left methadone at home, urgent advise needed

[Rayme]

I'm away from home tonight and for the first time forgot my methadone. I take 5mg every night. What might happen to me if I miss 1 dose of 5mg Tonight?!?! If it might be intolerable I will drive home again tonight! Your thoughts would be very much appreciated. Thanks.

[707twitcher]

not sure what will happen for you. I am on buprenorphine and stoped it last week to see if dipyridamole would work for me. 36 hours after my last buprenorphine I started in on the worst RLS episode of my life. Not sure how much of it was baseline RLS vs. opioid withdrawal - likely some of both. Not sure you can bank on the 36 hour timeframe - everyone reacts differently. Good luck!

[Rayme in reply to 707twitcher]

hi 7707 Twitcher, thanks so much for your quick reply. It's helpful to me to hear your experience. I have 3 hours to decide. Likely that I will go home again as am not happy having any moderate to severe symptoms, they are so awful as you know!!! On the bright side I'm only 11hr 30min from home. Spoils the weekend but thats not such a big deal. 😊

[Rayme in reply to Rayme]

that was meant to read 1hr 30min from home, not 11hr 30min 😄 I'm glad I'm back, I've taken my tablet. 😴

[Mongolia2020]

I’m on 7.5 mg methadone. Last night I decided to split my dose into 2.5 mg before dinner and .5 mg after dinner. But I forgot the .5 mg after dinner and went to bed without it. By 10:30pm I was wondering why my legs were bad, then I realised I had forgotten the second part of my dose., and took it then.

While it wasn’t intolerable, I doubt if I would have got much if any sleep without it.

[Mongolia2020 in reply to Mongolia2020]

Where in NZ are you ? I’m in Auckland.

[Rayme in reply to Mongolia2020]

hi, thanks for your reply! That's interesting. I can imagine bit of early breakthrough but then it all ramping up to something horrid by 4am and then being tired with awful ongoing RL next day while trying to drive home...in my imagination....but could be close to the truth. So, I'm on my way home. Don't fancy testing it out! I live in Wellington. My sleep specialist is Dr Alex Bartle in Auckland, he comes down this way regularly. Maybe NZ needs an RL group? Something I've thought about a bit.

[Mongolia2020 in reply to Rayme]

Me too. I have also been with Alex for many years. Just stated on meth recently. Most doctors here don’t know much about it, and we have to self-advocate, but thankfully I have found my GPhappy to accept that I know more than him about him.

I think it likely that there are a number of people in nz as yet undiagnosed.

Augmentation and withdrawal are hellish aren’t they.

[Rayme in reply to Mongolia2020]

it seems you and I started methadone at a similar time, early this year. My GP took a bit of convincing, very helpful now! I never took any dopamine agonists, so no augmentation but still severe. Only took cannabis with THC. Also have had lifelong RL, as did my mother. It got worse after a hip injury about 3 yrs ago. I agree, there are likely a number undiagnosed in NZ. This forum is amazing.

[Mongolia2020 in reply to Rayme]

I started on methadone in Feb on 2.5 mg starting dose then At 5 mg got significant side effects so had to slow down the increase. Have gone very slowly up to 7.5 mg and now sleeping 7 hours approx but very broken with breakthrough RLS symptoms and very sleepy during day. Heat rate is very low and I need to lie down after eating. Have morning or afternoon sleep, or both, usly about an hour. Going to bed around 7 pm as I am so tired, but then broken sleep all night and have to get up and do 30 squats usly twice in the night to relieve symptoms. Reluctant to go to 10 mg as I’m already so sleepy all the time. While methadone has minimised symptoms and I can now sleep, I can usly only manage one “event” for the day ( which might be as exciting as going out to get the groceries). I feel like a 75 year old, but I’m only 61, and up till last year was very active - horseriding, trekking, skiing, biking - now I don’t feel I can do any of it.

I’m not sure where to go from here, or if I just need to accept that this is my lot.

[Rayme in reply to Mongolia2020]

hi Mongolia, I feel your pain, similar to mine. Also loved being active even with untreated RL and 3-4 hrs sleep could manage long bike rides and walks, traveling, hrs of gardening, now just 1 main thing a day, you describe it well, fatigue, day sleep. I find the methadone affects me this way even on 5mg. Reluctant to increase due to the tired feeling. Still breakthrough RL and up 2x at night but more sleep, about 6hrs. I'm considering alternating with cannabis 3mthly but not confident to try just yet. I do think I have to accept where I'm at just now...no real alternative...will look for the best in each day and see what it brings...

[Mongolia2020 in reply to Rayme]

Hi Rayner, I tried cannabis and it did not work for me. I have read on this or another forum that it works for some, not for others, and for some it works for a while until it doesn’t.

Because methadone has such a long half-life, and because of withdrawal, you might find it quite tricky to trial cannabis with the increase in symptoms you are almost certain to have if you try stopping methadone.

Further, it can take 3-4 weeks to feel the full effects of cannabis, so you could be in for a rough ride!!

[Rayme in reply to Mongolia2020]

I think you are likely right about that, and currently can't imagine even attempting it!

[LotteM]

Difficult to say. Methadone has a fairly ling half life, but not as long as buprenorphine AND it has high interindividuality. So it is a wild guess. Nothing may happen, or mild RLS that you can walk off in say an hour or so, or severe enough RLS to stop you from getting sleep until early morning. Are you staying one night only?

I realise I am probably too late with my reply and you already made you choice. I hope it goes well?!

[Rayme]

hi Lotte, thanks for your reply. I have decided to head home...can't face the possibility of horrid RL. I've only been free of RL for 3months and the relief is so profound that I'm not willing to let it go for even a moment! I like youyour comment 'it has high interdividuality'. One day I might test it, see how it goes on reduced dose, or none at all...then alternate 3mthly with cannabis. That was my original plan...will see.... Thanks again.

[Mongolia2020 in reply to Rayme]

I tried cannabis. Didn’t work for me, but then I think that has high individuality too

[LotteM in reply to Rayme]

That is a good plan. Try it some time at home when you have the ‘escape’ of you normal dose if it doesn’t work out. If you do, prepare mentally and be ready to have for example one sleepless night with bearable symptoms. If the symptoms really go wild, cave in. There is no need for torture.

[Rayme in reply to LotteM]

thank you lotte, I like that plan too...as I've only on methadone since January I'm still not ready to try letting it go for a trial run but I could learn something from a trial, the cannabis edibles did work well for me for 6 mths in the beginning and it was very pleasant for sleep too, and no side effects. I'll get brave one day and try test it😊

[Renaul]

I forgot my buprenorphine one weekend and I had the worst 3 nights of my life. Going home was not an option and I felt insane, could not wait to get home and dosed up.

[Rayme in reply to Renaul]

wow Renaul, that sounds truly horrible, and for three nights, an eternity. So it wasn't only RL, is was withdrawal also?. I think I'll put some spare ones in my bag from now on!

[Gosask]

I would like to reply on behalf of my husband who has suffered with rls for at least 30+ years and yes he suffered through augmentation with prampexil. I generally read these posts in the middle of the night when he is up walking around. I read and follow this site as well as the rls society boards. We are from Canada and have found it incredibly difficult to get treatment and information so we find the information provided here particularly useful and supportive so thank you to everyone

My husband started methadone about two years ago - as far as we know he was one of the first in our province. Special approval was required to give to him for this purpose. He found initial success with methadone (he is also on gabapentin currently 900mg) As time went on with methadone he had become increasingly frustrated with crazy itching as a side effect but also another interesting side effect which I discovered on the rls message boards - alerting. He would take his methadone and be extremely tired get into bed and then be wide awake for hours. So we decided to try taking the methadone much earlier in the day. He currently take 7.5mg of methadone usually taking the first split dose at around 4:00pm followed by gabapentin at 5:00 then second methadone at 7:00 then final gabapentin at 8:00. In the fall of 2023 when we started trying this earlier in the day approach for methadone he actually had some of the best symptom - less (although not completely free) nights he has ever had since augmentation In January 2024 after doing nothing different he suddenly started having more and stronger rls symptoms and it was like he wasn’t taking anything at all so we are back to experimenting with timing again. So far we haven’t found the answer to consistency as my husband says it’s just degrees of bad

So my answer to the question of changing the timing of methadone is that for us it was actually beneficial - for awhile. I read on the rls message board that some people actually take their methadone in the morning and afternoon. My husband does take a slow release iron and I would like to post separately at some point about some other general questions of his treatment but suffice it to say treatments and options available to others are not available to us here ie iron transfusion.

It feels hopeless for us all sometimes I am glad this site exists to provide some answers and support

[707twitcher in reply to Gosask]

Gosask:

I use buprenorphine, not methadone. But I think 7.5mg of methadone is too low a dose for most people. The attached study refers to an average dose of 15mg. I see that GardenGal1 below uses 40mg. Unfortunately a higher dose will likely trigger worse side effects. But maybe worth a try? And I don't know why you would need to split doses? Has he tried taking it all earlier in the day? With a long half-life, he could maybe take it at noon and still get the night-time coverage needed. There is an interesting (and controversial) thread today by DesertOasis about Tramadol. Many others on this site say to avoid it as it is the only opioid that augments. But augmentation on Tramadol is rare according to DesertOasis. In any event, it is likely to be more acceptable to some doctors than buprenorphine. (I assume you have mentioned it but your doctor won't prescribe? If not, I'd try that to see if the side effects are better for your husband.) I think we all struggle with meds - trying to balance the trade-offs of RLS relief with the side effects. So experimentation seems like the best way to find what works best for you.

pubmed.ncbi.nlm.nih.gov/155...

The link below gives you an opioid equivalency chart, so if you try a different medication, it might help establish an appropriate starting dose. It's a little hard to understand. But I think it basically says that 1mg of sublingual buprenorphine gives you the equivalent of 30mg of morphine or hydrocodone. For Methadone, to get that amount of equivalent medication, it would be 30/4 = 7.5mg (what your husband is currently taking). For Tramadol, the equivalent dose would be 300mg. This equivalency chart focuses on pain relief provided, so it's possible RLS effects may be different. But it's at least a starting point.

communitycarenc.org/sites/d...

I've also not seen here any mention of extended release iron. Maybe start a post asking if people use it. It's possible that it may be problematic? List any other medications that your husband uses to see if there are any other triggers that he may be using.

[SueJohnson in reply to 707twitcher]

There are slow release irons.They release the iron in the intestine which bypasses the area where it is better absorbed.

[GardenGal1 in reply to 707twitcher]

I had serious augmentation with Tramadol. That was the only time the RL caused really severe pain in my shoulders and arms, which went away as soon as I quit taking Tramadol. Not fun!

[DesertOasis in reply to GardenGal1]

Hi GardenGal, do you recall when you stopped the Tramadol if your RLS was better, worse or the same as before you ever started the Tramadol. What were you prescribed immediately post tramadol?

[Rayme in reply to Gosask]

that's very interesting and thanks for your reply. I know that apparently people don't augment on opioids but maybe we can develop tolerance? Do you think that has happened with your husband now? Or maybe his RL just got worse for another reason. I wonder if anyone on this forum has been on opioids for more than 10yrs? Or if anyone else has had to increase there opioid dose a few times? I suppose I'm fearful of being worse of in the future (unimaginable really, but the DA's were once considered amazing too). The info in your reply has been helpful and I'll keep it in mind should things change for me.

[SueJohnson in reply to Rayme]

Tramadol is the only opioid that can cause augmentation for some.

[Gosask in reply to Rayme]

Rayme - who knows what causes the changes right? I have googled so many things - moon cycles low pressure systems cold weather hot weather spicy foods you name it something seems to trigger it. We try to do the same thing everyday and night and then "wham" something make it goe off. It is so very very frustrating as you all well know. I do have an interesting update at the bottom of this message though.

Will try to reply to all comments from this stream.. My husband was advised to split doses of the Methadone from the original prescribing neurologist.. my assumption is that you get longer lasting effect rather than taking it all at once - just like Gabapentin is split up. As far as increasing the dosage - we have tried increasing Methadone to 10mg, and no more relief was provided, just increased side effects (itching is his number one complaint) so not sure why we would go any higher than that.

My original reply to Rayme was to show that taking methadone earlier in the day or at different times, may not have as much as negative effect as you think but rather for some - maybe even a positive, as described also on the RLS.org message boards. (I noticed someone above asked if have we tried taking earlier in the day - YES - that's why I had replied to Rayme)

At this point we do not have access to buprenorphine so Methadone is the drug of choice along with Gabapentin for him. He did try Pregabalin but had some side effects from that also. Went back to Gabapentin.

He takes slow release iron as the regular iron is very hard on the gut - and he also suffers from Acid reflux which leads into another discussion I suppose about alternatives to Lansoprozole which is what he currently takes. Gavison is not an option it does not work for him.

He would never ever consider Tramadol if any possible augmentation possibility - after going thru the hell of Augmentation with Pramipexole. At the time he augmented he quit cold turkey (did his own taper off) without any drug support because at the time no one here really knew about Augmentation and we were on a 1 year wait list just to see a Neurologist. We just knew that the Pramipexole wasn't working anymore and he had more than maxed out on his dosage. Even taking Methadone was a huge leap of faith the neurologist had to convince him that it was safe to take. I am not interested in any statistics or reports about Tramadol - Thank you in advance!

As an interesting update, after a very bad past week of sleep - this is now the following drug plan he has tried which has resulted in two 8 hours of sleep without interruption:

5mg Methadone at 3:00pm

600 Mg Gabapentin at 5:00pm

2.5mg Methadone at 7:00pm

300 mg Gabapentin at 8:00pm

300mg of gabapentin at 10:00pm *** for him this seemed to be the catalyst as we have tried taking the extra 300mg earlier in the day also - he is taking this last dose right before he gets into bed. I am curious to see what Sue Johnson and others think of this as I respect and have followed your advice a lot!

Fingers crossed this is going to work for us now at least for awhile.. This condition requires such an individual approach - I don't want to say this would work for anyone else - but what we are learning is to at least try some different variations maybe within the boundaries..

[Nikos64]

Glad you were able to take your dose and avoid the suffering!

I’m not trying to lecture you but this should be a “wake up call” for you on how to manage these medications. You should always be aware of where they are and keep them secure at all times. I too take a highly controlled substance to treat RLS but I only need it at night. During the day it is locked up in a safe so if someone I don’t know well comes to my house (for example a contractor, kid’s friends etc) they have no access to it. When I travel I place this medication in a special pocket of my computer backpack which stays with me at all times. My backpack even has an Apple AirTag in it as an added precaution. The last thing I need is to lose this medication especially when I’m away where I cannot refill it or risk having my prescriber consider me a drug seeker because I asked for a refill. Also in the U.S. many pharmacists refuse to fill out of state (valid) prescriptions for schedule 2 controlled substances.

As far as dealing with a missed dose I think I’d have to resort to staying in a hot bath and dealing with the withdrawal symptoms and rebound RLS that way. I’d probably get some cannabis since that would provide some temporary relief. But taking that also puts me at risk of breaking my opioid contract since I get randomly drug tested due my doctors office policy. So you can see why I guard my prescription medicine so carefully.

Good luck!

[GardenGal1 in reply to Nikos64]

Just a note about cannabis and drug contracts. Methadone is the only thing that helps my RLS symptoms . I need 40 mg. over the course of each 24 hours. I decided to try cannabis, so my doctor added it to my drug contract, so that when she does the random drug testing required, it is explained. I got a medical marijuana card, but have found the delta 9 and CBD available without the medical marijuana card to be as effective as with. Some months are always worse, pain-wise, than others....like Christmas month. A lifetime of dealing with RLS hasn't given me any helpful information, other than knowing that stress drastically increases the pain I have.

Best wishes to all of you/us dealing with severe RLS,!!!

[Rayme in reply to GardenGal1]

I so very much agree Gardendale, stress makes it worse for me too! I try to keep a steady balanced lifestyle, not always easy though. In New Zealand medical cannibis was finally legalized., it is a pleasant and easy add on for RL, or intermittant use, which is what I'm aiming for. Thanks for your reply. All the best.

[Rayme in reply to Nikos64]

hi nikos, yes, so agree, it was a learning curve, meds are kept in a safe place at home but need a plan for being away. It would've been a serious problem if I'd been a long way from home! What a relief to have my dose again. And getting some cannabis is not so easy at short notice either. I'll be way more careful. 😊

[TheDoDahMan]

I'm on 10mg methadone per day. I often split my dose at 7.5 and 2.5. If I forget to take the second dose, i'll wake up early - so you were probably right to drive home, thus avoiding a restless night.

[Rayme in reply to TheDoDahMan]

hi DoDahMan, when I first started to consider opioids as an option over a year ago, you were very supportive and positive about methadone..I appreciate your advice of that time because I didn't know if I should try it but had no options left. Thanks!!! It has been a huge relief, I still worry a bit about taking it, but it'it'a minor worry now. All the best!