my husband started using kratom about 6 months ago because we can’t get cbd where we live. It was working ok but it’s no longer Easy which has been my problem with it from the Start. We will go back to usa in about 6 weeks. Until then his only option is kratom. he can’t use opiods because he’s bipolar and they unfortunately trigger mania. I don’t know what to do. I hate to see him suffer. I want him to do some major health panels in the states to see what he might also have going on nutritionally. His iron levels were checked a few years ago… they were ok. He’s had an Rls issue since childhood… and it’s only been the last 8 years on and off opiods , and pramipexole, that his symptoms are worse. Now the kratom is no longer working to make things worse he’s depressed. I also wonder if anyone can say if buprenoprine or Suboxone also trigger mania? Does anyone here use lithium with kratom… any advice welcome. Thank you
kratom issues : my husband started... - Restless Legs Syn...
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
I also just read about this on pub med. it was a recent article. But I don’t hear anyone speak about it on this forum. Thank you
Put it in the search box at the top right corner.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
yes thank you… he knows all of these things. He’s got a great diet.. I’m the cook in the house. But appreciate all the suggestions very much
he’s not on any meds but does use some basic supplements… what makes them worse?
Also he doesn’t specifically follow a low Oxalytes diet… we do eat a lot of vegetables. Many good vegetables have Oxalytes… so not sure what to do here
What are the supplements he is taking?
vitamin c, d , co q 10 , spirulina, bee pollen, NAC but only recently… mostly follows anti inflammatory diet. Eats real clean. Does drink coffee 1 cup early morning most days. Otherwise we have a really clean diet. No sugar no processed foods. He’s not currently doing magnesium as sometimes it’s a aggravates Rls. I’m trying to get him to use msg glycinate. What about Glycine at night?
I’m also wondering about creatine but worries it may aggravate restlessness.
Also wondering about things like, Rapamycin… but not sure how easy it is to get.
Rapamycin diy-er here - haven’t noticed an effect, positive or negative, on my RLS. Be careful with it if you try it. Make sure you really understand the protocols. It has not been studied in humans for longevity/health span use but there’s a big study being conducted now if I’m not mistaken.
yes agree… I was just curious if it would help rls.. thank you for the comment
I could see it helping theoretically, especially for people whose RLS is worsened by inflammation. Unfortunately I haven’t gotten to that point but I’m also still trying to figure out the tolerable dose for me.
Well, here's an interesting article about Rapamycin - mostly an anti-aging supplement...
interesting you mention collagen supplements.. we use it in the smoothie along with pure whey protein.
Collagen supplements contain hydrolyzed vegetable protein which contains MSG which is known to make RLS worse for many.
not pure collagen sources.. as it would only be a naturally occurring msg due to glutamate. Which is also in meat sources too.
Is he still on pramipexole?
no for sure not… that was the start of augmentation years ago.
RCHD - I’m sorry to hear of your situation. Has your husband been using the same strain of kratom the entire time? If so, you might have him try a different strain. When I was using kratom, I made the mistake of using the same strain over and over, and within a few months I noticed that the effect changed. I since learned that rotating strains is advised in order to prevent building up tolerance. There are many strains of kratom, ranging from slow (tends to be relaxing; the best for RLS in my experience) to fast (tends to be stimulating). The vendor I used offered around 6-10 slow strains, and I found that rotating them worked best. My best wishes for success.
Has he tried Gabapentin or Lyrica? My husband is bipolar also. He was treated with TMS. It helped him greatly, but he needs a "refresher" every other year or so. TMS is covered by most insurances. Also it is noninvasive and he can drive himself. The newest machine is only a 3.5-minute treatment. The older ones are about 30 minutes. principiumpsychiatry.com/tm...
I don’t know TMS ?
He tried GABApentin briefly but the lower cost one as it was the only one available where we live. He didn’t like the way it made him feel. Is Horizant the more expensive and better quality ?
Horizant is just a 24 hour version of gabapentin or pregabalin. It is very expensive but and most insurances don't cover it. However Horizant has a prescription savings card which can make it relatively inexpensive at horizant.com/savings
ok and what about enocarbil ?
Enocarbil is just another name for horizant.
ok thank you !
Not sure what type of kratom you were using, but when I first started using it, it fairly quickly started not working, as well. Then I found a company online called kratomusa.com, and they have this powder called NPP. It works GREAT!! I used it for a couple of years without any lessening effects. It was WONDERFUL!! The only reason why I stopped using it is because I found a new neurologist who prescribes me a "cocktail" of three meds that take care of my RLS, and I no longer need the kratom. If you have any questions about it, let me know. I can give you the info on where to buy it online and instructions on how to take it.
ok great thank you, I have not heard of Npp? Is it also kratom?
It is definitely kratom. This company makes their own blends (like marijuana shops have all kinds of different blends). I think the NPP works so well for me is because it is specifically designed for those in pain. So my feelings were that if the NPP blend is designed to help with pain, then maybe it will help my RLS. And it did...almost immediately. I am pretty sure you can read the details about it on their website. Good luck!
Horizant is the brand name of gabapentin.
For restless legs syndrome (RLS), the antiepileptic pregabalin (Lyrica, Pfizer) is more effective, with less augmentation, than the dopamine agonist pramipexole (Mirapex, Boehringer Ingelheim), according to results of a year-long multicenter randomized controlled trial.
Lyrica (pregabalin) is a controlled medication but more bioavailable than Gabapentin.
TMS has no side effects, as far as I know, except some mild temporary pain at the treatment site. If you google it, you might find a treatment place near you. Maybe discuss it with your psychiatrist. I highly recommend it. It changed my husband's life.
Here is an article I found from the Mayo clinic about Kratom. mayoclinic.org/diseases-con...
is TMS helpful to restless legs and bipolar?
TMS is transcranial magnetic stimulation. It is used for difficult to treat depression.
There have also been a few studies on its application to RLS however further studies are needed. TMS for depression targets a different area of the brain to TMS for RLS.
I posted on TMS on this forum a while ago as did member Arjiji.
No, not RLS yet, but they are studying it. However, if the bipolar is gone, he might be able to take medications that otherwise make him feel funny or cause mania. A lot of people get cured, from depression, for good. You'd have to asked if that is true for bipolar. All I can say it helped my husband greatly and he has bipolar. His RLS is treated with Methadone for the last 10 years. The dopamine agonist he had been on for more than 20 year caused augmentation.
TMS (Transcranial Magnetic Stimulation) Here is a link
Horizant is the 24 hour version of gabapentin.
ok what’s difference between neurontin, Horizant and enocarbil?
Aren’t they are forms of Gabapentin?
Neurontin is just another name for gabapentin. And as I mentioned enocarbil is just another name for Horizant which is the 24 hour version of gabapentin.
thank you ❤️
Lithium make RLS worse for most. You say his iron was OK - Was that his ferritin and do you know the number because what is fine for others is not fine for those of us with RLS? And if it was ferritin did he stop any iron even in a multivitamin for 48 hours before, fast after midnight and have his test in the morning. If not, it could show it artificially high. Has he tried gabapentin or pregabalin? For depression Wellbutrin or trazodone are OK with RLS.
what’s the best level for Iron And ferritin
You want it to be at least 100 and some experts suggest 200 to 300.