So Frustrated!

I was up until 3:30 this morning trying to get my legs to cooperate until I could fall asleep. I’m on way too much Mirapex, 1mg in the am and 1mg at night. The morning dose makes me feel tired, sluggish and dizzy, so I dropped the morning dose down to 0.5mg. This really helps that heavy feeling but my legs are starting to bother me again. I start a new job on July 9th and cannot afford to feel sleepy and tired. But at the same time, I will need to be sleeping at night, not up battling my legs, arms and everything else. Any suggestions?

[Hidden]

You are augmenting on the Mirapex, because of the dosage you are taking, the only way is you will have to come off the Mirapex completely by weaning of it slowly and probably need a pain med like Tramadol which helps with the withdrawals you will get. Put Augmentation and RLS in the search box at the top right hans side of this page and you will see many posts on this subject and what others have had to do.

[Hidden in reply to Hidden]

Thank you so much! Will do!

[nightdancer in reply to Hidden]

Make sure you do it with your doctor, and it has to be a sloooooooow wean, plus you will need another med to take its place. Dopamine Withdrawal Syndrome (DAWS) is a real thing, and is not fun. The experts and prominent RLS doctors usually use pain meds to get you through the withdrawal process. Weaning down, it will get worse before it gets better. So, you do not have much time before you new job. Is your doctor easy to work with? are you in the UK, or the US? Put "Allaying Augmentation" into the search box, and you will find the BEST article by one of the best, well known RLS specialists and researchers. Co written with a couple of other doctors. His word is ?GOLDEN, Dr. Mark Buchfuhrer, and lots of us have been communicating for years. The paper he wrote is one we have been waiting for for 2 years or more, and it came out last year........... It is the single best explanation on how to wean off dopamine meds when augmenting, and what else to take to help the process.

[Hidden in reply to nightdancer]

Thank you so much for your reply! I’ve been shocked to read the posts on here about meds and the knowledge everyone seems to have. Obviously the medical community I live in (upstate SC) is not informed. Not the prescriber or 2 other doctors have even questioned such a ridiculous dose of Mirapex. I am not informed either. I need to educate myself, think about it, and figure out my best option. Thanks again!

[nightdancer in reply to Hidden]

Knowledge is power. I have had RLS since I was about 14, and have been managing support groups on and offline for 28 years. Eventually, it all sinks in.

[Hidden in reply to nightdancer]

I appreciate your help! 🙂

[Hidden in reply to Hidden]

Your doctor's are not the only ones who have no idea on how to treat RLS or know when a patient is having augmentation, or how to treat augmentation. Alot of people only find that out when they join a group or forum like this and have to go and explain it all to their doctor.

[nightdancer in reply to Hidden]

yep, that is the truth. A LOT of doctors just do not know, and refuse to learn. Since it is neurological , sometimes a neurologist knows more. It really depends on the doctor, and how they will approach it. My GP is great, sometimes it takes a few tries to find a good fit. Trial and error with doctors and with meds.

[Hidden in reply to nightdancer]

Everything is such a process! But that’s ok, I’m willing to fight! Thanks!

[nightdancer in reply to Hidden]

It is a lifelong process, for sure.

[Hidden in reply to nightdancer]

I think I’m having augmentation. It sounds like it’s going to be so hard to come off the Mirapex! My GP doesn’t even prescribe narcotics! I believe I need help from a movement specialist. Luckily, we have one here. I don’t believe my GP or Psychiatrist truly understand RLS. Who has 10 days medication free with probable extreme symptoms and no sleep?? Wow!! My legs are acting up already. I try very hard to be positive, but honestly, it feels like some kind of curse! 😳

[LoisTonya in reply to nightdancer]

Hi Nightdancer,

I asked to be referred to a neurologist and he advised upping my Ropinerole and said I could go as high as 4 mg! Of course, I ignored his advice but the GP accepts what a consultant says. I queried is with the pharmacist. She was very cooperative and looked it up. The printed information still says a maximum of 4mg ( that’s probably for Parkinsons) so I’m trying to keep my Ropinerole at 1mg but do get some very bad nights and sometimes succumb to taking an extra .25 which does work for the legs and sleep but makes me very tired the next day.

[Hidden in reply to LoisTonya]

Hi LoisTonya, unfortunately all the written information on the dosage for the dopamine meds are still the same, so of course a doctor a neuro or a pharmacist will see that the highest dose for Ropinerole is 4mgs that is the highest dose . but now because of augmentation the RLS experts are recommending that the dose is kept lower than that and 1mg which you are on is what they recommend. I can only suggest that you email Dr.B on his website rlshelp.org and ask him about the new dosage you can then show his reply to your doctor

[Hidden in reply to Hidden]

I’m afraid that’s what I’m going to have to do once I become educated myself! I guess they don’t take it seriously...unless they have it themselves! Thank you for responding!

[Joolsg in reply to Hidden]

I wish you strength getting off mirapex. Elisse & nightdancer have given you the best advice.

I have been through withdrawal with the help of the wonderful, knowledgeable people on here and it is really hard but possible.

Get your serum ferritin levels up by taking ferrous bisglycinate every other night ( there’s evidence it helps the withdrawal process as well as the RLS).

When you’re down to the last dose of mirapex, you’ll need 10-14 days off work if possible as you’ll have very disturbed days and nights.

Do keep posting during the withdrawal process and people will give you tips on what will help at each stage.

Sending positive energy your way.

[involuntarydancer]

I agree with the advice of all the others. 2mg of mirapexin is a very high dose and and it is very likely that it is exacerbating your rls through augmentation. You really should look to reduce/eliminate it.

Watch out for sudden sleep onset which is a very real issue with high doses of mirapexin. It is obviously particularly dangerous when driving.

You may also have impulse control issues without realizing it. So you uncharacteristically spend a lot of time internet shopping for example. It can be quite hard to recognize this sneaky side effect.

Reducing/eliminating mirapexin is very hard and as Jules has said you will typically get hardly any sleep at all for 10 to 14 days at the end regardless of whether you titrate down slowly or more rapidly. It is just not possible to work at this time and unfortunately you will have to factor that in to your new job.

Definitely get your serum ferritin levels checked and get the actual figure not just that you are normal. Raising iron levels can help a lot.

Research the other treatments as it can be difficult to achieve a good regime after augmentation. A lot of people find that a small dose of a number of different drugs works better than relying on one single drug.

Do not trust your doctors. Not even a consultant. Most doctors know little or nothing about rls still less how to treat it and very, very often they inadvertently give advice that results in additional harm. Unfortunately, we have to be our own experts often.

Consult the Johns Hopkins University hospital section on rls which has some extremely helpful videos from leading experts. Look through the patients questions page of Dr. Buchfuhrer’s site rlshelp.org. There is a good medical textbook ‘clinical management of rls’ by Drs Lee, Henning, Allen and Buchfuhrer.

Consider Kratom if you can’t get access to an opioid. It may be legal in your state. It makes a good alternative to an opioid when coming off mirapexin of your Doctors won’t prescribe an opioid (which sadly is not uncommon).

Good luck!

[Hidden in reply to involuntarydancer]

I really appreciate your advice. I will have to think long and hard about coming off the Mirapex. I cannot imagine myself requesting that much time off of a brand new job! Time will tell! Thanks again! 🤓

[involuntarydancer in reply to Hidden]

Yes, it’s very tricky for you. It might be worth introducing an additional drug at this stage so that at the very least you have something to help you if your symptoms get worse due to augmentation.

The one thing you should not do is increase your mirapexin dose further. unfortunately, if you are augmenting, your rls will simply race to out-do your existing mirapexin dose and eventually (possibly quite soon) emerge looking for yet more dopamine.

Kratom might help there. I edited my last post to suggest it.

I think I was editing my post as you were reading it!

[Hidden in reply to involuntarydancer]

There’s no way I would increase my Mirapex dose! I’m aware that I’m already on too much! I do have some Requip, which didn’t help me. Isn’t that in the same class of drugs as Mirapex? Thanks so much for your time!

[involuntarydancer in reply to Hidden]

Yes, requip is just another dopamine agonist. It would not be rdcemmended to take with mirapexin at all. You need a drug from another family altogether. Either an anti-convulsants such as horizont or lyrica or an opioid. I have to qualify that really you shouldn’t start any other drug until you have eliminated mirapexin as you will undermine its effectiveness.

Maybe you should post a question to Dr Buchfuhrer - he typically answers within 24 hours. I anticipate he will recommend withdrawing from mirapexin with the help of an opioid and starting gabapentin, horizontal or lyrica or an opioid such as tramadol, OxyContin or methadone however.

[Hidden in reply to involuntarydancer]

You’ve been incredibly helpful! Thank you so much for sharing your knowledge. Your kindness is greatly appreciated! 😊

[involuntarydancer in reply to Hidden]

😊 All I know is through the kindness others showed to me.

[Hidden in reply to involuntarydancer]

You’re a gem 💎

[Hidden in reply to involuntarydancer]

I meant to tell you that I didn’t take my sleep meds tonight and I actually got 4 hours of continuous sleep! My sleep meds are Hydroxyzine (an antihistamine) and Trazodone which seemed to start this whole RL issue years ago. I don’t think I’m going to take those anymore. What an oxymoron! I take them for sleep but can’t sleep because I believe they aggravate my RL. Such is life!

[Hidden in reply to Hidden]

Ahhh, anti-histamines are known to make RLS worse, that could be just one of the issues making your RLS worse.

[fastnfurious6766 in reply to involuntarydancer]

I have been on mirapex for about 10 years now. I take 1 mg at nite. I’m in Charlotte so near GratitudeFirst. My dr. Prescribed me up to 3 pills a nite so it is less expensive (I get 3 months supply for the cost of one). Anyway 1 mg. Is still sufficient. I do sometimes have it during the day at work and find that rubbing my toes on the carpet or flexing them out to points for about a min or walking helps during the day.

[Hidden in reply to fastnfurious6766]

I’m afraid that I have extended periods of moving my legs and pointing my toes/feet day and night. I’m so glad it’s working well for you...that’s what counts! When they bumped me up to 1mg twice a day back in May, I thought I had died and gone to heaven...but it didn’t last very long! Wishing you the best neighbor! I’m in Greenville, SC!

[involuntarydancer in reply to fastnfurious6766]

I hope 1mg continues to work well for you for the forseeable future. It is likely that eventually it will stop being sufficient for your symptoms. Unfortunately it is shutting the stable door while watching the horse running down the road for both you and GratitudeFirst but the current upper limit for mirapexin to treat rls recommended by rls experts is 0.25mg daily. I only mention it to give force to my suggestion that you do not succumb to the understandable temptation to further increase your existing dose. The higher the dose the worse the symptoms are as they emerge.

[fastnfurious6766 in reply to involuntarydancer]

My doctor actually told me the symptoms would worsen with medication. I just saw an article about compulsivity and mirapex. Specifically gambling/shopping/repetitive movement like building things etc. I have these symptoms. I go all in in whatever my passion is at the time. (Geocaching/crocheting/painting/playing bingo). Will have to check into this more.

[involuntarydancer in reply to fastnfurious6766]

I developed this when on a high dose of mirapex - I had no idea it was caused by the medication - thought it was an interesting development that I was now (in late middle age) interested in shoes and handbags for the first time. I lost all interest again when I stopped the drug but not after some very expensive purchases. I also purchased a horse (which has cost me an inordinate amount of money since) as a result of mirapex impulsivity.

[fastnfurious6766 in reply to involuntarydancer]

Yesssss. 31 was another obsession and Tupperware and aloette.

[Hidden in reply to fastnfurious6766]

All I’ve been doing repetitively, is cooking, baking and dishes! Nothing harmful there except calories! I don’t shop because I don’t have the money and gambling is a very remote possibility. I tend to go all in myself with what my current passion is and right now, that’s cooking!

[JakeRLS in reply to involuntarydancer]

I have been on a cocktail of Hydrocodone, and Gabapentin, for several months but still fought the symptoms in the early evening and when trying to sleep. In desperation I tried some Kratom. It's the worst tasting stuff I've ever had, but for the past two weeks it's worked wonders. I rarely have any symptoms and only notice a slight grogginess in the morning. I don't know how long this ride lasts, but I'm going to stay on it as long as I can.

[involuntarydancer in reply to JakeRLS]

I've used it on and off for nearly two years and it still works great. I don't take it every night however - maybe two nights out of seven. I used to use it every night - it was my main treatment for rls for a while - but I found it difficult to function very well the following day. And yes, it is the foulest tasting substance! I really don't know why anyone would take it unless they had to. Some strains are worse than others to swallow but none is exactly enjoyable. The relief it affords is so welcome though that it is worth it. Another great bonus is it is easy to discontinue so one can take breaks from it easily enough to avoid habituation and dependency - not like stopping an opioid which turns your world upside down (I hate that my rls has turned me into an expert on such drugs).

[JakeRLS in reply to involuntarydancer]

thanks and what is your Kratom dosage? I mix mine (a powder) with OJ. I don't rely on that alone, and still use the same cocktail. Trying to cut back on some of the hydro though, and successful maybe 50% of the time. Sorry for your sake that you're such an expert, but I'm happy for me that you are

[involuntarydancer in reply to JakeRLS]

I take two teaspoons at a time which is about 3.5g. I take one dose at bedtime. I definitely need a second dose about 4 hours later to get me through the night. Occasionally I need to supplement the two teaspoons with a third teaspoon about an hour after if symptoms are particularly bad. I mix mine with grapefruit juice - I find the bitterness of the juice offsets the bitterness of the kratom.

I have learned so much about my rls and how to treat it by reading the experiences of others. I wouldn't know anything about kratom - would not have heard of it - if it wasn't for this and other forums (fora).

[JakeRLS in reply to involuntarydancer]

thanks. Right now I'm doing about 1/2 teaspoon before bedtime and occasionally supplement that with another 1/2 teaspoon during the night.

[involuntarydancer in reply to JakeRLS]

Wow that’s great that half a teaspoon is working for you. I definitely found that the effects wore off after about four hours and I needed another dose to get me through the night.

[Daffo55]

I just spent a week getting off of ropinerole. Last night, I actually got to go to a movie without standing up moving around and have slept through the night the last 2 nights. For the past 25 years, doctors just increased my ropinerole. Not one mentioned augmentation- read up on that myself. I was up all night and falling asleep in the car or at work. Forget a social life..

Please talk to dr about getting off of mirapex and avoid ropinerole. I had to travel out of my state to Johns Hopkins to get help. It is an awful disease. Most people think you just have a tingle in your legs, including the doctors.

[Hidden in reply to Daffo55]

I agree with you, they’re just not very concerned about becoming educated. I’m glad you were finally able to get off Requip. Yes, it’s more than a tingle! So much more...

[Beckonwood]

I fully understand your frustration. I was on Mirapex for a number of years and as my RLS symptoms progressed I began taking more Mirapex to find that I was experiencing symptoms in the late morning. I finally stopped cold turkey from taking the Mirapex and believe me it was a nightmare, but was taking Percocet which really helped. Now I keep a journal and take two Percocet at night. I cut the pills in half and start around 6:00 pm and take a half every hour which takes me to 11:00 PM then I take a half of Trazadone. I find the Percocet really does help. Granted I get the symptoms during the day off and on but just keep busy. There are times I would love to take a afternoon nap but can't because of the RLS but for the most part I am getting a fairly good nights sleep. So hoping you can find some relief. I believe RLS is a horrible disease and hope that eventually they medical field can find a cure or something that will help us all. My father had RLS really bad, your could see his legs jumping up and down frequently. I have a grandson with beginning symptoms of RLS , he is 34 and I have a 10 year old grandson with beginning symptoms. We both move a lot. Praying you can find some relief

[Hidden in reply to Beckonwood]

Thank you for sharing your experience! I don’t know of anyone in my family that suffered with RLS...naturally, it would be me!! 😂

[involuntarydancer in reply to Beckonwood]

Beckonwood, you should encourage your grandsons to have their serum ferritin checked as low iron levels have been implicated in the onset and/or worsening of symptoms. I get my children to check theirs fairly regularly.

[Beckonwood]

It can be inherited. Hopefully you will get some relief.