As some of you will know, I have been taking Kratom tea for a few weeks now. Sadly, it would seem that the initial benefits (evidenced by some great nights sleep and being almost RLS symptom free) are no longer the case. As I type, I’m now into my 6th hour of torment. I have had 2 heaped teaspoonfuls full of Kratom tea with no discernible effect. Tonight’s RLS has just transferred from my left to my right leg. What a pi**er! And I’ve not long spent nearly £100 on the jolly stuff! Any one else experienced diminishing results with Kratom?
Kratom no longer effective? - Restless Legs Syn...
Kratom no longer effective?
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Theonlypetied
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Hi, there and so sorry you are suffering. You probably just need to take more, as the long term users on here say they increased their doses-do a search. I take breaks from it here and there, using hirsuta or an opioid. It is tricky to know if it is a great long term solution-some say yes and some no. But you can't overdose on it-you just vomit, worst case.
You may have had some triggers today, too, that you aren't aware of. For now, just add more and I am fairly sure it will stop the torture within minutes.
MORE?!!!!! That would be 3 heaped teaspoons of tea! Are you sure? Blimmey!
I edited my response a bit-some people take more than that. First, just add 1/2 a teaspoon. Then try another 1/2.
That’s worse augmentation than Pramipexole!
I have taken 1-2 teaspoons every 2-3 hours many nights. And I weigh about 120 lbs.
No, no change. Still jumping like a catfish on a pole, as the King used to sing!
275-280 here!
This is what thedodahman just wrote, in part, on another post: "My RLS got so bad that, after failing with dopamine agonists and gabapentin, I turned to kratom, which finally allowed me to get some blessed sleep. However, I had to keep increasing my dosages until I was taking 32 grams per day, because of tolerance. Recognizing that I couldn't continue upping the dose, I finally was able to get a prescription for 10 mg per day of methadone."
Interesting. My GP nearly did a flip when I suggested methodone. I’d rather not but what do you do?
I was also pointing out the 32 grams piece of this post…
Well I did sleep…until 10:30! Who cares about work? Take a sickie. The boss won’t mind. Wait… I am the boss! Haha! Think I might have to ponder the way forward. Thanks for your help TeddiJ x
well, that is good news-sleep is everything! yes, I am my boss, too-thank god-lol!
some people use kratom for years and others keep it as a backup while they are figuring out their meds. kratom also got me off of methadone quite easily.
if you can get it, Hirsuta is just like kratom but it is non-addictive and still works on rls. you’re quite welcome and glad i was online for you last night.
are you sure you’re not a dealer?!!! Lol!
haha-if I am, then this site is full of them! lol. I’ve learned almost everything on this forum. and I have tried SO MANY things-omg-as most of us have.
I’m curious to try it myself. What type do you take, and how do you take it? I’ll do just about anything in the nights my regular meds aren’t working
I hear you-that is how I found this stuff-on this site out of sheer desperation. first, try some red vein kratom powder from mitragaia.com. you can try small sample amounts. you can also buy capsules, which take a bit longer to work.
powder works in minutes. start with 1 to 1/2 of a teaspoon only, then add more after 30 minutes, if you need it. it is truly disgusting-like drinkinging dirt- but i just use a small amount of water and gag it down. It's worth it as almost immediately (for me) the rls is gone. I keep a teaspoon, a cup, and water next to my bed. I also combine the capsules with the powder sometimes to sleep longer. you can keep capsules in your pocket, too.
hirsuta is another option from teatimebotanicals. supposedly it is not addictive; kratom is for some people, but it works so well for so many issues and for so many people. let me know!
Just tried to order a sampler but Mitragaia does not list UK as possible destination. What a shame, looked good for my RLS! Anyone tried Kratje.eu in NL?
What medications are you taking?
Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Right now I take hydrocodone twice daily. I augmented BAD on ropinerole, gabapentin laughed at me, Horizant didn’t do anything. I see a hematologist and a neurologist to keep my iron level in check (yes, over 100, but it took six infusions to get there). But I keep getting horrible random flares which are made worse by the fact that I have to lie still to nurse and/or to rock babies to sleep several times a day, and get interrupted sleep at night. Neurologist doesn’t want to increase my opioid Rx because “I’m too young, might lead to addiction” etc and so forth.
Most nights, if symptoms flare up I just prepare myself for a terrible next few days. I was just interested in other options that are more readily available so I might not have to suffer.
order samples from the 2 sites I gave you. no need to suffer like that! Horizant and Gabapentin didn’t work for me at all, either.
let me know if you try them, and hang in-things will get much better for you soon. both work almost instantly.
this is a whole new world for me.
Red vein? Any specific kind?
it was for me, too. I had no idea about either one. any red strain should work. try the red bali or red borneo or one of the other strong ones-you can read the descriptions and reviews.
tea time has only one hirsuta but has various sizes.
for red borneo or red bali-or any of the reds-you could order a sample size but I know it will work...so maybe order the $30 one instead.
after you try these powders, you can order the capsules. or, order a sample size of the capsules while you are paying for the mailing anyway.
try to use the kratom more as a backup and not all the time. the hirsuta is supposed to be less addictive and also last longer. I took hirsuta last night and it worked for 5 hours, which was really good for 1 teaspoon.
How much hydrocodone are you taking?
10/325 twice daily. I worry about the acetaminophen daily, but 🤷♀️
10 mg of hydrocodone is a low dose for RLS. 20 to 45 mg is the usual dose to control RLS. Check out the Mayo Clinic Updated Algorithm on RLS which is the latest guideline on treating RLS at Https://mayoclinicproceedings.org/a... and print out the section on opioids to show to your doctor. You could take the hydrocodone separately and then take one 325 mg acetaminophen so you don't increase the amount you take of it. According to the National RLS Opioid Registry at massgeneral.org/rls-registry "very few patients report feeling high" which is the usual basis for addiction and at the low doses one is not likely to get addicted in the sense that most people are worried about. And let's face it, if one is addicted and it controls their RLS, so what.
Sue, you are preaching to the choir. I have already shown my doc the stuff from the Mayo Clinic. Since I get two 10/325 per day, *technically* I am getting an appropriate dose. And it would work fine if I only had to take it at night. However, I have to sit still a lot during the day to hold my infant, and sometimes he won’t sleep unless I am holding onto him. So, I have to split up the medication the best way I can to get relief as long as possible; a single large dose will only last about 6 hours.
Usually what I do is take MORE for three weeks to get total relief, and just suffer that last week before refill time. I’ve spoken to the doc about this, but she remains firm that she will not increase the dose. So, I have to figure out other ways.
The dose is not per day so you are not getting an appropriate dose. Can you change doctors? Or if she is not a neurologist can you ask for a referral to a neurologist?
I have been taking Kratom since 2015 for my RLS. Sometimes it breaks through but very seldom. I take Red Bali only at night to sleep. The green or white strains do not work as well because they are energizing. I take 2 tablespoons of red bali every night and it keeps the RLS at bay. I hope that helps.
By the way I have worked up to that amount over a period of time. I have been at the two tbsp for a few years now and seems to be just right. The white and green strains are for energy if needed, but not good for sleeping.
so interesting to me that you didn’t have to increase after you worked up to the 2 tablespoons, and after 3 years. good to know-thanks!
Hirsuta is supposed to be non-addictive, unlike kratom-so you might ck into that to take a break from the kratom.
Thanks for the tip! Never heard of hirsuta...
Hi I can sympathise completely with what you’ve going through as I’m suffering similarly augmenting with Ropinirole and each reduction it torment. I bought Kratom Red Vein Powder some time ago and simmered a half teaspoon in a pan with a mug of water for a couple of minutes then strained it into the mug with a squeeze of lemon juice and honey which made it more palatable and it worked wonders but my only trouble with taking Kratom is that it’s an illegal substance in the UK and stays visible in blood tests for several days and if your taking that amount regularly it will take months to clear your bloodstream. I only mention this as if I was in a car accident or stopped by the police for any reason I would be tested for alcohol and drugs, police are cracking down on both and I would likely lose my license. The only way around this is if you can get it prescribed for a medical condition which RLS is. It’s a sad fact that it was legalised in Uk under EU rules but BREXIT I’m afraid put paid to that. Finally not sure why Kratom no longer works but if you’ve been taking high doses for a long time your body may now have built up a tolerance. Try and find a Neurologist who specialises in RLS, not many around in the UK and he may be willing to prescribe Opioids but you’re likely to have to go privately. I wish you well in your search we are very poorly served by the medical profession in this country as although RLS isn’t uncommon on the contrary between 15 and 27% of the population in UK suffer but little research is carried out and it’s a disgrace
Holy f**k!!!!!
Hello again Theonlypetied. Well I didn’t expect that reaction so apologies but can only tell you what I know having suffered RLS for in excess of 40 years so wish I could take Kratom legally every day as have been walking around the house in circles from 2.45am until 4.30am then 5.54am till now 10.55 and still going with really painful legs and knees, so I do understand and as am falling asleep 😴 on my feet will probably have to take Kratom tonight to stay sane but am trying to get it prescribed but could be a long process. We all have to fight for what we need but the system is stacked against us.
haha! I just never thought of the driving consequences so it was a bit of a shock. Doh! Sorry you’ve been so rough friend. Thank you for your honesty and advice. ATB. Pete
Do you have a neurologist or gp who could prescribe gabapentin? Im taking 2400mg...and it works! Just very groggy...but no rls. I know how you feel!
I’m weaning off Pramipexole which is part of the problem. GP wants me to try Pregabelin.
Sorry to hear this. Tolerance does happen and many rotate strains to avoid this. As others mention, it's illegal in the UK since 2015. Can you ask your GP to consider Buprenorphine? If they object you could see Prof. Walker privately and he would prescribe it, but you'll have to stop kratom as it is used to detox from opioids.
I’m on opioids as well. I think I just need to ride out the pramipexole withdrawal storm and get on Pregab asap.
Ahh yep. Nothing really helps when the withdrawal hits.There are a few lucky people who manage to escape horrendous withdrawal and they all started gabapentin or pregabalin while reducing Pramipexole/Ropinirole.
So you could ask your GP to start thr pregabalin now and build up slowly over 3 weeks.
Start at 75mg and add 25mg every 2 nights up to 150mg at night.
Stick at that until a month after the last Pramipexole and only then consider upping to 200mg of above it the RLS is still bad.
What opioids are you taking? Tramadol is the only one that also causes augmentation, so best avoided long term.
Cannabis was the only thing that helped me during withdrawal. It's now legal in the UK, but expensive.
Keep going and stay strong. Once off Pramipexole, that horrendous all over, intense RLS will reduce.
Take videos to show your GP as they need to learn how bad Pramipexole augmentation and withdrawal really is.
Thanks Joolsg. I think my GP wants me off Pram before I go onto anything else. I forecast rough times ahead. I take 8 Codeine, 8 paracetamol and 2 neproxin per day to help with Fibro type global and random pain. I get it so bad in my legs and with the RLS and PLMD, it’s hell at times. I tried CBD but the RLS/PLMD went off the charts.
What about medical cannabis higher in THC? CBD never did anything for me. Medical cannabis is only available on private prescription & it's quite expensive but if you could get enough for one or two month's, it might get you off Prami.It's cruel to expect you to go through Pramipexole withdrawal without starting replacement meds. I wish GPs understood how difficult and traumatic it is.
My son is so concerned for me to get relief from my nightly rls that he has done a search and found Dr Simom Wharton who specializes in sleep disorders and lists rls. He is contactable at Bupa Priory Hospital, Edgbaston. Only had this today but wanted to pass it on. However my order for red and green Kratom came from NL in 48 hours but the packs are of Green Moringa Tea (capsules) and it is Bank Holiday so will not get a complaint to them till Tuesday so another £75!. I am just finishing today a two week course of Amoxycillin anti-biotic for acute prostatitis, which has been causing sleeplessness as well as some particularly bad nights with rls. I do get some rls relief wearing Restiffic foot wraps for 1to 3 hours before going to bed. These are no longer available in UK, only US, so as mine are wearing out don't know what I will do. Hence ready to try Kratom. Won't touch prescription drugs which most posters on this site seem obsessed with, even though they are useless and cause augmentation and then the dreaded withdrawal symptoms! Have taken Mag Citrate with P-5-P B6 for past four years which do seem to help reduce the rls some nights although it may just be coincidence. My worst nights are when one leg/foot goes for a couple of hours, stops and I turn in only to have the other one start up an hour or so later and have to wrap for another few hours. I have had lots of nights like this and had no sleep or just two hours of exhaustion between 6 and 8am when my body clock wakes me up whether I want to or not! The temporary relief from walking is not even practical when one is so dog-tired and even prone to stumbling (I am 80 this year).
Keep sharing on this site as any sharing of experiences or glimmer of light at the end of this dark tunnel is helpful!
I will hope to report a break-through with Kratom. By the way there is loads of discussion on Reddit, including from people attempting to kick off strong Opioids/Methadone etc. Some states are banning Kratom as b-g P-h---a are trying to stop anything natural or nutritional that cannot be patented to make them billions!
Moringa tea IS kratom. It's illegal in the UK so they send it as Moringa herbal tea so it isn't seized. I guarantee it is definitely Kratom.Kratom can cause as many addiction issues as opioids for some people so I only ever mention it if people are withdrawing from Ropinirole or Pramipexole and are absolutely desperate.
I don't know whether Dr Simon Wharton is any good but you'll know soon enough. You can ask him if he is familiar with the Mayo algorithm and if he will recommend iron infusions if your serum ferritin is below recommended levels.
Also, if he suggests Ropinirole, Pramipexole or the Neupro patch, he's not a knowledgeable RLS specialist. These drugs are no longer first line treatment.
First step is to raise brain iron, second step is to replace trigger meds like anti histamines, anti depressants, statins etc with safer alternatives and THEN medication is prescribed.
Pregabalin or gabapentin are now first line drug treatment.
Sounds like you have a pretty good grip of life with RLS/PLMD and the issues that surround the conditions. I use Kratom, in fact, I’ve just poured me hot mug of Moringa Tea which is Kratom as Joolsg has said. I’m transitioning from Pramipexole onto Pregabalin and the Moringa/Kratom is essential for me but I did have to reconcile its illegality with my own moral stance on illegal substances. I wouldn’t be using Kratom if I could find a legal alternative. I don’t know about you but I find avoiding alcohol, carbs, refined sugar and caffeine has helped reduce my RLS symptoms. Everybody has a different experience of RLS and you’ve got to find what works for your RLS. I wish you the best in finding relief from the ‘satanic hell’ that is RLS/PLMD.
How old is Prof walker
I would ask him should he ever relocate who does he feel would give you the
same level of care ?
My prescriber said he may night be there next year , so I am trying get myself secure
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