tried almost all that there is available for RLS, and after taking the Pramipexole for almost a year now, you would think my body would have adjusted to it by now. :P Also, i am only on a low dose...

  • 5 mg is usually the standard dosing for a first timer..but being that you were

    not really comfortable taking the medicine in the first place, I will bet that's why

    your doctor chose to give you a half dose. I have a good feeling that 5mg will

    be enough to get the ball rolling.

  • thanks for the reply. how long does it usually take to become effective? a couple days? weeks? just wondering how long i should wait before moving up to 10 mg - or is 10 mg too much?

  • Nice photo

  • Qué bonito lo que has notado .. Me gusta la imagen también.

    Su cara es tan linda como tú. =)))

  • All right then

  • Gracias, me di cuenta del mensaje. Está muy entretenido con sus puestos de trabajo, por no hablar de imformative.

  • ah, creo que metí la pata con mi español.

    Hace ya siglos que no tenía clases.

  • Please can we keep to English so that we can all join in! Thanks

  • Gosh no.. methadone should be effective within 30-45 mins..5 mg is a good dose

    so you might take it up more slowly..especially if you are a little nauseated.. even

    if you aren't nauseated, take some crackers, or a sandwich with it..and drink up

    a full glass of water to get it working well for you...It's one of those drugs that

    can hit you really fast and hard...sleepiness, dizziness, nausea are going to go

    hand in hand with this...

  • Oh, I see. I thought maybe it was one of those medications you had to be on for a few days before you felt a difference. In that case, since I've been taking 5 mg twice a day since Monday and not felt better, should my dose be increased? Or should I move on to a different medicine?

  • Do the dose as your doctor said to do...if it's not working, then ask the nurse for

    permission to up the dosage..5mg usually works for RLS but if your doctor did

    tell you to go up to 10mg, then by all means do as he/she says...The 5mg difference

    can be pretty noticeable for you..so proceed with caution... It can make you pretty drowsy, sickish and dizzy. Good luck..Can you please keep us posted on this..You are one of the first people on this site that was given that drug..From what I read over on Dr. B's site...

    this is the drug of choice for many that must take a drug in that class. I'd like to hear first

    hand of your experience with it...Tell me if it affects you like a hangover the next morning.

  • I left a message with the doctor that I'm not getting anything positive at this dose, waiting to hear back if he wants to increase it or what. I had bad nasea and drowsiness yesterday and felt so sick. Today I just feel really drowsy, so at least the sick feeling went away. I'd be willing to go up to 10 mg twice a day if the doctor thinks that's appropriate, but if I don't feel better at that dose, I don't think I should go any higher. Maybe just switch back to gabapentin.

  • As the days progress, you will be able to take the 10mg without many symptoms..the tiredness goes away after a bit on prescription painkillers..The nausea can go away if you take your time getting up to that 10mg..Plan to sleep some time extra while you are getting used to this...decide how much you need by a daily basis..you can miss doses of the pain pill and you can cut them down...There is always a give and a take with pain pills...you can lose some energy and not remember parts of your week...Your doctor gave you the dosage for a good reason...sleep deprivation is being looked at very closely now..

    It's honestly a life hazard to go without sleep so long...I wish for you

    to get at least a few nights of sleep so you can make perfect choices for yourself and family...xxx Karen

  • Thank you so much for all the info and kind words. I called my doctor this morning, but he didn't call me back. And they're out of the office on Fridays. So I would have to wait until Monday to find out if he wanted me to go up to 10 mgs. I admit it might not be the smart thing to do, but I went ahead and upped my dose on my own. I can't wait til Monday. I already know the 5 mg dose isn't working and I'm getting frustrated wasting so much time on this. Now I can spend the weekend at 10 mg and find out if that dose works for me or not. If not, I'll know by Monday and can tell the doctor I'm done with this medication. Honestly, if it's not working at 10 mgs, it's probably just not going to work period - and I don't want to keep upping my dose to God knows how high it would take. I think 10 mg twice a day is a reasonable line to draw in the sand. If that doesn't work, I'm going back to gabapentin. It might not have helped my daytime symptoms (along with feeling foggy and forgetful), but at least I could sleep through the night on it. -End of rant-

  • If he did prescribe the 10 mg..then take it if you need it. It's a very safe dosage..You just have to plan to sleep with your time..I wouldn't allow myself to become miserable if the doctor prescribed that dose for you..

    It's so hard to stop throwing up once that starts so knowing that, then decide..If you have to be responsible for kids or you have to leave the house..

    well then, that's going to be really hard on you...Gaba is excellent for getting sleep..just keep getting on the scale to monitor weight gain..you can diet and gain weight on that stuff.. I do think that you will get total relief on 10mg of the methadone...

  • Luckily, I only have one day of nausea whenever I change dosages (it seems to go away the next day). The biggest problem, besides the lack of pain relief, has been the extreme drowsiness, but you said that should go away after a few days. I'm really glad you said this was a safe dose. I was worried about taking too much of it. If 10 mg twice a day doesn't work and the dr wants to increase the dose, how high up is it safe to go?

  • Dr B's website said up to 30 mg a day. Sweetie, there are tons of other narcotics that they can try if this doesn't work...really, there are and there are tiny doses up to big big ones..You won't run out of options.. the drowsiness will fade away over the next week..you will get used to it..but if you start puking on the stuff, I don't want to tell you to keep taking it..Some people get desperately sick on pain pills so much that they require urgent care..so please take care of yourself. Please go a little slow..=)

  • I hope you don't mind me asking, but why aren't you on methadone? My doctor has already said this is the end of the line for us - if this doesn't work, he's going to send me to UofM. Most narcotics (vicadin, codeine, darvocet, ferocet, etc.) make me vomit and tramadol gave me sleep apnea, so I think my options are limited. But I'm not throwing in the towel yet. I have hope that this dose will work. I should know by tomorrow night. As for gabapentin and weight gain, I was blessed by my grandfather with a hyper metabolism. It is extremely difficult for me to gain weight. I've been 135 / 140 lbs. since high school. Thanks again for all your support, I feel a lot better now! :)

  • It's a mater of choice for my doctor. Your doctor probably doesn't want to be known as a pill pusher..so I am guessing that He's referring you over just on that fact alone..that's great if you get to see a specialist. You can find out a lot of answers..I've been told that this is the highest dose that my doctor wants to go for this condition..after this if I need another pain pill - then I would go to a pain specialist clinic...I am really good at reminding the doctor that It's my human right to live without pain...

  • Hi Ookla. I googled gabapentin and RLS. BINGO! Amazing article out of John Hopkins in May 2013. I read it in Science Daily. They talk about the relationship between RLS and glutamate in the brain. Everyone who complained of RLS had much higher levels of glutamate in their brain than controls. Gabapentin seems to be the only drug on the market right now that will reduce glutamate in the brain.

    I'm up way past my bedtime and I blame all of you. You are all suffering more than any human beings should and I can't stand it. I want all of you to reduce your glutamate intake immediately. It's in all processed foods and probably restaurant food. Plus there's tons of glutamate in casein and whey and especially my beloved parmesian cheese. It's in soy, corn, wheat and probably most grains. Even sea salt???? Plus they've found high levels of glutamate in CFS and fibro patients. It's possible that just plain old GABA that you buy at a health food store might help but that's just playing with fire when the doctors at John Hopkins have said stick with Gabapentin.

    Go sleepy all of you.

  • Thank you Whitetea. =)

  • You're very welcome! How did you feel today? I love the article at this website - informative, encouraging and caring: dogtorj.com/g-a-r-d/foods-t...

  • There is an article on here about glutamate and RLS, Put glutamate in search and it will take you to it. Glutamate causes insomnia for people with RLS. Their medication was keeping the legs quiet but they had insomnia. I dont suffer with insomnia, so high glutamate obviously doesnt apply to me.

  • Hi Ookla very sorry to hear about the methadone not working. I'm new to this site so I'm not sure what has been discussed already. I researched methadone and it seems that it has the potential to raise serotonin levels - a big NO for RLS sufferers? But this fact is probably already known by everybody here. I took melatonin for years, along with a tiny amount of remeron, before I realized that it was giving me restless "body". Tryptophan would probably do the same Have you researched iron? RLS is called the "anemic brain." Even if you're not anemic supposedly our brains have trouble calling up the needed iron at night. There have been clinical trials going on here whereby they give RLS sufferers an injection of iron at night - with excellent results. I take a bioavailable form of iron when mine acts up - the plain old iron oxide doesn't seem to help at all. Although maybe if it was taken with vitamin c? When I was looking up methadone I saw that there are foods that tend to raise serotonin levels like bananas and kiwi. I have a feeling that eventually they'll make a connection between certain gut bacteria and RLS. But for now I try to avoid constipation or a full stomach at night which seems to trigger my RLS.

  • i've tried it all, my friend - mirapex, requip, nupro patch, horizant, gabapentin, tramadol, klonopin, magnesium, iron, vitamin d, multi-vitamins, tomato juice, advil, naproxen, prednisone, alieve, physical therapy, massage therapy, restful legs, leg cramps, and now methadone.

  • Thanks Ookla. Just curious, did you take a bioavailable form of iron at night on an empty stomach with a glass of water? When I get restless leg/body it is so bad it is impossible to sleep and it goes on all night. Even if I manage to fall asleep for awhile when I wake up it is still there. I take two 25 mg tablets of "Easy Iron" and within 45 minutes the restless body is gone. Only to return the next night. So it is not a cure. I have IBS and feel there might be somewhat of a link. Cutting out antihistamines, melatonin and as I mentioned, remeron, made a difference. Cutting out the late night eating I think helps me. Supposedly we're supposed to get 80% of our calories between sun up and sun down because our GI tract has its own circadian rhythm. So unlike the iron, I consider cutting out those things a cure...for me. I too take magnesium (for the IBS) and it never seemed to help. But I still think it's a good supplement. Klonopin didn't put a dent in, it either does exercise or massage. It's not a leg or body or muscle or anxiety condition. They've done autopsies on people who claimed to have RLS when they died (not of RLS) and found that their brains were anemic.

  • I didn't take any iron, sorry. They thoroughly checked all my iron levels and there was no deficiency there. My blood work and tests always come out negative. There's never ever anything wrong with me. Brain, blood, thyroid, legs, etc. Everything always checks out fine. No explanation for my pain. I swear it's real, though.

  • actually the history of that drug is not well known by many people who are not in the medical profession...those that are in a drug rehab may know that drug far better than anyone...I, myself having nursing background was shocked when it started being used to control pain and the symptoms of RLS so your information that you looked up is a good thing Whitetea..thanks for doing so...

    That raise in Serotonin will put one in a better mood and will distort the way that they perceive pain...I have been studying it as well as you ...Is there enough power in that drug to raise the serotonin? Yep, there is but it's not nearly as much as, lets say Paxil..or Paroxetine..or Prozac...but it's worth noting since we know so little about RLS...Good job of looking it up..=)

    Also about the iron brain...we bring that up from time to time..so it's good that you took the time to explain to those who have not been on board long. Some

    people did iron infusions..I haven't heard a ton about the injections yet...

    Food is always considered when dealing with RLS..I may be the biggest advocate on this site to preach about foods in the right combination..I eat

    to live these days rather than eating whatever is quick..I don't shop down the middle isles of the store much...everything that I need to keep myself and family healthy is found on the outside parameters of the store..I run at least

    3 -5 miles every single day and I do sit-ups push ups..I am as healthy as I can be..and I still have RLS...pretty severe, my blood tests are top shape on all levels..I am the weight I should be..and yes, I get very frustrated..

  • I'm not anemic either. But desperate people do desperate things. Too much iron over an extended period can be dangerous I know. I read about the iron at night thing on the internet about two or three years ago. They too said it doesn't matter if you're not anemic. They said that there's just something about that free floating iron in your bloodstream that makes it easy for your brain to capture and relax your legs/body - so they claimed. Maybe for some reason our brain has trouble calling up the iron from our stores of it? Even if we have large stores of it in our body. So I figured one night of iron can't hurt. I got tested once or twice a year to make sure my iron didn't go too high, which it never did. But for the last several weeks I haven't had to use the iron because I cut out the melatonin, antihistimines etc. I was taking 3mg of melatonin, plus remeron, and sometimes an antihistamine. So STUPID!!! Maybe the serotonin was stopping my brain from calling up iron from my stores? Plus, about a year ago I noticed that when I had restless leg, if I went to the bathroom at night and my colon was empty at that point, then when I went back to bed the restless leg was completely gone as well. It would bring relief each and every time thereafter. It's all just plain strange.

  • No no, I'm not a doctor. I just threw my experience out there. I am ever so grateful to that person who posted about the iron at night idea several years ago. I probably would have had to quit my job and spend my days in the fetal position. The iron is a Band-Aid but it was a life saving band aid for me. Pain and suffering aside, it has been an incredibly fascinating journey that still is not over. I am not the only one that believes there is a connection between gut bacteria, iron and RLS. For all anyone knows, the iron may just be a stepping stone at night that enables the brain to produce dopamine or more dopamine. And maybe the extra serotonin I was putting into my body was a dopamine agonist. So I either stop putting serotonin into the body which was robbing it of dopamine or take iron that would allow the brain to ramp up production of dopamine that would than allow my body to relax. This is complete and utter speculation on my part. And what does going to the bathroom at night have anything to do with anything? Unless I'm getting rid of a lot of "iron loving" bacteria that once they're gone (albeit temporarily)leaves more iron for my brain.

    So who are you going to listen to, a crazed, babbling accountant, or a well-trained medical doctor that has probably helped thousands of RLS sufferers.

  • Are you hinting at a cleanse? That was a well meaning person's suggestion to do..someone else told me to live on just water for a week...I get so many suggestions. Seems like whatever I do helps me to cope better without sleep but I can't get rid of the RLS itself..My Anemic Brain blood test said that I am

    at 67..that's well up there..but no relief yet..maybe that test is wrong..grrrr..

    I hope that everyone sleeps hard tonight..Thanks for sharing your thoughts..

    My brain can't take that much in right now..I am still working since 5am this morning..or 11 hours in...I have to get back to work and then re-read what you said.. have a good night everyone. =) xxx

  • ookla, thats all we can do on here, like whitetea has said give our experience. Different things work for people. Iron never helped me, and taking iron is not always the answer. The experts say there is a connection to RLS and iron, but not for everyone. Thats what makes RLS so complicated.

    Listen to your doctor, but we are here to give our experience or what we have learned about RLS over the years so we can tell those who come on here what we have found that helps or not. We can guide people to good websites for further information. Or we are just here to listen when people are having a hard time. :)

  • Good Elsie...will you please listen to me! I am miserable today with RLS

    and my back is letting me know that I am working too many hours at my desk or standing...I had an injection of steroids last week Friday..my body is not taking that very well...I have severe insomnia because that's the side effects.

    I took a cool washcloth over my eyes and head today for my lunch hour..I work at home..it helped to make me relax but then I was laying on my back.

    Yep, you know it..RLS came and it won't stop for me..I might have to resort

    to going over to Rahims garden again or I am going to pound the pavement by running again..that gives me an hour or two of rest as best.. I have that MGS so I have to get my bone marrow looked at again...Not looking forward to that. It's a precursor to bone cancer but can also be other minor things including my RA...still it's a huge worry..every 3 months for life...Todd and me are fighting bad...too much worry, not enough sleep and then something else...

    Men...I think that I am wiser now than I was when I married at age 18..When it rains, it pours and that's why I look so sad...Life just isn't fair Elisse..xxx X

  • Yikes, I can't believe how you suffer. It's ridiculous. Give me some time to mull it over and do some research. It seems people with these funky auto-immune diseases (RA) are susceptible to RLS. Yesterday I read an article in Science Daily that talked about the "onset" of RA and a very specific gut bacteria. You have to google it and read it. As far as the iron goes, it never helped if I took it during the day or on a full stomach or if I took the standard iron oxide from a drug store. I had to use a "bioavailable" form at night on an empty stomach. I also read that if you're deficient in zinc the iron won't work either. Since I take zinc (zinc carnitine) whenever I think of it (for another condition of mine) than maybe that's why the iron worked for me and not other people? And if the iron still doesn't work I would give it one last shot with some vitamin c and zinc - at night. It takes at least 45 minutes to kick in and lasts all night. But then the next night.....

    I never do cleanses. Maybe I should. I eat right pretty much all of the time. But I have IBS - the slow motility kind. Horrible RLS was a certainty if I went to bed with a bloated colon. Going to the bathroom, to the point of an empty large intestine, would always guarantee an end to the RLS. And sometimes even the next night too. But as soon as my bloated colon returned, so did the RLS. So I can't imagine a cleanse helping other than for a night or two.

    Nothing stranger than real life.

  • I wrote , then deleted it..it's too weird to say all that I was going to..

    RLS is really a pain to control..I can have narcotics, I have a prescription on call

    but I use up the entire prescription in 15 days - I am prescribed for 30 days only

    meaning that it should last me that long..I was taking it 2 times a day rather than one

    and my doctor had a conversation or two with me about taking it only at night..so

    I quit with it on my own..next Friday, I am having extensive testing..they are going

    in to get another look at my bone marrow..not based on symptoms but on some

    numbers that showed up just recently..I am getting blood tests nearly every week..

    We have to monitor closely..My body doesn't like medicine very much.. I am also

    wondering as they are looking at that bone marrow for an infection...so I guess we

    will find out soon enough..RLS is hugely affected by stress..and that I have more than

    enough of in the past couple days..I appreciate the detective work that you are doing

    as I was praying for an angel to light the way...haha..seriously I was..Thanks for the help so much..I do hope that everyone on this forum gets deep sleep tonight and everyone is pain free...if it keeps up a little longer for me, I might go for the oxycodone that is prescribed for


  • Yikes, how was your RLS while you were on antibiotics for knee? Same, better, worse? For that matter, how was your RLS while you were in the hospital. At first blush I would want to say that it improved your RLS, but then probably not. I take an antibiotic/antifungal called nystatin and when I take it at night it has almost the same affect as an antihistamine. So I don't take it at night anymore. I'm sensitive to medicine as well. Clearly, just about anything and everything could be contributing to our RLS. My father had an ultra mild case of RLS. So I think there is a genetic predisposition (especially if it starts young) and then an environmental trigger. I agree with you about the RLS, of all of the strange maladies I have, the RLS is the worst and most bizarre, but also most susceptible to change, for better or for worse. And I have no idea if it is in some way related to my other conditions, or not. It seemed to get worse with peri-menopause but that is also when I started the melatonin.

    Yikes, if and when you have a moment when you are not primal screaming inside, take a good look at everything in your environment. Everything from pets in your house to foods that you eat day in day out, especially at night. Bananas, diet soda, alcohol, yogurt? Sometimes I wonder if allergies can aggravate RLS. Even if we don't take antihistamines, is it possible that our bodies produce antihistamine in response to an allergen that then makes the RLS worse? How does estrogen and progesterone affect your RLS...better, worse or same during pregnancy?

    Well, just grasping at anything at this point. Bedtime here in Illinois. Stay strong. I have a good feeling about everyone's RLS and I never have a good feeling about anything.

  • I'm up way past my bedtime. But it was worth it. I googled RLS and Gabapentin. BINGO! Very recent article in Science Daily about glutamate and RLS. Glutamate (an excitotoxin) is much higher in our brains than the rest of the population. Gabapentin is the only drug on the market right now that will reduce those levels.

    Plus I want all of you, starting tomorrow to reduce your intake of glutamate so I can get some sleep and stop worrying about you people. It's in everything - all processed foods and most restaurants. It's naturally occurring in whey and casein and my beloved parmesian cheese. It's in soy, corn, wheat and grains in general. Its even high in sea salt. And I assume that diet pop is out of the question. High levels of glutamate are also found in CFS and fibro sufferers.

    Do your research. Is Gaba as effective as Gabapentin? Supposedly Acetlycysteine (spelling?) is a glutamate agonist. What else contains very high levels of glutamate? A little is probably fine. But if our brains have trouble metabolizing it than we have to cut it from the program. Now my only question is - does serotonin cause glutamate to hang around and does iron and dopamine help our brains to get rid of it.

    Go sleepy all of you, so I can.

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