New to group. Did I augment??

[Dr.Placebo]

Hello, I am new to the group and want to ask what the group thinks of my story and whether I augmented on DAs as I believe I did. My symptoms appear to be different from most of the people posting; for instance my RLS has always, from day one (15 years ago) been in my hands, never my legs. Same deal tho, intense need to move, massage hands, crack knuckles; onset at night right after laying down to bed or sometimes in evening when falling asleep on the couch, when it got bad i wanted to smash my hands to a pulp with a brick (never did) although I did sometimes used my heels to grind my hands onto a tile floor lol. Over the years the above RLS sx went from intermittent to clusters of two-weeks to every night. I never had ANY involuntary movements while awake or falling asleep, but then I had a sleep study 4 years ago which showed PLMD. At that point the sleep doc (a pulmonologist) prescribed ropinerole with no warning about possible adverse effects. I knew nothing about augmentation and suspect neither did he. I was told to start at 0.5 and increase gradually by half tabs "as needed" (how did I know what I needed since I did not feel my PLM?). I adjusted the dose to treat my hands and improve my daytime sleepiness up to maybe 1 to 1.5 mg. After just a short time (weeks? a month?) I began experiencing completely new twitching movements which started in the center of my chest and radiated out to my arms causing an involuntary jerk or spasm. It was very disturbing, scary actually, like an electric sensation. I thought, "ah, I am having breakthrough PLMD; I better increase my dose." Eventually I noticed that the more I increased my dose the worse the shock-like spasms in my torso became, and I told the neurologist I thought the ropinerole was causing it ( I knew NOTHING about augmentation). He said it didn't sounds like RLS or PLMD and suggested I see a psychiatrist or a neurologist. I told him I was quitting the ropinerole. I stopped cold turkey and the upper body spasms resolved in about 2 days. Then I fired him. I have been managing my disease on my own ever since. There is a lot more to this story, but I will stop there and first verify that this was indeed augemntation.

[Dr.Placebo]

Addendum: I remember now, the reason I had the sleep study and saw the Sleep specialist was because of Excessive Daytime Sleepiness, not RLS specifically. I had been diagnosed with mild-mod sleep apnea (normal BMI) several years prior and assumed that was the cause of my sleepiness. After the sleep study he told me my sleepiness was not cause by sleep apnea, but by periodic limb movements causing frequent partial arousals. I was surprised and skeptical because my wife never told my I kicked my legs while sleeping. Anyway, the subsequent story is as above. The point is, at the time I started ropinerole for periodic leg movement disorder I was managing my RLS just by getting up at night, doing something, and going back to bed. It wasn't yet persistent. sorry, very confusing story. confusing for me, too...

[jul2873]

Hello Dr. Placebo,

I have found your postings very informative, esp. the one about how Lyrica made you so sleepy and "hung over" in the morning. My primary care (who I think I need to fire) put me on it to get me off of kratom, because she thinks I have "an addictive personality" since I won't give up the kratom for the Lyrica. I see now that probably the reason I felt so awful in the morning was that I was coming off the Lyrica, since I was just taking it at night. And I tried to explain to her that I don't take the kratom to get high (I don't get high) just to get relief from the RLS. But it was clear she didn't believe me, and then told me I was probably addicted to chocolate and coke-a-cola as well. Since I don't drink alcohol at all, and am not at all over weight--although had I stayed on the Lyrica I probably soon would be--she couldn't find anything else to complain about. But I think she may have put me down as "non-compliant" which may mean I'll have trouble finding another primary care. I may not need one, except I had a TIA in January, and have arthritis in my hands and feet. And I've had a knee replacement. So I'm seeing other doctors for these issues, and think I need a primary care to keep track of all the meds they keep prescribing. But maybe not. Maybe I should look for a doctor who specializes in natural medicines.

At any rate, I've been managing the RLS for the last ten years with kratom. And I do take more now--a dose for me used to be 1/2 tsp. in a little cup of orange juice. Now it's a tsp. But I feel fine with it, and it does still control the RLS. And, luckily for me, the cost is not an issue. Plus I'm 78 years old, and figure I just need something, if I'm lucky, for probably no more than 10 more years. I might even be able to go on a DA, which I have steadfastly refused so far.

I've had RLS for a good thirty years, but was doing okay with getting up a few times a month and walking around. Then my adult children moved across the country, for job changes, and a cross country plane ride was really tough with RLS. It was what convinced me to try kratom. The kratom was like a miracle, and i guess I still think of it like that. I usually take 1 tsp. in the early evening, and then another one at around 10 p.m. Then I usually wake up around 1 a.m. and drink another little cup or orange juice and kratom, and then again around 5:30. I don't usually need any during the day unless I want to take a nap. Then I'll drink another little cup. Occasionally the RLS is worse, and I'll take a bit more.

Besides the kratom, I find a hemp cream put out by a company called Charlotte's Web (in Amazon). I rub the cream on my hands and feet and my legs. Then I pull a soft, stretchy, cotton bandage type thing, and that usually calms my legs down so I can sleep, although the kratom in orange juice works pretty fast too.

Thanks again for your postings.

[Dr.Placebo]

Hi jul2783,

Thanks for replying to my post. I have now heard from a few people who had no trouble with kratom, so maybe I will give it another try, but i'm very scared about possibility the kratom is causing augmentation (can anyone else weigh in?). Augmentation is scary for me, since it appears, from what I have experienced and read, that the brain changes are permanent. My symptoms completely changed when I took ropinerole and never reverted back to what they were. I have refractory RLS, having failed DAs and Lyrica, and have motor sx which prevent sleeping both at night and during the day unless I am medicated with something. What that sometning is is still an ongoing experiment I am conducting on myself with what i have at hand, since as you have experienced, doctors are rarely helpful or knowledgable about RLS. As in your case, they prefer to blame patients for non-compliance or drug-seeking or lying about their symptoms to keep from having to admit they don't have the knowledge or compassion or willingness to treat the disease.

I have a question about IV iron I will on on a new topic so please look for that.

-Paul (aka Dr.Placebo)

[jul2873]

Hi Dr. Placebo,

I really don't think you can augment on kratom. I've been taking it for so long. A few years ago I had to stop taking it for a week because I needed a colonoscopy. The anesthesiologist called me up a week before and said I needed to stop the kratom because she didn't know how it would react with the drugs she would need to give me during the surgery. "You can lie to anyone," she told me, "but never lie to your anesthesiologist."

So I took a little ropinirole (.25 pill at night) and that was really all. My RLS got bad, but I didn't have any of the augment type symptoms. It was still just in my legs, same schedule, etc. I figured they would give me some kind of opioid pain reliever, so I wasn't worried about after the surgery, but they didn't, and my legs really went nuts. Not only that, my BP went so high they wouldn't let me go home until it came down. I went back on the kratom, tapered off the ropinirole, and things went back to what they were before I went off kratom. That doesn't sound like augmentation to me.

Oh, here's a tip. When I want the kratom to last a little longer at night, I take a tsp. in a cup of orange juice, and then I take a few capsules with it. The capsules take longer to kick in, so it usually gives me another hour or two before the RLS comes back. I don't buy the capsules--I'm nervous about what is put in them--I make them up with a little gadget I got on Amazon. And I'm very careful where I buy kratom. I buy from a guy who runs a little plant store. He was paralyzed years ago, and finally found kratom. He says he buys from some people in Asia who are careful and check it. Then he checks it again. He doesn't sell too much of it, but if you would like to buy from him, I'll ask if I can send you his contract info.

I think you described my primary care doc pretty well. I was a high school English teacher for almost 40 years, but I think I didn't become a really good teacher until I started really listening to my students, and respecting them. My doctor didn't listen to me, and I don't think she respected me either. I have a couple of other doctors I really like (my allergy doc and my theumatologist) and I plan to ask them to recommend a good primary care.

Take care. We lived in the Boston area for thirty years, but I don't really have a good primary care doctor to recommend to you. Sorry!

Mary

[Dr.Placebo]

Mary,

Thank you for your tip about the capsules. It's true that a bedtime dose won't last through the night. I have a capsule filling gadget too so need to fish that out and make some capsules. If you have the contact info for your trusted supplier please PM me with that. Does he/she ship?

Paul

[jul2873]

Hi Paul,

I got permission from the owner (John Williams) to post the info about his business. The name of it is Velvet Soul and the email address is support@velvetsoulnaturals.com. I don't know how the pricing compares to other sellers, because once I found them I didn't use anyone else. The kratom is always fresh, and I trust him. I asked him to tell me a little about how he got his kratom, and this is what he told me:

"We have the Kratom we source 3rd party lab tested and can provide you with a certificate of authenticity if you’d like. This is done to test for any possible contaminants and the levels of active alkaloids in the Kratom. This process is already done by the farmers we source from so we are just doing a double check before it is packaged and vac sealed. As a business we cannot provide any medical advice or claims. The FDA has made statements and outright refused to recognize any of the numerous medical studies available. In a way it has somewhat turned into a modern day reefer madness campaign but there are also people that have brought negative attention to Kratom using it for all the wrong reasons. There is a trove of misinformation and slanderous articles written about Kratom as well as a trove of medical studies to disprove them. The FDA does not like Kratom but has failed to actively ban it because of the push back they received from over 8 million current users. The Botanical Defense and The Kratom Association website have a wonder wealth of information
https://speciosa.org/
On that website there are numerous studies and testimonials. They are the largest legal lobby for Kratom in the United States.
I myself have used Kratom for over 10 years. I have permanent nerve damage from being paralyzed when I was a lot younger. For me in my own personal opinion and my own personal experience it has been a game changer in giving me a quality of life back. Thank you for always being a valued longtime customer. I hope I was able to help and answer your question. Please feel free to reach back out if you have any other questions or concerns. I hope you have a wonderful day."

Yes, they ship but don't use credit cards--I don't think anyone uses credit cards now, do they? At any rate, you can email him to get a list of the kratom they currently have, and the pricing. Then if you tell them what you want, they will bill you on Paypal. I've been doing this for a number of years now, and it works fine. The whole thing is rather silly, since you can have Paypal take the money from your credit card, or right from your checking account. But it comes through listed as something else on Paypal--usually some kind of flower or plant.

I think they are in Buffalo. At any rate, the kratom I get is always fresh and finely ground. I'm too nervous about kratom that isn't pure to buy from someone else.