I seriously need help-each time I find a doctor to prescribe Methadone, they give it to me for a short time and then state they can no longer do so. I cannot live with this monthly terror...the current doc said I have one month to find someone else, as his clinic is being monitored.
Today I had a new doc appt. and took an Uber an hour away...only to find out they would not take my insurance and knew little about opioid therapy anyway. This doctor works closely with the Northwestern Hospitals doc who did an opioid study with Dr. Winkelman. I thought for sure he would be helpful!
I already know I will go through horrible withdrawal from the Methadone, as a few months ago I had the worst night of my life, even on the low dose of 10 mg.
This situation is actually FAR WORSE than what I went through on the DA's.
Withdrawal from Methadone causes SEVERE RLS all over your body. If you take the DA's to get through it, they will not work.
I just have no idea what to do but I know I have to taper off this Methadone. It has worked well but it is not worth the fear of withdrawal AND also worse RLS. I have 30 pills to go.
Does anyone know how to taper off of it? Thank you very much for any advice you have!
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TeddiJ
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Again looking over your previous posts I saw you were going to try CBD capsules. What happened with that? And did you ever try Pregabalin? And why didn't you like gabapentin?
I did try those and they didn't work. But, now I also know that methadone withdrawal gives you horrible RLS. So i just don't know WHERE i stand. this is just a big mess. I did not like gaba as it gave me eye issues and headaches. it also didn't help. Have not tried Pregabalin.
You may have to turn to a rehab clinic or something like that for advice. At least taper down from the 10mg to lower doses. I think methadone also comes in 2.5mg pills .
It is no good news. And I understand. I am on the last day of a week without my buprenorphine patch of the lowest dose, and I also experience withdrawal rls (daytime symptoms and also other body parts). I took kratom 1 teaspoon 3x daily to deal with it, but it has the same downside. For me, the point was to assess whether my listlessness is due to the bup. But I don't have the perseverance to continue. And I think what I experienced this week is far less than what you have to go to on stopping the n my methadone.
and best of luck to you, too. I, too, would like to see where the RLS is and my energy level is without peering through the lense of a meth withdrawal. I wish I had never started this route and I would rather be back in bad DA drug land. and that is sad. i was so excited to get off the DA's and I thought my problems were over. ha.
anyway-thanks so much for your info and good luck long term!
You may not have have taken enough gabapentin if it didn't work. How much did you take? Headaches can be managed (and are better than RLS symptoms - right). What kind of eye issues did you have?
This may be what worries me the most about starting on an opioid. We end up becoming dependent on doctors that may retire, or we have to relocate and then we are left hung out to dry. Are you a member of the RLS foundation? They have a healthcare provider section that is broken down by State, if you want to continue to pursue a methadone prescription. You may need to call around and find a sympathetic neurologist. I can't imagine trying to go from methadone to anything except another opioid. Some folks use kratom to get through tough spells like this. I'd love to see a list (or two - one for UK and US) of doctors open to prescribing opioids.
A list like that would be invaluable! How would we go about making one? My prescriber is Dr. Buchfuhrer of Downey, CA. I worry every month that he may retire. Anyone else willing to add their prescriber?
Dr. B also has his doctor daughter on board, I believe, so she might be your backup. Or she at least understands. He isn't that old yet, either, if that makes you feel better.
I live in NV, thus have a 10-hour round trip drive to see him. I think he's seeing fewer patients since the Covid. Have you made an appointment with him yet? Is 30 pills a 15-day supply?
However, apparently I've had better luck with kratom than you. It saved me for many months before I was able to secure the methadone prescription. I finally did build up a tolerance to kratom, but while it was working, it was anything but a disaster. Did you have a reputable online supplier for kratom?
I used: "mitragaia. com" for years. They are highly reputable and sell it for 8-10 cents per gram if you buy by the kilo. The "Red Borneo powder" seems to be the favorite of RLS sufferers. One teaspoon equals approximately two grams.
Oh, that is so helpful. 30 pills is for 30 days, so I have a month to figure it out. I haven't tried Kratom and only heard about it here-you might have read someone else's post. I haven't started looking for it so this info really helps, especially since you were somewhat in the same boat. I haven't yet called him for an appt as I was hoping to find someone in or near Chicago. I have emailed with him, as mentioned. Thanks a ton-I think I will order that and try it out. I don't think you can combine it with methadone though, correct? As in-tapering down using both?
Yes, he can prescribe out-of-state. The question is whether your pharmacy will fill the script. Pharmacies are not required to fill anything they don't want to, and because of the opioid panic in this country, it might be hit or miss, depending on where you go. If you already have a pharmacy that has filled an opioid prescription for you, you're probably OK. Also, pharmacies have to follow the laws of their own state, so check with the Illinois State Board of Pharmacy regarding out-of-state opioid prescriptions.
Thank you, Fatniss. Yes, it is terror! I am sure many feel the same as I do. My unlucky problem is that I have had 2 doctors bail on me in only a few months! I do belong to RLS.org. the only doctor listed in chicago will not take new patients. just fab. another one listed for the suburbs will no longer prescribe for me because he is being investigated.
Getting off of methadone was hard for me too. I did use marijuana (legal here), both THC and CBD and they helped some. I don't know about if you can start Pregabalin while you are coming off of it, but don't think because you don't like Gabapentin that you shouldn't try it. Works for me -- and Gabapentin made me too depressed to tolerate. Good luck.
THC is legal here, too. But, you do have to smoke it for it to work and it only works very short term. I only tried the gummies and not into smoking and hurting my throat and lungs. thanks for your info!
My sense is the only way is to get someone to help you do it with Suboxone. Not sure if it’s possible and it’s probably not a long term solution. My husband will need to do the same at some point to get himself off oxycodone. Just my thoughts I’m sure somebody else has suggestions too.
Thank you. The problem is just finding someone who will even understand opioid therapy. I live in Chicago and you would think with all of these doctors, and one doctor who did an opioid study with Dr. Winkelman-that I could find someone.
I have to 3rd the Kratom recommendation. I do not know if you have tried it, but I recommend it every time I see someone struggle. The key is to set a limit for yourself. Personally I’ve been taking 1/2 to 1 tablespoon before bed for about 3 years. I refuse to take more than that. I know it can be addictive. The I love kratom dot org website is super helpful, especially for advice weaning off methadone. Quality matters! I have had some that didn’t touch my RLS, so keep trying what works for you. This was my lifesaver. I was so depressed and sleep deprived prior to discovering Kratom. If I have to take 1 tablespoon the rest of my life I will. There is no cure, but this is close.
Glad that Kratom works well for you. Do you take any other medications with it. Which Kratom do you take and how. I've been taking 1level teaspoonful but with pregabalin and often 50mg tramadol to calm the legs. Kra tom is lega
I used: "mitragaia. com" for years. They are highly reputable and sell it for 8-10 cents per gram if you buy by the kilo. The "Red Borneo powder" seems to be the favorite of RLS sufferers. One teaspoon equals approximately two grams.
Kratom powder has a pretty chalky consistency. I've found that mixing it with a packet of Carnation "Breakfast Essentials" (used to be called "Instant Breakfast") and 8 ounces of milk makes it pretty palatable. The packets come in several different flavors and are available from Amazon. You could probably google "How to take kratom powder" and find other people's suggestions.
Do NOT order the kratom EXTRACT, as that may prove to be TOO powerful. Just order the powder. I would start with just one teaspoon (about 2 grams) rather than one tablespoon. If that amount doesn't quiet your RLS symptoms, you can increase it by another teaspoon per day until you feel it is working.
Remember that because of a buildup of tolerance, kratom is not a long-term solution; at least it wasn't for me. Others have reported that they were able to stay at a low dosage (2 to 10 grams per day) without building up tolerance. Don't be afraid of these low doses - I gradually built up to 32 grams a day (8 grams, x 4 times per day) without any bad side effects other than it just wouldn't stop my RLS symptoms anymore. I DO NOT recommend that anyone follow my experience and build up to that level. I don't know what I would have done had I not been able to secure a prescription for an opioid (in my case, 10 mg of methadone per day).
Thanks so much for the info. How ironic that I am on Methadone and can't even get anyone to help me stay on it-to the point that I am forced to try this and follow so many other dead ends. The RLS.org nurse who called me could NOT believe my stories.
I have long ago come to the conclusion that the US Drug War has caused many more problems than it has solved. But we have been so heavily propagandized that our politicians fear even bringing up the topic for discussion. It is outrageous that those of us who are on low-dose opioid therapies are being lumped together with those who have abused these drugs by taking them outside of the boundaries of safe legal prescriptions.
Absolutely! That is what Karla from RLS.org said to me on the phone! She is outraged about what I have been going through. For no reason at all. I had the urine test and can only get the prescription filled once a month. 10 mg is very low!
Yes, I did - my local grocery store has a pharmacy section and, after a bit of back-and-forth, they allowed me to explain that it was for RLS, so that I could sleep. That was 3 years ago, but I still get anxious every month when refill time rolls around.
I hear you. I have only about 20 pills left and still can't find a new doctor, in a giant city. This is why I wish I had never started it-it has made life far worse than being on the DA's. I did get an appt. with Dr. B, though not in time. Thanks for all of your info!
I actually think you're far better off for having gotten off the DA's. Tapering off an augmented situation from DA's is described as much more difficult than tapering off a regime of low-dose opioids. Especially if you don't have low-dose opioids to ease that transition off the DA's.
With any luck, you may not be in that bad of a situation, if: 1) Dr. B is willing to reinstate your methadone prescription, and 2) you can use kratom to tide you over until that happens.
So, are you planning to travel from Chicago to L.A.? When is your appointment, if I may ask? Best of luck!
Hi, DoDah. Thank you so much. It's in mid April. Yes, that is exactly my plan right now as I continue calling various locations here and around the country. The Kratom has arrived and I plan to try it tonight or tomorrow.
The Methadone tapering is going horribly. In fact, it is not working at all now. The leg jerking is super upsetting because you can't tell if it is your own RLS OR the Meth withdrawal!
Supposedly that is true but for me, the meth withdrawal is every bit as bad; your entire body seizes. You don't have all the issues of a real addiction on the DAs and the supply is always available. I have been dealing with the sweats every day, the constipation, a constant fear of running out of the drug, and the sheer hell of realizing I am already addicted. I wish I had never started it. I can't even go back to the DA's to get off of it either. It's just a fricking MESS I have created.
Thanks for listening. Things are obviously not going well.
TeddiJ Have you looked for a Neurologist who specializes in RLS? Dr Earley from John Hopkins treats all his RLS patients with opiods...he like the Methadone best. Some of his patients have been on it for as long as 15 years! A few years ago I tried to get in to see him, but they were not taking new patients but maybe, if you can get ahold of him, he could give you a few names???
Thank you LilacLady! Yes, I have spent so many hours trying to find another doctor in Chicago or ANYWHERE. It is very difficult and expensive. Of course they all treat RLS; it is the opioid piece that is so tough. I have been on Methadone since August and this is the second doctor who will no longer prescribe it.
Any doctor I have asked for names, and even the RLS.org site, has been fruitless.
Interesting about the 15 years. I would maybe be ok with that if I didn't have the monthly terror of "will-I-or-won't I get the prescription this month?"
Right now I seriously regret going down the Methadone road because the withdrawal from it is the worst RLS you have ever had in your life-even one night without it. You also can't tell what your baseline RLS is, after getting off of the dopamine agonist drugs.
Yes, the opioids work, but finding that help is fraught with issues.
Anon-hi, again. I tried to find that article about weaning off Methadone but did not see it on Ilk.org. If you get this-could you send the link? Thanks very much!
Thank you! I had already emailed with him before I found this last doctor. He basically just said I should continue on the methadone. he had no suggestions for other drugs.
Agree with the addiction potential however, many people use Kratom to come off Opiods which is exactly what doctors are prescribing us for RLS. It is controversial, and that’s because the FDA hasn’t gotten their hands on it. People are getting better without them and they don’t like it. IMO. That’s why I limit myself to 1 Tablespoon a day. I haven’t acquired a tolerance or had to increase my dose.
I order mine online, but there is a vape shop that does have OK quality. N’Joy is the brand. Online I go to Laughing Lion website. I use a Red Strain and tried many before finding what works. It is not legal in some states. I highly recommend going to the I love kratom website first though. I educated myself there on the pros and cons and made my choice. I think it’s just safer than other drugs. But MONITOR Yourself.
ps-do you know if you can mix low dose methadone (10 mg's or less) with Kratom? I read somewhere that you cannot. I'm wondering if I could use both while I tapered down from the 10 mg's...
Oh, I just asked you this question again-sorry about that. So you DID use both at the same time? How so? Were you adding the methadone in then? I definitely don't have addiction issues and don't understand why anyone would do this for FUN! omg. sheesh.
Once I was able to procure the methadone prescription, I decided not to quit the kratom abruptly, so I kept using the kratom along with it for a while. For me, there was never any question of using either of these medications for "fun". I would only use enough to allow me to sleep and didn't want to try to use them "recreationally". In my replies to you, I just am trying to ally any fears you might have that using them together might have some explosive effect that would put you in danger. At the small dosages we're talking about here, you have nothing to worry about.
Great to know-thank you for the details! Yes, I was worried that they might be bad together, especially since I read that somewhere. Also, I didn't think you were saying that they were fun-not at all. I just wanted to make the comment and to reassure you that I, too, would be taking it responsibly.Thank you!
Teddi, you can have Kratom in the house but I wouldn’t take it while tapering. Kind of defeats the point. Have you tried taking 7.5 mg of the Methadone yet? The point is to see how low you can go before symptoms break through. Then you stay at the lowest dose for a few days to a week and one night take the Kratom and see if you can use that instead of the Methadone. I’m gonna guess that you can go pretty low provided you stop the HRT. You might be one of the lucky ones that can get away with nightly fasting, iron before bed and Kratom as an emergency back up. I don’t think you ever really said what drove you to the DAs in the first place? Was it shortly after menopause and starting HRT?
Hi, LonePine! Thank you for that guidance. I haven't yet ordered the Kratom. I was just coming back to your posts, and others, to review so I can figure out next steps. Yes, I am trying to take 3/4 of the methadone and it is somewhat working. Also tried to stop the hormones but that is very difficult. I am a mess of night sweats and hot flashes no matter what I do right now. Plus I sweat from the methadone.
Interestingly, I spoke with Karla from RLS.org-she lobbies for us on the hill, etc. She is a nurse and said that that is absolutely not true about hormones and not to stop them cold turkey. We know many on here would disagree. She told me to join a webinar they were doing yesterday on RLS and to post that question. I did. Sat through the whole boring thing of info that I mostly know. They never got to my question. I was not a happy camper. I wrote and told them they should not ask you to submit a question before the seminar started, only to then ignore it. The presenter should at least respond via email, I wrote.
I had RLS as a young woman and unfortunately started to take the ROP that was lying around my mother's house. I then got prescriptions for it for years, along with Pramipexole.
Hi, LonePine. The big problem is that once you are addicted to the Methadone, you can't tell WHAT is going on or where you are. I have been trying and my whole lower body starts seizing as I try to get down to 3/4 of a 10 mg pill. Last night even the whole 10 mg wasn't enough to get me through the night.I have no idea what is the Meth withdrawal and what my baseline RLS actually is. It is a MESS and I am so sorry I went down this road.
I wanted to try all the natural solutions, especially the ones you suggested, and see where my baseline RLS was after getting off the DA's and that is now impossible.
You shouldn’t even think about tapering the methadone until you have tapered the HRT. I’m beginning to think the HRT is as bad as the anti-depressants and melatonin in terms of aggravating symptoms. The second the HRT is out of your system you should see an overwhelming improvement and should be able to taper the methadone with no where near as much problems. If you don’t get this type of relief then go right back on.
I’m not going to sugar coat it. I don’t believe the methadone is the problem. I did the math, and it seemed to me that you were on the DAs for at least 30 years. That is most likely the cause of your severe RLS when you fail to take an adequate amount of an opiate. You have to make sure any RLS doctor you see understands this. On a brighter note, I truly believe the HRT afforded you and your receptors some amount of protection while you were on the DAs and even after you stopped the DAs. I believe HRT tends to be a dopamine antagonist (just the opposite of the DAs) like melatonin and anti-depressants. That means that while you’re on theses substances your symptoms of RLS will be greatly exaggerated, but in the long run they up-regulate your receptors, which is great, albeit temporary.
Thank you! So interesting though...did you see my post about Karla from RLS.org calling me directly? She is a nurse and fighting for all of us in Washington. I asked her about the bioidenticals and she said absolutely that is not true. Then she gave me a complicated medical response regarding the hormones that I wish I could replicate for you.
I am not disregarding what you are saying-not at ALL. Just an fyi.
I was trying to stop the 2 creams but that made for horrible nights, too. Although I did feel like you had a point!
I don't think it has been quite 30 years but for sure 20-25. I'm not sure exactly when I started to take little pieces of my Mom's ropinirole before that. I have been on the bioidenticals for probably 15...? Although i need to ck that all out. I started with progesterone, of course, and not sure what age that was. I have never taken testosterone cream but use a DHEA spray every morning that converts to it.
This is all very helpful although I feel like I am in hell. Tonight I will try the newly arrived Kratom. Which I had never even HEARD of before. Omg. The hell and desperation.
I continue to call around the country and here in Chicago to try to find the right help. 19 pills to go. Thanks, again, for all of your info and help!
Yes I absolutely read your post about Karla. I know that after a few days of pure bioidentical progesterone cream my RLS is worse. I would love to be able to take it. Sex hormones and their affect on our brains is so complicated and depends on so many other factors I don’t know how she can confirm or deny it’s affect on RLS. The only thing that can be said about sex hormones, pretty much without question, is that they do have an affect on the neurotransmission of gaba, dopamine and serotonin. I have read studies that progesterone increases the neurotransmission of serotonin. That would explain my increased symptoms. On the other hand, I have read that estrogen has just the opposite effect on serotonin and has been shown to increase neurotransmission of dopamine which should actually lessen the symptoms of RLS.
It’s up to you. Hot flashes versus your body seizing. There are no guarantees. You might taper off and find that the RLS is as bad as ever. The only guarantee is that you can go right back on if that is the case. My mild intermittent RLS turned into the devil incarnate from 1mg of melatonin (a hormone) and I didn’t make the connection for years. Fortunately the iron counteracted the melatonin. When I increased the melatonin and the iron was no longer effective I did more research and finally made the connection. The day I stopped the melatonin is the day my RLS went quiet and I stopped the iron. It went really quiet. Nothing good lasts forever. Mother Time caught up with me and I am back on the iron.
What if instead of iron I had gone on the DAs? I am finding that is exactly what is happening out there in the RLS world. People go on anti-depressants (or HRT) and then the DAs and then suffer augmentation hell. It is an epidemic -this scenario. One I never realized until a few months ago. So I always tell people they must taper off these other substances before they do the DAs. I think it is virtually impossible to withdraw from the DAs while on anti-ds and possibly HRT as well.
Btw, estrogen is the hormone that helps with hot flashes, supposedly. So you can taper off the progesterone first and see if that solves both problems. No hot flashes and improved RLS. Estrogen alone is not advisable in the long run. It will not matter for a few months while you taper off the DAs. If stopping the progesterone doesn’t improve RLS then you really should think about stopping the estrogen as well.
Wait, what? You take DHEA??? That’s a dopamine antagonist last time I checked. No different than melatonin. I haven’t heard or thought about DHEA in a very long time. I think you have to stop that immediately. Once again, you probably done yourself an incredible favor by taking it all these years because if it truly is a dopamine antagonist as I recall then it will have been counter acting (somewhat) the effects of the DAs and up-regulating the receptors since stopping the DAs. But it worsened your symptoms on a day to day basis. Time to give yourself some relief from all these dopamine antagonists. I don’t advise experimenting with the Kratom until the progesterone and DHEA are out of your system. Then you can accurately assess how much methadone and/or Kratom you need.
There’s conflicting info on whether DHEA is a dopamine agonist or antagonist. For the time you were off the progesterone did you notice any improvement in the RLS? Do you still a have a prescription for the DA. If the doctor who prescribed the Methadone refuses to refill despite numerous request I would ask for Neupro and Gabapentin. Some people will disagree with me but you need something that will work until you see Dr. B. Neupro is the best of the worst.
I have plenty of ROP here and not sure if I have any PRAM. Yes, RLS may have been better off the progesterone.The huge huge problem is: I CANNOT go through another withdrawal night. I will not make it. and no DA will touch those symptoms because they are from the METH.
and that is why this is all so horrible and I wish to god i had not done this to get off the DA's.
Ok, if RLS is better off progesterone then do you have a choice? I think it’s hard to know what is withdrawal from methadone versus what is lack of dopamine coming from your 25 year DA down-regulated receptors. It sounds like no matter what you don’t want to be reliant on Methadone ever again. What I would do (and remember you’re not me) is I would stop the progesterone and DHEA, but not the estrogen and at night I would take my previous effective dose of the DA, as well as 50mg of ferrous bisglycinate, at least an hour apart from each other. Do it early enough in the evening before you get symptoms of what you perceive as withdrawal from Methadone. Then see where you’re at when you’re ready to go to bed. Are your symptoms mild enough where you can make due with little or no methadone? Rightly or wrongly so, I believe that if you’ve stopped the progesterone and you take iron and your last effective dose of the DA, then what you’re left with will be the effects of your body being denied the methadone. I would continue this process for several nights. If you find yourself getting to the point where you have reset back to the DA then I would call your current doc and give him the good news. I assume he would be more than thrilled to give you a script for Neupro, which is allegedly easier to withdraw from than the other two DAs. Plus, I guess at some point you can give the Kratom a try to see if that will cover some of your symptoms and make drawing down on the methadone easier or maybe be able to eliminate it from your regimen fairly quickly. It just seems to me like DA + iron + Kratom should really cut into withdrawal from methadone. Don’t be afraid to treat the symptoms of withdrawal with other things like Ibuprofen for head and muscle aches and peppermint oil for nausea. I also wouldn’t be afraid to call my doctor and tell him that you are trying your hardest to get off the methadone and could he prescribe a 30 day supply of trazodone. It will help with anxiety and sleep. It is not considered an addictive drug and I would start with half of a 50mg pill. In other words treat the symptoms of withdrawal with other drugs than the methadone.
Then in the not too distant future you have an appointment with Dr. B and he will hopefully have a good plan to get you off the DA and onto something like Gabapentin or Dipyridamole.
wow-this is so thorough and just what i need. ok-i am going to do this right now.THANK YOU SO MUCH for taking your time to delve into this! I just have no idea what I am doing or how to handle this!
If you’re at all like me, then you would have been in full blown panic mode by the time you took the DA. So no, of course the DA won’t make a dent against that sea of Adrenalin. It may take another day of abstinence before there is no more progesterone induced RLS. Plus I’m not positive that estrogen doesn’t also increase symptoms. I am pretty positive that it’s estrogen, rather than progesterone, that stops the hot flashes. I’m up late, keep me posted. Don’t panic. Remember, you and I are scientists first and patients second. We suffer so others may learn 😅
thank you. yes, I was going to write to say, this whole discussion started with another poster mentioning hrt and her estrogen gel making things worse. although i think she also said that she stopped the gel but not the patch she had. something like that. so it feels like i need to stop the cream, too. or perhaps taking it in the daytime would help. and just taking a tiny bit?
last night i tried the new plan but i started late. and had done the spray in the morning. my legs seized throughout the night so i kept taking more methadone, after starting with 1/2 pill.
it was SO WEIRD taking the ROP. and i can't really remember the last effective dose. maybe i should try more of that tonight.
Yes, it sounds like you might need more of the DA. The important take away is that your only withdrawal symptom was your legs”seizing” which I assume you mean to be RLS. Your fear is a return of that night where you went crazy and had all kinds of strange sensations. If your only withdrawal symptom is bad RLS, that can be tackled with the DA.
you would think that would be true but more and more of the ROP didn't work that night. not on any symptom at all. but, true-last night i didn't go into the super awful withdrawal where you are rocking and your whole body is on fire with heat and shaking.will try more of the DA though!
LonePine-are you a doctor? If not, you should be! I really think you are on to something huge here for me. I tried it all again last night. I woke up to my legs seizing and instead of taking the last 1/4 of methadone, I decided to try one more .5 ROP. It worked, even though the night of the withdrawal, tons of it did nothing.
Of course, I am so unhappy to break my streak off the DA drugs, but this is all such informative and interesting news for me. To realize I may not be so addicted to the Methadone is a huge relief, if that is true. Although how to deal with the hormones and thyroid issues...I can't even imagine how that will be possible. And the night sweats and hot flashes were awful. I almost caved and put the cream on, as that is quite miserable to be soaking and on fire. Omg-my life right now!
Tonight I will try again and take just 1/2 methadone (5mg) and more ROP.
I’m not a doctor. Hopefully someone else will chime in here with some ideas about a stop gap measure until you see Dr. B in April. As you know, the problem is that you run out of methadone before your appointment. I would like to see you contact your current doctor and see if he will prescribe Neupro which I believe is the best of the three. I’m not sure what the equivalent would be, but I would like to see 2mg patches with no more than 3mg ever. Either way, I would limit myself to a certain low amount of a DA and 5mg of methadone (eventually going down to 2.5 mg) and if you wake-up with RLS then get up and walk around and see if it will pass on it’s own rather than taking more of either drug.
I would also call your gynecologist and ask his or her advice about the hot flashes. You have no choice about the thyroid medication - you must take it. However you can see if anyone on here or your endocrinologist knows which one is best.
Thanks, yes, it remains to be seen how low I can go on the Methadone. Of course I only have a couple of weeks left of it. I am calling his office on Monday.I will try your suggestions the next few nights even though it feels so sad to go back to the DA's. And the night sweats.
As I keep saying, "and what fresh hell is this?!"
But, thank you so much. You, and a few others on here-are wildly smart!
I just make sh-t up as I go along. I truly believe that the HRT you’ve taken for the past 15 years has greatly preserved your receptors. Plus you have more or less been off the DAs for 6 months and on what I consider to be the best substitute med for long-term DA use for a long complicated reason. Bottom line is the DAs shrink our lovely, calming D2 receptors while simultaneously increasing our somewhat evil, excitatory D1 receptors. Allegedly, it is these bully D1 receptors that cause more problems when getting off the DAs. That is why I wanted you to take berberine (in the morning only) because it has been shown to down-regulate the D1s and up-regulate the D2s.
Getting back to methadone (and another opiate called buprenorphine) it supposedly has the ability to down-regulate the bullies if taken the right way. The right way is to “binge” it - meaning take your prescribed dose all at once rather than say divided in three doses over the course of the day. Just the opposite is true with buprenorphine which should be taken in divided doses if you want to down-regulate the D1s. Sadly, no matter how you take each of these they do have the tendency to down-regulate the lovely D2s, but to a much lesser extent than the DAs. So to summarize, the HRT helped you (but now is time to stop), you’ve been taking the berberine(?), you’ve more or less been off the DAs for six months and “binging” a low dose of methadone. I believe your receptors are in better shape than you may think or feel. The reason I want to see you using Neupro is because it is the only one of the three that is what I call an “equal time agonizer.” Meaning that even though it down-regulates the lovely D2s it also down-regulates (however slight) the bully D1s rather than up-regulating them like the other two DAs do.
The short game is to keep you comfortable until you see Dr. B, but the long game is to get you on the best protocol possible which to me would be some combination of fasting, iron and the lowest possible dose of methadone ie 2.5 to 5mg. It sounds like Gabapentin is not an option for you otherwise that might be better than methadone if for no other reason than doctors prescribe it like candy. If you never want to be on methadone again then 2mg Neupro patch seems like a reasonable substitute. The point is to have a protocol that makes you comfortable and allows you to experiment ie berberine and thus possibly reduce your need for meds.
So smart! Yes-I want to do the most natural thing possible and would love to see what my baseline is.
I haven't been taking the berberine lately but will start it up again. I just haven't known wtf I should be doing! lol. omg.
i will try to stay off the hormone creams but that might really suck. it already does. and if i start gaining weight, or my skin looking older, from no estrogen...that is not going to be ok. I weigh 126 or so and plan to stay there. Although I must say, I have lost weight without even trying these last months. Not sure if it is the methadone and not eating as much because I sleep more/less appetite, OR, if it is the fact that I FINALLY quit all the diet coke and aspartame in December.
I see-thanks! Well, last night went horribly wrong. Sorry to keep bothering you but this is obviously important.I started by taking 4 pills of ROP. 2 mg total. I did that because the night before i had taken 3 and then one in the middle of the night.
Within the hour I started getting RLS in my arms and I was antsy and could not sit still or read computer. I thought-ok-I must have taken too much of the ROP.
I then took 1/2 Methadone thinking that would help. It didn't. Before I knew it, I was in full blow withdrawal. Not as bad as that one night but very close. very! You add the sweats and probable hormone issues in and it was another 2-3 hours in hell.
Eventually I took the whole methadone pill and a bit later I fell asleep and symptoms were gone.
I can only surmise that the worst is true: the night before I got down to 3/4 of a methadone pill, so 24 hours later, I needed more. My body must now need the whole 10 mg every day. Not sure how or IF the ROP kicked it all off.
Teddi, it sounds like it takes the DA 2 hours to peak so I would wait for that point in time. You might want to try switching to Prami. First the Iron (50 mg) at about 9 pm. Wait an hour then see how bad your symptoms are and take your regular dose of either DA. Then you have to wait till midnight before taking any methadone. It seems to work fairly rapidly for you. These times are adjustable if you go to bed earlier. Try to speak with your current neurologist tomorrow or sometime this week and explain all this to him.
Most people on here who make the leap to methadone seem to stay on it for years and decades without the need to increase. I haven’t heard about what happens when people try to switch to some other RLS med. Hopefully someone will chime in.
Thank you. I guess the real issue is-if I have to take the entire 10 mg of Methadone, then there is no point in taking the DA's again.
The 4 DA's kicked in quickly and I felt pretty horrible all over. But, not sure if it was those 4 pills at once or the fact that I had no methadone in my body. I am loathe to try any of this again. Will try the iron at 9 tonight-I never even got to the iron last night, as I was so sick. Yes, I do go to bed later. Usually 11 or 12.
I don't think I have any more PRAM lying around but will ck. I am definitely not taking 4 ROP, if any at all.
The withdrawal is a very specific feeling all over your body and you definitely recognize it once you have had it. You are rocking, sick, nauseous, on fire, and have whole body RLS. The only thing that stops it for me so far is the Methadone.
What I meant about the 3/4 to 1 pill is this: these last weeks I have taken the full pill-10 mg. So I must be used to it now and hence those symptoms last night. Not sure.
My current doc (the one listed on rls.org!) will not care at all. He was so awful last time and worried about his practice. Told me to find someone else and that's that.
Ok-thanks so much for your time! Enjoy your Sunday! xo
Great news-I finally connected with a nurse at Rush in movement disorders. She was awesome and actually completely understood what I was talking about. So they do use methadone and other treatments! She is getting me in within 2 weeks with either just a fellow to get me going or any doc who might have an availability. Hopefully it will work out so I can get a prescription in time.Last night and this morning the rls was very bad-even with the full 10 mg. I have no idea what the heck is going on now.
This may be good news for you, too, for the future?! I told her they are not on the list of quality care centers on rls.org.
It's just too bad it took all this time for me to even get that information from them! Geez. I have an appt. with a Rush internist tomorrow so I can ask her about my hormones. It all just takes forever to get in for anything, it seems.
Thanks again for your amazing help and support! I'm going to bring all of this hormone stuff up tomorrow! xoxo
how many days would you think it would take to get those 2 out of my system? i will try that, although i started the progesterone again last week due to the awful soaking night sweats. omg-this is just hell. meanwhile, the methadone pills are dwindling down and i am unable to taper off. i went so far as to ask Karla if she would call that doctor in the south burbs-he is listed on the site. she was outraged before regarding his plan to leave me high and dry.anyway, thanks a ton for your support!!!!!!!
yes. i didn't use either one yesterday. the day before i did like 4 mgs progesterone cream to 1 mg of estrogen cream. plus the dhea spray every morning. last couple of nights the night sweats and the hot flashes were much better. but the rls was bad. and again-i can't tell which part of this is the methadone dependency/beginning of withdrawal every night. i can tell if i try not to take the methadone-the rls starts all over and my body starts seizing in each area. if i take the methadone-that all stops. but eventually the lower body then starts seizing-like early morning-and i need a bit more methadone. xo
You’re so welcome! I get lost in these posts but I think you asked about using Kratom to help wean off and an article I read. I’ll try to find it but honestly the community boards - like this - is where you will learn the most. Just like everything, do more research if something interests you. Not all advice is gonna be good advice, but it’s certainly more options than a doc will give. I’ve never taken other meds for RLS honestly - when I learned that’s what I had I went straight to reading up on it. The meds prescribed sounded temporary and horrible, so I gave Kratom a shot. I would like to try iron infusions sometime, but from the sounds of things, not many doctors understand it’s significance with RLS. And I’m terrible at even calling to make an appt, much less trying to tell a doc what I saw on google lol. Way to introverted for that
Thank you. Yeah-this question I posted above: I asked about tapering off methadone from a low dose of 10 mg. You can't find that on the internet anywhere that I can see, so I was hoping someone here would know specifics. Even my doctor wasn't helpful.
You made such a good choice to NOT get started on the DA drugs of ROP and PRAM.
I did have an iron infusion and I thought it was very helpful....and I believe it would be far more helpful if one is not on the DA's. That appt. is very easy to get set up, if you want to do so! Most docs have no issues prescribing it, though you need to make sure you have low ferritin first. Good luck!
I did it on my own about ten years ago. It was the most awful think I’ve ever been thru in my life. I couldn’t help from any doctors to get off of it. The RLS is horrible and the the pain and digestive issues r horrible too. Maybe u can get a doctor to prescribe tramadol until ur withdrawals r over. The tramadol will make it bearable. After about a month, I should be able to get off the tramadol. Make sure u take enough vitamins and drink electrolytes with plenty of water to flush ur system. I’ll pray for u because it’s not going to be easy. If u get thru it, u will never have to do it again.
Wow, TeddiJ, I just went through all your posts and girl, you have got a whole lot of things going on. And a lot of great advice too! I am trying to get on the Methadone treatment and just found an office of Neurologists that follow Dr. Earley's treatment with options for RLS. Now just playing phone tag to get an appointment. So, from what I understand by your posts is that you had a Neurologist that prescribed Methadone for your RLS, but then he retired??? So you found another Neurologist that sounds like he's afraid of the DEA and he has decided that he will no longer prescribe you Methadone? So you are basically getting off it so you don't have to worry about searching for another Dr. that prescribes the Methadone? And your Primary won't prescribe it for you either? Plus you have all these hormone issues going on too? Holy hell, and I thought I was having a rough time with my augmentation issues with my pramipexole😱
So, I'm very happy to hear that you have found another Dr who will give you the Methadone, but I need to know something. Did the Methadone stop your RLS???? LOL
Thank you so much! First, WHERE ARE YOU GOING and WHICH DOCTOR?!?! I am still counting down my pills and do not know if I will get an appt or a refill in time. God, it is just a constant stressor.Yes, it definitely stops RLS! I recently wrote about the side effects to another poster, so you may have seen that.
The problem is, you get addicted quickly and you absolutely must have access to it-forever-with no worries of what I have been going through for many months. If not, you will face the worst full body and brain RLS and full body fire and quakes and sweats of your life. It is untenable and I barely made it.
No, nobody retired. The first neurologist: I had to talk into giving it to me to get off the DA's and then he would only give it for a short time.
I went through a night of withdrawal and managed to get a few more from him, then he ghosted me.
I called all over and could not find anyone to help me in time-the exact same situation I am in now.
Finally found a new doctor who wasn't crazy about me staying on Methadone but said he would prescribe it until this spring and then we would re-evaluate.
BUT! Out of the blue he said he would not give it to me and that the feds were breathing down his neck because another patient of his tested positive for cocaine. He spent our entire appt.-that I was paying CASH for-stressing and complain and telling me to find someone else. No regard for helping me to taper down or where I should go for help.
During this round of desperate posts and calls, I found out that bioidenticals and thyroid pills exacerbate RLS! I had no idea! But! the nurse at RLS.org told me on the phone that, no, that is definitely not true. She gave a complicated medical explanation that I can't remember or replicate. It could be true for me though and many on this forum say it is the case.
Having this sudden change in methadone availability happen twice in 6 months is super stressful. Yes, it is far worse than DA land, as I always say! At least you can get your hands on that drug and all of the others.
As I said in one post, the main lesson from my hell is to go to a clinic of doctors, which you are doing, so that you are never this desperately attached to one doctor and his or her whims. Hence, I posted that list of centers for all.
Thanks for your support! And thanks, in advance, for the doctor info!
Hi! I'm still playing phone tag to set my appointment up, but on the first call to me, I was told they do treat RLS with Methadone. The office is located in Wilmington, DE and this is the link to their website.
Thanks very much. I am in Chicago and working on a couple of hospitals here. If not, I have appts. all over the country! Lol. The big issue is, none of the appts. are before my prescription of methadone runs out in one week. So, I continue to call my current doctor to refill it (which everyone says is his DUTY but he doesn't want to do it) as well as working to see if I can still get in somewhere this week. I do have Kratom here as a back up but haven't tried it.
My advice to you-and please consider this very strongly-take the lowest amount of methadone that you can take. They will probably give you 10 mgs but see if you can get away with taking 1/2 of that. It's just very important to take the least amount that you can. That way if you ever run out or decide you want to take something else, it will be much easier on you. Your side effects should be less impactful, too.
Thanks so much, again, for the info. Good luck! I wonder why Delaware and the Chicago hospitals aren't listed in the RLS.org accredited RLS Centers list I posted last week?!
I was wondering why they aren't listed either, maybe they don't want to deal with DEA. I'll mention it whenever I get in there. Lol! I agree that you're Dr should write you a refill until you can see some one else. I plan to follow Dr. Earley's protocol of starting out on 2.5mg - 5mg and hopefully that will be good for me. I do know that these other drugs are just as addicting because I have gone without them a few times and got very sick and with tremors all over, same with the Klonopin and anti-depressants! They all get in your system and tear you up when you don't have them.I hope you get some relief soon and find the right Dr for you! Good luck to you too. We'll have to stay in touch for updates! Take care.
Thank you! Yes, good luck to you, too! My current doctor is still not returning my call from last Wed. 7 pills left. Today's call to him will be a lot less polite than the last one!
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