Hi everybody I need some help, I have had RLS and PLMD for over 30 years have tried all sorts of medication over the years with no success, saw a neurologist 2 years ago and also went for a sleep test and they recommended the medication I am on now.
Gabapentin 300 mg x1 Three times daily, (I take 2 around 6-7 pm with evening meal
Mirapexin 0.52mg x1 daily ( slow release)
Tramadol x50mg x1 up to 3 times daily ( I take 2 at night to help sleep)
Conazepam x 500 micogram when needed at night to help sleep (try not to take too many)
Trazodone x100mg x1 at night to help sleep ( an anti depressant that does not always help but I know there are not many that we can take.)
Ferrous Fumarate x210mg x 1 twice daily with food. ( to help with iron levels)
Co-Codamol x30mg/500mg x1 or 2 to help sleep.
There are a few tablets listed but there are still many nights that my legs are unbearable, especially lately, like tonight for instance, I went to bed at midnight and 1/2 an hour later here I am writing this as I am so desperate. I am also finding that around 9 pm I am going into a really heavy sleep and when my husband wakes me up to go to bed I wake up feeling really bad with a bad headache and feeling heavily drugged and also sometimes talking gibberish that he can not understand, it goes off after a time, but is really worrying, he also tells me that I am twitching a lot,this happens most evenings. The night before I was up at at 4 am pacing about and I had not been to sleep at all. it is really getting me down and I am at my wit's end. I would REALLY appreciate some help, sorry it is such a long post but I could have written more but it gets boring ! as you all suffer the same.
Kind regards to all and wishing you a Happy New Year.
desperate 41
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desperate_41
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My gut feeling after reading your post is to get off as many of the meds you are on as possible. Things get quite complicated to sort when you are taking multiple drugs and various unknown reactions. I know this is easier said than done but is the course I’d take if I was in your situation.
I have had moderate to severe RLS for the last 40 or so years. I have never taken a specific RLS drug to treat due to my general dislike and suspicion that meds often complicate health issues over the long term.
These are what I do to control my RLS to an acceptable level:
1). Remove as much refined sugars and simple carbohydrates as possible from your diet. Generally eat wholesome food.
2). I take 1 teaspoon of powdered magnesium citrate with a water each night before bed.
3). In the occasional night I still have issues
I take 1/2 tablet of Valium. I find this is only necessary about once per month.
The above suggestions have rendered my RLS very manageable. Prior to adopting these methods it was not uncommon for me to be up until 3 to 4 am with unrelenting RLS. I hope you soon find great relief.
Thank you for your advice, I know it is better to come off as many of the drugs but I have been really desperate, I think over the Christmas period I have been eating far to much carbohydrates (and chocolate !!) I am going to have a clear out of my fridge and do what you suggest and hopefully get a better night's sleep.
Also I think when you have had to put up with it for so many years you know immediately the signs and I have been reaching for the tablets and then when one does not work you go on to something else and so on.
I also have put on a lot of weight (all the pacing about in the night gives you the munchies) I have got to get a grip, New years resolution.
Hi! I have both RLS and PLMD as well and it is beyond awful!! I agree with jphickory in regards to the meds. If I were you I would get with my doctor and go through all these meds with a fine-tooth comb. There are umpteen side effects and interactions that could be there! Once I came off of several meds. I felt a whole lot better mentally (although still working on the physical part).
A few things that are recommended for sleep (although I don't know how these are supposed to help in the case of physical conditions) are as follows:
keep the bedroom at a cooler temperature than the rest of the house
don't have any electronics in the bedroom
keep your bedroom as dark as possible (if you can't do this, wear a sleeping mask)
I also have a machine that gets rid of dust and other allergens.
Also, I take a warm shower if my legs happen to wake me up at night. This normally helps get me back to sleep.
Oh my, Desperate, that is a very long list - too long for anyone on the planet.
This is polypharmacy at its worst - how can anyone know what is working and what is not? While adverse effects from single drugs may be known, to some degree, the inter-reaction of multiple drugs are not known and not researched.
You are drugged to the gills, and as all of these drugs act in the brain you will feel absolutely awful.
Change your doctor, your neurologist is clearly not helping.
Your dopamine agonist is quite a high dose and could be causing augmentation. Pramipexole also causes insomnia. The Tramadol could also be causing augmentation.
You might be a prime candidate for low-dose opioids, but whether or not you can find a doctor to help is another matter. It is possible that with Oxycodone or Methadone you could reduce or quit all the other competing stuff.
It is hard to find the energy to make a big change in such draining circumstances, but please try to find another doctor who knows what they are doing - you do not need to suffer so much.
Hi, I have had severe RLS, PLMD and sleep deprivation for many years. I was given the usual med Ropinerole and got augmentation, so came of that and went onto Gabapentin and reached max dosage over time, but still had problems with the RLS and severe sleep deprivation. It was only when I had my knees replaced that I was given Oxycodone (10mg morning and night) after surgery for the pain that my RLS was stopped in it's tracks. When I finished the course, the RLS came back. I had a bit of a fight to get it prescribed, but with help from people's comments on this site and research, I took all my evidence to my doctor and got it (5mg am 10mg pm) I do get a little break through before my evening dose and I put that down to the 5mg - but I consider myself lucky to have had it prescribed in the first place! Then a doctor at a sleep clinic added in 75mg of Pregabalin to assist with my sleep - which has helped, not perfect, but I get more sleep now than I did. Along with the usual sleep hygiene advice. So in my case, l hope it continues to work for me!
I hope you will be able to find something to help you.
I am sleeping well after cutting down on bread and avoiding all forms of sugar ( from sweets, cakes, chutneys etc). The diet will probably cure you of rls as well if you stick to it rigorously (no 'treats'!).
It’s not a bad plan, Eryl. But the results will not be for everyone like it is for you. I wish it were.... I tried rigorously for 5+ months, but it didn’t make one iota of a difference. Infortunately. I do hope it works for others like it works for you. So, desperate, it wouldn’t hurt to try!
Sorry to hear of your travails. I agree with most of the replies here, in particular the suggestion that you are likely augmenting on Mirapex. That is a fairly high dose. (Let me know if you need more info on augmentation.)
First thing I would do (after reducing or eliminating sugars and refined flours, as has been suggested) is to have your iron level checked: specifically, ferritin. RLS sufferers need to have that level at least 100, which is above the "normal" range for other people. If it's low, you can either try to get IV iron infusion, or if you go the oral route, try ferrous bisglyconate, which many here have had good luck with. Do NOT take it with food; by doing that, you reduce the amount that gets absorbed. To maximize the amount that gets into your system, take it at least 2 hours after last meal, with 100 mg vitamin C.
Also, don't take more than one opioid. Stick with tramadol or co comadol, but not both. The gabapentin may be helping; you could try increasing that dose.
The trazadone is usually considered to be okay for those with RLS, but for some, it aggravates symptoms.
Most importantly, as others have said, see your doctor about all this, and go over those meds. You've got a real pharma mashup going on, and need to get that sorted out. Good luck!
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