I am writing this in the middle of the night because I can’t lie still. You can imagine how desperate I am to take a Pramipexole tablet.
The good news is I have just done 10 days without any Pramipexole. Stupidly, I haven’t planned my next move. I spoke to a doctor yesterday (I’m in the UK) and he is going to refer me to a neurologist. He has also agreed to look at my iron levels, in two weeks time.
But how do I get through the next few days. What kind of relief can I ask the doctor for to get me to the next stage? I should have planned this better. I would welcome any suggestions. Thanks, Richard.
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You mentioned you had cannabis oil. Is that not helping? Ask your doctor for a low dose opioid to tide you over. If you can't get that there is kratom which assuming you are in the UK you can get from kraatje.eu/contents/en-us/d... and they are discreet. Also you can get from kratom.co.uk. However I don't know how long that will take.
I buy from Kratom.co.uk and they deliver in 48 hours. So a really good local service. I have just tried their red vein 'Jeruk' and it is excellent. 3 teaspoons a few hours before bed and I have zero RLS for the first time in 20 years.
Three teaspoons? Wow, the most i ever needed was a little over one, and I have pretty severe RLS, augmenting all day and all limbs plus torso. I wonder if their product might be not as effective as it should be? Ive heard some bad vendors mix ground glass to boost weight.
OK that's interesting? My RLS is severe too. I read that for pain relief (or RLS) you need between 4g and 8g (2 to 4 teaspoons). So I thought my use was pretty normal. Where do you get yours from and what strain do you use?
I should mention that i took K with grapefruit juice which boosts K‘s effect and makes it last longer. It reduces the bodys‘ ability to break it down. For me 3g per dose was all i needed. If K‘s effect ran out before the night was over I took a second dose of 2-3g. In maybe one night in a week it wasn‘t enough but I didnt take more then to avoid building tolerance. My supplier was in NL (dekratomshop.nl/)and the best strain for me is red vein borneo.
Smart move to be concerned about tolerance. Over a year or so, I went from 2 grams per day to 32. (8 g per dose x 4 doses per day.) No ill effects at higher dosages, but it finally made me recognize that kratom was not a long-term solution.
I finally was able to secure a low-dose (10 mg per day) methadone prescription 4 years ago, and am sleeping 8 hours per day with no buildup of tolerance.
Best of luck to all of those still looking for a solution.
Wow, that is quite a tolerance buildup - after an initial increase after a few months, I managed to stay at my dosage for 2 years. Was careful about tolerance just out of being generally cautious, didn't know I maybe dodged that much of a bullet. Methadone unfortunately is impossible to get where I live. I'm on fentanyl for over a year now but unsure if it works long term. The 72 hour patch runs out after 48 to 60 hours, but at least without increased dosage.
I'm surprised that you can get fentanyl for RLS but not methadone. I'm in the US - are you in NL? How many patches are you allowed per month? If you haven't increased the fentanyl dosage in over a year, I'd surmise that you're safe for the long run.
Yeah, it's been a surprise to me as well. I'm in Germany, on a private insurance plan which has more options than the standard public insurance which allows no off-label prescriptions. I'm able to get several opioids off-label, but MDs prefer Oxy, probably since Oxy is the only one for which there are German RLS studies. I've heard of more tolerance issues with oxy than with Fentanyl. Also, F was easier to get as a patch which I preferred since I frequently have digestive issues (for which Kratom also was not ideal).
Interestingly, I have the impression no one is really tracking how many patches I use per month, or I don't notice because I'm trying to keep it as low as possible anyway.
In terms of dosage, I wonder how to assess the reduction in patch application time - I _am_ taking more per month since I swap the patch more often. Question is: does my body simply absorb the full patch dosage quicker than expected? Then, my dosage would effectively be higher, since the total amount from the patch would be stretched out over 60 instead of 72 hours. Or does it simply stop absorbing in the patch location after a certain time? Then the "remaining" amount of F would simply go to waste when I switch to the next patch. I feel I'm not explaining this well - do you see what I'm trying to get at? Of course, I have asked several doctors but no one dares to speculate or even think about it. That's quite disappointing if your quality of life depends on it so much.
Methadone here is seen exclusively as a get-off-heroin drug and not prescribed for anything else it seems. Would've loved to try that since it seems the most stable solution long-term. I'm sure you know how lucky you are having it as your solution. I'm glad to hear about everyone who has managed to dig themselves out of this terrible hole RLS can put you in. Maybe some day, methadone will be available here too, so I'm trying to get by until it is.
I also have added Parkinsons to my collection of fun conditions 2 years ago, so that's adding some more complexity and making sure researching solutions doesn't get boring...
You mentioned you wanted to do without medication. As you are finding out that may not be possible. When your symptoms settle if they are still severe enough to bother you, ask for gabapentin or pregabalin. In fact they may help you now although it usually takes 3 weeks for them to be effective and then you would need to increase by 100 mg gabapentin or 25 mg pregabalin every 2 days to find the dose that controls your symptoms.
As ever Sue your advice is invaluable. After 10 days without, I'm struggling to deal with the lack of sleep. Early on I thought the CBD dummies were working, but I suspect it was still the low dose pramipexole that was allowing me to sleep. It can all get very confusing! I'm also annoyed with myself for not planning this better and I fear I may need the help of gabapentin or pregabalin (which one?). One last thing: you mention asking for a low dose opiod. Can you mention some names for me?
Sue, can I once again thank you for keeping me sane. You deserve an award.
Buprenorphine is often used but any of them would work. Either gabapentin or pregabalin. They are basically the same drug except you need to divide the doses with gabapentin but don't need to with pregabalin. I generally recommend one starts with gabapentin because you can increase it in smaller doses. And once you find the dose that works for you then you can switch over to pregabalin if you want to. I believe I gave you information before on how to take it, but if you want I can give it to you again.
You might want to print out the section on opioids on the Mayo Clinic Updated Algorithm on RLS to email or show him at at Https://mayoclinicproceedings.org/a...
Just in case you’re not already doing this, try removing all sources of caffeine- coffee, tea, green tea, soda, etc. Drinking just one cup of coffee or tea caused problems for me without fail. Instead, try drinking at least 2 liters’ of water today to thoroughly hydrate/detox, avoid refined carbs, and finish eating at least 4 hrs before sleep. Taking 200mg SAM-e first thing in the morning helps as well- helps methylation, detox, and NT synthesis. I also recommend you try taking raw cold-pressed cod liver oil with natural retinol and D (Rositas or NutraPro, not fortified Carlson’s, etc). I understand your desire to avoid any medication so I wanted to share some ideas.
I do like the way you are thinking and I am heading in that direction. At a moment of deep depression with every part of me aching, your text was most welcome. Thanks.
One good thing: I haven’t had a cup of coffee in my life!
Other than the potential that caffeine contributes to glutamate imbalance, I believe it causes dehydration that exacerbates organ detox. Try making a conscious effort to drink water up to 4 liters even if you have to make many visits to bathrooms today and see if this helps tonight, though be sure to ingest enough real salt (Redmond or sea salt) and eat potassium-rich foods. Also, take a nice long walk to get your lymph flowing and avoid being sedentary. SAM-e will also help with depression after consistent use and it should be widely available for purchase OTC. I'm glad I helped you to feel a bit of positivity.
You could ask for an urgent appointment and ask for pregabalin. Average dose 150mg. It takes 3 weeks to be fully effective.Do you know what your serum ferritin was at your last blood tests?If below 100, you could start taking ferrous bisglycinate every other night. That can help many with severe RLS.
If the symptoms are unbearable, you could buy OTC solpadeine Max. It contains about 12mg codeine. It may take the edge off.
Kratom also helps but it's illegal in the UK and it can be difficult to get off for some people. It's taken whenever RLS plays up. A teaspoon in hot water and mixed with orange juice settles RLS for a few hours.
I have withdrawn from pamiprexole myself. It’s best to do it very very slowly. Cold turkey is even more hellish than withdrawal should be. There is also the risk of going into DAWS which can be dangerous. Cut your tablets down and go slowly & methodically. CBD oil, Gabapentin & opioids can help. Good luck. I hope it gets better. I know what it’s like. I barely survived, but I’m on the other side now & im glad I did it.
Hi, sorry to hear about your suffering, I know it only too well, last year I came off ropinirole and I still get RLS during the day after all this time.
I'm in the UK, have tried every medication that the neurologist and gp wanted to give me but they honestly have no idea what they're doing and they only made it worse.
After many appointments and perseverance I managed to get my GP to prescribe Oxycodone which is working wonders for me.
To get oxycodone I had to become really knowledgeable about RLS treatments, I took printouts from the RLS UK charity website and then had to engage in an intense 1 hour battle with the gp until they finally caved.
My advice is to read the entire RLS UK website, print the bits you feel are relevant, then browbeat your GP into giving you something useful.
At the bottom of this webpage is a pdf file that details which treatments should be used for RLS, note that Pramiprrxole is supposed to be a lost resort (most GPs and neurobiologists in the UK don't know this), also note that oxycodone is on the list and it can also be prescribed for RLS.
If you think it's right for you and your GP is reluctant then you could always ask for a short trial.
Also, if you're in a bind then we mentioned by others you could try kratom but be aware of its legal status and its downsides too.
Hi I have just read your post and just want to say that you are not alone in these feelings . Unfortunately I cannot advise on medication or what to do next, but think that it’s good to know you are not alone .
I suffered terribly from RLS all my life …. Even as a young child . I’m 56 now and am on a few meds as a result of having cancer twice - at 32 and 50. My condition causes my iron levels to drop drastically and my different meds mess me up terribly too. I did not sleep and could not keep still - not just my legs but my whole body . It was horrendous.
My doctors over the years haven’t offered any solutions until 18 months ago when I had hit rock bottom. I was given pregabalin - 150 mg which I take at around 6 pm . They did say to take 50 mg 3 x a day but I found this didn’t help as much as taking the doses all together ( you can do this) 150 my is a low dose but it has helped me immensely. I have side effects from the pregabalin as it is yet another to add to the meds I already take but the side affects are far more bearable than RLS.
Your gp should be able to advise what is best for you personally. I really hope that you get sorted and obtain some relief. I know that desperate feeling in the middle of the night . I wish you well .
It's tough but just hang in there. Try a cooling mat you can get them off amazon quickly they help loads to calm legs. Try to avoid dairy as that can make things worse. Do whatever you can to calm and relax yourself but avoid hot baths, showers and milky drink,caffeine ect. Lavender oils on your pillow is great camomile tea and honey about an hour before bed some light leg stretched is good also if you have a heavy blanket draped over your legs you may find that helps a little. If you really can't sleep find a distraction playing and app on your phone or computer ect. Do whatever you can find as much resources as you can there are soo many non medical ways to help you coap. I'm doing non medical and it is working I'm just keeping to a Mon dairy no caffeine diet low fats almost vegan portion control and no refined sugar it does help. I also take pregabalin 75mg each evening around 5pm which helps relax me. Pramipexol never helped for rls.I really hope you find this a little helpful. X
Your welcome just be patient and do the research it really pays off. I never got much support from the gp so had no choice but to improvise, I found my own way but when I came on this group I did it at my most desperate moment when I was contemplating ways to end it because the rls was so bad and uncomfortable. I figured it out bit by bit you will to and you can do it with minimal medication just try and keep a diary of when you are getting symptoms what you ate or drank that day and try and see the patterns. I'm not saying this is the way and it will cure your symptoms but it won't hurt to try. Hope with rks is all you have so don't give up you will find a way believe me.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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.
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