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Restless Legs Syndrome
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When will this end?

I am nearly 80 years old and have had RLS for at least 10 years. I have survived on Pramipexole for this time but have now gone into augmentation. I took my last Pramipexole pill three days ago having gradually reduced the dose and the Doctor started me on 300 mgs of Gabapentin the same day.

I am currently suffering very badly with little or no sleep but struggling on with my life which is fairly active. I don't know when the Gabapentin will kick in or the augmentation abate but I will beat this beast in the end.

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Wow; respect to you bpsuper, for kicking the pramipexole. It truly is torture. It varies a lot but generally the really bad symptoms start to abate about 10 to 14 days after the last tablet is taken. The gabapentin won’t work til some time after that. It is simply not strong enough to help during the acute withdrawal phase. The only thing that will work at that time is an opioid. Most GPs are unaware of this. If your symptoms don’t start to settle down i think it is worth taking an opioid temporarily as lack of sleep seems to continue to exacerbate symptoms.

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All that ID says. If your dr is fussy about prescribing short term low dose opiod. You could try to procure some codeine, depending on where you are from.

I will try to get you a link to a medical advisory, for your situation.

Drink loads, take vit C ,use sleeping pills( shortacting) such as Ambien. Valium can also help, as will Clonidine- but all these for very short periods.

All the best.

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Rather than send you a long article, I've copied the relevant part . You could show this to your doctor and tell him that is from one of the world authorities on rls

"For RLS patients with severe augmentation, based on clinical experience, the dopamine agonist usually should be stopped or significantly reduced. The medication can be tapered down slowly or can be stopped abruptly. In either case, a potent opioid (methadone, oxycodone, and so forth) should be prescribed to cover the marked worsening of RLS symptoms, which will predictably occur with the withdrawal of the dopamine drug. This exacerbation of symptoms typically abates within a few weeks or months of stopping the dopamine agonist, at which time the opioids may be reduced. Anticonvulsant drugs (discussed as follows) may be added to further reduce or eliminate the need for opioids."

Dr Mark Buchfurer.

Good luck.

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Thank you for your advice. I am finding it difficult.

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It isn't easy, especially if you have no family support. If you have, ot is important to explain to them what is going on, and that your actions are not normal.

You will get through it.

Keep strong.👍

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I have my wife's support and am determined to beat it!

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Madlegs has given you excellent information. Dr. Buchfuhrer is a world leader in rls. It is indescribably hard getting off pramipexole and most GPs have no idea. Keep going bpsuper. We are all with you.

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that's the attitude!

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You are one tough dude. I stand in awe of your fortitude. Thank you for writing to us.

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H

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Hi I was on pramipraxol and ended up with augmentation. I am now on a long acting version which is much better and no sign of rls so far. Had to be prescribed by a specialist consultant and gp wasn't too happy to prescribe it as it is really expensive but worth the effort of having to explain to the gp that rls makes your life unbearable. Fingers crossed that it continues to work. Might be worth asking for a referral.

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Is it by chance Horizant? My insurance keeps denying this drug due to its high cost. I dont see too many people posting anything about it. Wonder if it works well.

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Try putting it into the search bar. There definitely are people on here taking it. Billdel took it for a while and was very happy with it though there were some side effects. I believe it is a form of gabapentin/pregabalin so it’s bit the slow release pramipexole that sophiabelle is talking about as that is a dopamine agonist.

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Well done! A great attitude to have but what choice have we got. Give in? No thanks!

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Thanks for all the support and suggestions. Yes we soldier on and hope to find a solution to this horrible affliction.

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Boy I feel for you. I started on Clonazepam in 1997. But that really had to take 'vacation' from. Then to Gabapentin for RLS - 3200 mg which sorta helped. Now taking it for neuropathy. Ropinerole worked great but horrible side affects. Just wonking out without realizing it, slurred speech. But it killed the RLS most of the time. Now wrestling with pramipexole. 2mg has quit working but don't know where else to turn. Dr. cut me in half but now I am up all night. She says my shoulder and arm restlessness is not from RLS. I'm 69 and have suffered and suffered with no end in sight.

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2 mg pramipexole is far too high. 0.5 mg is said to be the maximum by most RLS experts. 2 mg almost guarantees that you will augment, and it sounds like you already have. You're already taking a quite high dose of gabapentin, so increasing that is not really an option. I believe you basically have two options, and I'd recommend both:

1. Get your blood ferritin level checked. For people with RLS, our level needs to be at least 100, and many experts are not saying it may need to be 300 or more. If your ferritin level is very low, you will likely need to get an iron infusion to get it up high enough. Oral iron will likely not do the trick. Here is a link to the latest consensus on iron treatment.

sleep-journal.com/article/S...

2. To reduce or eliminate pramipexole from your regimen, you will need a relatively strong opioid to get through this. The alternative is you will go through 1-2 weeks of hell (very little sleep, constant RLS symptoms) especially if you're going cold turkey down to 0. Here's the current gold-standard report by the experts on appropriate use of opioids:

mayoclinicproceedings.org/a...

Of course, you need to use great caution when considering opioids. But they truly are the only effective way to get through this without going through hell. As this report says (and in my own experience), the best of these opioids is methadone, if you can get it prescribed. That's because it has a much lower risk of addiction (which is why it is so effective in opioid addiction treatment), it is longer acting than, say, oxycodone (so, will get you through the night better), and has milder side effects (less of that logey, dopey feeling). Good luck!

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Craigm, rlsoptimist is correct. It sounds like you are highly augmented on pramipexole and that is the reason your symptoms are so bad. It is very likely they will improve a lot if you discontinue pramipexole (very slowly). It is really difficult - habitually describes as torture to stop - but so worth it in the long term. Everything rlsoptimist says is correct.

Increasing iron often helps a lot.

Btw your GP is right and wrong - the symptoms in your arms etc are almost certainly rls but they are in fact most likely side effects of the pramipexole rather than primary rls.

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Please see my reply to craigm1114 further down in these replies to your posting, regarding getting your iron levels checked, and regarding the appropriate use of an opioid to help you get through this withdrawal (others here have replied to you about this).

How much pramipexole were you taking? You might also consider increasing the gabapentin, although as ID said, it won't help much during the withdrawal process. However, in my experience, when I withdrew from pramipexole, taking gabapentin allowed me to use a lower dose of oxycodone to keep my symptoms at bay (about half as much as when I withdrew a few years back, with no gabapentin). Good luck!

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Great attitude Bpsuper. I am 77 and also very active. I have had Willis-Eikbon Disease (use correct name not RLS) since I have been about 19. I had 'attacks' randomly for many years but as I have gotten older, so has the severity and have been on every med you can imagine for at least 30 years. About 3 years ago I started to augment on everything and my life dramatically took on a new focus, me......I HATED that. No matter what I took, my symptoms became worse and so did my blood work. Every doctor (MD) follows an algorithm by the AMA or the pharmaceutical companies. I told my doctor that drinking a small amount of coffee at 2 to 3 AM often stops my legs. He told me to get off coffee. I put out a message on this site and had numerous answers as to others doing the same and having the same results. I am not sure why my augmentation stopped except I did change a few things in my life. I cut out sugar and gluten and am having a special type of body work once a week. I am back on clonazepam and requip at the lowest dose I have taken for years. My goal is to work with the cause not the medications so I continue to do my own research on the etiology, not the next 'best' drug.

Prior to my augmentation 'turning around' (which I was assured never happens), I would take several hot showers a night, do stretching and exercises all over the house, clean the house and eat ice cream or sweetened cereal. Turns out the last, which is horrible for you is also very common. I would still do that if desperate but do not keep any of that in the house now and no 24 hour stores close by. I do live in the country so often I would take a walk when warm and safe, barefoot with my dogs.

I don't know if any of this helps but I love your attitude....we will win if we keep looking for the cause, NOT the drug...even if we must for now. Auntie Sioux

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Auntiesioux, if coffee helps it may be worth trying dipyridamole. This is usually used as an anti-coagulant but there is a study showing that it can help rls sufferers. It operates on the adenosine system - I understand coffee interfaces also with the adenosine system.

I take 125/150mg dipyridamole daily. It helps with some of the rls symptoms and since starting it (about 10 months ago) I have found I feel a LOT more alert during the day for some reason.

It is obviously not advisable for those already on blood thinners (unless it could be substituted for existing treatment) or for those who bleed too freely and it is recommended not to take aspirin/ibuprofen with it.

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Great information auntiesioux. I have, so far, had a surprising day after a night of broken sleep with exercises in between a total of 5 hours sleep. I also find that opening my bowels whenever possible helps. Today I have had no attacks so far, although I have been very active in the garden. I wait to see what tonight holds for me. I will report tomorrow but the respite is wonderful.

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I was having a really bad time with my rls after knee replacement surgery. The pramexole was not working very well. I did not sleep much at all for about two months. I went back to my neurologist and discussed the situation and he put me on 50mg of Lyrica which I take one hour before bedtime. So I still take 2 of the .25 mg of pramexole around 6 -7 pm and then I take the Lyrica around 9. It has been a miracle. I have been sleeping like a rock for 7-8 hours. There has been no getting in a hot tub or water or running a massaging wand over my legs since I started the Lyrica.

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Good for you. You give me hope as you are so strong at your age

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You are my hero

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Updating on last night. After taking my Gabapentin and having a hot shower, I slept fitfully for two hours. I was then pacing and exercising (stretching and bending) for an hour and remembering auntiesioux's comment, I had a cup of coffee at 1am. Lo and behold I slept until 5.30. May repeat tonight.

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I was on gabapentin for a year (along with Ropinirole) before I realized the gaba wasn't helping and in fact seemed to trigger the RLS. What took me so long? Wish I knew. Anyway, after cutting it out my RLS improved until augmentation connected with Requip kicked in. That was hellish. Off Requip for about a year, and now use a combo of Kratom and Hydrocodone. Seems to reliably still do the trick after 5 months, so I'm going to ride this pony as long as I can.

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When I was taking just gabapentin for RLS I was on 3200 mg per night. I would check out opiods as noted by involuntarydancer.

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