I have messaged this forum a few times and received such great advice and support. I really appreciate the willingness of everyone to advise and the compassion shown. Its great! I have finally found a sweet spot for Kratom - taking 3 teaspoons at once at night and I can get 6 to 7 hours sleep.
The problem I have is this. I was on Tramadol prior to Kratom - taking it morning, lunch and night. When I stopped it the withdrawals were hideous - every morning, lunch and night times when I used to take Tramadol I experienced withdrawals. To stop the withdrawals I took Kratom at each of those times. Now I find I experience withdrawals at those times if I dont take Kratom. I would love to get to the place where I just take Kratom at night, but the dilemma is, how do I stop or get passed the withdrawals I feel during the day if I dont take day time Kratom? I get very agitated and it feels like RLS is creeping into my arms and chest if I dont take it. Will these go away eventually if I persist and grit my teeth and ignore them??
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GaryHB
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I suspect you may not be able to be med free. You were on Prami for years, augmented and switched to tramadol. Unfortunately, Tramadol is the only opioid that ALSO causes augmentation so I suspect that is what happened in your case, rather than tolerance.
You may need to consider other meds to cover your RLS as it's unlikely your RLS will have resolved.
As you only stopped tramadol 2 weeks ago, the RLS withdrawals are still going to play up for a while. It takes about 2 months for the D1 receptors to settle after augmentation and withdrawal.
You could continue with kratom ( but remember it's illegal in the UK so if you're in any traffic accident it could be problematic) or you could see your GP and ask for pregabalin or gabapentin or oxycodone. Withdrawal from kratom can sometimes be problematic as it acts in a similar way to opioids. Cannabis might help during the switch to other meds and that is available legally for medical use in the UK.
Also, make sure your blood iron levels are all above recommended levels for RLS.
Thanks for that very helpful advice - I had not been able to get a definitive answer anywhere on how long the opiate withdrawals would last for. I will keep at it for 2 months and see how it all pans out. I tried both pregabalin and gabapentin and they did nothing for my RLS. Only prami and opiates have worked but opiates and Kratom are by far the most effective. I am curious about Buprenorphine - do you know if it causes augmentation or tolerance? I am booked for a blood test for my iron levels next week - so that is coming soon.
Pregabalin and gabapentin don't work while you're still on dopaminergic drugs like Pramipexole. Once off Pramipexole, they can be very effective but it takes 3 to 4 weeks for them to be fully effective. They don't work immediately like opioids. I suspect you may have been given them while on Pramipexole.If your GP is willing to prescribe opioids, Oxycontin or targinact work well for many. The average dose for RLS is 30 mg a day and as the half life of Oxy is quite low, usually Oxy is taken twice a day, 12 hours apart.
Buprenorphine sub lingual pill is taken at night and the average dose is 0.5mg.
Tolerance to opioids (except tramadol which causes augmentation - an increase in severity of RLS) is rare and most RLS patients stay on the same dose for decades. Look at the Massachussetts RLS opioid register.
You are still experiencing Pramipexole and tramadol withdrawal so switching to Oxycontin or Buprenorphine should help almost straight away.
Side effects may include nausea, constipation, sweats,panic attacks etc.
Discuss with your GP to get your gull panel fasting blood test and to find out whether they will consider opioids because, if not, you could arrange a private consultation with a neurologist familiar with RLS.
Thanks again for the reply. I was on Pramipexole for 20 years. Came off that and had terrible DAWS for the next 9 months. I then tried Clonazepam, Pregabalin and Trazadone. None worked on the RLS. After 9 months I went on to Gabapentin for 4 months and could not get it to work. High doses made me really ill. I then went on to Tramadol for 8 months which really worked and stopped the DAWS except for Insomnia and then growing tolerance at which time I realised I would need to come off it and in my first post on here you very kindly suggested Kratom which I had not heard of. I then switched to Kratom and have been on that now for 3 weeks. Do Oxycontin and Buprenorphine cause tolerance or augmentation? I didn't know Tramadol was the only one that caused that? I am encouraged to hear you say most rls patients stay on the same dose for decades? That is so encouraging! Opiates are the best for my rls. When I was on Pramipexole it was never really great - I frequently had agitation and when I had an rls breakout which happened often, they were hideously bad. I have not had 1 bad breakout since moving to Tramadol and Kratom - seriously they are vastly better. Anyway thanks for your time - it is great therapy being able to talk to people who understand. Doctors, bless them, try but they just dont know the reality of this menace we have to live with. Rls can make you seriously demented at times.
You're the same as me. Pregabalin and gabapentin didn't help, nor did tramadol.Oxycontin or Buprenorphine are your next options.
Oxycontin average dose in 30mg and as it only lasts around 5 hours, it's best taken 4 times a day to prevent mini withdrawals through the day.
Buprenorphine average dose is 0.5mg sub lingually and lasts 24 hrs so only needs to be taken at night.
It worked instantly for me but gave me severe, crippling nausea . I took cannabis for a week and the nausea went. Then I developed opioid panic attacks and added 25mg pregabalin which controls them.
Ask for Buprenorphine but I suspect your GP will want you to try Oxycontin first. Most GPs are very anti Buprenorphine and methadone but the Massachussetts Opioid study confirms the dose stays low and doesn't lead to addiction or tolerance with most people on the same dose for decades.
I've been on 0.4mg since July 2021 and haven't changed the dose.
I really hope the GP gives you Buprenorphine. Even for a 2/3 week trial.
That is really helpful info. Thank you. I will make a note of that. So does Pregabalin help with anxiety? I recall when I took it that it did. I have an ongoing low level anxiety - even on Kratom. And I remembered some of my former meds helped with anxiety but I cant remember which one? I really wish I could stop feeling like a wound up spring 24/7. I am always on edge. My Doc says its PTSD. Maybe I should try pregabalin as an add on to whatever I am taking.
Kratom. I take six capsules at night and a small dose of Pramiprexel (.25). The Kratom works quickly and the Pramiprexel works later. I sleep well. In the morning I take four capsules of Kratom. Try tapering down on the Kratom during the daytime. The formula for tapering off Kratom and any opiate is take one third less every three days. You may be experiencing withdrawal from the Tramadol….as it’s an opioid. RLS usually only starts when your in a restful state…before sleep. Also try and mix it up so your not taking one think for to long and become tolerant. I’ve been dealing with RLS for over twenty years. Many…many sleepless nights over the years. Everyone is different. You need to find out what works for you.
Thank you for your reply - I agree. I think mixing the meds up is the way forward for me since my track record is one of augmentation and tolerance every time. I had thought about taking some Pramipexole again with the Kratom so I can sleep, but my worry is I could end up with tolerance to both the Kratom and the Pramipexole at the same time. This happened in the past when I took Pramipexole and Codeine together. I am trying to taper down the Kratom during the day. At the moment I am on 1 teaspoon 3 times in the day then 3 teaspoons before bed. The rls does not kick off at night which is a great thing and I do get to sleep, but I can only sleep to 3am. Then I am wide awake. It is exhausting. How many grams are in each of your capsules? Thanks again for the message.
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I messed up
Reducing pregabalin 
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