I've struggled with RLS for years. I was on a different med first (can't remember the name), but then was switched to Mirapex, which I've been on now for I'm guessing about 13 years. I started out taking .25 only as needed at night, which then went up to every night. It was upped to .5mg every night and that seemed to work for years. Over the past 3 years, the Mirapex was upped to .5mg 2xs per day cause I was getting symptoms in the afternoon and later upped cause I was getting it in late mor ing, early afternoon, so I was upped to .5mg 3xs per day. Now, It's 9am here and my legs are going nuts!! I've taken up to 4 of them a day (2mg total), but always take 3 a day now and am on Gabapentin twice a day also (for idiopathic neuropathy)and still struggle with insomnia, tiredness no matter how much sleep I get, binge eating, weight gain (40lbs in about 3-4 months) and the meds don't always work and/or take longer to take effect if they do.
I just heard and began to research augmentation a few days ago. I see a new Neurologist next week and was wondering if what I'm dealing with could be augmentation and should bring up to the new doctor.
Any advice or tips would be greatly appreciated. Thank You!!
Written by
thumperina50
To view profiles and participate in discussions please or .
Almost certainly augmentation. Absolutely criminal the way your rls has been managed.You've done research, so should have come across a paper by Buchfurer et al on "managing augmentation" if you haven't, just Google it .
Good luck with your new neurologist, but don't be holding your breath. 🥴🤔
Yep, as Madlegs confirms, you are suffering augmentation.
The reason for this is that you're taking twice the official maximum dose of 0.75mg pramipexole and if you take a 4th tablet even moreso.
If you are being caused suffering because of this, then the doctor that prescribed it is responsible. You may wish to inform them of this, to prevent them making the same mistake again.
4 things that can be done to treat augmentation are -
1) Get blood tests for iron deficiency, particularly ferritin and start iron therapy as appropriate
2) check if anything you are eating/drinking or any medication you are taking is making your RLS worse.
3) Slowly withdraw from the pramipexole over several months and if necessary stop taking it altogether.
4) Replace the pramipexole with an alternative medication, however that should not be yet another doapmine agonist, (which is what pramipexole is). So, NO to ropinirole or rotigotine.
The alternatives are pregabalin/gabapentin or an opioid.
I would read these links thoroughly and be prepared to refer the new neurologist to them. Print them out and take them if necessary. I'm keeping my fingers crossed, but be prepared to find the neurologist hasn't a clue what you're talking about. I hope that's not the case.
Thank you so much for all of the advice! 🥰 I saw the Neurologist a few days ago and yes, I do have augmentation, but was upset that he switched me over to another dopamine agonist Neupro 🤬 To me, that's just a band aid for another few weeks or months. I had my Iron, Feritin, etc. tested a few weeks back and all were within the "normal" range. I'm also already on liquid Gabapentin 2xs a day for Idiopathic Neuropathy and Trigeminal Neuralgia. He said an iron infusion would be a next step.
I was so over it, that I decided to just quit the Mirapex Cold Turkey...NOT ADVISABLE!! I was at 40+ hours with no sleep, when I started constantly falling and doing all kinds of weird stuff within a 2 1/2 hour period. I wasn't asleep, but wasn't awake either - it was kinda like I was almost in and out of consciousness. I know it was stupid, but I'm at my wits end and so tired and frustrated with these meds.
I do take other meds that say they can affect the RLS meds, one being my anti depressant. I've done alot of research and see that dopamine could play a part in many of the things I struggle with.
The other factor is I'm also dealing with ALOT of unresolved trauma and repressed memories, which could too play a part in all of this.
I'm just at a point of not knowing where to turn anymore. I truly believe most of what I've been diagnosed with is actually inter related, but just don't know where or who to seek answers from anymore - I'm just exhausted 😔
Firstly as regards your neurologist., just to reassure you, 0.75mg IS the maximum recommended dose of pramipexole for RLS. This is well documented. At least they seemed to know about augmentation even if they didn't seem to know how to treat it.
Just my personal opinion but this neurologist has apparently caused you more harm than good.
Once you've recovered from pramipexole withdrawal, if you're already taking gabapentin (what dose?) then you may not need to use the neupro.
It sounds as if you need to see a good doctor who's prepared to spend some time looking at all your medications.
It may be that some of your meds can be switched to an alternative, e.g. wellbutrin is an antidepressant that's supposed to be safe for somebody with RLS.
I'm fairly sure that our experience of RLS can be affected by our mental health. Have you sought any help with dealing with your traumas? Antidpressants aren't a very effective solution.
I am sorry, I missed what may be an important point.
Something you may need to consider if you're "binge eating" is whether this is simply a matter of increased appetite or if the eating is compulsive, i.e. you find it hard to resist, you get cravings.
If the latter then along with augmentation you may also be suffering a second complication due to the pramipexole, that is, Impulse Control Disorder, (ICD).
The good news about this is, that as you reduce the pramipexole, the ICD may lessen. I'm afraid it alo means you may find it more difficult to withdraw from pramipexole because of the risk of DAWS, so please be careful.
If it is true that misery loves company, I'm your guy. I have been on 2mg pramipexole, 1200mg gabapentin, gained 60 pounds in 7years, have a CPAP unit which I always use and still have horrible evenings and even days. Generally my feet drive me crazy.
Now the good news! Something is different the past 2 days. Is this a short term break- who cares right! Sharing the plight of others on this web sight has provided a better mental outlook. Tips from Menurva and others have provided a plan. I hope you can gain some relief.
1. I have found that compression socks help on bad evenings. I use a device called a Sock Slider to get them on my feet. Because I went from184# to 240# at 5'8" tall, I use my wife to get them off. I am 75 years old.
2. This morning my feet, ankles and shins feel normal. I used to get 3-4 hours sleep and eat everything all night long. I should write a cookbook on tossing together items from the pantry. I am getting 5-7 hours of sleep.
I used to take 0.5mg pramipexole (P) at 8am and 5pm and 1mg at 8pm (2mg P total) plus 600mg gabapentin (G) at 5 and 600mg at 8pm (1200mg total). I have been reducing P for 5 weeks at a rate of 1/4 pill (0.125mg) per 2 weeks. Therefore, I am down 0.25mg (1.5mg remaining) and into another 0.125 reduction. I rotate the reductions between 8am, 5pm and 8pm. It will take 32 weeks to reach 0. I have had a few bad times. At Menurva's suggestion, I now take 300mg G at 5pm and 900mg G at 8pm. I stopped taking 5mg melatonin and my ritualistic cocktail at 5pm. My PCP added a mild muscle relaxer (sleeping pill) 50mg trazodone which I take at 8pm.
In addition, I have added an iron supplement at 8am for about a week. It is an over-the -counter 325mg iron sulfate (65mg iron) and 250mg chewable vitamin C plus an orange. I don't think I was ever tested for iron or ferritin. I am sure about the past 8 years of blood tests. If I had the test in 2012 or 2014, the results may not be interpreted correctly. For example, the US standard is 50 ng/ml of blood while the UK limit is 75 and less than 200 has been suggested on this site for our problems. One reference states that the normal range is 12-300 for males and 12 to 150 for females.
Others can correct me if I over simplify or am wrong, but a lack of dopamine has been linked to RLS. Pramipexole is a dopamine agonist. An agonist mimics the natural brain metabolite. However, your body stops making dopamine because of the saturation produced by P. Why take the pill if there is another way to make natural dopamine? Iron is needed (CoEnzyme) to activate the enzyme tyrosine hydroxylase to make natural dopamine. I hope low iron caused my RLS so I can stop taking P and eliminate my compulsive behaviors and other side effects (insomnia, etc.).
This site gave me hope for weight control. The problem wasn't all my lack of will power. The past few nights my appetite seems to be under control. At 3500KCal/pound and 210,000/60 pounds, and a reduction of 1,000 KCal/day, it takes 210 days or 7 months to lose 60 pounds. It will take a life-style change to lose the weight and keep it off so 7 months isn't so bad. My legs feel alive enough to get on my exercise bike. Not hurting is a weird sensation. We'll have to wait and see what happens, but maybe this note will help some of us.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Could I have RLS?
Augmentation and Pramipexole
Augmentation & No sleep
Augmentation? I'm guessing yes.
Augmenting on everything
