KRATOM??

[SwimLyn]

I've seen several posts mentioning Kratom but I have never come across this ? Can someone explain its relation to RLS please ?

[SueJohnson]

In higher doses, kratom is said to have opioid-like effects such as pain reduction, reduced anxiety, relaxation, and sedation .but is not an opioid,. It is often used to help get off DAs. It is banned in the UK but there is a way to get it.

[SwimLyn in reply to SueJohnson]

Thanks for prompt reply Sue & as always telling it like it is in the RL world!

[Joolsg]

That's because it was made illegal in 2016 in the UK. It's an asian herb which acts on the opioid receptors and therefore reduces RLS. BUT, tolerance develops quite fast so it is best used only for a short time.In extreme cases, like severe withdrawal from Ropinirole/Pramipexole, it can really help so we do include links to enable people to buy it.

[TeddiJ]

I often mention red strain Kratom because I found out about it on this site. It completely saved me when I was out of options after getting off the DA's (using methadone). It stops RLS within minutes.

I was waiting for months to get an appt. with a true RLS doctor and had been abruptly cut off from methadone 2 times. I suffered horrible withdrawal. It performs completely like an opioid and saves you from the withdrawals.

See below for UK ordering options. In the US, it is very easy to get in shops and online and it's legal in many states.

There are downsides, however, and you can definitely get hooked on it. Eventually I had to take more and I also started jonesing for it by late afternoon/early evening (this means anxious wringing of hands, jumping around, etc.) I had to carry capsules of it everywhere, or sneak powder in a bathroom like a druggie. When I finally got another opioid prescription, it was an easy swap: much less messy and disruptive and one small dose gets you through a night. I tried to hold off though, as I was seeking any solution other than an opioid.

Kratom is easy to get, no doctors, and natural, but I doubt I will go back to it, unless I get cut off again. It is a life-saving backup for me!

[GaryHB]

Kratom helped me get over the hideous withdrawals when I stopped Pramipexole. It was the super helpful members of this forum that told me about it. It controlled the RLS very well. I bought it from a local UK supplier here, who sells it openly:

kratom.org/

This website is very helpful to educate yourself on Kratom:

kratom.co.uk/

All the best!

[SwimLyn in reply to GaryHB]

Thank-you Gary that is very helpful .

[TeddiJ in reply to SwimLyn]

PS-in addition to my above post and Gary's: in the UK you can also order it from kraatje.eu and it comes as "tea."

[macewan13 in reply to GaryHB]

Hello GaryHB,

Thank you. Your article was very helpful. I looked at the Keaton.org site, which was very informative. However, I am still confused about which kind of Kratom to try and how much to take. I tried their little calculator but, as RLS doesn’t seem to feature, I didn’t know whether to click on pain or sleep. I am currently on the maximum dose of Gabapentin and Tramadol but still have ghastly nights (not every night). I would like to have something to hand for those nights.

Thank you, too, to TeddiJ for the information about Kraatje.eu. I live in France and they seem to deliver to France but, once again, I am confused about strains and dosage.

[SueJohnson in reply to macewan13]

How much gabapentin are you on as the maximum is 3600 and it needs to be taken in divided doses of 600 mg 2 hours apart which would be ridiculous for 3600 mg.? I suspect you are not on the max dose and/or are not taking it in the correct way to get the max benefit. Let me know and I can advise you.

[macewan13 in reply to SueJohnson]

Thanks a lot, Sue. I am on 1800 taken 3 times a day, 5 hours apart, the last dose being at ´7 p.m. My doctor is one of the top neurologists in France for RLS. She doesn’t want me to go any higher, although I know the instructions say that 3,600 is the maximum. She has just changed me from Tramadol to Buprenorphin. Maybe that will be better. I would, however, like to have a backup (kratom?), just in case.

[SueJohnson in reply to macewan13]

Buprenorphine is better. Understood about the 1800 mg but 5 hours apart? Are you having RLS all day? Usually it is only at night and then one would take 600 mg 1 to 2 hours before bedtime, then 600 mg 2 hours before that and then 600 mg 2 hours before that.

Are you still on the neupro patch?

Have you had your ferritin checked? If so, what was it? 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, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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 some advice.

[macewan13 in reply to SueJohnson]

Hello Sue,

I’ll try your tip for taking thé Gabapentin closer to bedtime as I don’t have the RLS during the day. Maybe they do things differently in France. I presume the thinking is that it keeps the levels high all the time.

The buprenorphine is definitely better than the Tramadol but still doesn’t get me through the night.

I stopped the Neupro a few months ago because I was augmenting.

Yes, I regularly have my ferritin checked. It is always above 100., so no problems there.

Thanks for your advice.

[SueJohnson in reply to macewan13]

That's the way gabapentin is used for nerve pain so that's the way the leaflet says to take it. It is used off label for RLS.

How much buprenorphine are you taking?

[macewan13 in reply to SueJohnson]

I am taking two 0.2 mg Buprenorphine at the beginning of the evening. So far, it’s working better than the Tramadol.

[SueJohnson in reply to macewan13]

That's great !

[SueJohnson in reply to macewan13]

You may find taking the gabapentin only at night that you don't need as much since you were only taking 600 mg at night before, or cross your fingers, that it allows you to regularly sleep through the night. Even if you find it allows you to sleep through the night you might want to try reducing to see if you need that much. If you decide to try taking less you want to withdraw slowly, like 100 to 200 every couple of weeks to avoid withdrawal effects.

If taking it at night that way makes no difference then it may mean your dopamine receptors were damaged from taking Neupro and no amount of gabapentin will help and it was the tramadol that was helping not the gabapentin.

[GaryHB in reply to macewan13]

Good morning. Sorry to hear you are having a rough time. TeddiJ's advice above is worth remembering. Kratom is tricky because you become dependent on it. However, it can be a life saver as it helped me when I had to change meds. I am not qualified to offer medical advice, Sue or Jools would be the ones to ask, particularly as you are already taking Gabapentin and Tramadol. My understanding is that you may have an issue with the meds you are taking which dont seem to be working? I would be careful of adding Kratom into the mix as you could end up with nothing working well and no where left to turn? I used Kratom alone without any other meds. Then I stopped Kratom to switch on to something else and I only use it in emergencies. Back to your question, Red Bali is the one most people use for RLS. The red strains are particularly suited to pain management and therefore, RLS. You start very low, like 1g and see how you respond to that. I bought a letter scale which measures in very small amounts. When I was taking Kratom alone, I took 3 to 4 g an hour or so before bed and another 3 to 4 grams in the middle of the night when RLS kicked in. I am currently taking Tramadol which has stopped the RLS completely. TeddiJ knows more about Kratom than me and Sue and Jools are your go to for medical advice. I hope this helps.

[macewan13 in reply to GaryHB]

Thank you very much, GaryHB. That is exactly the information which I was looking for.

[GaryHB in reply to macewan13]

I forgot to mention - Kratom tastes awful! I used to add a bit of hot water to dissolve it, then mix it in fruit juice or sweetened yoghurt. That helps get it down. Hope you find a solution soon. All the best.

[macewan13 in reply to GaryHB]

Thanks - sounds delicious

[Wanted-sleep]

I use kratom if tapering off meds or when they aren’t doing the job.

It is awful to consume. Worth it though! Really worth it!