Hi all. I am new to this website so would welcome any suggestion. I live in Ireland and no one I know suffers from RLS.
I was diognized with acute RLS in 2003 (only after years of insomnia which was making me depressed and irritable). Originally prescribed a low dose anti Parkinson drug after which, i had the best sleep since I was a baby. 8 hours on the trot - my hubby thought I had died!! Unfortunately the effects only lasted a few years and then in 2007 I was introduced to 2mg Neupro. Usual side effects (the best was the original weight loss which sadly stopped as my body got used to the drug) and in 2010 I was prescribed the 4mg patch. I am now 16 years on anti Parkinson medication and beginning to feel worried about my mental state and brain function going forward. I am 63 years of age. Very active, nice group of friends, supportive family and have a part time job.
However due to a car accident years ago when I was 18 I am experiencing increasing physical problems such as arthritis in back and leg and suffer dehabilitating pain occurances. I persist with my sport though when am free of pain and take normal amounts of painkillers and anti inflamatories when needed.
However nothng compares to the discomfort I experience at night with my RLS. I cramp all over, cannot control my limbs, my body goes into spasm and my mood deteriorates rapidly.. I know you all have felt like this from the comments I have just read.
Though I attend a neurologist and my doc is aware of my cndition, they basically don't give a damn.
Despite being on this horrenduois medication, I have never been checked up upon and never asked about regular blood pressure checks. All they say is that I should increase my dosage.
Questions (forgive the above long winded account but want to be specific)
1. Should I increase? I feel my body is getting used to the drug and as such the drug becomes less effective.
2. Is there a safer alternative that I can suggest to doc and one that doesn't have addictive qualities.
3. Am I compromising my brain fnction by continuing to use Neupro. One recent wag told me that if I continued with Neupro I would become senile early!
4. Has anyone on this site ever weaned themselves off Neupro without experiencing withdrawal problems.
5 I recently broke my right leg and ankle and at night time my cramps are so severe I feel they are effecting my bone healing powers. Could I be right in that? I am home from hospital, on crutches, wearing a non weight bearing boot and becoming depressed because of sleep deprivation and worry.
6. Has anyone done it alone....managed RSL without drugs?
Many thanks to those who have kept on reading this monologue.
Feeling worried. Woukd welcome any form of advice.
Written by
Cottie
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You are not alone in your condition, and there are a number of rls posters on this site from Ireland.
Firstly- you should not increase the medication. Please research "Augmentation" on this site and look for an article by Dr Buchfuhrer " Sleep Review" - it is referred to constantly on this site.
All the medications for rls are potentially addictive if you have an addictive personality- but only about 1% of the population is such- but we all suffer because society gets its kniks in a twist over 'abuse'.
You really need to find a good understanding doctor- let us know whereabouts you are, and someone may have a reference for you . I had to go to the Pain clinic in Tallaght and got opiates for back pain, which conveniently covers my rls . There is a sleep clinic in Dublin ( Beaumont???) Where soma research on rls was being done, but I've heard nothing about them recently. If Involuntary dancer doesn't come on here, then I would PM her.
Coming off any of these drugs involves pain. The higher the dose and longer the time, the harder it will be. The mantra is " Slow and small" tiny increments and long intervals. Your body has to get used to a huge ongoing shock to the system.
I am not a medic, but in your situation, I would be tempted to return to the hospital, expressing massive pain and hopefully get put on a course of low opiate ( Tramadol er or Oxycontin 5).
Otherwise your next medication would be an alpha2 ligand ( Gabapentin or Lyrica) someone said the latter has come off patent, so it should have a generic and be a lot cheaper.
There is a paper, also by Dr Buchfuhrer, on the long term use of low dose opiate for rls, I'll post link if I can locate it. But Kaarina will probably get there first.😆
It will be useful to print out both these papers and present to you doctors.
In Ireland, you will have to get a consultant to prescribe opiates.
Otherwise, you need to do the usual housecleaning for rls.
Check serum ferritin level, avoid triggers, avoid antihistamines and antidepressants. It's all on previous posts.
Don't increase the dose of the Neupro. 3mg is the maximumpermitted dose for RLS. You most likely have augmentation after all those years on dopamineagonists. You will need to very slowly wean off the Neupro. I am currently doing the same thing as I want a break from it. Try 3 mg patch for a couple of weeks and then just keep cutting a small strip off but take it slowly
Are you on any other medications for your pain or anything else as many can make RLS much worse. Plus if you are on painkillers it may be possible for you to increase them as you lower the dose of the Neupro patch. X
Thank you. Was on strong pain killers in the hospital but no longer need to take them. I also occasionally take anti inflamatories but trying to cut down as bad for tummy.
Maybe I will ask some doc those painkiller queries with relation to coming off Neupro.
Need help badly. It is 4 am and been struggling since midnight.
Not working at the mo due to brokennleg but if I had to, my life would not be worth living., impossible to be polite, efficient, professional and productive day after day after night like these.,.,...
Madlegs has given great advice as always. I would totally concur that you should NOT increase neupro further. In your shoes I would be looking to discontinue it (very gradually) at least for a few month.
To answer your question #4 it is unlikely that you would not experience worsened symptoms as you discontinue/eliminate. Some people have managed to come off dopamine agonists without too much trauma but only when they have had access to fairly potent opioids such as methadone which is virtually impossible to get in Ireland unless you are a heroin addict. My GP prescribed OxyContin to help me. It is a pain to have to withdraw from the opioid after getting the dopamine agonist withdrawal over with but, bad and all as it is, I’d take opioid withdrawal over dopamine agonist withdrawal any time.
I have yet to hear of anyone in Ireland who has accessed good knowledgeable care for their rls. I attended a sleep consultant in the Mater for mine but frankly I would agitate for the prosecution of someone who put an animal through the suffering she casually inflicted on me when I was coming off pramipexole.
I was turned down by three different neurologists on the grounds that they had insufficient expertise in rls to treat me which was honest of them and an indication of the level of expertise here.
Ultimately I had to educate myself using this forum, the US forum at bb.rls.org, Dr. Buchfuhrer’s website and emailed replies, the Johns Hopkins hospital website and a medical textbook I ordered from Amazon (clinical treatment of restless legs syndrome by Lee, Allen, Hening and Buchfuhrer). My helpful but (by his own admission) ignorant GP has implicit trust in my research and will prescribe whatever I ask for my rls (at least he has done so so far). This is both great and a little daunting because (and here I’m picking up your question #2), none of the treatments for rls are particularly low grade. The pharmaceutical options are: the Parkinson’s drugs (dopamine agonists), the anti-convulsants drugs pregabalin or gabapentin and opioids such as tramadol, OxyContin or the rolls Royce for rls treatment which is methadone.
The one less severe treatment is raising iron levels but the most effective way to do this is by iv injection using injectafer which again you will struggle to get in Ireland. Raising iron levels to at least serum ferritin 100 helps about 50% of sufferers. Thus a good starting point is to get your serum ferritin checked by your GP and if it is less than 100 (make sure to get the actual figure - not just that you are ‘normal’) start an iron supplement - many on here take ‘gentle iron’ (iron bisglycinate).
Most people coming off a dopamine agonist require an opioid to help them through. I stopped taking the opioid when I got over the withdrawals but many stay on it.
I have never before heard of any connection between neupro and senility or general disimprovement in brain function (que #3) though you need to watch out for impulse control issues such as compulsive shopping or gambling and also sudden sleep onset.
Because dopamine agonists tend to cause a worsening of symptoms, especially as dose increases, I would have thought it’d be worth your while to go through the misery of withdrawing to see if your symptoms ultimately improve, particularly if you have currently got low serum ferritin as raising this could also help. Then you could consider trying to do without drugs or trying pregabalin or gabapentin which can also help with nerve and other pain issues so might serve a dual function for you (if you’re not already on them). They aren’t for everyone however - some people can’t cope with the side effects.
It is also worth checking the list of counter-indicates substances (such as SSRI drugs, amitryptiline Benadryl - in cough medicines - some anti-histamines, red wine etc) to be sure you aren’t inadvertently making your symptoms worse. Do not expect your medical advisors to be aware of any of this. The fact that they are not aware of it in no way lessens the importance of it however.
If you do manage to get off neupro you could certainly try managing without drugs but give yourself at least three months from last neupro patch because it can take a good while for symptoms to settle down to their base level if you’ve been on a dopamine agonist for a while. There are many people on here who manage without pharmaceutical intervention (que #6). The most useful treatment is iron. Many also find magnesium, either as a supplement or applied topically to the legs is also helpful. Then there is a plethora of additional suggestions you will find cropping up if you come on here regularly such as support stockings, tens machines, yoga stretches, diversionary tactics such as video games (reading, tv or paper puzzles are insufficient) etc etc.
Many find a ‘clean’ diet helps a lot and there are some ardent exponents of various dietary options. I find that reducing sugar, under-eating (easier said than done) and not eating too close to bedtime helps.
On the dark side Kratom (has to be ordered from Holland) is very helpful for symptoms and many also report that cannabis is of assistance though it doesn’t work for everybody.
I’m not surprised you’re getting depressed. It sounds like you’re going through a lot at the moment and maybe you need something to boost coverage of your rls symptoms while your leg heals. You could try asking your GP for pregabalin (as you want to avoid dependency inducing drugs - otherwise I’d suggest tramadol) which should help though it can take a while to kick in. I would definitely take an alternative drug rather than increasing neupro which will lead to much worse problems down the line.
Hi I have suffered from this in the past, mainly when I have been on my feet all day, have you tried cool packs freeze sprays, cool gels cool flannels? Massage, cool baths, they have helped me, I now take tramadol and anti inflammatorys for arthritis in spine, not suffering much now with restless legs mostly happens to me in the summer, best wishes hope you find something that works best for you all the best x
Funnily enough, I swim a lot in the sea ...yes the very cold Irish one!
My rls is never as bad, looking back, when i am in twice during day (usually throughout hot summer months). There may be a correlation. I will try and take notes when I resume swimming after foot heals!
I will revert anything positive. Again, your support is most appreciated.
I definitely find that emersing my legs in the sea helps with rls. I camp by the sea in Sligo during the summer and have often taken a midnight dip to deal with the legs. It is a surreal experience but it does help.
Cottie -mine tends to start in the evenings- the worst evenings are Friday nights because I go horseriding & am continually using them to give the horses I rid instructions & wearing jodphurs & short boots which make my feet hot & therefore more prone to it
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