What to take after Methadone - Restless Legs Syn...

Restless Legs Syndrome

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What to take after Methadone

McClintok profile image
15 Replies

I have been on Methadone for about 3 years and though it works well the constipation was so bad, I finally came off of Methadone and want to go on a drug that isn't an opiod. Does anyone have any suggestion. Been on requip, Mirapex, gabapentin and wondering what will work? I just cracked my femur and had surgery and the RLS is irritating the held out of surgery and on top of that I am getting so many leg cramps. I'm 85 and need help. Its like I have no life any more.

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McClintok profile image
McClintok
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15 Replies

Good evening, McClintok. Sorry that you are suffering so. Though I have not been on Methadone, I have, over the years, taken other opiods (codeine, hydrocodone among them) to relieve RLS. My understanding is that if a person experiences certain side-effects (e.g., constipation, itching, etc.) from one opiod, there is a reasonable likelihood that they will experience substantially the same side-effects from others.

Last week, I brought with me to my latest physician a list of those many RLS medications that I have taken over the years. Though I no longer will be able to refill my Rx for same because I refused to sign a pain management plan (PMP), my list had a comment next to the entry for "tramadol:" "Best of the lot, but...." The but noted that, in my case at least, its discontinuance induced idiopathic RLS. Consequently, I now am experiencing both idiopathic RLS as a reaction to the discontinuance of the very medication that I was taking for primary RLS.

I am not a doctor and cannot recommend anything. However, if you have no issue with a Pain Management Plan, you might wish to discuss with your doctor whether tramadol is an alternative. Note further, however, that though I and others found it to be among the most effective Rx for RLS pain and discomfort (drugs.com/condition/restles..., its potential for pain relief generally appears to be only a small fraction as effective as Methadone. Some comparative info may be found at: drugs.com/compare/methadone...

As I titrate off tramadol, I now am recommencing pregabalin. Though I hope that it is a worthy successor, I understand that pregabalin takes weeks or even months before its full pain relieving qualities take effect. As you are in need of immediate relief, it may be of limited utility to you at this time, but it is an option to consider for long-term relief.

Be well.

McClintok profile image
McClintok in reply to

Thx for reponding. I don't want to take an opiod. Pregabalin (Lyrica) is a controlled substance so my doctor won't prescribe it. I need to get off and stay off of all narcotics. I have been taking 2 xtra strength tylenol (500 mg each) and it has been helping. Methadone was great, but as I said, I couldn't put up with the constipation.

in reply toMcClintok

Good morning, McClintok. I also do not want to take any opiods for various reasons that I discussed elsewhere in detail. Your reply reminded me of something that I had overlooked: Tylenol.

Are you familiar with "Advil Dual Action"? It is a combination of Tylenol (acetaminophen in US/paracetamol in UK) and Advil (ibuprofen). It was found that, when combined, lower does of each relieved certain types of pain greater than higher doses of either (whether alone or in combination). The amount of Tylenol in each tablet is 250 mg v. 500.

I mention this because, prior to experiencing DAWS (Dopamine Agonist Withdrawal Syndrome), I had made what I believed to have been a startling discovery: though neither aspirin, Tylenol, Advil, etc. relieved RLS discomfort when taken individually, I found that 2 Tablets of Advil Dual Action were as effective as 1 x 50 mg Tramadol. Even though DAWS is mostly behind me, the Advil Dual Action doesn't appear now to be quite as effective, but I do believe that it continues to offer some relief.

For a time I experimented with taking one or two tablets of Tylenol contemporaneous with one or two tablets of Advil (ibuprofen). However, I was too fearful of the long term side effects of the higher doses, when used daily. [Note that the "maximum daily dose" for Tylenol and for Ibuprofen when taken separately appear different from the maximum daily dose for the Advil Dual Action. Again, that's another story.]

Lastly, in the off chance that you are not aware (excuse me if someone mentioned, but I didn't see here), depending upon what one's brain's iron store is, an iron infusion appears to have produced prompt and favorable results in some, especially those with a lower than normal brain iron content. I defer to other to go into greater detail on this.

Hope this helps. Be well.

SueJohnson profile image
SueJohnson in reply toMcClintok

He was willing to prescribe an opioid but not pregabalin which is a controlled substance. Unbelievable ! Print out the section of the Mayo Clinic Updated Algorithm on RLS which indicates pregabalin is the first line treatment for RLS at Https://mayoclinicproceedings.org/a... and show it to him. Although you had problems with gabapentin, You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

SueJohnson profile image
SueJohnson

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

SueJohnson profile image
SueJohnson

What happened with the gabapentin that you stopped it?

McClintok profile image
McClintok

I looked like I aged 20 years in two weeks. I hallucinated and did weird things and my wife said no more gabapentin.

SueJohnson profile image
SueJohnson

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

Nikos64 profile image
Nikos64

The comment about Tylenol and ibuprofen is very interesting to me. My mother has RLS and apparently I inherited it from her. She once told me that Tylenol and ibuprofen works for her. Granted this is more anecdotal than evidence based, since it is not an “established” medication for RLS but perhaps it is worth a try. Of course one needs to also be concerned about long term effects on the liver and kidneys from these OTC drugs

kcraig profile image
kcraig

I've tried Gabapentin for RLS and nerve pain. Useless for both. I was on Ropinirol for about 3 years, but the nausea was rough. I could only take it before to bed so I could (kinda) sleep through it. I finally found a Dr, that cared and he did a sleep study. I was still having leg movements during the night that was preventing decent sleep. What kept me constantly worried is that Ropinerole (and the other Dopamine antagonist drugs) will, over time, actually make RLS worse. He tried me on Methadone (5mg) and it was a Godsend. It's been about 4 months now and the only episodes I've had have been self inflicted. Eating (especially dairy or sugar) after 6pm is a trigger for me.) I can sleep 10hrs a night where I was lucky to get 5 or 6 on Ropinerole. I had to take Miralax for constipation for about 2 months and I guess my system adjusted to the Methadone. I hope you can find a treatment that you're comfortable with soon. People that has never experienced RLS, mine was pretty severe, have no idea what suffering really is.

Shumbah profile image
Shumbah

The problem with methadone is the half life is 46 to 60 hours . That has a massive impact on the bowel .Methadone hangs onto a large amount of receptors.

Sadly opioids held the best results.

I have had sluggish bowels my hole life so I here you.Nothing like impaction it’s horrid

Still opioids HOWEVER not as harsh , hangs onto less receptors, also has formats with way shorter half life which is the biggest issue with methadone.

The following are an opioids

Temgesic 5 hr half life

Depending on your RLS if it is only night Temgesic maybe enough only a 5 hour half life.

I take .2mg Buprenorphine for 24 hr a day symptoms.

Both of these you can break into lower doses DONT TELL YOUR DOCTOR they hate us playing with doses.

For instances I have taken less than quarter of my dose in last 24 hours .I put the rest aside in a container.

I have never ever exceeded my dose.

Miralax is safe laxative can be taken daily if needed I only draws water to the bowel.

I find 2 Magnesium Fotre nightly is mostly enough for myself.

I hope this is helpful

What country do you live in ?

Tabookitty5 profile image
Tabookitty5

I assume you have already tried using magnesium supplement for the RLS? I’ve read it can be deadly if over-used here. But I use it for RLS and have my dr add it to labs and I’m not showing an abnormal amount in my blood or anything. It’s most helpful as a “knee jerk” treatment, pardon the pun. I use a minimal dose daily and I keep it by the bedside. Not all nights are RLS in my case. It also helps relieve constipation. Of course, I’m not a dr and I’m certainly not qualified to give medical advice.

GuillaumeL profile image
GuillaumeL

I've been taking Methadone 5mg for a year. In my case, the inevitable constipation was completely relieved by taking Laxaday (Polyethilene Glycol) every morning. It's an over the counter drug in Canada, but it's being reimbursed in my case. The powder simply keeps moisture in your stools making your bowel movement easier. It's stays in your bowels, it doesn't go in the rest of your system. Where you taking something similar?

Nikos64 profile image
Nikos64

you may want to try high CBD cannabis edibles if they are legal in your state.

spacytracy profile image
spacytracy

I have rls an I have been on requip for 3 years now and it has been the best one for me and I have tried 4 others and so as for me I recommend it. Best of luck.

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