Opioids

[RLSdaily]

Have been following posts, have studied Mayo Clinic, been back to rlshelp.org Have read Dr Earlys research , follow several Rls groups . I have done the DAs (unfortunately) The side effects of Gabapentin and Pregabalin far out way the benefits. Iron is good, I get infusions as needed. I use Magnesium oil- I watch diet, mild exercise seems to do best. Have used compression dvt devices. I take limited medicines or supplements. No other health issues.

---- A month ago, my neurologist and GP agreed a trial of Tylenol 3. 1 before bed, this is progress for them. I started with a half, so 15 mg codeine. Ah ok nothing so increase to 1 at bedtime -so 30 mg - 30 minutes before I get in bed. No difference x3nights then pure peace a FULL 8 hours of sleep..... now it's been hit or miss- some nights it mellows the RLS and some nights I am wide awake ( not even sleepy) always up and down out of bed. I stretch. I sway. I leave my bedroom walk around the house. Let the dogs out. Cold soak. Hot soak... you know all the tricks.

Anything else I can do ? I follow up end of the week with GP. ( he tries,he is somewhat up on RLS ,he does listen)

Any info on Valerian root( other than vivid freaky dreams) or Tryptophan?

Thank you

I am fortunate my husband is a sound sleeper. I am also envious when I watch him sleep. 🤣

RLS - PLMs for 30 years- 52 yo Female- US- active, overall good health

[ChrisColumbus]

As you'll see in the Mayo Algorithm "doses of 30 to 90 mg of codeine, in combined preparations with acetaminophen, or 50 to 100 mg of tramadol can be taken before bed or during the night....the usual effective total daily dose of codeine is 60-180 mg". So at 30mg you're still on a starter dose.

mayoclinicproceedings.org/a...

[Joolsg]

You say you have PLM, but most people do not wake with PLM. It sounds like you have RLS and it is waking you and causing you to walk around.Treatment is the same.

As a small dose of codeine helps you, opioids would be a suitable treatment.

This is a UK help forum, run by RLSUK, but we do have lots of members from the USA and know quite a few good doctors.

Has your neurologist suggested methadone or Buprenorphine? Both are highly effective at low dose.

Dr Berkowski, who operates out of Ohio and Florida, now treats patients with Buprenorphine.

I have tried every supplement/device recommended on here and the only medication that has helped me is 0.4mg Buprenorphine.

[RLSdaily in reply to Joolsg]

Thank you for reply-

Yes it's the RLS that wakes me or more so keeps me from sleep.The toss and turning all night and jerking or twitching, involuntary movements of my legs is RLS . The PLM is just a medical description.

Augmentation from DAs definitely increased the twitching or jerking or PLM's

I am happy to be past all of that.

Yes, I am in the US and I do know this is a UK page. However, I feel the information is at most helpful than any other page I have ever been on.

[Joolsg in reply to RLSdaily]

I do know several people who are med free after iv iron infusions.Iron therapy is first line treatment now.

You could well be someone who responds very well.

If iron infusions don't help ( it can take up to 6 weeks to see a result) you can then consider asking for methadone or Buprenorphine.

Iron infusions and Oxycontin and pregabalin didn't work for me after I stopped Ropinirole.

I now sleep 8 hours every night on 0.4mg Buprenorphine.

[RLSdaily in reply to Joolsg]

Thank you

I hoped I would be lucky with the iron infusions

I have had several with no luck with relief

[Joolsg in reply to RLSdaily]

It is such a shame that we weren't given iron infusions as first line treatment.Like you, iron infusions didn't work for me. Nor did pregabalin.Dr Buchfuhrer and Dr Berkowski are of the opinion that years on dopamine agonists cause permanent, irreparable damage to dopamine receptors and that's why iron infusions don't work for us.

[nocturne]

I take codeine-acetaminophen 3 almost nightly. It usually kicks in about an hour later, but when the RLS is very severe, it takes longer, or rarely, not at all. Sometimes, it gets rid of the RLS, but I will be wide awake. Since the efficacy of the tablet wears off in about 4 hours at most, I've taken a second pill in the middle of the night on rare occasion if the first one didn't do the job. But after 3 am, there's not much I can do, since I need to get up and go to work in the morning. I'm afraid this post is unhelpful, other than to commiserate with you and validate your observation that it's unfortunately not a magic bullet. Unlike you, I've never had 8 hours of uninterrupted sleep, but this medication has been a godsend, and the best thing for my RLS, after trying gabapentin, magnesium supplements, homeopathic remedies, and various cannabis products with no success. Best of luck to you. Please share with us if you find something that works better.

[Dotmowatee]

I am on a slow release opioid (Oxycontin ) which works well for me overnight. My GP is very happy to prescribe it.

[Retiredlady in reply to Dotmowatee]

I am also on a slow release opoid(Targin).

My sleep specialist prescribed 10mg which I take 1 hour before bed.

I also take 150mg Pregabalin ( 75mg at 8pm and 75mg when I go to bed about 11pm.

I find it generally helps me get through the day but I still cannot nap or relax as my RLS comes back with a vengeance.

My symptoms are particularly bad between 7-10pm as my body is craving it’s next opoid hit!

Good news is that I am still better now than when I was augmenting on pramixerole last year.

[Retiredlady in reply to Dotmowatee]

Do u need to take another slow release opoid in the morning to help u get through the day??

[Dotmowatee in reply to Retiredlady]

I am still on a low dose dopamine agonist which I am trying to reduce and don't need the opioid until the evening.

[LotteM]

Your dose may be too low. And to reduce the chance of side effects, you may need a stronger opioid. Check the Mayo Clinic algorithm for effective ones and their doses.

[RLSdaily in reply to LotteM]

Thank you

[Kakally]

As Joolsg says …

Maybe try low dose methadone or low dose buprenorphine. I would love to hear how you get on with methadone if you get to try it. Though it obviously doesn’t suit everyone, it seems a great choice as there’s no chance of augmentation and if it suits you, you stay happy on a low dose for years 👍🤞🤞🤞🤞🤞🤗. I’m in the uk and would love to try it but we cannot get it prescribed unfortunately

Best wishes kakally

[TheDoDahMan]

I'm in agreement with previous commenters who feel that methadone or buprenorphine are superior meds for low-dose opioid therapy. It's because they have longer effective half-lives. And for 5 years, I've never needed to increase my 10mg/day methadone dosage. I sleep 9-10 hours now, instead of 2-4 hours before methadone.

[RLSdaily in reply to TheDoDahMan]

Omg my jaw dropped as I read 9-10 hrs

That's so awesome. I am envious.

[TheDoDahMan]

So you're not in a position to request low-dose methadone therapy?

[RLSdaily in reply to TheDoDahMan]

I have an appointment coming up and I am going to discuss methadone. I do believe I can get a script. It's a process for sure.

I would love some sort of natural remedy, ( it doesn't exist) I aim for medication, something short acting as needed low dose so I could have more control over the side effects so to speak. I am medicine sensitive, I do not need much, I hate the sedate feeling. Very aware of the sensations I guess. I have felt like a test rat on many meds. Done the DAs , benzos, Pregabalin, gabapentin, catapres,

Iron, magnesium vitamin B of all flavors Vit D, you name it I have given a go

Years ago did Xanax Ativan clonazepam

I am active, work full time survive on little sleep which causes more RlS, anxiety and irritability. Ha ha

[Typicallygaslit]

Anything that raises serotonin is usually a RLS trigger and that includes supplements such as Valerian and Tryptophan. I remember trying Valerian thirty years ago and wondering why it didn’t work, I just took more and nothing happened. I now know it just agitated my system even then. Same with anything else that’s supposed to get people to sleep (since we have the opposite reaction.)

[RLSdaily in reply to Typicallygaslit]

Thank you I figured

[SueJohnson in reply to RLSdaily]

For some Valerian helps, for others it made RLS worse as Typicallygaslit said