I have put off posting this because I've struggled so long and I never seem to get anywhere. Because of RLS I have insomnia . I go for days without sleep. I wonder the house at night in a semi conscience state. I often fall, eat at night, I've even taken extra medicine . I My RLS has worsened , it's in my upper body and arms. I know I am in augmentation . I take 3mg of ropinirole 3 x a day , 400 mg of gabapentin2 x a day , and 2mg of clonazepam 1 x a day. I have reduced the ropinirole to 3 mg 2x a day. half the gabapentin every other day, and 1/2 of1 clonazepam pill a day. I have done this very slowly without any assistance from my doctor although he is aware of what I'm doing. I am stuck with the dose of ropinirole, my doctor will not give me an opiate. Sys I'll be uncomfortable for awhile.Legs are getting worse.
I have had 3 sleep studies done. I want the RlS addressed and think the insomnia will then be over. Sleep specialist is doing the sleep first. He has prescribed mirtazapine which made my legs worse, then it was quetiapine which gave me brain zaps and made legs worse. When I told him I would not take this anti psychotic drug he suggested I find another doctor. So here am I with only my primary care dr.
This quest started in January and I am getting progressively worse . I have Afib and it is starting to play up. I attribute this to stress and lack of sleep.
I am to emotional about this and not thinking clearly. I am also scared wondering how much more I can handle .
Any suggestion will be appreciated. Pam
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sweetiepye
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I am appalled! Multiple ‘heavy’ medicines and your sleep specialist only want to add more.
As you well suspect or know you have augmented. No wonder with the 9 mg of ropinirole, which is more than twice the official maximum, although the US RLS-experts would like that maximum to be only 1 mg. Therefore, your first focus - and the hardest - should be to reduce the ropinirole further and get it to nill. Te gabapentin may help with the RLS but not until you have completely stopped the ropinirole and withdrawal has eased.
Have you given your PCP the paper on opioids for RLS? And the paper on forts-line treatment that also discusses how to deal with augmentation? If not, do so, it may help to convince him that opioids at this stage are warranted, if only temporary. If you can’t find the papers, let me know and I’ll add the links.
Keep posting, you’ll meed the support. You’ve already come a long way, but have a long way before you too. Stay strong and determined.
PS. I think you are in the US. Go to rls.org to find a knowledgeable doctor near you. If there isn’t, contact Dr Buchfuhrer and ask him to write guidelines for you PCP.
Sweetiepye, my RLS sometimes drives me crazy in the evenings but it is trivial compared to what you go through. You are on way too many medications especially considering that they aren’t even helping your condition.
Someone suggested opioids for you. I don’t know where you live but I am in Missouri and opioids have been banned for most everyone here.
I don’t want to oversimplify anything but want to make one comment - try drinking Gatorade, it balances your electrolytes. It often times helps me a lot with RLS and if you are like most of us, you would try anything to get relief.
Also, be sure you never eat anything that has MSG in it. That is a huge trigger for RLS.
I agree with everything Lotte has said. She is an exceptionally knowledgeable and thoughtful poster. Your meds are almost certainly contributing to your current problems which is both incredibly frustrating and yet leaves some scope for optimism because it is likely that, if you get the medications under control, things will improve.
You have done incredibly well to reduce the meds as much as you have done already without any medical support. I fear that you will have no option, given how bad things currently are, but to continue to reduce the ropinerole and ultimately eliminate it which will be very hard. In your shoes, I would focus on the ropinerole and not reduce the gabapentin dose further at the moment.
I withdrew from a dopamine agonist without the assistance of an opioid. It is very hard but possible. The following helped a little:
20 minutes of yoga type stretches;
20 minutes of video games;
A cup of coffee (it works on the adenosine receptors which are implicated in rls);
Support stockings;
Magnesium rub;
cold showers;
Lining up mindless chores to get done through the night.
It is important to get your serum ferritin checked and get the actual figure - not just that you are normal. If it is less than 100 start a supplement.
If you are in the US you might be able to source Kratom which works in a similar manner to opioids. Unfortunately it is illegal in many European countries though can be ordered from Holland. It would be important to check about interactions with your other drugs but I have seen posts that Kratom helps with dopamine agonist withdrawals which very few substances other than opioids do.
Please be aware that a better life is possible. It will be a difficult process getting there but you will do it. You have been badly let down by the medical profession but you are clearly strong and resilient and you are already on the right track. Wishing you all the very best.
I agree with above post 100 percent but would like to add take magnesium citrate but be careful about taking too much as you will get diahreah. That’s how you know when enough is enough. I have also found an iron panel lab work which showed I was very anemic and correcting that helped. Gentle stretching and exercise. Hot bath at bed time. Weighted warm blanket such as electric blanket or anything heavy. I take .5 ropinerole or .05. I also take 600 gabapentin and iron. Any chance you are anemic the iron will help
Do NOT use magnesium citrate as it is for the most part used as either bowel prep for a colonoscopy or to help you more easily poop due to the fact it does work on your gastrointestinal tract and can cause diarrhea and what amount doesn’t cause diarrhea is not well absorbed nor utilized by your body. Magnesium glycinate is the most absorbable type of magnesium plus helps with sleep and anxiety. Take only the recommended dose (if in the use Mayo Clinic site, Drugs.com, etc.) as you can overdose on magnesium. Don’t believe me google it. Type in what is the best magnesium supplement type. There are other forms of magnesium as well.
The magnesium citrate reacts in the GI tract and is for lack of better words is pooped out. It will definitely help constipation but the magnesium glycinate is better absorbed and be of more help. Just something to think about. 🤓. As if having restless legs doesn’t give you plenty 🙄. I’m not sure where you’re at but magnesium glycinate isn’t as easy to find in stores but can be found on Amazon and I’m sure some of the online pharmacies.
. I’ve tried many different meds for RLS and the only one that has worked is Tramadol. I discovered this by accident when it was prescribed for something else. I only need to take 1 - 50mg dose early evening to get relief. Compared to the cocktail you’ve been prescribed I’d say this is minimal in comparison- I understand why docs are cautious about prescribing opioids but from my experience they should be equally cautious prescribing benzos and other psychoactive drugs which they definitely are not- took me 6 months to taper off of a nasty antidepressant I was on and my doc thought nothing of that- made me feel like I was an anomaly which I wasn’t- same with benzos- I could get those all day long if I wanted to. Maybe I am dependent on my 1 dose of tramadol but what’s the differences?
There’s dependence, which you can be dependent on a blood pressure medication, and addiction. Doctors need to learn the difference. My PCP told me I was addicted to methadone. I said dependent yes. Addicted no. I asked her what the difference was between being dependent on methadone for my restless legs and my blood pressure medication for my blood pressure and she said she didn’t know. There you have it. I’m now horribly augmenting on way too much Requip (ropinerole). Not to mention when I went to the emergency room the only thing offered was some sleeping pills and one of them is very dangerous and even my PCP was smart enough to tell me to stay away from. That’s my 2 cents worth on doctors and medication. Ever looked up a drug only to see in has over 500 drug interactions?
involuntarydancer have said most - damn fine help and info it is too - I'd just like to add, cannabis if you can safely source it can be helpful too. Also want to add weight to the Kratom suggestion - again if it can be safely sourced.
Another victim of the opiate crisis - someone who desperately needs them can't access them due to other Drs misprescribing of them.
For what its worth, I've been in your situation before and am in a much better place now, (sounds like I'm dead ). Take care.
PS - Can you be seen by a pain specialist? They may have better authority for prescribing opiates that work not only on RLS but the intense pain caused by RLS.
I am planning on asking for a referral to a pain specialist if my primary care doc. decides he can't help me. He's supposed to be thinking about giving me opioids but his office has a general policy of not prescribing them. Marijuana is legal where I live so that's another option and I know nothing about kratom. If anyone does and wants to share their knowledge that would be great . I noticed tonight that I have posted about this before. I have no memory of doing so.That's how bad my situation is and I know it's getting worse. The lack of sleep is torture. I feel all of you who responded have given me excellent information and I will soldier on. Thank you. Pam
I would definitely try cannabis - start with a low dose and work up - if you OD it can be very frightening, (or very fun!!) but not really harmful. I would also advise smoking/vaping it initially as eating can make it very strong and last a lot longer, it is always (imho) best to start with smoking, get comfortable with the effects and then try eating. As I have found it has also been showing in a study that for people with RLS smoking worked better - you can take a small amount, wait a few minutes and take more if needed it works that quick;eating you wait an hour or two and if you have taken too much you may have 6-8 hours give or take to last out, if you smoke too much you have an hour or two.
How the hell can a practice have a 'general policy' of not prescribing a drug? Do they get together and someone ever say - "These diabetics, I think we should hold off prescribing the insulin to see if their islets of Langerhan start working again"? I don't think so, so why put people with pain and other issues in the same boat because they haven't bothered their @sses enough to learn how to identify drug seeking as opposed to drug needing behaviours.
Oh I see Jrskyhook32 has suggested Dr Buchfuhrer, great idea. Many have gotten help and if you email him he will consult with you FREE OF CHARGE (really Drs - this man has set the bar and I don't think many are achieving this!). Email address is on LEFT side of page - make sure you don't use abbreviations and use good English - apparently he is a stickler for this and wont reply if you hit him with, don't put ADR when you had an Adverse drug reaction,
And don't worry about the memory it is a common side-effect of the sleep deprived and will resolve when your RLS and then your insomnia is dealt with.
Memeory loss is very much due to sleep deprivation and depression. I saw a neurologist because mine got so bad and it improved with the right antidepressant. My mom had lewey bodies disease which is a type of dementia and her brother and sister did so I was scared I was developing it as it is genetic I was tested and only ah e one copy of gene so I will be ok
I totally agree with you on Dr. Buchfurher and Dr. Winkleman of Massachusetts General who is running a long term opioid study is so awesome too! I made no bones about telling my failure of a neurologist that I thought these doctors were heroes. She had already decided at that point not to prescribe the promised methadone I had been on because my so called “mental disorders”, which as I’ve stated on here before came about from my old sleep clinic by a doctor I never saw who told my doctor it said all through my chart that it was discussed my RLS was the result of a somatic disorder (all in my head), which I have every single record from the day I started treatment there and it’s a lie.
That’s true a pain doc could help. I don’t regularly take opioids but I do have a loratab script for my chronic pain and pain doc is only one who will prescribe. I used to work at a pain clinic in Louisiana. And here in Texas and in Louisiana some pain docs don’t write long term scripts and only do procedures. So ask before you see doc. And if you can safely get marijuana that is very low thc it will help too. I grew some a few years ago. Illegal yes but I only grew a couple of plants.
It’s impressive, especially for a doctor that regularly sees patients, participates in research, writes papers and writes books. If I asked a question of my old neurologist, she would tell me it was inappropriate for the patient portal and that the next time I saw her in person she was going to make me sign a behavioral contract. Now I ask you when a patient is going through augmentation and they can’t sleep or settle down and the next appointment isn’t for another three months, what are they supposed to do? Just wait it out as their restless legs get worse and worse because she can’t be bothered 😕? Nice attitude. Then she kept calling my medication to the wrong pharmacy even though I kept pointing out it was wrong. On top of all that, she had zero clue how to treat RLS and thankfully finally saw the light and referred me to the RLS specialist in the clinic. Why couldn’t I have found him instead?!?! My current neurologist is like this. He responds usually the same day even though technically they have three days to respond. He was trained by Dr. Buchfurher so I think I’m in good hands.
That sounds like a brilliant doctor you've got. My neurologist didn't have a clue either. Had never even heard of augmentation and when I was suffering symptoms all day and night simply added more drugs! For the last 3 years! It was only due to this forum that I found out about augmentation and was able to wean myself off pramipexole and now don't have symptoms in the daytime. I also am off the other four drugs that the neurologist had me on for over 10 years. Now I take only two drugs. Pregabalin, and tramadol and (apart from this weekend when I took two anti-nausea tablets so I could function which gave me mild RL symptoms but which stopped me sleeping much!) I don't have any RL symptoms in the daytime and rarely at night. Thank goodness for this forum and for Dr B who gave such helpful advice... that my GP- bless him, is following. No more neurologists for me. It's my GP and me! And the forum of course.
Sweetiepye, the USA has many of the best RLS specialists on the planet. The most well-known as a clinical physician is Doctor Buchfuhrer at Stanford University. There are many others, but he is known for his thoroughness and kindness.
By hook or by crook, get to see him if you possibly can. Others who have done this have gone from darkness to light overnight. He is not afraid of opioids, and you need opioids to get through this.
Phone, get an appointment, borrow the money to get there if you have to, and go.
If the money is just too much, ask if he can refer you to someone closer.
You can write to him on the wonderful Southern California RLS Support Group website at rlshelp.org
Right now, go to the Restless Legs Foundation website and join the organisation. There is a huge amount of information there, and regular seminars by the best of the best. The organistaion supports all the newest research, and all the best doctors. There is also a registry of RLS specialists in the USA.
At the very least you need to find a doctor who is not afraid of opioids. In searching for a new doctor, find out first if they are familiar with severe RLS and the current thinking about dopamine agonists (out) and opioids (in).
So sorry to hear that. It seems that there are several RLS specialists under the Johns Hopkins umbrella, and it is clear from what has been posted here they are not all on the same page.
There is also a Dr. Winkleman at Massachusetts General who is awesome. I emailed him and he called me. Dr. Buchfurher also recommends a doctor at the Mayo Clinic, I believe the one in Rochester, Minnesota. If anyone wants the name I’ll find the email again.
I don't have any advice because all the lovely people that have already posted know so much, but i just wanted to send you a huge virtual hug and say never give up and I really hope things improve quickly with the advice. Take care of you.
I’ve definitely and unfortunately been in your place not once but twice. Fifteen years ago (I suffered well before this with my regular doctor) I went through every medication used for RLS and then some until finally my sleep specialist tried 10 mg of methadone, which worked like a charm. For almost 15 years I took that dose and no higher. I didn’t have any difficulty with it and it was awesome after all I’d been through to get there. Now I'm no longer on the methadone (long story) and due to the opioid crisis no one around here will even consider prescribing opioids and methadone (also an opioid but most often used to break the addiction cycle because it doesn’t cause a high) is even worse so I’m now on 8 mg of Requip (ropinerole) and suffering badly. I did finally find a neurologist who trained under Dr. Buchfurher and is going to get me off this crap and back on methadone. But in the interim I ended up at urgent care once and the emergency room twice because I couldn’t sleep, was hallucinating, had fallen down and worst of all wanted to kill myself. All I got was sleeping pills, being considered a methadone addict and my husband being told he could involuntarily commit me to a mental hospital if I wouldn’t do it. I told them over and over and over I only wanted to kill myself because of the unrelenting restless legs. There’s much more but I won’t bore you with my story but I am here and so are so many of us. Please talk to us. You can click on my name or anyone else here and send private messages if you like as well. This is so uncalled for but keep reaching out for help. I have to say reaching out to Dr. Buchfurher and Dr. Winkleman where one of the best things I did. Just keep reaching out to all of us to. I wish I had stumbled on this and the RLS Foundation so much sooner. Awesome people with awesome information!
With respect, please read the post before replying. sweetiepie is augmenting so using more dopamine agonist drugs in whatever form is not going to help.
I did but throughout the whole post there was no mention of the patch this medication in my experience is the best method of a continuance way of controlling the rls and reduce the medications I’ve noticed that on this forum there is very little mention of the neupro patch for me it’s a miracle and has removed my rls completely
The patch contains the same kind of drug that is causing the problem, it’s just in a slow release form. I’m glad they work for you, but it’s not a sensible solution here I’m afraid.
When I found this forum I was told I had augmented I was on a 5mg patch and 3mg Ropinorole at night I had zero rls but wanted to reduce the doses so I got off the patch with a 4mg Ropinorole ER then down to 2mg then tried none only 3mg Ropinorole at night tried 1200mg gadapentin didn’t work and also lyrica didn’t work after seeing two doctors the same day I came to terms that I wasn’t going to live that way and tried a 2mg neupro patch with my 3mg Ropinorole at night and I’m back to zero rls I guess the best thing of all of this is I dropped the dose 3mg everybody struggling with rls try this patch I’ve had rls for thirty years and self diagnosed my self in Miami I saw so many doctors and no one knew what it was til one day I saw a study comercial on tv I told my primary and bingo he prescribe mirapex and the rest was history after a while it stopped working and went to Ropinorole and then the patch til present
Looking back at your posts it would appear that you were on very high doses of dopamine agonist medication, presumably increased because the previous dose wasn’t working...which is part of augmentation
Yes, I, in desperation after weaning off the pramipexole, tried two more dopamine agonists for two weeks, and a week and augmented on both after that short time. No more DA for me - Ever!
My suggestions most likely won't be of any help until you come out the other side of augmentation but I'll post what's worked for me with the hope it helps you at some point. I take 3 supplements: magnesium citrate every day (powder added to drink), L-theanine every day (powder added to drink) and iron-bisglycinate (pill every other night) and I try to get a much potassium from foods/drinks as possible. Low sodium v8 provides a good amount of you're lacking fit the day. I rub magnesium oil on my legs if it's a bad night.
Please, please, please do not suggest magnesium citrate as this is used to help you poop or as bowel prep before a colonoscopy and if the dose you’re taking does not cause diarrhea it is also not well absorbed. The best form of magnesium to take is glycinate as it is the most absorbable and also helps with sleep and anxiety. Just do not overdose on it as this is very possible and dangerous.
You don't get hooked on drugs you need, you get hooked on drugs you don't need! I was on 90 mg. of morphine plus 37 mg. of oxycodone every day and stopped in ONE day when I couldn't afford it. I was also on Dextro 90 mg. a day and my sleep doctor cut me down to 40 mg. which was a waste of money since it wasn't enough so I stopped. I don't like sleep doctors because they don't know much. They try to push Sleep Apnea.
I have never taken Marijuana until I was absolutely going to end my life due to this insidious disease . I am 57 and I have found that having just a few puffs before bed then straight to bed or marijuana spray or edibles .
Opioids are very good if you can see another doctor perhaps
Oh my goodness my heart is going out to you. Your journey with RLS, insomnia, confusion with memory lapses, taking extra medication out of desperation, etc. we’re my experience also. I was at the end of my tether. I live in Texas. Others have mentioned Dr. Buchfurer. I found Dr. Ondo in Houston. Dr. Ondo along with Dr. Buchfurer and others published the Mayo Clinic article that has been recommended already. Anyway, Dr. Ondo has me on a very low dose of Methadone and it literally changed my life. No exaggeration it was an immediate and complete turnaround for me and my suffering. Please please seek out one of these specialists because general practitioners will not prescribe what you need. You will, however, need a referral from your primary care doctor.
You are making a huge mistake by taking these drugs more than once per day. RLS during the day is very annoying, but RLS at night is very damaging to your body, your brain, and your expected lifespan. By taking the drugs during the day, you expedite the declining efficacy of them thereby damaging your prospects for a good night's sleep.
If I were you, I would immediately stop taking the Gabapentin and Robinirole for the next 2-3 weeks. That should allow you to reset their efficacy levels. Then restart at half of those doses and take them once each day at 20 minutes before bedtime. I know nothing about those other drugs, but I suspect that they also should not be taken so often..
The other thing that you should do is get a prescription for Codeine syrup. Again this should only be taken once per night just before getting into bed. 16 mg of Codeine should be effective at first and over a month or two you may need to increase the dose slowly up to 24 mg to retain efficacy. Once that becomes no longer effective, just stop it and use no Codeine for 2-3 weeks. At that point you can restart at the 16 mg level and it will once again be effective. For some reason, the first day that I use the 16 ml dose, it is not very effective, but on the second and subsequent days, that dose works well. For 300 years, Codeine has been the most effective treatment for RLS.
You should also run in place for 2200 steps just before getting into bed. For me that takes about 11 minutes. When I am awakened during the night, I also do another 2200 steps and am usually able to then sleep for another few hours.
Finally, while this advice may seem very strange, I have found that eating a slice or two of whole wheat bread just before getting into bed is very helpful. I have no explanation for why this works, but is certainly makes difference for me. Whether whole wheat bread has an augmentation risk is unknown to me at this point. When I had a piece one night for dinner, I noticed that my legs were calm for a few hours. Give a try!
NOOOOOO! Never advise anyone to just abruptly stop these sort of meds, especially if they are more than minimum dose. It could be dangerous, slowly, with support is the way as has been advised
I know not to stop the drugs immediately and also to stop them one at a time,. If I get off the ropinirole I think the gabapentin might work at a lower dose..... I mean when I get of the ropinirole.
When you've been to your GP has he witnessed these episodes for himself.Mine tends to only start up in the evenings I've never heard of it in other parts of the body other than the legs & feet
I remember one night I forgot to put my Balneum cream on which I get on prescription (& can be bought over the counter) & it s a cold night & when I found it & went to put some on I found there was none left & tried to sleep with my leg going ballistic & heavy tingling in my feet & ended up having no sleep at all & walked all around my house & put my feet in warm -tepid water to see if it eased it
Youre not taking more than the prescribed amount of your medication are you?
Thankfully I've got the rest of my medication & my cream now so i'll put some on before bedtime
Out of curiosity is there a history of it within the family
No family history. I've been on ropinirole for over 10 yrs. Some of my symptoms are from that and some are from just getting older. I have augmented and my Doctor recognizes that.RLS moves into trunk, legs, back. I've experienced that. No my Doctor hasn't witnessed any of it.
When I was augmenting on pramipexole I went to my GP and had a full blown attack of RL. I think it really opened his eyes to how it causes such disruption and suffering. I was nearly climbing up the walls of his surgery. He took the whole thing a lot more seriously after that! I was a complete mess, couldn't sit, standing didn't relieve, kicking my leg out was getting some response and vigorous massage- anything I could try to stop the agony. It must have looked like a mad woman's dance but I was going through hell and he realised that. Now he's researching things himself and reading what I give him, arranged a referral so I could have an iron infusion etc. etc. I feel really grateful that, if I can't have a neurologist who knows what he's doing, at least I have a GP who's willing ot do anything he can to relieve the suffering. If he can't prescribe something he will refer me to someone who can. Brilliant.
I hope you have some relief soon. There IS light at the end of the tunnel so hang in there. Take the advice of the wise owls on this site and research yourself so that you know what is spoken about on this forum. Knowledge is power! Thinking of you and hoping things get better as soon as possible for you. Don't despair, although I know I nearly did. Hang in there, and if you're in need of support, post here and you will get it in bucket loads! Just beware that some may say things that may not work for you- or be the best advice. Good luck.xx
It's been years since I've hade mild RLS. I am up all night with it. In the morning I take a requip and sometimes go to sleep, about every fourth morning, I have it during the day, but as long as I'm on my feet I'm ok . I cannot drive, work, travel is out.I really don't have quality of life anymore.In the evening I take another requip hoping I will be able to rest and maybe fall asleep. Usually the RLS turns into convulsive movement sometimes goes into body and arms.
If I were your doctor I'd increase the clonazepam and drop everything that makes the rls worse. I'd also give you a free sample of topical pain relief gel to rub all over your limbs before bed. But I'm not a doctor so I just wish you the best and hope you can get better treatment.
I can’t even imagine going thru this for that long! I’m a mess and it hasn’t even been a week! I’m so sorry for you! I’m not a crybaby but that’s all I can do now, it’s so miserable!
Pam. I truly feel for you. I have tried loads of different Dopamine Agonists in past along with the supposed Holy Grail 'Gabapentin'. I wonder whether you are on too much Ropinerole/Pramipexole and think that could be making your symptoms worse.
I take 2.5mg Ropinerole, 2x 60mg DHC MR, 7.5mg Zopiclone and lately, 20mg Amitriptylene. This is about 21:00 with milk and food and then I go to sleep until about 1 or 2 in morning. I then have another hot drink and Co-Codomol.
Because of RLS I suffer from insomnia, hence the Zopiclone. The pain meds and Ropinerole work to a degree but do suffer from gathering cramp in calf muscles, so know on downward trend.
My suggestion to use is to cut down severely on Dopamine Agonists and use Opioids to offset pain in limbs
Hi, late reply as you posted this a while back. I’ve been put on a few things for RLS without effect, including ropinirole. I am now on pramipexole which has worked well for a long time, I do sometimes have nights that are really bad, on them nights I just up the dose. Worse thing about RLS for me is that I find it worse when I’m tired, can’t sleep, more tired, worse symptoms, less sleep awful cycle.
Thank you for the reply. I know that cycle well it is horrible. I finished a series of iron infusions 2 weeks ago and it has made a huge improvement. I actually went on a road trip this week for 3 hours. This is something I haven't been able to do for years unless I wanted to be in RLS trapped in a car. It is a wonderful feeling to go somewhere and enjoy it. I still have some rough times at night but I am so grateful for the improvement I do have. Pam
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). Take care.
Does anyone suffer from rls in their arms as well?
Has anyone experienced this?
Ropinirole
New to this group
