I’m new to this site! I’m 70 years old and my RLS has been worsening over many years. I’m sure well I have to say is nothing you all haven’t heard or felt before, but I’d like some advice. I am currently on .25 mg of pramipexole. I also have 100 mg tablets of gabapentin, which I hate to take, Because I wake up slightly woozy. (My neurologist says I am taking way too low of a dose and to increase it, my physical therapist says stop the gabapentin it’s a horrible drug, my GP tells me to increase the gabapentin and to stop taking clonazepam to sleep, so I’m on a merry go round in advice!!! Sometimes the medication works but most times it doesn’t. Sometimes I can’t even sit and read a book in the evening or watch tv because my legs make me crazy. I don’t know what it’s like to sleep through the night and come 3:00, 4:00am, my legs wake me up.
My neurologist just keeps telling me to increase the doses, which I don’t! I’m afraid to go out in the evening because sometimes when I’m driving the legs start, and I feel like I’ll get in an accident. Any suggestions would be greatly appreciated. I feel like I have no life and it’s very depressing.
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"Sometimes the medication works but most times it doesn’t"
This is a key sentence in your tale of woe. It indicates a very strong probability of there being triggers at work.
You need to keep a diary of your food and drink and medication- intakes. That will quickly point up relationships. There are so many triggers and they are so personal.
Essentially, antihistamines and antidepressants, alcohol and msg are key ones . But there are many more.
You are on max dose for Pramipexol, so on no account increase that.
Why are you taking the clonazepam? It is what is probably making you woozy. The Gabapentin is a low dose. Are you taking magnesium? If so ,keep at least 2hrs between it and the Gaba.
That's enough to be going on with.
I need to check out the clonazepam, so may get back to you. Or, I'm sure Manerva will be!😜
"Clonazepam is usually used in all forms of epilepsy but can also be used for the symptomatic treatment of Restless Legs Syndrome (RLS). This is due to its muscle relaxing activity. Clonazepam causes a calming effect on the brain which may help to control body movements.
You can follow these up yourself, but the clonazepam seems to be leaving you between the proverbial rock and hard place.
Keep with the diary for 3 wks and see how things go.
Look at your potential triggers carefully.
Maybe get a serum ferritin rest as well. It should be above 100. If very much lower get back to us.
Cheers.
Hi, I really wouldn't like to be in your shoes, it seems you have too many advisers and what's worse, they're telling you different things.
The first thing to consider is, which of them is an expert on RLS?
I'm afraid what most people on this site say is that real experts on RLS are a rarity even in the medical profession, even neurologists.
So you need to find out as much as you can about RLS, causes, remedies and treatments for yourself.
Theoretically, if you know the cause of your RLS, you can do things to relieve it.
Some people suffer from "Secondary" RLS where there is some other underlying conditiion which is causing the symptoms.
Some people suffer from "Primary" or "Idiopathic" RLS, where there appears to be no underlying condition causing the symptoms, it's genetic.
With 2ndry, treat the underlying cause and you relieve the symptoms, with primary, you treat the symptoms, but there is no cure.
In practice it's a matter of first identifying if there's anything contributing to, or making symptoms worse. These could be things that are "triggering" the symptoms or things you are lacking, deficiencies.
Non medical remedies then could include avoiding triggers or correcting deficiencies.
Triggers include such things as Coffee, alcohol, antihistamines, some antidepressants, some antacids, some people claim lactose or gluten makes their RLS worse.
There are deficiencies which have been associated with RLS i.e. iron deficiency (particularly), potassium, vitamins D and B12, magnesium and hypothyroidism. You can have blood tests for these. For iron though, it is better to have a "ferritin" test rather than the normal tests for anaemia because your brain iron can be low, even if your blood iron isn't.
Correcting these thibgs can help even with Primary RLS, which it seems you have as you've already progressed to medication.
Three medications!
In alphabetical order -
Clonazepam is a "benzodiazepine" and has "hypnotic" and "muscle relaxant" properties. It's generally not a good long term option for RLS. It isn't recommended as a first line treatment for RLS> It quickly produces dependence and can lose its effectiveness. It can help relieve insomnia in RLS, but has little effect on motor symptoms of RLS. It also has a long half life. The half life of a drug is an indication of how long it stays active in the blood stream. Half life is the time taken for half the drug to disappear. Half the drug disappears in that time, then half the remainder in the same time (i.e. a quarter) then half that remainder of that (i.e. an eighth) and so on.
The half life of Clonazepam is 30 to 40 hours!!!
So basically, if you take Clonazepam one night, at least half of it is still active through the following day. = wooziness.
If you decide to stop the Clonazepam, if you've been taking it for some time, you need to stop it fairly slowly, depending on what dose you're taking.
Gabapentin is an "alpha2delta ligand" it modifies the action of neurotransmitters in the brain. It's primary use is as an anti-epileptic drug for seizures. It's also used for relieving nerve pain as it reduces the sensitivity of nerves. It is also recommended for the first line treatment of RLS.
Gabapentin is one of 2 a2d ligands used for RLS, the other is Pregabalin,. Pregabalin is more potent than Gabapentin in some ways. They both have the advantage of not causing any stress on the liver, and only interacting with very few other drugs.
Gabapentin can help promote sleep.
They do have some side effects but these vary between individuals, Gabapentin more variable than Pregabalin. Gabapentin half life 5 to 7 hours, Pregagbalin about 6.3 hours. They wear off quick!
You say you have 100mg Capsules of Gabapentin, but you don't say how many you take and when. The less you take, the less effective they will be, the more you take, the more risk of side effects. It's a balancing act.
Pramipexole is a Dopamine Agonist (DA). DAs are recommended first line treatments fior RLS and Primary RLS is largely a disorder of brain dopamine function. DAs are very effective for RLS in most people. However they can turn very nasty. Using a DA can lead to loss of efficacy (they stop working), augmentation (they start making the RLS worse) and Impulse Control Disorders (ICDs).
Loss of efficacy and augmentation are quite common. Typically when Pramipexole stops working, a doctor increases the dose. This however leads to augmentatuion. 0.25 mg is not the smallest dose, and not the maximum, but do NOT be tempted to increase the dose. If you do suffer augmentation due to a DA, you will have to stop taking it.
Itv is possible you might be starting with augmentation. Follow this link for more information on this.
The other thing about Pramipexole is that although it might be good for relieving the symptoms that prevent you getting to sleep, it causes you to wake early. I.e. Pramipexole causes insomnia.
I have experienced all 3 of the drugs you take. I only ever took Clonazepam for a few weeka, 4 maximum, with little effect. I took Pramipexole 0.75mg for nearly ten years and suffered augmentation, i.e. quite severe RLS symptoms, all over at any time of day or night and after only a moments stillness. Maximum 2 - 3 hours sleep every night.
In 2018, I started on Gabapentin and started reducing the Pramipexole. I started sleeping better and my RLS symptoms became less severe. I now take NO Pramipexole at all and 600mg Gabapentin at night only. I rarely have RLS symptoms, sleep 6 - 9 hours a day (not always at night).
From my own expereince I'd suggest you increase your dose of Gabapentin, up to 900mg at night, (you can take more) and perhaps keep your Pramipexole the same or reduce it. If that works, reduce the Pramipexole more. You might consider changing to Pregabalin, this might be more effective.
I expereince side effects of Gabapentin, I sometimes feel a little dizzy in the morning or nauseus. It quickly wears off. I sometimes have balance problems but never actually fall over. These are minor inconveniences compared to augmentation and insomnia.
Hi Mandriva i read your information on rls with interest I suffer severe primary rls and insomnia I’m currently taking one .25mg pramipexole evenings and one .52mg pramipexole bedtime on the advice of my neurologist I probably suffer augmentation now I can’t sleep! I have an apt with go this. Month and I’ll try to get gabbapentine and an apt to a sleep clinic and hopefully someone who special in rls I’m lost at the moment!!
I am 70, live in Australia, and I have had restlesslegs for a number of years. "Sifrol" has been my salvation. 2 around 6pm and 1 around lunch time. It works for me.
Sifrol is a brand name for Pramipexole, a dopamine agonist. As long as it' s working for you that's great. However there are problems with it and if it should stop working NEVER increase the dose.
I am also 70 years old and suffer from the same. I take a Pexola tablet plus two cramp ease capsules (for night)at about 7 at night. Plus extra magnesium a little bit earlier. Then a Zolplicone sleeping tablet when going to bed. If I still wake up or can't fall asleep, then I take a pain killer. Something like Adco-dol. And that pretty much do it for me.
My dear fellow sufferer I have no solution but I want you to know I am in exactly the same place you are. I was on 150 mg of pramipexole which has now stopped working so I am looking to reduce the dose and eventually come off it altogether. Why take something foreign into my body if it is not effective.
I am going to try acupuncture as I am told it can work; I’ll try anything for relief.
I am 68 and I too barely get sleep; I still work and I have to get up at 5.45 in the morning and it’s very difficult when I don’t get to sleep until the earliest 4.00 am.
I empathise with you when you say it is ruining your life as it certainly is mine.
One point of hope; I use a magnesium based ointment when it is really unbearable and I do get some relief. I’m on the bus to work at the moment so I haven’t got the name of the product with me.
Pramipexole for RLS usually comes in 2 dose sizes. 0.125 mg of the salt Pramipexole hydrochloride gives 88 micrograms (mcg) Pramipexole. and 0.25mg salt gives 180 mcg.
Hence you can take 125mcg, 250mcg, 375 mcg 500mcg and so on.
It's well known to stop working and cause augmentation.
It also makes insomnia worse!
You are right to reduce and stop it. It's important to know what dose you're on clearly so that you can reduce it incrementally. I found reducing it in steps of 62.5 mcg (=0.625mg) worked for me. This means cutting a 125mg tablet in half.
However for my final step I reduced it from half tab to a quarter of a tab, then nothing.
The reason for this is that you can get very nasty withdrawal effects. For some people this is so dangerous they cannot stop taking it at all.
The final step, when you reduce to nothing is the worst.
In addition, since RLS is incurable, when you stop taking Pramipexole, your RLS may return to how it was before you started taking it. Since you're older it may even be worse.
In which case you need something else to replace it. I doubt if once you've had to take medicines for RLS you will be able to manage it without medication.
I suggest you read the various posts on here.from people sharing their stories of withdrawing from Pramipexole, Ropinirole or Neupro - the dopamine agonists.
Hi. I sympathise completely with you. I was diagnosed with restless arms and legs seven years ago. I was prescribed Pramipexole and I couldn't function without it. I take three tablets during the day and up to recently this has worked really well for me. I also am on Gabapentin but I am trying to come off them. Over the past few months I find I am experiencing symptoms during the day, all day and night, and I am waiting to see My Dr and a Neurologist. This is a most debilitating and dreadful condition, and unless you experience it, you don't know what it is like. As there is no cure and all you can do is try to manage it as best you can, I would suggest that you go with the advice of your Neurologist and increase the doses and see if this works for you, but unless you take his advice, you won't know - anything is worth a try. I hope you find some way of getting relief for this life changing condition. Good Luck.
If you're taking Pramipexole and Gabapentin and your symptoms are as you describe, you are suffering augmentation. This is caused by the Pramipexole. If you decrease Gabapentin, it will probably get worse. You need to reduce and stop the Pramipecole. Do NOT increase the Pramipexole.
Neurologists aren't always knowledgeable about RLS and it would be irresponsible for any to advise increasing the dose of Pramipexole if it stops working.
I admire your faith in these doctors, but unfortunately it is ill founded. The risks of taking a dopamine agonist are well established and augmentation, the principle risk, can be very nasty.
Gabapentin is another matter, as it does not cause augmentation. Depending on what dose you're taking, you may be able to increase it as you reduce Pramipexole.
I agree with Manerva- do not increase the dose of dopamine agonists. Most neurologists in the UK are not RLS experts and are unaware of Augmentation and DAWS.
My GP recommended reperinole. I refused when I heard it was a mental health drug (it changes a part of the brains capacity to suck up some more iron). I have haemochromatosis but the iron overloading does not mean - it seems - that the brain iron is high enough. I've had this for 12 years and only just started reading about it. That's what I understand so far.
I find the following help me
- cut down carbs
- loose weight especially if over weight at all
- excercise every day
- cut our sugar esp refined sugar
- stay well hydrated. When you get RLS at night drink lots of water. I find this helps a lot.
I am currently cutting wheat out of my diet to see if that helps. I have cut right back on caffiene also.
Night before last was offered sugar loaded coffee ice cream (all ice cream is sugar loaded). This kept me up untill 4am with hot tingly feet ! So it's no more ice cream for me.
Lasy week I had a night from hell. Read your reply and remembered I had a gigantic choc cookie (which I normally do not eat) and some ice cream!!! Trying, now, to stay away fm sugar!!!!
I admire and commend you on your plan for your RLS. There are many other non medical.things you can do to help which you can read about on here. I understand iron is a problem for you, but you could try taking vitamin D and B12 supplements.
Just to correct your misunderstanding of Ropinirole. This is NOT a mental health drug. It is one of a class of drugs known as Dopamine Agonists which means it acts on receptor sites in some brain cells and enhances the effect of the neurotransmitter Dopamine. This can have a dramatic effect on RLS symptoms and can eradicate them completely and immediately.
It's a neurological drug, not a mental.health drug.
It is not considered to be psychoactive, i.e. producing changes in mood or cognitive function. It had no use for treating mental health issues such as anxiety or depression. It could, but rarely does, produce psychotic side effects.
However, you are probably right to avoid such drugs because, although they can work for some time, for a lot of people after sometime they can lose effect and also cause other serious problems, e.g. particularly augmentation and more rarely, Impulse Control Disorder.
However, for many people, RLS can become very severe to the point that it causes mental health problems and physical consequences and then an RLS drug is needed. I hope this doesn't happen for you.
If it does, no drug is without its problems but there are drugs available for RLS that seem to be less problematic and don't have the same risks as dopamine agonists such as Ropinirole.
These are not mental health drugs either.
There are "mental health" drugs that are sometimes used for RLS e.g. benzodiazepines. These were originally used for anxiety. This does not mean, if used appropriately, they can't be beneficial for RLS.
Finally I'm not sure why you would think taking a "mental health" drug is somehow bad. Taking such a drug if it helps whatever condition you have doesn't mean you have a mental health problem.
,Even if you did have, I have had, what's wrong with admitting to yourself or others that you do have. I'm not suggesting you do have one.
One of the factors in the increasing number of people suffering mental health problems is the continuing stigma that's attached to it.
I have idiopathic RLS, I take a drug to control it. It works. It isn't a mental health drug. I have had mental health problems, I needed help, I took mental health drugs. I've never considered that a bad thing. I've also used non medical mental.health therapies.
Carry on your plan for your RLS but don't exclude taking medication for it if it's causing you problems. Certainly, you need to find out more about what the options are.
For clarity here is my view, which I think I laid out in other posts, but if it wasn't there or wasn't clear here it is (again):
- Mental health is a very important issue that should have no stigma attached. Anyone and everyone should feel they can ask for help from anyone (ideally), and all should be accomodating of anyone suffering, and sympathetically point anyone suffering or in distress to an appropriate gp or mental health practitioner as needed.
- I know I am lucky in that I am sure that my RLS is no where near as bad as plenty others. I get this, and understand that one day I, as others now, may be forced down a medication route, I could not dream of today. Sympathy and understanding is in order.
- I understand you make the distinction between neurological and mental health drugs. I accept there are likley many distinctions for practicing medical scientists in these fields, or for ppl who suffer multiple related conditions. I am not a medical scientist ; my gp explained to me, when I asked, that ropinirole was a mental health drug of sorts. From your points, and the potential, though rare side effects you explain, this could affect behaviour ie the brain. What ever it is I wouldn't want it. Certianly not at this stage. My needs - as I have indicated previously - could in time change.
Please do not confuse where I am, in having rls, which I think is not as bad as others, with lack of sympathy for others.
thanks for the tips on vitamins B12 and D; i've upped my marmite intake (vit B's) and am going to try vit D suppliments Cheers
I appreciate where you're coming from and as long as your RLS remains mild then I would support you in avoiding medication.
I think doctors sometimes in trying to simplify things, can make them worse. It's a bit of an insult to our intelligence really. You don't have to be a medical scientist.
I can certainly syphesise with you I am 80 years old and have suffered with rls many years. I too have been on the "merry go round" of gps and neurologist and have had conflicting abvice. I am currently on .26mg pramipexole during the day and .52mg at night. It used to give me some relief but not now " augmentation " ? The only encouragement I can give is this that the dreadful rls seems to come and go in cycles giving repel during the good times. I am currently taking zopiclone at night to try and get some sleep but it's getting me down I'm drowsy during the day and short tempered as well good luck.
Hi, just to say, I think you may have stated your Pramipexole dosages incorrectly. Tablets for RLS come in 2 sizes, either 0.125 mg of Pramipexole Hydrochloride (the salt) which gives 88 micrograms (mcg) of Pramipexoe. or 0.25 mg salt = 180 mcg Prami.
Pramipexole then can be taken in multiples of 0.125mg. I've never heard of 0.26mg or 0.52 mg.
The main reason I'm writing is that if this is correct, you appear to be taking a massive dose, certainly above what seems to be considered an acceptable maximum for RLS
This may be putting you at risk of suffering augmentation, so you might want to think about reducing it
Hello yes the dosage is correct I was put on this amount by a neurologist I saw privately it gave me relief for quite a while but now augment seems to have caught up ie no longer gives me relief both the go and neurologist seem to think I could go even higher with the pramipexole dosage!! I put my faith in their knowledge the neurologist says that in terms of PD this is a low dose I can’t sleep at night and spend my time surfing the net looking for treatment I’m so tired I can’t even think straight my daughter says stop looking at the web and believe the doctors I’m lost don’t know what to do I just want to sleep!!!
It is more commonly accepted now that the max should not exceed 360 mcg.
I'm not clear why you take the smaller dose during the day. If this is because you experience symptoms during the day then you are possibly already experiencing augmentation.
In addition, a common side effect of Pramipexole is early waking insomnia and if you suffer thsi then it's probably because of the massive dose of Pramipexole..
UK national guidelines on RLS also state that drugs such as Zoplicone should only be given short term. My GP will only prescribe 10 tablets and no more a month. If you take Zopliclone reguilarly then you will be dependent. Additionally after taking it 4 weeks, it will no longer be effective in preventing early waking.
If you're satisfied with this situation then no need to change, but you may get more consistent relief of your symptoms and better sleep quality if you review these medicines, particularly the dose of Pramipexole.
Thank you for your reply. I actually take one tablet of 0.26mg pramipexole about 7pm and a further 0.52mg pramipexole one tablet at bedtime. This had worked fine for me for many months but for the last few weeks it hasn't withdrawn rls kicking in again with bad insomnia. I have had to rely on zopiclone 0.35mg to get any sort of sleep at all. I'm in a bad place at the moment. I don't have a GPs apt. Til 26th Nov. So not sure how yo carry on at the moment
Please read all the replies you received 3 months ago.
Please don’t rely on your GP or neurologist- they have given you really bad advice by telling you to increase pramipexole.
You were augmenting 3 months ago and until you take control and decide to get off pramipexole- your RLS will continue to cause suffering .
I know it’s scary and it will be hard but getting off the pramipexole will relieve your severe symptoms .
Please do read all the advice and read about augmentation.
Sadly, we have to tell our GPs and neurologists about Augmentation and how to get off dopamine agonists because they are not familiar with RLS or how to treat it effectively.
Manerva managed to get off pramipexole over a long period of time by reducing very, very slowly. Please consider doing the same. I reduced much faster and had a very difficult withdrawal so I think the slow route is better.
Once off pramipexole, the Gabapentin should start to help.
Thank you all for your advice. Currently I take .25mg pramipexole, 200 mg gabapentin and .25mg of the clonazapam. Sometimes I add melatonin or advil or anything to stop the madness. Last night was a particularly bad night. Absolutely NOTHING worked. I was in a very bad state of mind.
What do you all do when you have bad nights? Now I am so tuned in, I don't want to get into bed. I lay there waiting for the legs to start. I walk, I dance, I stretch. I get back in bed and the other one starts. I am losing my mind.
I left a reply for you earlier today and told you about a magnesium based oil which gives me some relief. I promised to get back to you with the name of the product. I’m looking at the container right now and what it says is Magnesium Oil. Simply that! It has got the name of the maker which is Nu U Nutrition but I am sure there are many other manufactures of the oil. What’s more important is that it is”Magnesium Oil”
Equal parts by volume of epsom salts ( chemist or agr store) and water ( tap or bottle). Shake well to dissolve the crystals. Can be kept for ever in a screwtop jar.
Put it on, using hand, . It will feel oily.
It may sting a little for some people, so can be wiped off after 20 minutes, otherwise just leave it.
This works for some cases, but not all.
Essential oils may be added, but not too much. Lavender or rosemary.
Hi Brenda from Coventry England yes it awful I don’t think it’s effected my driving yet I don’t sleep sometimes for days or have couple hours it’s so depressing I am 71 live alone lostbmy husband two years ago Think this had made my legs worsecbut any drugs are all short term fix I find I had many amtriptelene I just stopped so now I on nothing and have slept three nights lol
I have suffered with R L S for years . I'm 77 and recently had to have a below the knee amputation.. Between the R L S and phantom pain I was in misery. My rheumatologist told me that an iron deficiency has been associated with R L S so my levels were checked and were low. I had 2 infusions of iron and can say it has helped. I am also on 50 mg of tramadol for the phantom pain.it's definitely worth asking your doctor to check your iron levels.
I have said this several times here but always feel obligated to repeat when I hear someone suffering from severe RLS: powdered magnesium citrate has been an effective remedy for my RLS. If I wake up during the night with RLS I immediately get up and put a teaspoon of the magnesium in a small glass of water and stir. I drink it down and then go back to bed. I'd say 80% of the time my RLS completely subsides within 5 minutes. The other 20% of the time it lingers but at a much reduced intensity.
I have been using the magnesium citrate for at least two years now with no reduction in its efficacy. I suffered from severe RLS prior to using the magnesium. In the beginning I took the magnesium nightly before bed. Eventually I forgot to take it on occasion and didn't suffer from RLS. I then starting using it on a "as needed basis" as explained above.
My RLS seems to have a stomach connection (i.e. worse if I overeat, have sugary foods, wine etc..) and I realize everyone's condition is likely different. Just in case you haven't tried powdered magnesium citrate I think it is certainly worth a try. By the way, I take no prescription medication for my RLS. Best of luck. JP
Have you tried codeine syrup? For 300 years that has been the most effective treatment for RLS according to the Mayo Clinic website. The key is to take only once per day just before bedtime. Start with 16 mg and over a month or two you will probably have to increase to 24 mg. The first night it will not be perfect since there seems to be some carryover effect. Once 24 mg stops working go off the drug for ten days. Then 16 mg will start working again. Never ever take it more than once per day and never take more than 24 mg.
I have had RLS for year nothing help then I went to see a neurologist the best thing I done she put me on pregabalin 75 mg one at 6 PM and one at 9 pm very good the. Best nights sleep I have had for years 241241 Henshaw
Everybody! Please try taking an iron pill every day! I had RLS very severe for years, I take .0125 Pramapexole (had to go off of Ropinerol) 4 x day. But the iron supplement has finally taken this down to a mild case. It may take a couple of weeks to get in your system, but it has helped me tremendously!
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Cheers
RLS Ruining my life 
Another rls night 
problems with Gabapentin 
Finally off ropinorole!
