Last year I attempted to rid myself of pramipexole due to augmentation. To do this I used kratom. Meanwhile I discovered that kratom worked wonders for my RLS, totally numbed it and made me sleep like a baby. Something I had not been experiencing using pramipexole, or at least not after the augmentation started. So I decided just to continue using kratom to deal with this misery.
4 months passed and even though I more or less stuck to the dosage the affects of kratom became dim and my RLS came back. Another 2 months passed and I tried to deal with the symptoms using heat pads, massage guns, cbd oil etc, while tapering down kratom. When it became unbearable I decided to stop cold turkey. And this I did. And the suffering that followed was just as heavy as when I tried to stop cold turkey using pramipexole. Turns out the worst withdrawal symptom from kratom is RLS, the one that makes most relapse.
During the withdrawal I started taking pramipexole again, just half the dosage I was on when I quit. I have only done this for 2 days, and I intend to - as I get stronger to cut it off as quickly as I can. My dosage is 0.35mg. If I cut 0.01 every day or every other day, do you think my withdrawals are going to be as horrific as when I was on it for 7 years?
So I messed up. I put myself in a vicious cycle. This is especially heartbreaking for me because I have been sober from pharmaceuticals and alcohol since 2000. I really thought I was done with this shit. Hope this stands as a warning to others.
Best
Siggi
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sigurdur
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I am so sorry to hear this. Kratom acts in the same way as opioids, so withdrawal will be hellish and RLS the main symptom.
Slowly reduce Pramipexole by half a 0.088 pill every 2 weeks.
RLS doesn't 'disappear' when we stop dopamine agonists UNLESS the cause of the RLS is low brain iron and you get an iron infusion or other triggers, like anti depressants. Iron infusions dramatically improve 60% of cases.
Most of us will still have RLS after dopamine agonists withdrawal and we will need medication for life.
So get full panel iron, morning, fasting blood tests and raise serum ferritin above 200. That can reduce the severity of withdrawals for some.
You will probably need to start pregabalin or gabapentin now while you're reducing Pramipexole. Then, if you manage to persuade your doctors to give you an iron infusion, and it improves your RLS, reducing VERY slowly from pregabalin can be done without withdrawal side effects.
If the iron doesn't help you can stay on pregabalin.
I suspect you will not be allowed Buprenorphine or opioids because of your past history of drug use.
Thank you Joolsg. Yes exactly this is what I want to do. I have not had my iron levels checked. I really really want to live without medications. Funny enough I discovered that just around the corner from where I live there is a sleep clinic and RLS is listed as one of their speciality.
I agree with Joolsg. Get the full panel iron test. It is the first thing that should have been done when you got RLS. To elaborate on her advice. 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.
If you have only been on pramipexole for only 2 days you can probably quit much faster than normal. Don't try an every other day reduction - that makes it worse.
You previously said gabapentin didn't work, but you may not have taken enough or in the right way.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Thank you Sue. I have never been on Gabapentin. I really want to get rid of everything to see where I am at. I don't even know anymore how severe my RLS is because of the side affects from pramipexole and kratom. I remember this being annoying problem before starting meds but never this debilitating.
Hon, most of us have messed up and continued to mess up with this condition so don’t ever put yourself down. I struggle being a recovering alcoholic /addict for 33 years,still getting that look and those words about do I know what I’m doing . it’s a fight and we have to fight, you’ll do this and you’ll get where you wanna be and since you’ve been doing your best since the year 2000 , keep on trucking.👍🏻
As someone who has gone thru pramipexole augmentation and withdrawal I can completely relate.
However, after intense suffering trying to stop it myself I sought out the help of a specialist who weaned me from it using a combination of Tramadol and gabapentin.
At the time I didn’t know about Kratom but in general I am averse to substances not prescribed by a doctor due to not having confidence in the concentration and purity. Heck, after being on pramipexole I don’t even trust my GP for treating this disease and will only see a sleep specialist.
I used to make an exception for cannabis but honestly .. I think the evidence based approach taken by my sleep specialist is the most effective treatment available.
As for pramipexole ropinirole and other dopamine agonists I think they are evil drugs for RLS and I will never touch them again. I will never forget how horrible I felt on them and especially coming off them.
So, my advice is please seek the help of a pulmonologist / neurologist and especially a sleep specialist ! I was shocked a couple of days ago when my GP was asking me about the symptoms of RLS . So many medical professionals are ignorant of this disease !
Yes exactly how I feel when dealing with the medical world. I am going to try to cut the pramipexole down while following the advise given on rlcure.com/ I have eliminated caffeine from my diet which was a big step because I am a coffee snob. I have also started taking cold showers to reduce inflammation in the body. I feel with cold showers I have tapped into something I didn't know was there, some natural pharmacy included in every one of us.
Please be careful coming off pramipexole. I urge to seek the help of a sleep specialist tapering down. There are a couple of reasons I recommend this… 1. Dopamine agonists like pramipexole are difficult to taper down and often require the use of an opioid to help ease the transition. 2. A sleep specialist will prescribe medication that will help you stop taking DAs safely and effectively.
I have to add since you spoke about the cold showers a dear friend of mine, who suffers bought a one man, inflatable hot tub and fills it with ice and water, and literally gets in it for as long as she can bear which gets longer and longer the more she uses it, but she sits in it first thing in the morning And then again before bed and she’s so happy with her results me personally, I prefer hot but it does make a difference to her .💜
I have only begun testing cold showers but my experience has got me interested in cold plunges. Look up Wim Hof Ice man on youtube and Andrew Huberman. There is some science behind this.
Haha, yes ... Cold showers work. I am German and we love anything natural. Same goes for an orgasm. I used cold showers when I was pregnant in the summer with my kids. Unfortunately both of them have inherited RLS. I am on 200 mg Pergabalin prescribed by a neurologist in a hospital in Sheffield, UK.
Hi, Sorry to hear of your problems, I hope you can find a solution, if you don`t mind me asking, what dose/frequency were you on taking Kratom as I`ve had a largely positive outcome low dose 3/4 grams two or three times a week over several years.
I have an addictive personality so I can't handle any substance like this. I was up to 20gpd. Kratom is an amazing plant and I am sure it can be used responsibly, just not by me.
after a few small doses , I doubt you will have much withdrawal, but you may see an uptick in the RLS. I went off Prami while using Buprenorphine. I went down very slowly, but even with that I still had RLS breakthrough the Buprenorphine, not severe, but had to get up and walk for a few minutes, then it would go away. This lasted for about 4 weeks and slowly faded, and now the . 5 mg. Of Buprenorphine works perfectly and I finally the nausea and vomiting stopped and I don’t feel any effect except the lack of RLS.
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