I’ve had RLS for 40 years and have been on almost every medicine out there. I’ve been in Requip for 6 years - 2 mg XL, 2 2mg Requip along with clonopin & methadone. My neurologist of 15 years has given up on me. I saw another one a few weeks ago and she said everything she’d prescribe, I’ve already tried so she turned me away. I have an appointment with a 3rd neurologist Tuesday, Oct 11th. I haven’t slept in months. I don’t know what to do. Depression is really sinking in.
Harmony
Please look up almost any of Sue Johnson's replies to many posts of similar vein to your situation.
Check iron levels, triggers atc.
Good luck.
Are you still on requip? That's my first question.
Yes. I’ve been on it for almost 7 years? I know there is a good chance I am augmenting from that but when my Neurologist tried to reduce it and add in Lyrica, it got worse. He had to increase the Requip again I’m no longer on the Lyrica.
It definitely sounds like augmentation. Most people on this forum have been in that situation.
No point adding any other meds while you're on requip. They can't control the intense RLS. Augmentation means increase in severity of RLS. Your D1 dopamine receptors are severely over excited by Requip and all your symptoms are increased. Adding more requip is 'pouring gasoline on the fire'.
I'm shocked your neurologists haven't advised you to get off requip. No other drugs will alleviate RLS until you get off it.
The only solution is to reduce by 0.25mg every 2 weeks. And yes, the RLS gets worse but you will never get relief until you get off it.
Dr. Earley at Johns Hopkins won't take on any RLS patients unless they agree to withdraw from ALL dopamine agonists.
The methadone will work extremely well when you're off requip. Ask your neurologist to prescribe methadone again when you are down to 0 5mg of requip. It should then help you as you drop the last 2 doses.
Withdrawal is inevitable for most of us and we go through 2 weeks of unbearable RLS with little to no sleep. But if you stick with it, your life will be RLS free as methadone WILL then work. As Dr. Buchfuhrer says, 97% of his patients will have complete relief on methadone or Buprenorphine.
While reducing, when symptoms worsen you can try cannabis or a low dose opioid to settle the increased RLS. It should then settle and you can reduce again.
Also ensure your serum ferritin is above 100, preferably 200.
I'm sorry to be blunt but you will get no relief until you're completely off all dopamine agonists.
You’re not being blunt I appreciate your honesty and the wise counsel you’ve given. I’m in the process of trying to find a new neurologist. I’ve waited 3 months but finally have an appointment tomorrow with a “movement disorder neurologist specialist”. I’m praying this Dr will help.
Have you tried gabapentin? Have you had your ferritin checked?
I have on two different occasions and it made me blow up both times. I put on 5 - 9 lbs each time. My ferritin level is normal. I have that checked regularly.
Normal ferritin is 15. People with RLS need it to be over 100, preferably 200. Ask for actual numbers. But still get off Requip.
my Ferritin is at 116.
I agree about the Requip. However, an individual such as myself can not just decide to get off of it and stop cold turkey; even gradually, without being under a neurologists care.
Totally understand. Cold turkey is dangerous which is why I suggested 0.25mg every 2 weeks.
If your neurologist will monitor you through withdrawal, that's great but most simply give you a withdrawal schedule, prescribe low dose opioids like tramadol or Oxycontin to handle the increase in RLS symptoms and then prescribe the replacement meds when you're nearly through withdrawal
You're lucky that your neurologist did prescribe methadone as not many US neurologists will do so.
I suggest you go back to the one that prescribed methadone, say you want to reduce requip very slowly and ask them to monitor.
I am going to see what this new Dr has to say tomorrow and if he can’t help me achieve getting me off the Requip and have other options or ideas, I will go back to my other neurologist. Thank you for taking the time to write to me. Will update after tomorrows appointment.
Wishing you luck.
Here in the States Doctirs and pharmacists treat you like an addict if you go on opiods
not only does one suffer from rls but also the dissing attitudes of the medical community
Sadly it is the same in most countries. I always email copies of Dr..Winkelman's opioid study. It confirms that low dose opioids are safe and effective, and do not lead to addiction unless there is a previous history of abuse.
We need more controlled trials of opioid drugs so they can be licensed for RLS
Hi, Sleepless. Yes, there is plenty of hope for you, especially since you have found someone to prescribe an opioid. How much methadone are you taking now? It should work all on its own, unless the dose is super low. I know this because I quit ROP and PRAM fairy quickly-I tapered down within one month using methadone.
Are you not sleeping because of the RLS or because of the opioid? Do you know?
Your doctors should absolutely know that you have to quit the Requip and how to do it. If they don't, then you are at the wrong place.
For a short term solution, so you can sleep and feel much less depressed, order online (or pick up at a local smoke shop) some red vein kratom powder today. It works within minutes to cut rls in the middle of the night when you need to SLEEP. I use it every night, as I am trying not to go back on an opioid. It does have opioid-like qualities though, but it is just easier to manage and also so much easier to get it.
So, hopefully you can get some sleep and tackle this head-on! You can do it!!
I’ll look in to it tomorrow. And, thank you for responding.
hi just been reading your post and although not had rls for quite as long as yourself I have recently purchased a ‘therapulse’ device which having used for a week has given good results. I was, like anyone, sceptical of its results but so far has worked
Just a suggestion
Good luck
Could you let us know how many minutes per day you use the Therapulse device? Thanks!
Hi, I am currently reducing requip. After 15 years of use, and having to increase the dose it has now become ineffective. I'm having to reduce my dose extremely slowly.
It's hell.
I've been reducing the dose but 0.25 every two weeks. At first it was total hell, enough to contemplate suicide ina regular basis, not too mention that the doctors and neurologists I've seen here in the UK have been utterly clueless.
Due to this I have taken to using Kratom at night, 3g only and it has honestly saved my life.
However, you MUST be very careful and very aware of the negative effects of kratom. If you become dependent on it and take it for a long time it will cause your RLS to get worse especially when it's time to come off it.
Kratom withdrawal can be horrible and I'm sure that many will advise against it but if you're only sleeping fora few minutes each night or less and you are genuinely scared that you can't take it any longer then it is worth considering.
Plus, if you're in Denver then i guess it's legal there and you don't face a prison sentence like we do in the UK.
Coming off Requip is hell, didi mention that?
SleeplessinDenver, you have some great advice here. Coming off of a DA is pure hell, but you will be so pleased that you did. Just go slow and listen to your body. If you feel that you reduced too much, don’t worry about going back up. I know I just wanted to get off of that devil drug and felt bad if I had to increase. It’s ok to do so. You eventually will make it! Please let us know what your neurologist has to say today.
Thank you. I will let you all know what I find out. If any of you are praying people, I would ask for prayers for a Dr who is knowledgeable, has discernment, and experience with treating people with severe RLS. Thanks, Geri
I am so sorry you are going through this. Like you I have had RLS for over 40 years. I see Dr. Earley and he has tried many medications for me. Oxycodone, methadone, Suboxone and many other medications through the years. I have been on 30mg of morphine for about eight years now. Up until this year I was able to take one morphine around 5 pm and the RLS would not start. This year I have had to take two 30mg of morphine. I take one at 5pm and then another before I go to bed. I am a night owl so sometimes the second dose may not be until 12 at night. This has worked for me now for many years. I was on sinamet for fifteen years before I found Dr. Earley. He has many studies online so maybe you can show the videos to your new doctor. I am able to function normally on the morphine. I hope your new doctor will keep an open mind. Good luck to you.
Thank you for sharing that with me. We can truly sympathize with each other and others on this site. I saw a new neurologist today. He, too, has RLS thought not to the degree we all have it. He is totally against Requip and said he will never take it. Im on 10 mg of Methadone and he is upping that to 20 mgs with 10 @ 4 pm and the other at 8 pm. All the other meds I continue to take for now until I see him in a month. Depending on how I do with the higher dose of methadone, he will either up the dose again till I have some relief or start on decreasing the Requip. It’s a start. At least I know there is a plan in place and will be getting off the Requip over time. Sorry to make this so long but I know several people were wondering how this appointment went. Geri
I'm so glad you found a seemingly good doctor and that you feel so much better-yes, a plan is mentally very helpful. Having gone down the methadone path, I would add my 2 cents, which is to please take the lowest possible dose of it that you can. Keep some in reserve, if possible, in case something goes wrong with the prescription. Good luck and happy sleeping!
That's great that you found a neurologist that has RLS. I wish all of them did - they would be much more sympathetic. Do get your ferritin checked though.
thank you and will have Ferritin level checked right away.
Ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
My Ferritin level is 171
Thank you for all of your helpful information although I'm sorry to hear you have suffered as long as I have.
pregablin works, but be aware, any other meds will ultimately make rls worse. I do still take anti depressant but have had to stay on lowest dose. I take 300 mg, but worked up to that dose.
Good luck,x
What antidepressant are you taking?
I take Duloxetine, 60 mg
Duloxetine makes RLS worse for many people. You might try stopping it for a few days and see how that affects your RLS, but if you have no additional symptoms while taking it then you are among the lucky ones that it doesn't affect. If it does, trazodone does not affect RLS.
Thank you for the information about Duloxetine. I will try and figure out if it is making it worse or not. I've heard about trazodone but don't know much about it's use or side affects. You've been such a great contact for me and others. It helps more than you know. Thank you 😇
Happy to hear you are getting the help you need.
Thank you so very much.
Desperate need for help with RLS
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