Kratom working for now...

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Kratom working for now...

Post by SnOman »

Hi All,
I am new to the forum. I am 37 yrs old and have had RLS/WED as long as I can remember. My mother has MS and my grandfather had Parkinsons. Up until last September, the episodes of RLS only affected me a few times a month, and I had no idea what it was.

Last August I had surgery to remove a kidney stone that was stuck. I had two minor procedures - first a stent was placed and then the stent and stone were removed a week later (this was my third kidney stone in the last 6 years, the first two I passed without surgery). After the ordeal was over, my episodes of RLS began occurring more frequently. At first it was about once or twice a week, then it slowly increased to about 5-7 days a week in arms and legs (night only, while relaxing after kids went to bed or waking me up after falling asleep) by November. After sharing this with my GP, he referred me to a neurologist at the MIND Clinic in Farmington, MI.

I have had my iron levels checked twice and my thyroid levels once, both were normal. I was first prescribed requip, then mirapex and both made my leg muscles and joints very painful the following day, and they became increasingly more painful after each night of taking the meds. I believe I was taking the recommended starting dose for each, which doubled and remained the same after a night or two of taking it. My neurologist said he has never heard of these meds causing leg pain. They did help the RLS and I was able to sleep, but the leg pains were unbearable.

My doctor then prescribed me Gabapentin, 200, then 300, then 600 then 900 after about a month at each dose. The Gabapentin makes me very tired and sleepy and a little dizzy and sometimes I can fall asleep initially for a short time even with sensations, but then I wake up and stand and walk while half asleep in my mind... In May, my doctor changed my med to Horizant but still the same story and symptoms are popping up ...

After reading the "non-pharmaceutical" section posts here,I have tried Hylands, magnesium supplements, Chiropractic and TENS, massage and then ordered Kratom online (after doing my own research on mechanism, risks and online vendor quality/safety. The Kratom is working! I get relief after about a half hour of drinking tea made from it! It is only effective for about 3 hours, so I'm sleeping 3-4 hour stretches then having another cup of tea, but it is better than no sleep or just an hour or two. I am worried that the Kratom may increase my chances for another kidney stone as my stones are oxylate, but for now it is helping me get sleep!!

Polar Bear
Moderator
Posts: 8790
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Kratom working for now...

Post by Polar Bear »

This journey with WED/RLS is an inconsistent and arduously unpredictable one.
You have already tried the DAs, the requip etc. and found they are not for you. I have heard of the leg pains before.
Also many people have reported have onset WED or worsened WED following surgery.
There are other prescribed medications and indeed a medication cocktail is often the answer.
It's great that at present you are having success with the Kratom.

You have said that two blood iron checks were normal. Were these Ferritin Serum level blood checks?
This is very important, your ferritin serum level should be checked. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Is your GP amenable and cooperative and well versed in treating WED.
For your own information I'd recommend this book.
It is an easy to read book and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. The authors are some of the foremost experts in the treatment of WED.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Kratom working for now...

Post by ViewsAskew »

Any neuro who says he/she has not heard of leg pain with pramipexole or ropinerole is not very experienced with these meds. It's on the list of side effects!

I echo Polar Bear's comments. It's very possible the blood loss from the surgery triggered the increase in symptoms. If you do not know both your serum ferritin and your hemoglobin, please find out.

Glad the kratom is working. Hope it continues to for a long time.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Re: Kratom working for now...

Post by SnOman »

Hi and thank you for the responses and questions. Yes the blood tests were ferritin serum levels. All I was told was they were normal, so I will have to find out about specific levels. I don't think hemoglobin was checked. My GP prefers to leave everything regarding the RLS/WED to my neurologist. I am also concerned about the fact he said he had never heard of leg pains with mirapex and requip. I forgot to mention diazepam was also tried for a short time with no success regarding WED sensations, just made me very sleepy without being able to sleep. My 3 month August appt was just rescheduled by the dr office for the second time, pushing it now to two weeks later than my original appt. My wife wants me to try another doctor, and I would if I could find one that I know has a lot of experience with RLS/WED treatment... I know University of Michigan has some experienced Drs and I may try there if I can't find any dr closer to home. Thanks again for the advice and infirmation

SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Re: Kratom working for now...

Post by SnOman »

InfOrmation!

SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Re: Kratom working for now...

Post by SnOman »

I just read in the Pharma-Sticky that Ditropan has been related to increased RLS in some people. Does that mean increased RLS while the med is actively in your system or could it cause mild RLS to become worse for the long term? I took Ditropan while I had a stent in for a kidney stone.

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Kratom working for now...

Post by ViewsAskew »

Sn0man, I think the current belief is that they only cause it while the drug is active.

I think, eventually, they will rethink that. I think some substances may trigger changes in our brain chemistry that then trigger or exacerbate WED. But, that is a theory! I have no data to prove it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jul2873
Posts: 445
Joined: Thu Nov 15, 2012 7:32 pm

Re: Kratom working for now...

Post by jul2873 »

Hi Snoman,

So glad the kratom is working. I've been using it to manage my WED for over a year now. I've tried different strains and found that red leaf Borneo works best for me. I like Velvet Soul best as a distributor, but they've become very cautious now because the FDA is paying more attention to kratom. It's still legal in the U.S. but because it's not approved as a food, I understand shipments are sometimes confiscated. At any rate, if you want to try Velvet Soul you can only bring it up on their search engine by typing in the kind (red leaf, meng da etc.) without the word kratom.

How much are you taking? The online chat groups, which are often populated by kids trying to get high on it, recommend way too much, I think. Another poster here and I (we e-mail occasionally) found that a good dose is a half to a full tsp. which is about 1-2 grams. I take about a gram--sometimes a little more if the WED is esp. troublesome--4 or 5 times spread over 24 hours--so about 5 grams a day. I don't like to bother with brewing tea, so (using those little plastic 2 ounce "jello" containers) I mix it with orange juice and then let it sit for about a half an hour. It takes that long for the kratom to dissolve into the juice. I make up a tray of these and leave them in the refrigerator, so it is easy to grab one in the middle of the night, as I too find a dose only lasts about 2-3 hours in the night. If the RLS flares up in the day (if I'm sitting a lot) I find a dose last 5-6 hours.

Oh, you also might want to get some empty capsules and one of the little machines that can fill them. Amazon has them. I make up capsules for when I'm traveling as they are much more convenient.

Good luck to you. It's been a very good solution for me. It's effective and--as long as I drink lots and lots of water--there are no side effects. Without drinking lots of water I'll get headaches.

Mary

erika13
Posts: 30
Joined: Sat Apr 06, 2013 4:54 pm
Location: Tokyo, Japan

Re: Kratom working for now...

Post by erika13 »

Hi Snoman,

I’m also so glad to hear that you have found kratom is working for you.

Like Mary, I’ve been taking it for over a year now and I’ve found it to be incredibly effective for managing my WED.

I take about half a teaspoon to a teaspoon about an hour before bed or if my symptoms start earlier, and then another ½ teaspoon when I wake up. It takes about 40 minutes for the kratom to kick in. I take it with water and some pomegrante juice concentrate.

I also take the red leaf Borneo strain and have been getting mine online from Bikhuk, who I have found to be excellent.

I haven’t increased my dose over the past year and don't seem to have built up any tolerance .. as Mary mentioned, do drink lots of water.

I really hope it continues to work for you!

SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Re: Kratom working for now...

Post by SnOman »

I take anywhere from 3-5 grams of Kratom for it to effectively erase the RLS sensations. Maybe mine is less effective than the Kratom you get (maybe physical differences, body chemistry also). I use mostly red vein Thai or red vein indo as my vendor (mmm speciosa in Texas) calls them. I don't get any sort of "buzz" from it, but it does give me unwanted energy in the middle of the night sometimes. A few other strains I have tried have made me sick to my stomach. Yes on the extra water! I make tea with the juice of a whole lemon as recommended by my urologist to help lessen the risk of more kidney stones. I also brew it with fresh ginger as I figure it may help with upset stomach and I have read ginger is good at fighting inflammation. Maybe I will try your vendors, especially bikhuk as the price for the amount seems a lt better. I pay about $50 including shipping for 100 grams and it seems like my Kratom may be less effective (I do consume all the plant material even though I am making tea, I just continually stir and drink). It looked as though from what I read online that bikhuk came from overseas and some people were having problems with delays and confiscation, so that worries me a little. How long does an order take to arrive from bikhuk and have you ever had a problem? Taking 3-5 grams sometimes 2x per night is getting expensive as well as the fact I need to take the least amount possible due to all the oxylates and my kidney stone risk. Thank you for the advice and information and sleep well!

jul2873
Posts: 445
Joined: Thu Nov 15, 2012 7:32 pm

Re: Kratom working for now...

Post by jul2873 »

L-theanine taken at night with the kratom and some extra magnesium help the sleeping issue for me. I usually take 400 mg. but my husband--who is a lot larger--takes 600 mg. If, in the night, I have trouble getting back to sleep I take 200 or 400 more of L-theanine. L-theanine doesn't seem to have any side-effects, although I notice my blood pressure is lower and I think it must be that or the kratom.

I like the Velvet Soul kratom because is seems to be more finely ground and denser than any other I've taken, although I haven't ordered from bighuk so I can't compare directly with them. Perhaps if you don't takes so much at once, but divide it up into smaller doeses, yours stomach might not get upset.

Good luck to you. I hope it keeps on working.

erika13
Posts: 30
Joined: Sat Apr 06, 2013 4:54 pm
Location: Tokyo, Japan

Re: Kratom working for now...

Post by erika13 »

Hi Snoman,

This is my third order from Bikhuk and I have never had an problems.
I have tried a few samples from other vendors, but I have found Bikhuk's "Borneo Red Vein" the most effective.
I am currently living in Tokyo Japan and it seems to take about a week. It gets shipped from Indonesia.
The last package which just arrived was wrapped up as a gift.

I would suggest trying the powder mixed with some juice or juice and water and see if that makes a difference.

All the very best wishes.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Kratom working for now...

Post by badnights »

Hi Snoman.
I'm replying kind of late, I see this topic has been inactive for a while.

I tried kratom a few times, and milligrams do nothing for me. I need amounts measured in grams to affect the WED at all. I feel no "high" or "stone" but sometimes feel off for at most half an hour. And the beneficial effect on the WED does not act much longer than that. I think the difference between people needing thousands vs hundreds of milligrams might be a matter of symptom severity, but it could also just be different body chemistry, and possibly (least likely in my oipinion) the variety of leaf.

I also had my WED change from a sometimes annoyance to a life-altering devastation after an operation. For me, it was a ligament reconstruction in my knee. This story of operations triggering a permanent WED worsenig is common, but no one has come up with a comprehensive theory as to why.

I hope you have the energy to find a decent doctor. You need someone who either knows or is interested in learning about WED.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

SnOman
Posts: 19
Joined: Sun Jul 13, 2014 3:08 am

Re: Kratom working for now...

Post by SnOman »

Thanks Beth, yes I need anywhere from 3-5 grams of Kratom for it to start working and 5 is so far the max. I have found quite a difference among the different kinds of leaf vein, the main difference being the extent to which kind produces an unwanted "alertness/wakeful" boost similar to coffee... The "red vein" kind seems to cause the least amount of this, the only side effect I seem to get. I think she was talking about the l-theanine as far as milligrams.

I discussed the Kratom tea use with my neurologist and gave him some information (scientific) and he thinks the calcium channel blocking and opioid receptor binding effects of Kratom are providing relief.

I am now back to gabapentin 9oo with the Kratom to eliminate symptoms. The gabapentin
Seems to help combat the "wakefulness" effect of the Kratom and leaves me with less sleepiness the next day compared to Horizant. My Dr was very intrigued by the information I gave him on Kratom and said he was going to look into it further and discuss with colleagues...

I am now worried though because I recently found out there is a michigan bill that passed in the House (HB 5707) to make Kratom a schedule 5 substance. I am sending a letter about my experience to my many representatives I hope it helps...

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Kratom working for now...

Post by ViewsAskew »

That indeed is one of the problems with non-prescription medicines and supplements. We never know when we might no longer be able to get them. Then again, many of us taking opioids have had them move to a more critical schedule, making them almost impossible to get.

The worst would be for a state to completely outlaw it, which I think Wisconsin may have done.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply