I would really appreciate some feedback/advice. It is 6 weeks since I eliminated my last Oxycontin. I am still getting the occasional panic attack but I think I am mostly over the withdrawal period. The purpose of the elimination was to see if I could manage with just kratom for rls urge-to-move as my symptoms have improved quite a lot in recent months - I think as a result of raising my serum ferritin levels. Prior to eliminating oxycontin I was managing well with just one 5mg oxy and about 3mg kratom nightly.
Sadly, I cannot manage with just kratom - I am kept awake with the crawlies for most of the night. They are however nothing like as severe as they used to be so none of the violent jerking right out of bed - just that sort of unpleasant crawley feeling and need to move legs and torso to alleviate it but I am getting very little sleep - it lasts all night and I definitely need another med.
Don't want to go back on Oxycontin as I think it is more than I need and I don't like the speed with which I become physically dependent. I notice that a lot of people here take tramadol or even co-codemol. My GP would probably give me these if I asked for them. Are they less severe than Oxycontin? Would they represent a better option?
I have neupro and it works like a dream for me BUT I am extremely reluctant to use it as my primary treatment because (1) I am afraid of augmenting on it (had a terrible time getting off pramipexole last year) and (2) I want to keep it in reserve in case I am ever in a situation where I have to be in bed for a prolonged period eg for illness or accident.
Gabapentin does nothing for me and I really dislike the side effects.
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involuntarydancer
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Co-codamol can be bought OTC as it has a small amount of codeine, its codeine/paracetamol. Codeine i would have thought was the next strength up to take from your doctor, then Tramadol. I cant tell you which one you should try.
Unfortunately they are all addictive and dependence forming. Tramadol is allegedly less addictive than the others. Physical dependence is a cert with these drugs, (as it is with many drugs) and there will be withdrawal HOWEVER that is not the same as addiction and a tapered withdrawal is common with antidepressants, dopamine agonists and lots of other drugs.
The best period I had was when I was prescribed a mix of co-codamol and Tramadol - I was completely symptom free until my Dr figured I was on too much and decided to cut the codeine - I now am prescribed Oxy, Tramadol and Neupro by the same Dr so go figure!
I was on Klonapin for a long time due to my RLS. It was a lot of many nights without sleep until I got on it. But then, due to a bad Neuropathy I developed, I was taken off it; cold turkey!! Liked to have had a nervous breakdown from not Weening me off. Now I have it occasionally, and take Cymbalta with my Neurotin (Gabapentin), and it works great. I have horrible problems with my legs and feet. Oxycontin is also very addictive, along with Tramadol, if used in large amts. Nothing is worse than being taken off Cold Turkey because a doctor does not believe in prescribing them to patients. Make sure the doctor substitutes one drug for another, if that be the case.
"take Cymbalta with my Neurotin (Gabapentin), and it works great. I have horrible problems with my legs and feet."
Not sure if you are saying you still have problems IF so the Cymbalta may be making your legs worse. Many SSRI's cause problems. Check out the treatment link at rlshelp.org for more infor.
I do understand the difference between dependence and addiction. Am lucky that I'm not prone to addictive behaviour but I do develop physical dependence very quickly on oxycontin- after one or two weeks at most even if only taking 5mgs daily. I would be prepared to accept that provided I was satisfied that nothing less would do the job.
I have tried otc codeine (solpadeine) and it was ineffective at that dose for my rls. Also I don't like taking the paracetemol it comes with.
I notice in the Clinical Management of Rls, opiates are divided into low-potency, medium-potency and high-potency. Oxycontin is in the high-potency group whereas codeine is low-potency and tramadol is medium-potency.
I suppose I was wondering if my symptoms would respond to a low or medium potency opiate rather than going straight back to the high potency one. I'm not sure I understand the difference between the levels of potency. Is a lower potency opiate likely to cause a lower level of dependency? ... or is it just not so strong in its effect? Do the same considerations apply when opiates are used to treat rls as when they are used for pain relief? My GP is not great at engaging in these considerations, preferring to take the line of least resistance. Hence my thread. I wondered about other people's experience of the various opiates.
The potency refers to the strength of the med. So, a lower potent one would probably not work to give relief for RLS.....unless its only mild. My opinion is, ALL meds we become dependant on when we take them on a regular basis to get relief. That to me means. if you stop the so called med your RLS symptoms will come back and probably some withdrawal along with it. Just as someone who has diabetes and is dependant on their insulin would be ill if they forgot to take it. I only have experience of taking Tramadol, and that dose goes up in 50mgs the highest dose through the day is 400mgs. Taking 100mgs 4 times a day. Most RLSers seem to go for the Tramadol as it works well for most. As always there will be exceptions to the rule and some find they make them ill etc. Its like we say, trial and error to find what works best for you. I take one Tramacet that is Tramadol/paracetamol in the afternoon and one Tramadol at night. Its not quite enough to let me sleep all night, so i am now trying out Magnesium chelated 3 times a day to see if it makes any difference, too early to say yet as i have only just started. I am extremely sensitive to ALL the meds and can only take a small dose of anything. Looks like i have typed a essay. lol
Thanks so much for your reply - the longer the better - I really like to get a lot of detail. I totally agree that all meds that successfully treat rls create the sort of dependency you refer to. I am resigned to the fact that I will be dependent in that way on some meds. It's just that I have an opportunity here, having eliminated oxycontin (for now), to look at all my options. I definitely need something but I don't want to use a sledge hammer to crack a nut - I don't want to go on a high-potency opioid if I can get away with a low or medium-potency one. I think I am answering my own questions here! I think I will go to GP and see what he thinks of prescribing something slightly less potent.
Hi involuntrydancer,you say you take 3mg kratom nightly,have you thought of increasing your dose to the 6/9 mg + mark and also what colour strain do you use? I solely use kratom to manage my rls,my dose range varies also depending on how bad im feeling. I use a green for the day 3/4g twice daily and
a red strain for evening/bed time 8/10g works great for me..it does have a duration time of about 5/7hrs but i just redose if its very early in the a.m. and go back to bed. I really cannot rate kratom enough. It is my lifesaver from the this horrible affliction rls. I have never used any prescription meds,i was prescribed one once,it was a parkinson disease medication,when i read the list of side effects i just couldn't do it. Thank heaven for my wonderful kratom,i could not survive without it.Well done for stopping the oxytocin. I hope you find the right balance of meds real soon.
Hi Fairness, it's GREAT to find another kratom user out there and to hear about your experience of dosage. Thank you so much for posting. I would love to know how long you have been using it for rls and also, as you are in UK, how you manage to get hold of it. I am reduced to importing it from Amsterdam - heart in mouth every time I am waiting for an order to arrive.
I usually take red vein borneo in the evening although recently I have been taking red thai as ran out of rvb. I know the thai is supposed to be stronger but I think rvb is actually more effective against rls. I have some green strains but have resisted using them during the day as I find I start liking the effect a bit too much ... However, recently have been managing so little during the day that I might as well be a complete addict so have decided to try some green this morning.
By coincidence, last night I decided to do just what you suggested and increase the dose. I took about 5mg at bedtime and another 5mg at about 1.00 am. Had a much better night and think I will try that for a while. Am also going to go to GP to see about a lower potency opiate. I am planning to go back to work in October so am using the intervening months to experiment to find the optimum treatment for my rls to enable me to manage a working day/life. I find myself a bit 'muggy' the day after if I take a large dose of kratom at night.
The Parkinsons med you were prescribed was probably a dopamine agonist. They can have awful side effects and then there is the dreaded augmentation but I would have to say that nothing has been so effective for my rls than the pramipexole (until I augmented) and (post-augmentation) neupro patches. I plan to make neupro patches part of my treatment but I want to have alternatives so that I can come off neupro intermittently, thus, I hope keeping it as an option for the longest possible time.
I love kratom and totally relate to your enthusiastic endorsement of it but I suspect that, if it was produced in pharmaceutical conditions, there would be a frightening list of side effects required to be appended to its packaging also.
I love you both, but as a long time (2 years) kratom user, I must remind you that kratom is measured in grams, not milligrams! I recognize that these are just typos from you guys, but for the sake of new users, I feel that I must mention it. I credit kratom as having saved my life. But finally having been given a prescription for methadone, (5mg x 2 per day), I cut my kratom usage in half, and no longer suffer from RLS symptoms.
I must admit that over 2 years I developed a tolerance for kratom that turned a 4 gram per day dosage (x1) into an 8 gram (x4) dosage (yes, that's 32 grams per day). By that time I no longer felt that kratom was a viable solution for my RLS symptoms because of the tolerance problem. However, it must be noted that AT NO TIME did kratom give me ANY untoward side effects.
Love you too TheDoDahMan and very pleased that you are finding relief on methadone. You are absolutely correct about the grams v milligrams re kratom and I must be more careful about not making this mistake - all my various other meds are measured in milligrams.
I too have found an increased tolerance to kratom which has caused me to seek alternative treatment. I find that even after long breaks from kratom it is just not as effective as it used to be. However, I remain a big fan of kratom and am very grateful to have discovered it. I have had very few if any side effects from kartom (other than some insomnia). In fact, its soothing mild euphoria has helped me through some difficult times without inducing dependency. Moreover, I have found it much easier to discontinue than opioids, making it a good option for temporary cover when I am taking breaks from other meds.
I would avoid tramadol like the plague… just started Suboxone and it’s working great… So far. Years ago I read tramadol was the number one drug of choice to get high in Egypt… After using it (RLS), for eight years I can tell you it’s an absolute nightmare getting off… 14 months. I would literally do my year over again as an 18 year old combat medic in the rice paddies of Vietnam than do that again. And trust me… Riding on an APC with the Armored Cav was hell. (To be fair, medics in my unit spent three months of their one year tour with a combat unit. A full year in the bush? I might choose tramadol God bless you…
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