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[Fly007]

Hello all,
My name is Martin, I am an Aircraft Mechanic in Northern Wisconsin. I am currently weening off of an extremely high dosage of Pramipexole (Mirapex) ER, and it has been pure hell. As a kid I remember being teased because even back then my toes were always wiggling and moving around, and I wouldn't even notice. About 15 years ago in my late 20's to early 30's my RLS really started kicking in, which looking back now wasn't long after I started taking Citalopram for anxiety, which may have been the trigger. It wasn't really bothering me much, but it was annoying my wife being in the same bed. I went to the Dr. and he prescribed Mirapex (Pramipexole), and I honestly cannot remember the dose, but I know throughout the years it would stop being as effective, and he would up the dose, it work for a while, then up it again... you all know the cycle. So last year I moved to Wisconsin from Kansas and had to find a new Dr., at my annual physical when we were reviewing my medicines she asked how I was doing on them, I told her I needed to up the Pramipexole again. When she looked at the current dose of 3.75mg she shook her head in disbelief and responded with "That is Parkinsons level doses". So she referred me to a sleep medicine Dr. that I am seeing now. She explained a little about augmentation and how it was affecting me, and it all started to make sense. So we tried a 2-3 week ween down off of the Pramipexole starting with cutting the pills in half for a week, then in half again for another week, then another half for the last week and at the same time started Gabapentin (standard, not Horizant) at a low dose, 200mg at dinner and 100mg at bedtime, this was on June 13th. The first week and a half were pretty rough so I slowed down the weening process, but by the end of June the bottom fell out when I got down to 1/4 dose (.9375mg) so we upped the Gabapentin was upped to 200 at dinner 300 at bedtime, and introduced Xanax to help with sleeping .25mg preferred, .5mg if needed. I tried the .25mg Xanax and it did nothing, so the next night I took .5mg, it knocked me out for sure, but the next day I felt like a zombie until noon. We also checked my Ferritin levels at this time and was at 77ng/ml so I started taking 130mg of Iron, 500mg of Vitamin C, and 400mg of Magnesium at dinner time as well. Things were still bad, even ended up in the ER one night about to lose my mind, but that was a waste of time, they couldn't do anything for me and just treated me like a junky coming down from a high. I ended up reverting back to the 1/2 dose of Pramipexole out of desperation and got a couple days of relief, so next the Dr. prescribed Neupro 1mg patch to help along with the Gabapentin, well that did not go well, it made me hyper as hell and didn't sleep at all for almost 48 hours straight, and my legs were still going nuts. After another week of pure hell I went back to the Pramipexole at 1.9, quit the gabapenton, and had no RLS symptoms. The Dr. still urged me to continue getting off of Pramipexole so we switched to Horizant, first 600mg at dinner, that didnt work, so now at 600mg in the morning and 600mg at dinner and slowed down the weening off of the Pramipexole. Tonight is my second night without the Pramipexole, and of course my legs are going nuts. After switching between myself or my wife taking turns sleeping on the couch, or in our camper in the yard, we finally broke down and bought a second bed to put in the basement.
Essentially the last 2 months have been a pure depressing hell, and at several times I though I was going to lose my mind. I am definitely glad I came across the RLS society, the webinars, articles, and now this forum are helping me greatly. I will gladly take any suggestions for relief that other RLS sufferers have found. I have already cut out all alcohol, have been cutting back on sugars and carbs in the evening, and drinking a lot of water.

Thank you for letting me tell my story and vent a little!
Martin

[Yankiwi]

Hi Martin,

You have been going through hell. I'm not an expert at all but it seems to me you need to be taking opiates.

Experts on this board will be able to advise you but I just wanted to let you know that I really feel for you and your wife.

I'm lucky I found rls.org decades ago when I started augmenting so I was able to dial back my ropinerole before I really got into strife.

Yankiwi.

[Fly007]

Thank you Yankiwi, I really wish I had found RLS society years ago, especially 15-16 years ago when my RLS started. I would be willing to bet with the knowledge on this sight and this forum I could have easily sidelined my symptoms with diet change and over the counter supplements. But when your in your late 20's with a wife, two young kids, another on the way, working 55-60 hours a week to support everyone you don't have time to research it all and think it through. I had the same Dr. from the time I was born until he retired a couple years ago, so I had 100% faith in him, so when he said here take this, and it worked why would I question him, or when we had to up the dosage again...and again...and again.... and here I am on the computer at 2am switching between standing and kneeling on a chair to keep my legs at bay with no sign of sleep again tonight, but who knows maybe I will get lucky and get a few hours before I have to go to work tomorrow.

[Rustsmith]

I have a number of comments/suggestions for you since at one time I was exactly where you are now (I only got to 1mg pramipexole).

1. If you haven't already discovered it, soaking your legs in a VERY hot bath or shower will help turn off the movement needs for a short time. When I was going through augmentation, I would wake up in the middle of the night, soak my legs and then was able to go back to bed.
2. You said that you were taking both iron and magnesium, these should not be taken at the same time since your body will pick up the magnesium in preference to the iron. You still need both, just don't take them at the same time.
3. Horizant and gabapentin are not strong enough to cover the withdrawal effects from pramipexole. Only an opioid can do that. Once you get your pramipexole dose down to 0.5mg/day, you would need about six or seven days of opioids to get you through the final step. Otherwise, you will go though that week where you go from 0.5 to 0 with zero sleep (not even naps) and the worst RLS movement issues yet. The next week you will finally start to get increasing amounts of sleep and your legs will slowly start to calm down toward your baseline RLS symptoms, which Horizant may be able to cover. During this period, give your remaining pills to your wife to hide them from you so that you are not tempted to take one again (which simply restarts the withdrawal clock).

Finally, you may find that after all of this, you will still need to take a low dose opioid every day. Many of us found that augmentation changed our bodies to the point where we will need to take one every day for the rest of our lives. We don't experience addiction or a need to increase the dose due to tolerance (which is something most doctors don't understand. There are two publications that you need to take a look through and probably need to share with your docs, they are:

https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://www.mayoclinicproceedings.org/a ... X/fulltext

[Polar Bear]

Hi Martin
Just to add. Many years ago before my rls symptoms were pretty much controlled I was also going crazy. I was prescribed Ropinerole which is a sister drug to Pramipexole. I was on way too high a dose, knew that I had to get off it and after several false starts I finally got there. However my own system of weaning off was very much slower that most folk, I took 10 months to wean off. I was fortunate that my GP also prescribed me Codeine. Without it I would never have managed.

At the same time I was suffering from neurological symptoms in my feet (possibly Diabetes related) and for this my Dr prescribed Pregabalin which is a sister drug to Gabapentin. It was a blessing that Pregabalin also helps relieve rls symptoms. The end result, I got off the Ropinerole after 10 months and continue to use Codeine and Pregabalin. Many of us will take a medication cocktail and often it is trial and error to find what will work best.
The end result is that an Opioid will often be the drug which will work.

Rustsmith's suggestion of a very hot bath or shower is what many sufferers will successfully try. I found that icy cold water worked best for me. I had a big bucket and filled it with water as cold as I could get. It was almost painful at first when putting my feet and lower legs in. After tolerating it for a few minutes it was ok and I'd splash the water up as far as my knees using a cloth. Eventually symptoms would start to calm and after about 15-20 minutes there was the bliss of no symptoms. This usually gave me a gap long enough to get to sleep.

After my medication regime was settled upon, my Sleep Doctor suggested I come off the Citalopram (antidepressant) which was at a very low dose anyway. I'd always felt that I had no negative affects from it. However as an antidepressant is a known possible rls trigger the Sleep Doctor felt it best to remove any possible triggers and I successfully weaned off the AD.

[Rustsmith]

I forgot to mention about getting off of Citalopram. Doctors are well versed on how to get us started with meds, but often have no idea of what is involved for us to eventually stop them. Anti-depressants are notorious for being difficult to stop and doing it correctly can take many weeks. Further, stopping too quickly can cause long term issues (look up anti-depressant withdrawal syndrome to find out how scary this is). I went through it and feel that the psychiatric doctor that forced me to stop abruptly did permanent damage to my mental health.

The best source of info for stopping meds will often be your pharmacist. Their training includes both how to properly taper up and down. So, ask before you try stopping.

[Fly007]

Thank you for all the tips and encouragement. I have been taking hot baths for years, and actually made it part of my night time ritual. Was not aware about the magnesium and iron thing, definitely going to split them up. Went to the Dr today and we decided to stay on the 1200mg Horizant, and added 50mg Tramadol at night so hopeful that will bring some relief. As for Pramapexole it is bye bye! Going to try and slowly bring down the Citalopram dosage, and maybe eventually switch to Wellbutrin. Also checked Ferritin levels today and they are up to 93 from 77 so the iron pills are doing something. At this point I think a couple nights of good sleep and I can get things headed back in the right direction!