About 8 years ago I started getting RLS with trouble falling asleep occasionally. Most annoying was RLS on longer multi hour flights. I was starting to travel a lot more and it got to the point when I decided to consult my primary physician (PP) about it. We decided to try Mirapex and it worked like a miracle. I would take it just before the flight and would not have any problems.
Over a couple years RLS started to increase and now affected my sleep so much that my PP suggested to switch to Pramipexole and try a higher dose. I remember when asking her if this is something that I must deal with the rest of my life she pretty much said yes.
I have also struggled with increased anxiety and was easily irritated at the smallest things. My family and children suffered mostly under this as I would always argue about nothing. I started to take Escitalopram about 5 years ago in addition to Pramipexole.
My caffeine consumption was way above average. I loved to drink 3-4 espressos or lattes a day (each consisting of 2 espresso shots). I knew I was somewhat addicted to caffeine.
Winding forward to last year, 7 years after I started taking my first RLS prescription based on dopamine agonist drugs. My RLS now was so bad that I had at least 3-4 days per week with little sleep. To survive the day, I would drink more coffee. I turned into a workaholic, especially now working from home during COVID-19 with a standing desk and a mat that would allow me to relax the RLS to some degree.
5 months ago, I was on 0.125mg Pramipexole and 20mg Escitalopram and God knows how many mgs of caffeine. I had to increase my dose of Pramipexole a couple times a week just to get a little sleep (I would take 0.18mg). I have tried Iron supplements for about 2 years with no effect at all and gave up. I might not have taken enough after reading some of the comments here. Apparently, the Fe levels for an RLS person need to be substantially higher than a “normal” person.
Without knowing anything about augmentation I decided I needed to get off from the medications. I then started researching how to do a controlled weaning off from Pramipexole and found this site. The advice I found varied from months to a month depending on severity and current dose. I decided to do this over a month by reducing all three by half every week and then start drug free in the 5th week.
My detox experience is almost perfectly described by the FB post on detox on this site.
With my final dose on very minimal (quarter pill) I was still Okay, but as soon as I went to 0 the 12-period described in the document hit me like a brick wall. “Horrendous, severe rebound” is almost an understatement.
I informed my supervisor at work that I will likely not be useful at work and needed to take some time off. Luckily, they were understanding. I asked my family to pay attention to my behavior. I have no idea what it means to be suicidal, I have never been, but coming off from Escitalopram AND having nightmarish RLS symptoms could probably cause any mood swings.
Week 1: No sleep and trying to stay sane at night. Walking around in the neighborhood throughout the night with my wonderful support dog. As soon as I got home and rest my legs and my body would go nuts. The only way to cope was to lie on the floor with my legs up and do gymnastics. I am truly thankful for somebody posting this article because this gave me hope. All was according to plan, and it gave me some motivation to continue. I would not be able to sleep until after about three days when I simply collapsed and fell asleep for 2-3 hours – then hell again. These cycles would shorten and lasted 1-2 days and I got a couple more hours of sleep.
Week 2: I was a sleepwalking zombie. There was absolutely no sign of any sleep cycle left in me. Somebody described this as an inner demon. The symptoms were only slightly better. Again, just as described in the document and still on track.
Week 3: I have described this to friends and colleagues and here on this board as a miracle. Starting with week 3 I felt like reborn. I was able to sleep a good 5-6 hours per night. My RLS disappeared to a level of just being a little nuisance. A quick turn and some leg stretching, and it would go away. I would compare it to the exhilarating feeling after you hit your finger with a hammer and the pain goes away. Trust me, if somebody would tell me this story, I would believe half of it. With no coffee and no Escitalopram, I was easily irritated and grumpy most of the time. No surprise that some of my anxiety came back.
Week 4: With slowly getting my sleep cycle back in order I was now able to get 6-7 hours of sleep per night. I felt a lot better during the day and started drinking tea. The amount of caffeine in tea made me feel less irritated I noticed. I tried to drink coffee, but I am now more or less disgusted by the taste and my stomach gets upset if I finish a cup. So, for now I am drinking only tea. I think this whole thing on this forum is just a means to convert everybody into British tea drinking people – LOL.
Week 5 and later: Life is good! My sleep schedule is normal. I noticed that I cannot do the same amount of work anymore during a day. After 2/3rds of what I’ve accomplished with medications I get tired and need to take a nap in the afternoon. This is something I am still trying to balance. I know that I was a workaholic with Pramipexole and I just have to reset my expectations. I know that I still have some RLS but it is not bothering me at the moment. I described this as thresholding here on the board. With the augmentation and severe symptoms, the threshold of RLS being annoying was moved up the scale. Now without any medication, the low amplitude of RLS is way below this threshold (or use the hammer analogy above, the pain levels after you hit your finger with a hammer actually feel good once the major impact pain disappears). It will be likely just a matter of time until the acceptance threshold will come down to normal levels and it will start bothering me. Time will tell.
I wanted to thank everybody here who contributed helping others. Everything I read here is so true, augmentation is true, and I must educate my PP to NOT do this to other patients.
After now 6 weeks without any medications or supplements I am getting a blood test tomorrow to check my “normal” levels and decide if I should try Iron supplement if my RLS should come back stronger. I decided to listen to more ambient music and I am looking into Yoga for my anxiety.
Next, I am going to start putting milk into my tea – who knows.
Cheers all
RLS Ruining my life 
RLS back after a week 
Easing my RLS symptoms
Rls augmentation looking for advice 
