Hi, I am new to this forum. I am in Australia. I have suffered from RLS for many years. I was on a DA for about 10 years, but eventually came up against Augmentation. Weaned off as I was on a high dose. Dreadful period. Anyway, have been tried on every trick in the book. Iron infusion, Gabapentin (did nothing). Codeine helped for a while but made me feel awful & stopped working. Eventually got a prescription for Targin. Absolutely dreadful side effects. Nausea, severe stomach cramps, fatigue, very unwell.
I don’t know where to go as this is the last stop. Any advice?
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I started on a small dose . 300 mg then went up to 600 mg. Dizziness, felt like I was drunk, difficulty walking, a seizure in the middle of the night. No thank you.
It seems like people in Australia often take a form of buprenorphine? Ck out Shumbah's profile page-she goes into great detail as to what she has done and she lives there.
I'm struggling myself after using methadone to get off the DA's but not knowing what else I can do/take from here. I got cut off from methadone from 2 docs and I am now taking Kratom that I ordered on the internet, out of sheer desperation. It works. If you are desperate and want to try it, let me know. I also recently posted about Kratom.
Today I was prescribed Horizant, if that is an option for you? (for the second time-first time i only did it for 6 days and not the full 2 weeks) at an RLS appt.
I disliked Gabapentin, too. These docs I met today say Horizant is totally different than Gaba and is designed for RLS. But I do not know if it will work since I augmented on the DA's-which is what Dr. B often says.
Please know kratom if taken daily creates terrible withdrawals especially if you already have dependency with opiates. It’s fine for short term but long term you become tolerant and need to keep adding more. My husband has been to rehab twice for kratom and the withdrawals were the worst thing he says he’s ever experienced… so please be careful if you are already dependent on opiods. 🙏🏾
Sorry to hear of your Husbands problems, but just for balance I stopped Kratom two Months ago without the slightest problem having been on it for 1.5/2 years. helped a lot, stopped only because insomnia became to much of a problem, now back on a much higher dose of Pregabalin, 175mg nightly which is working pretty well.
That’s good to hear. Sounds like you weren’t on a high dose and didn’t get addicted. Not everyone does. What was your daily dose ? And if it worked well why did you stop ?
That sounds like around 1 teaspoon which is low. If you can keep it at that dose that’s great. Most People can’t and need to keep increasing, my husband was using it around 3 tablespoons a day
If it is only working pretty well, try increasing it by 25 mg every couple of days until it completely controls your symptoms. 175 mg is still lower than the dose most people need.
Yes thanks, that is an option certainly, but in truth so pleased to have the symptoms reduced by perhaps 80% without any serious side effects after having tried just about everything else legal an otherwise post DA augmentation, and as a bonus Pregab. is on prescription and consequently free here in the UK, unlike Med Can. Marijuana and Kratom.
Thank you. I always use some form of the phrase, "if you are desperate," because I know it can be risky for some. But, when you truly need help and sleep, or no doctor will continue your methadone (my case) it is worth the risk. Hopefully short term.
Sure I totally agree, and I’ve watched my husband suffer. It’s a double edged sword. I don’t want to sound judgmental. It’s a shame he became addicted. It’s now something he struggles with in addition to the RLS. I am always desperate to help him!!
I get it and i did not think you were being judgemental. you were just offering important information. I am suffering the same as he is and that is so unfortunate, as we have enough to deal with. I never knew I would get addicted to methadone in 2 months and I had always thought I could just get off the DA's with the short cycle of methadone and be done with the worst of it. then i had a night of withdrawal and it was hell on earth.
It does seem like the Kratom is easier than the methadone, somewhat. But I can feel the withdrawals set in and I would love to stop taking it. The doctors left me with NO choice-2 doctors cut me off. I am struggling to find the right doctor and the right help. Making appts. all over the country-but that takes so much time.
Has your husband tried to wean off with Buprenorphrine? It sounds like that is how you can get off of the others? Ironically, it also stops RLS.
I wish you both the best. You just need the right doctor and the right help! For me, I will be paying out of pocket to get the best. It is a drag but I would rather stop wasting time with doctors who do not know the latest RLS research. I just had a very long appt. at a large hospital yesterday and it was still not the right help for me. Super disappointing and left me struggling again last night as to what to do or take.
I hear you. We are in Asia and buprenorphine is not available. Suboxone (?) same(?) is available In rehab only for short term. I understand Suboxone is the best and for those seriously addicted the taper takes 6 months to 2 years! He was only on Suboxone 10 days… so certainly not long enough. He will go back to the states at some point and hopefully get some help. Have you tried Scripps in San Diego ? They are suppose to be one of the best places for RLS. I forgot to say they offered my husband methadone, but he’s not tried it yet. Not sure what he will do next as his oxycodone will not be available anymore and I would prefer to see him on Suboxone instead.
Also how many tablespoons a day do you use? And for how long? And has it created stomach problems for you?
Have you been able to stay on the same amount without increasing ? My husband built a tolerance and then started to get restless earlier and earlier in the day. It also affected his arms.. so in some ways it also had similar affects to the DA.
I see-thanks for all the info! i would avoid methadone, if you can. i am glad to be off of that now. but, if that is all that you can get-then it will work for his rls. it is just also addictive and some icky side effects. although they are manageable and it may be just fine after all you have been through. maybe see if 7 mgs would work. at least you only have to take it once a day and you can have a normal life.i did not know that about san diego-thank you and i will look that up. i have several appts. around the country right now. The next one and hopefully the last stop for the best help, is in April with Dr. Buchfuhrer Downey, CA. I'm sure you know him but, if not, he is amazing. Consider calling for an appt. soon and getting on his schedule. You can always push it back or cancel, if you need to?I am taking maybe 5-8 teaspoons, not tablespoons., I THINK from early evening till morning. Although I will try to nail that down exactly and report back. I definitely start feeling restless by evening after not taking it during the day. And I do get it in my arms. Some of this though is from already having a dependence on 10 mg of methadone. Although by now it has been a couple of weeks with zero methadone and only kratom. No stomach issues that I know of. yet.
I have been using Kratom for maybe less than a month. not long at all. the powder is disgusting and made me more miserable. now trying the capsules, which work slowly, it seems? so it is hard to know what i am exactly taking but it only lasts a couple of hours overnight. not ideal and makes you so miserable after actually falling asleep to be awakened and wondering what to take. last night i caved and took some ropinirole. sadly. and it worked so well. sadly. definitely ruins my streak of staying off it. but nights are super rough! hang tight! get an appt. somewhere good and you will feel more hopeful! There is a great guy in Atlanta too-Rye i think. but a long wait time.
Thank you for the info. Yes my husband was on kratom for over a year daily… 3 tablespoons a day… really not good. They say that his withdrawal was as bad as someone coming off heroin. So all I can say is be careful with it. A few teaspoons maybe ok as long as it doesn’t create augmentation. Anyways Just sharing the info. Everyone is different. But my feeling is, if you already know you have a tendency to be addicted to opiates, kratom is pretty much the same.
I’ve heard of that doctor. Great to hear you’ve got an Appointment. The guy at Scripps is supposed to be wonderful too.
Please stay in touch ! Thanks for the feedback about methadone. I hope things go well for you!! Sending hugs 🤗
Thank you! So helpful to know this and how much he was taking. The teaspoons only work for a couple of hours overnight, so I do keep adding. Ugh. I am hoping that at some point soon I can try the newer drug answer of dipyridamole. And/or maybe Buprenorphine to get off this Kratom. Maybe Horizant.
Have you tried Gabapentin or Horizant for his RLS?
Thank you so much and hugs to you, too. Let me know how you two are doing! My Dr. B appt. is mid-April. xoxo
There is an article on this in the latest issue of Nightwalkers, from rls.org. If you get the magazine or have access to the site. It is a drug that has been around a long time and is easily prescribed, I believe. It affects adenosine in the brain, in simplest terms, which affects our RLS. People are now taking it and reporting great results. I am just learning about it, too.
When I asked to try it at a recent appt. they wanted to stick with the "tried and true" Horizant because they themselves have not studied up on it. Although they had heard of it, at least.
I have only the physical magazine they send out. If you are a member, you will find it on the website. If not-maybe I can take a photo of the article and post it somehow? Or maybe you can just google it.
Also-plug the names into this forum-I have read about others on here taking it!
Teddi your experience should be written up in the annals of RLS protocol as being near ideal…so I think. Your history shows an upwards of 25 years of DA use. Your switching to Methadone allowed you to avoid that six month long descent into DA deprived hell. The methadone gave your receptors six months to recover without you staring longingly at the kitchen knives. It mostly allowed your D1 receptors to recover since methadone can still be a drag/agonist on the D2s. And that’s ok because it seems like it’s the excitatory D1s that become unwieldly from the DAs, more so than the delicate D2s being dragged down. Then you pretty seamlessly switched to Kratom which also allowed your D1s to continue their march back to baseline. If I’m reading this article correctly, Kratom has a low affinity for D1 receptors which may sound bad but it’s actually great because you want to “agonize” your D1s. You want that low affinity. digitalcommons.memphis.edu/...
The low affinity Kratom is what makes these bad boys shrink (however slightly) whereas the DAs you were on allowed them to grow wildly out of control. Plus the Kratom just keeps buying you time. And time is your friend. Nothing is perfect, Kratom also has an affinity for our D2 receptors which will be a drag on them and that is something we prefer not to happen.
So now it’s been what…nine months since regular DA use? I truly believe that if you can keep toggling back and forth between Kratom, Horizant and in a pinch a drop of the DA for another nine months you will have gotten back to base line. You’re more than halfway there I bet. As long as you’re taking progesterone (not so much estrogen) you will never know what your baseline is. While the progesterone is not a drag on your receptors (and possibly just the opposite) you will never know just how little or how much drugs you need until it’s out of your system.
Every night should begin with a fast and end with iron and Horizant followed by Kratom if you find it necessary, which I bet as time goes on you won’t need it.
So there we (meaning DA users) all have our protocol thanks to you:
Off DA->Three to six months low dose Methadone->Three months low dose Kratom + Gabapentin/Horizant->Just Horizant->Just iron and fasting. The iron and fasting should be started from day 1, but probably won’t provide complete relief until you’ve returned to baseline which depending on how long and how much DA was used can take from 6 months to two years. But the important thing is you won’t feel like you’re dying 24/7 for six months with this protocol
If your RLS was severe and unrelenting prior to the DAs then ignore the above. You will probably have to be put on methadone or buprenorphine for life. However, if you were put on DAs because of anti-depressant induced RLS, or pregnancy induced RLS or HRT induced RLS, then the above schedule should enable you to get off the DAs and return to baseline without descending into a hell that most mere mortals cannot survive.
Sometimes in life things happen for a reason. It was probably a blessing that you were deprived of methadone after six months which then forced you onto Kratom and then met with doctors who just want you on Horizant. I think you have a guardian angel watching over you even though I know you still suffer trying to get a full nights sleep.
Well, I am just about speechless right now. Wow. I guess you have been following my incredibly difficult and stressful journey. You are obviously brilliant to also be able to flesh it all out and explain it so scientifically. Thank you, thank you.
You know, I believe my RLS was initially mild and due to low ferritin, as I did not eat meat in my 30's and I still do not. I started by pinching my mother's ROP pills. Not taking much. She is 95 and still rarely takes it. I never thought it was a big deal to steal her ROP and then get my own prescription.
Unlike my Mom, however, I did start the progesterone bioidentical cream sometime in the 40's. Then added estradiol cream and DHEA spray every morning.
At a Cubs game, a doctor I met then called in a prescription for Pramipexole-right on the spot! Oh, I thought maybe that was the answer as I must have been augmenting and had no idea about that. No doctor ever mentioned it-they just kept prescribing.
So, thanks to you and LonePine and others on here, I found out that the bio creams are very bad for RLS! I never knew this, even on this forum it took a long time to find that out.
Are you saying to totally stop all 3, as LonePine suggested? She was amazing. She suggested berberine during the day to help reset the receptors. She is trying that herself. She has left the forum, sadly.
Big deep breath here: I was so disgusted by the kratom and taking it through the night every 2 hours, plus withdrawals starting earlier every day-that I have totally stopped. I feel so much better being off of the Methadone and the kratom. Although my nights are awful.
I am on about day 10 or so of the Horizant. It is doing nothing yet but at least I don't feel the side effects as much as I did on Gabapentin.
This may burst our bubble a bit-I am taking the DA's again. I felt that the ROP was augmenting right away strangly-even with small or larger bits. I dug all around and found a few remaining Pramipexoles and they do work. I am taking about 1 to 1 1/2 or maybe 2 of the .125's
I was not off of the DA's quite that long-it was only about 7 months during which time i did take some for a week in october when i was withdrawing from methadone temporarily. but, then i went back to methadone for months until I was cut off in early March.
I am only providing these details since you are so kind to have followed and assessed my journey. Incredibly helpful!
But, isn't it so sad that I have had to resort back to the DA's after all I went through? Maybe the Horizant will kick in soon. Dr. B had a theory that Horizant will not work for those who have augmented on DA's. Did you know that?!
Also-just so you know, it must be taken with food. I take it later than 5 p.m-too early for me. More like 8 or 9 pm.
I am hanging on until an appt. with Dr. B this week. I am now almost sad about it, rather than super excited to finally be talking to the god of RLS help-as I fear he will only want to go back to methadone. I would have loved that a month or two ago!! But, no longer! Ugh! I feel so great off of it.
If you can provide any more info for me to tell him, I would be forever grateful!
I am working on that today, in fact!
I think you have the full details now. Does it change anything you said?
THANK YOU for doing this for me and for the forum! When we get it really set, you should fully post it!
How nice of you to say I have a guardian angel through all this-what a comforting thought after so much roller coaster RLS hell and even being treated like a junkie at times.
Wait, are you on or off the HRT? If it were me I would stop all the hormones, including DHEA, for one week and reassess my nights. For all we know you could be symptom free by doing that. After the usual routine of Horizant, no post dinner snacking and iron and you find yourself still restless reach for a second iron tab. It will take a full hour to kick in. If you still have RLS reach for a low dose of Kratom. The above article indicates the lower the amount the more dopamine will be released. It’s time to put the Prami to bed except in an emergency. I think you’re better off with a small amount of Kratom. Stick with THE PLAN. Meaning relief comes in steps lest you miss the day you no longer need the heavy hitters.
I am still on the bioidentical creams/spray. Which were always touted to be natural and not the same as HRT. But, I do not know.
Have you ever taken Kratom? Because I could stand drinking the dirt if I didn't have to awaken every 2 hours to do it. Am I not taking enough? How do others sleep through the night on it?! I have both capsules and the dreaded dirt. The capsules don't seem to work as quickly or something. But far easier to take, of course.
I've noticed i am getting zero symptoms until i go to bed-which is very late, like 1 or 2 am. Its like as soon as i lie down. so odd. then i get these spasms where my hips go up and down. super odd. the kratom and the DA's stop it, of course. it isn't like my old creepy crawly rls much any longer.
So, i do take the horizant later. i need to take food with it. but i can adjust the time. maybe take it at 8 with food? 7? then stop eating?
what time do i take the iron?
how many berberine a day? i have been taking just one with no resulting rls.
i am in a bad sleep pattern due to the rls and having to sleep late in the morning. i would love to get that all turned around to get up at like 9. (i know that is super late for most but just fine for me).
yes, i just hate reaching for a DA after all i have gone through. it kills me. PLUS i am super sure i lost a big chunk of weight after going off of them. i don't want that back. it seems to creeping upward. not sure.
i wondered if you had an issue with anyone on here and that is why you left so abruptly. we all need you but i do understand.
that is so fun about the senate candidate. we should message as i think we have a lot in common. i have helped with one aspect of political races myself (speaking and messaging).
apparently dr. b is not big on dipyridamole. i was planning to ask for that. i am super worried he is only going to want to do methadone. no thank you! never again! what a switch as that is ALL i wanted when i first met you! but only because of the dreaded withdrawals. which i also had from Kratom. thank GOD- no more sweating and weird crap going on. just horrible rls, sadly. but all those 2 did is add another layer of hell to my situation. and i was treated horribly as i tried to get help.
PS-i lost you when you found out i was going to RUSH. they put me on horizant and they want a sleep study. this young buck there was like-i don't even think you were augmenting as those seem like low DA doses.
I cried during the appt. and also half of that night after it. it was just disappointing and i felt like he didn't believe me. he has also since written some kind of rude post appt messages. he doesn't get it. he is nothing like dr b who doesn't even get paid for all the help he does. this guy was like-stop writing to me! i was like-i thought you would want to know i was VOMITING all Day!! wtf.
Let me digest your current situation. Especially the atypical RLS symptoms. You must take the iron tonight no matter what and stop the HRT. If after a week or two there is no improvement you can add back in one at a time.
Sure-I will start tonight. But what time do i take the iron? and horizant? Yeah, it does seem like i have more full seisure movements these days. where my legs kind of pump upwards from the hips. although it wasn't long ago where i was having normal rls feelings.
My guess, at this still undigested point, is that the atypical symptoms are related to the Horizant. Take the iron one hour before bed on a completely empty stomach. Please skip the Horizant tonight as well. Just one night. We have to figure out the cause of the new unusual RLS symptoms.
Ok, about to walk into Wildfire. The drill for tonight is no Horizant, no eating after 8, TWO iron capsules then bed an hour later. If you still have RLS take a plain aspirin, preferably a baby one. Wait 30 minutes at least. Still RLS take one teaspoon of the dirt - sorry it seems to be a damn fine emergency med is the general consensus. Once that progesterone is out of your body your symptoms will lessen. On the bright side, I truly believe that the HRT had a protective effect on your receptors while you were taking the DAs. HRT, especially progesterone makes the symptoms of RLS much worse, but not the RLS itself. Pat yourself on the back. You done good. But now is the time to stop the HRT to see where your symptoms are at. Hope you’re not taking any statins either.
Thanks SO MUCH. I will do above. I have had these weird leg seizures before, i think? not sure. but they are odd. i used to wonder and still do wonder if I have plmd.
No, no statins. BP is like 106. Weight 127. I generally think of myself as very healthy. Other than this mess.
I do take Armour thyroid though-I know that is bad and not helping.I probably started the Armour and the progesterone all around the same time. omg.
I have often thought of your words that some of this may have helped my receptors and it made me feel better for all the hell.
ps-the 2 teaspoons barely worked for 2 hours. it is hellish to drink dirt in the middle of the night every 2 hours. i am doing something wrong because nobody else says this.
Are you hypothyroid? It seems that there is a link between the two conditions, that has less to do with taking thyroxin and more to do with being hypothyroid in and of itself. You have no choice. You can’t stop the Armour. You can stop the HRT.
Teddi, here is Jools experience with HRT.Joolsg profile imageJoolsg1 year ago
I found progesterone made my RLS much worse. I was on combined HRT which was oestrogen for about 19 days & progesterone for 9 days. Those 9 days were terrible for my RLS.
I stopped HRT in 2017 ( they discontinued my brand ).
I then read an article that said oestrogen dominance caused RLS so to take natural cream progesterone. Again it worsened my RLS.
In conclusion, the oestrogen in HRT didn’t make any difference but the progesterone made it much worse.
Thanks so much! Gosh, again, I missed any of these discussions and of course my doctor did not know all these years. She prescribed both the creams and the DA's (although she didn't like me taking the DA's and shook her head at my insistence).XOXO
any idea how much kratom to take? i was taking 2 teaspoons at a time. also-don't forget-i was going through withdrawals from that and got off it all after a day of vomiting. i had taken Buprenorphine and horizant and kratom and DA's all in one desperate night where i woke up in a horrible drenching sweat with terrible rls. (that after just the horizant and kratom).
so i threw the kitchen sink at it for the rest of the night and morning. vomited all afternoon. so i was pretty happy to be off kratom.
Hmmm, I think the buprenorphine is well known to cause nausea. And I think the Horizant might be helping the RLS but giving you that involuntary hip jerk. Only one way to find out. I did read where the Kratom helped get you off the methadone but you hated it and felt you were becoming quite dependent on it. So now you are nibbling at the DA instead of the methadone or the Kratom. We need to buy you time and sleep, preferably without the DA or the methadone. RKM7’s history is very similar to yours. As painful as it was for her, ultimately she wound up in a good place by just using gaba, iron and fasting and no statins or HRT. In her case she found her RLS improved when she stopped the statins as I assume you will with the HRT.
Yes, I felt that the vomiting was due to all the BUP for the first time and also taking so much other stuff. But the odd miracle is the kratom withdrawals that i had every afternoon totally stopped!! WHAT?! it was like a miracle in and of itself. and i felt so much better!
You will also get withdrawal symptoms should you switch to Bup and stop or as it gets close to dosing time just like with methadone. It is 11pm. Your stomach should be empty and you should have two iron caps clasped tightly in your fist. Say a blessing to the medicine gods then go forth and conquer the RLS monster.
I did not take the Horizant, I did not eat, no hormones, and I took the iron with C, went to bed an hour later. Now I am typing this stupid post with wildly restless both arms and legs! Good times! one of the worst night! feel asleep right away, no hip jumping, no rls. i was like -its true! its working! but NO, woke up in drenching water running down my back-soaked clothing a mess.no progesterone does this. it sucks. I can't hard type this for the awful jumping and anxious limbs not able to barely type.
went to open a bag of kratom. i couldn't do it.1 teaspoon would last me part of an hour, if lucky. what is the point?! it is so horrific and i have serious ptsd from all those awful nights. and it is NOT one time a night thing. it the rest of the night constantly every 2 hours. i can tell you've never taken it but you should- just one night.
i have no aspirin at all. took ibuproprn and took a tiny piece of ambien and pieces of DA.
my arms and legs are going INSANE.nothing is working and i have a HUGE day tomorrow. omg. the fucking hell! it is no wonder i look at the balcony at times like this! nothing is going to stop this train. it stared off so well, though!
It sounds like the iron only bought you about 4 hours? And no involuntary hip movement - possibly because you didn’t take Horizant or maybe the iron simply took care of it. The most likely cause of female night sweats is menopause or indiscriminate use of HRT. Most women will get just that - night sweats. However, if you are predisposed to RLS it will also provoke symptoms along with that drenching sweat. Stopping HRT puts you almost back to square one - menopause and your body desperately trying to achieve some kind of homeostasis. obgynassociatesmarietta.com... Unlike Kratom I have tried using progesterone cream. Within a few days of use I am waking up in the early morning with hot flashes and RLS. I would take more iron, pace and go back to bed for an hour or two and stop the progesterone.
So are you saying you were worse hormonally after starting progesterone? That is most likely because you didn't have the right balance, as you said, but estradiol also has to be in proportion to the progesterone. Hence, periodic saliva testing. I have a great doctor who is brilliant. Although she does not know about the RLS correlation and I recently asked her directly.Aargh. We shall see what dr. B says!
Yeah, i was quite shocked to go to bed with no symptoms after taking nothing. wow. BUT, i totally paid for it later.
I never have RLS in my arms. Last night was one of my worst after starting out so well.
NO idea what i will do tonight but i am losing my shit, honestly. This is insane. SO so so tired of this constant misery.
And my general hormonal balancing issues (I haven't tested in ages because i am all over the map with dosing) AND with the methadone sweats and those issues-it was and is unbearable. At least the methadone and kratom bs is over!
Anyway, thank you so much and please don't disappear too much!!! I need you, as do so many others!
Move over sister, I’m right there with you. One week off the HRT will not undo anything in terms of weight and looks. Then once and for all we will know whether it is adversely affecting your symptoms. If it isn’t then you can go right back on. If it is increasing symptoms then I will share with you some other ways to maintain your girlish figure and good lucks. HRT is really kind of mad science and was not meant to be taken indefinitely. As hard as I have tried over the last few years I cannot apply progesterone for more than a day or two without getting silly crazy RLS. DHEA should only be taken or applied under doctor supervision. There is an ideal balance that can be measured. When you pass that point with DHEA you start getting into the hair loss arena except of course for the increased facial hair.
ps-the 2 teaspoons barely worked for 2 hours. it is hellish to drink dirt in the middle of the night every 2 hours. i am doing something wrong because nobody else says this. (i sent above to myself accidentally.)
also wanted to tell you-I recently found out my ferritin is in the 200's. still rocking after an April 2021 infusion. although Rush said he still wanted it higher. which was comforting because i had heard that from dr. b or someone big. to go into the 300's. i was shocked this kid knew this.
Your ferritin could be 799 and you will still need some extra iron in your bloodstream at night, every night, if you have RLS symptoms. You just have to trust me on this one. Read my back and forth with Sher78 today. Especially her amazing story. In my 8 years on this site her story and history regarding RLS, as well as the resolution of her symptoms, is the most astounding to me. She came this close (-) to what I consider would have been a tragic mistake. Her story should be plastered here and on every neurologists’ office door.
No I never have, but I think I must try it. The most well known Kratom story on here I believe is that of Jools. She used Kratom when first coming off the DAs - one of the worst experiences of anyone I have read on here. Anyways the Kratom gave her all of 30 minutes of relief, but she was actually grateful for those 30 minutes. I think I have read on here that one or two teaspoons of the right kind that suits your needs is usual dose.
Yes, I think it is more like a starting dose. there is no way that gets people through a normal sleep cycle. i am sure people take a ton of it. Poor Jules has been through total hell and i think i only have the tip of the iceberg of her story. She so deserves her good phase these last years!
Teddi, I am LonePine. I left when all seemed right with the world on here which coincided with the demands of helping a senate candidate with his 2022 race in Wisconsin. I know me. If I have an account I will be up till all hours giving advice. Without an account I can do a once or twice a month peek to see how people are doing. There are always new people who come on here wanting to get off the DAs, but that has to be left to Jools and Sue and now you.
I came back on here because it seemed you and FreeGaza were struggling and I wanted to add my two cents in. Please stick it out with the berberine. I know for sure it helps with cholesterol and most recently my cousin who has terrible IBS-d (upwards of 10 times a day) has found relief with the berberine. Down to 2x a day and feeling great overall after four weeks of use. I am pretty confident now that it can up-regulate the receptors but it must be taken early in the day. It’s not an immediate relief drug. Just the opposite, it likely provokes symptoms for several hours after taking. No pain no gain. After three months of use please stop and put a break in there. It’s clear to me now that it’s a medicine, not a supplement like vitamin c. A powerful medicine. We must be respectful of powerful medicines and not use them indiscriminately.
I will leave this account open till tomorrow night. I’ll check in as usual at least once a month. It actually gives me pleasure when I see that most of you guys, PoorRichard, Widebody, RKM7, Sher78 continue to do well and help others on here. I have strong philosophical differences in terms of treatment with most of the regulars on here. That’s confusing to Newbies so it’s better to let them take the reins since they are all in agreement.
Be honest with Dr B about your recent 7 month long journey. Maybe ask about trialing dipyridamole. The idea is to have him on your team so that you can email him as a patient as you hit speed bumps. The only other thing I would recommend is that when you wake up and have RLS don’t necessarily run for a pill. Your hormones are going to be fluctuating and that will trigger symptoms but they should be short-lived. So give it a chance to pass before you take a pill.
OMG, LONEPINE! I'VE MISSED YOU SO MUCH! So has Lana-we were just talking about you yesterday on a chat! I wrote and asked if you were ok but of course you were gone. If nothing else, I wanted to tell you how much you have meant to me. You are just brilliant. I had this funny thought-god, could Esconday be LonePine? That is a name she would pick out!! lol! And it sounds just like her!! But then I decided, no, that would be too good to be true!!!! Lol. omg. ok-now I need to read your posts. Omg. i am so excited. Please write to Lana as she wanted to tell you something herself about how she appreciated you!
LOL! ok-i just kept editing and editing and adding to my post. so keep checking it-lol. Oh-and that is just not true! lol. though why WOULDN't we be bitchy with all this!?!?!
Hi!! I was going to look you up, FreeG! Since she mentioned you! Yes, she is incredible and I know so many miss her on here! I don't care if some disagree-that's ok, too.
TeddiJ I can’t speak for others but for me, she has been brilliant. Without her and others in this forum ( let’s not forget the rest of supporting folk on here) I would be down a slippy path of high dose opioids at such a young age.
I had been on too many medications for my PTSD / insomnia for years, in the end on 5 different pills on high doses for the same thing. RLS only came about 2 years ago when I started coming off medications due to a reaction to lorazepam.
What I’m saying is, I was always convinced medications played a big part in making RLS worse then they needed to be and she helped me along the end of my journey to see it through. It has not helped my Major Depressive Disorder (MDD) or insomnia, but I think il get there.
Someone once said to me on here
“ the less medication you can take to manage RLS the better”
And for me that was true.
I havnt took tramadol for 2nd night running and instead took the iron like I have been for last two days from switching every two days to every day. No RLS. Yaaay. But still no sleep. I seriously wish this insomnia would accept defeat.
Absolutely-LonePine and many others have taken the time to read and to help me all along the way. I try to pay it forward and hope I have made a difference.
I'm so sorry for your difficult journey and what sounds like a traumatic experience to set it all off. I feel that most of us are living with past trauma, perhaps not as recent as yours. But it is there, from childhood and parents and family issues.
Anyway, so glad LonePine has helped you and I am not a bit surprised. She has written long posts to me and gone far out of her way to help. She thought I was ok and dropped off here-since I had an appt at a large local hospital where the nurse seemed to know what i was talking about and made an appt. But, it was largely a bust and I didn't have LonePine to turn to. I ended up going back to the DA's waiting for the big Dr. B appt.
I wish you much health and happiness and success. I am sure you have tried everything for the insomnia? A couple of things have worked well for me, including a THC oil where you just take a little drop. Can help RLS, too. I am not currently taking it. I sometimes take litte pieces of Ambien when i awaken in the middle of the night. Just a little.
I totally agree about "less is more" and have wanted to do natural solutions for ages. I thought once I got off the DA's with methadone, i could do natural. It didn't work like that, sadly. I do not want to go back on methadone or any opioid. With LonePine's help I may just be able to get close to natural solutions! if we had all had iron infusions instead of being put on the DAs-few of us would be in this mess!
Yes have tried almost everything. First everything natural, drastic changes. Then medication, most recent trazodone at 12.5mg. Worked brilliantly but gave me breathing difficulties. I’m going back to mitazipine at 3.75mg see if that works, as I did have it before but on 45mg. And I didn’t have any breathing difficulties. Just hope it doesn’t set off the old jitters.
You hit the nail on the head. If we all had iron infusions instead of being put on DA’s, few of us would not be in this mess! So true. I have just tried to explain this to another member on another post who has been on Ropinorole for 6 months and it’s stopped working. RVC_Hants . See what we say about Ropinorole. Please do as much research as you can or just knowledge yourself up from members posts on here. That will always be your best source to relief going forward.
Are you there? Are you watching? I hope you sign back in soon. I saw the great doctor last week but I am reviewing your notes...resisting the opioid with all of my might. PM me one of these days...interesting tidbits to share....
Ditch the drugs and address your diet. I have completely eliminated rls by remiving inflammatory foods from my diet.. It's improved my health overall and I feel ten years younger.
If only ditching the drugs was easy or even possible for many of us! I would love to do that and go back to all natural solutions. But once you have augmented on DA's, it is not an easy or straightforward path to get off any of these drugs.
I am in Australia and after 40 years suffering I am now taking Temgesic and finally leading a normal life. Opioids are addictive but I recon that quality of life is more important than addiction. Try it and you will be amazed how quick it works.
I agree. At my age, 76, quality of life is WAY more important than whether or not someone wants to call me "addicted." Smart people are not addicted to labels!
I think it's always more helpful to term it 'dependant' rather than addicted. 'When people talk about addiction, they are usually referring to the harmful behavior associated with substance abuse. Dependence refers to the physical symptoms of withdrawal and tolerance.' (addictioncenter.com) I know I've been dependant on DAs and opioids but not addicted to them.
Hi, I’m in Australia too, in a similar boat. Been on targin for 4 yrs, no longer effective at current dose, no appetite, night sweats, depression!Lyrica made me feel drunk also.
I now have Norspan patches to try, haven’t started yet but many here have had success.
Give the Norspan a go. My doctor prescribed 5mg Norspan 2 years ago and my life turned around straight away. I had a little trouble with the patches giving me a nasty rash so the doctor put me on the Temgesic and said to alternate both for 7 days which has worked. The new Norspan patches don’t seem to be irritating me so much. Best thing about the Patches is you don’t have to worry about taking a pill for 7 days. Please let me know how you go with the Norspan.
Yes. I do 1 week 5mg patch and then 1 week Temgesic. The Temgesic only comes in one strength. I cut the tablet in half and I take half around 4pm and the other around 9pm before bed. The tablet works in around 30 -60 minutes after putting it under your tongue. The Patch is slow release so takes a little longer to start working.
There was a lot written about low dose naltrexone a couple of years ago and how effective it was. Since Buprenorphine became more popular and known to be effective I haven’t seen it mentioned again. Does anyone know the latest on LDN?
Hello night walker you have my deepest sympathy. I have suffered RSL all my adult years . 15 years ago it became permanent. I was suffering sever sleep deprivation , then my doctor woke up to the fact I was in big trouble ( 2/3 hours sleep a day was very bad for me physically and mentally, so she referred me to a neurologist, who wasn’t the least bit interested. and told her I was unstable. So she took over my problem (she had suffered RLS when pregnant) I must explain that my RLS isn’t just in my legs it goes right through my body , so neither sit stand or lay down the only relief I get is Pacing the floor .I take 2 paracetamol first thing , then 2 Amitriptyline 2 mg at breakfast and 3 at bedtime , I’m also prescribed 4 repinex XL 2mg4 tablets a day I take the first with my lunch space them out and try to keep half in case it starts in the night this has worked well so far , may not work forever I also take a sleeping tablet which helps . The thing I have found is not to let it start , if I’m busy at lunchtime and take late I know I’m in trouble , but at the moment I have 1 bad night in 7
Instead of 1 good 😊 it may not last , but if it starts because I have forgotten to take a tablet then I have been known to pace the garden all hours of the day and night I hope this helps , in my case it’s inherited from my mother and my Siblings also have a problem but not as bad
The nearest I have got to the answer it’s our immune system attacking the protective shielding around nerves of the body . Very little or no research
Is being done as it’s not life threatening. But I sometimes wonder how many people , in the middle of the night just want to go to sleep and not wake up !!
Perhaps one day some would do a survey on unexplained suicide.
Amitriptyline makes RLS symptoms worse in many people. A safe antidepressant for RLS is Wellbutrin. Requip XL is long lasting and should only be taking once a day and taking 4 tablets means you are taking 8 mg a day which is twice the maximum dose. If you need that much and it is still not controlling your symptoms (you say you have 1 bad night in 7), then you are augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. You need to get off requip XL which is a dopamine agonist and eventually switch to gabapentin. You need to do it very slowly, reducing by .25 mg every couple of weeks. You will suffer but it will be worth it in the long run. You will probably need a low dose opioid temporarily, especially near the end. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment and refer your doctor to it as s/he is not uptodate on the latest way to treat RLS and should never have prescribed requip.
Lin1045 I felt compelled to reply to you. I remember reading a post similar to this a few weeks ago.
Madlegs1 SueJohnson are spot on.
Looking from outside in, your making yourself suffer unnecessarily.
Please read up and knowledge yourself. Knowledge is most definitely power. We have all been there. You have got a painful journey ahead but it will be worth it.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, salt, food that cause inflammation, estrogen, melatonin, and vigorous exercise. Some things that help some people include moderate exercise, weighted blankets, compression socks, botox, masturbation, magnesium glycinate, buspar, tumeric, alternating hot and cold water while showering, hot baths, distractions, vitamins B1, B3, B6, B12, D3, K2, if deficient, massage, yoga and red light therapy. What medicines and over the counter supplements are you on? If you list them I can tell you whether any exacerbate RLS symptoms as many do and can perhaps give you a safe substitute.
Hi Sue,I am not on anything that would exacerbate RLS as far as I know. Perindopril/indapamide for blood pressure. I very occasionally take Temazepam, sometimes take magnesium & rarely, evening primrose oil. I am using exercise & CBD OIL to manage my symptoms at the moment but am not sure I can keep running every day, although it’s working so far. Have given up on low dose opioids for the moment as I don’t like the side effects. Will see my Dr to get a new prescription for stronger CBD oil if I can. I was on Pramipexole for many years but titrated off due to augmentation about 2 months ago. It was hell.
HiThis is a very familiar story. Please give Temgesic a try. One small dose (200mcg ) about one and a half hours before bed has really changed my life. I was nauseated for the first week and then fine after that. It is a very low dose opioid (buprenorphine). Others on this site have also had great success with this drug. I live in WA.
Hi Password007, when you first started the Temgesic, were you extremely nauseous or just moderately nauseous?I tried it once approx 2 years ago and felt so unwell, I didn't persist.
Hi AmrobYes I was really sick to start. Pounding heart and nausea and vomiting. It eased after about 10 days. ( Some days better than others.) But absolutely great now.
Mind you, if I have quarter of a tablet more if I have a bad night( e.g. been naughty and had red wine, )I wake up nauseated. Probably a combination of the 2.
I’ve been thru augmentation with two DAs, total torture! Found a doc who was up on the latest treatments and I’ve been on 3.5 ml methadone for a couple of years and it’s working wonderfully. I also take potassium and magnesium along with iron which helps additionally. Being on methadone brings a stigma along with it but totally worth it!
From “last stop” to “diminished considerably” in under 4 weeks is nothing short of miraculous. You might need to share exactly what you’ve done to get to this point.
Hi Hidden,I was on Sifrol (Pamiprexole) for over 10 years so I think my symptoms were from the augmentation and withdrawal. It’s an extremely difficult process. I have now mostly recovered from these and am back to the original disease symptoms.
I’m currently managing them with prodeine, exercise & compression socks.
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