First developed RLS years ago, but didn’t even know it was a condition. I thought I was simply going off my head, until a nurse in hospital noticed the uncontrollable violent thrashing id do with my right leg (initially). She told me to go to GP when I was discharged and tell him about this unbearable, compelling urge to move the leg especially at night!
I’m epileptic too, and the lack of sleep was inevitably affecting the quality or lack thereof I was getting each night, so seizures were occurring more as a result.
Straight away the GP put me on a very low dose of Ropinirole… which was I thought at the time a Godsend! NOTHING COULD BE FURTHER FROM THE TRUTH!
The symptoms crept back again, so higher dose was prescribed. But then after a couple of years and gradual dose increases, up a total dose by now of 2mg p/n BOTH LEGS ARE WORSE THAN THE INITIAL SYMPTOMS. 😫, and they start ‘acting up’ from late afternoon.
The pain/but not pain - it’s queer, is unbearable. The lack of sleep drives me crazy - I even have to get out of my own bed & sleep in the spare room not to disturb my poor husband who is up for work at stupid o clock a.m. I lie exhausted but wide awake at the same time, throwing one leg out the bed the other over the other side of the bed - it’s almost like a grandmas seizure but without the seizure with all the lower leg thrashing!
I punch my legs. I get up in the middle of the night and it’s like my legs are forcing me to go outside and just walk!
We try hot baths, followed by freezing water shower head directed right onto the calves and I get ten mins peace!
I looked into what I could do to help myself. I don’t take caffeine - never really have, just a water drinker really. Never smoked. Lost 16kg, bought Magnesium Citrate 200mg tablets & take 2 of them daily, bought a Magnesium lotion to massage into my calves after the bath/shower routine, Drink Green Tea as suggested online, bought Tyrosine, (which iv not started yet) my iron levels must be ok as not long had bloods checked for other reasons. Not diabetic.
Can’t get a Dr for love nor money these days! Just had to fill in an online consultation form in the hope a Dr gives me a call within a fortnight 🤷🏻♀️.
So, two nights ago I ditched the 2x1mg Ropinirole pills from my dossette box as well as the Mirrazipine antidepressant (as I read antidepressants can agitate the legs😫), and I slept for 3hours. It was heaven. Better than 10 mins here n there. So iv came to the conclusion Ropinirole most definitely is the Devil! A treatment for RLS with side effects that could cause….. WORSENING OF RLS???
The only genuine ‘looking’ rest I get is post seizure when my body goes into some kind of recovery mode - it’s more a wee state of unconsciousness than a restful sleep. But I always wake with banging headaches - plus the seizure activity isn’t good for me or my poor family who have to deal with them.
Last night, the 2nd night without Ropinirole or Mirtazapine and I didn’t have that horrible uncontrollable urge to move, but a creeping itching feeling up both legs all night instead.
My relief comes with daylight - when I can keep on the go all day. I always used to have a great sleep pattern, early to bed, early to rise but now, I dread mealtime coming around. I stay awake now as long as my eyes can bare to stay awake, thinking I‘lol sleep now as I’m soooo exhausted. But nope - into bed and BOOM!
I’m losing the bloody will to live at 50 because of this constant exhaustion and seizures as a result, then rewind, repeat! Rewind, repeat! Exhausted but not allowed to sleep because of my legs!
Why can Doctors do so much, God love them, with their knowledge yet help so little with this condition 🙈.
UPDATE: I am now being prescribed the Pramipexole 0.88mg, one 3-4 hrs before bed, after being told “up your Ropinirole from 2mg to 4mg” which I point blank refused to do.
So with the first Pramipexole came the proper rested sleep for days. But I feel drunk/tired through the day. That could just be that I’m still exhausted thanks to no sleep.
i also bought a couple of wee vibrating things (TheraPulse)…. I don’t usually buy daft gizmos but they had a lot of positive reviews so I gave in and bought two. I strap one to each calf for about half an hour before bed. So I’m enjoying my sleep until augmentation with that drug sets in 🙈. xx
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Ropinirole is a dopamine agonist and so is pramipexole. You will soon have the same problem. Dopamine agonists used to be the first line treatment for RLS but no longer are because of the danger of augmentation which believe me you don't want because it can be hell to come off of them and if you are on them for a long time your dopamine receptors may be damaged so that the current first line treatment which is gabapentin won't work. Up to 70% of people on them will suffer from augmentation. I strongly recommend that you ask for gabapentin and then stop the pramipexole. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at
Https://mayoclinicproceedings.org/a... You said your iron must be OK because you had your bloods checked but the normal blood tests do not check for ferritin which is what you want. Ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
I agree with Sue.If your GP knew the basics of RLS, he would have told you Mirtazapine triggers RLS. Stopping that and raising serum ferritin would probably have resolved your RLS.
Ropinirole and Pramipexole are dreadful. You will quickly experience augmentation ( severe worsening of RLS) as your dopamine receptors are fired up and over stimulated by the anti depressants and the dopamine agonists.
Get off Pramipexole ( slowly to avoid withdrawal symptoms) and start the gabapentin as advised by Sue.
Educate yourself because GPs and neurologists know very little.
Thanks Sue & Joolsh xxIv only taken two Pramipexole 0.88mg to date.
Last week when I stopped the Demon Drug (Ropinirole), I also stopped taking the one 45mg Mirtazapine (antidepressant)…..and used a magnesium lotion on the legs, in conjunction with they wee gadgets (time will tell if iv peed £70 against the wall) but desperate times call for desperate measures as you’ll all have experienced.
I see my weekly psychologist again on Monday and I’m gonna admit to her the depths of despair this RLS condition has caused and the cold EMAIL from a GP in my Practice telling me to go from 2-4mg of the Ropinirole. My head is fried! And only you guys in here get that and for that I am so so grateful 💖.
I do have a neurologist on the NHS, because of the Epilepsy, but not due to see her again til next April - so is it worth asking her about treatment for thevRLS?
I will call the GP to arrange that blood test ferritin count - but I’m terrified Hel hunt me or strike me off the patient list.
Most GPs in the UK know very little about RLS. If they were taught to research they would not have increased your Ropinirole from 2 to 4mg. If Ropinirole stops working, you slowly reduce by 0.25 mg every 2 weeks. A low dose opioid is often needed to settle the withdrawal symptoms.He should not have prescribed Pramipexole.
If you haven't had bad withdrawal symptoms ( severe 24/7 all over RLS) then that's incredible and stay off both Ropinirole and Pramipexole. However, if you do get bad withdrawal ( severe RLS) then go back on 2mg Ropinirole and slowly reduce by 0.25mg every 2 weeks.
What medication are you on for epilepsy?
Gabapentin and pregabalin are anti seizure meds and both are used as first line medication for RLS.
However, getting off anti depressants usually resolves many cases of RLS.
Raising serum ferritin will resolve most other cases.
You could probably be med free.
Your epilepsy neurologist will have heard of RLS but may not know the up to date treatment algorithm from the Mayo Clinic.
As Sue advises, after raising serum ferritin, pregabalin and gabapentin are prescribed as first line treatment. The average dose of pregabalin is 150mg at night, and the average dose of gabapentin is 1800-2400mg but do check with your epilepsy specialist before starting because these are also anti seizure meds.
Hi, I agree with all the great advice and info and I really feel for youBut your treatment options may not be as straightforward as some and following the Mayo algorithm because of your epilepsy as I assume you are already on an antiepileptic.
I’d try to see if you can at least speak to your epilepsy neurologist to see what you can take.
……. written with left leg thrashing about - your description is so perfect, an
----"So with the first Pramipexole came the proper rested sleep for days. But I feel drunk/tired through the day. That could just be that I’m still exhausted thanks to no sleep."_Hi,
... some two/three years ago, I tried both Pramipexole (maximum a week) and Pregabalin (two months maybe); both never more. Side effects did not pay off.
... on Pramipexole, strange things happened: I felt kind of having complete control on my legs, no moves (confirmed by sleep machinery), however it was as if I was stranding between sleeping and not sleeping all night long; crazy situation!
I do feel for you. RLS is the most appalling thing to live with. You’ll find so much good advice and support on here. Good luck, and keep us all posted.
Wow!!!!! your description of your suffering is like mine but since I am more aged I hate to inform you but the suffering worsens with age. At age 63 there is definite excruciating pain for me. In between doses of pain meds waiting for the exact minute I can take my next pain pill I keep a yard stick by the bed to beat my anterior tibialis with - thats where the pain is the worst for me. I bought some heat wraps that have a battery pack that are to be used for the back but they have an adjustable strap and so wrap on around each shin. they get really hot on the hottest setting and so I have to be careful because I have twice burned my leg to the point of a blister so I turn them on for 3 minutes then off for 3 and the intense heat does help some. If you sleep with them on you cant go above a medium setting for the risk of the burns. Also kratom - a natural drug - helps wonderfully for a now and then remedy. If you take it too much like requip or gabepentine you can augument with it and will need more and more to control the pain and it is expensive since it is not covered by insurance. take red strain for night and silver for day.
So, I have to update my fellow sufferers of this horrendous condition. As you all know from my original post, I augmented after being on Ropinirole for over two years….After refusing to double the dose to 4 mg as recommended by yhe GP, he changed meds to 0.88mg Pramipexole per night.
Now, THANKS TO MANY OF YOU ON THIS FORUM, I knew that tablet was also a Dopamine Agonist and would again eventually lead to me augmenting. And that was just a big NO NO & not a thing I was prepared to accept if I could help it.
I called the GP again, or should I say the lovely receptionist, and asked for a face to face appt with ANY Dr to discuss this and show him the updated Mayo Clinic Studies on this awful condition. You won’t be shocked to read I was denied a face to face if I was planning on not taking the new medication.
So, I took about 5 nights worth, more for the sleep but also peace from that inane urge to thrash legs all over the place for a minute of peace
This pills side effects were terrible. Light headedness, nauseous, dizziness, sleeping until after 9am (and iv always been an early riser) and even at that having to drag myself out of bed, being over tired, Stoating about as though I was drunk and I even fainted once.
I kept up with my wee vibrator things (not as it sounds I swear, but that’s basically what they are - no point sugar coating it) twice a day. Firstly for about 10-15 mins at lunch time and then I strap them on mg calves for about half hour/45 mins while in bed watching telly or reading. And I’m pleased to tell you guys that iv not taken a Pramipexole for three consecutive nights now and slept thru (with exception for the odd toilet call). Gone are the unpleasant side effects mentioned above, and touch wood the need to violently thrash my legs all over the beds etc.
Oh yeah, and the only other change I made in conjunction with the plethora of others is, instead of taking my magnesium supplements in the morning, I take them before bed.
So, is this a temporary reprieve or will they come back again and if so, God Forbid worse?
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