Restless leg syndrome : I have bad... - Restless Legs Syn...

Restless Legs Syndrome
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Restless leg syndrome

I have bad restless leg syndrome PLEASE can somebody help

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Hi, there’s lots of information and help to be found here but we need to know more about you and how you’re troubled.

Are you on any medication/treatment for restless legs or anything else at all?

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Hello just to second that.

If you give more detail of your actual symptoms and what seems to make them better or worse, then I'm sure people on this site can help

Have you definitely got RLS? have you been diagnosed by a doctor?

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My legs jump at night and I can't sit still and it makes me very agitated and then dont even get 5mnn sleep. I can't sit still and end up walikg around ALL night. I am currently on Oxpola which is quite expensive amd also doesn't seem to be working like it used to.

I've even asked my Dr to arrange to amputate my legs and I'm not joking I can't take it anymore.

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Brian, you’re advised not to put personal contact details on HU. You van edit your post and delete them. Safer for you.

We can contact you directly with the personal message option.

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Hello again.

It does sound as if you have RLS.

Oxpola, which is one of the many brand names for Pramipexole is a "Dopamine Agonist" (DA).

A DA is a recognised treatment for RLS and is usually very effective.

HOWEVER, when I say effective, this means when you first start to take it.

It has a habit of losing its effect and this depends on how long you've been taking it and what dose you're taking. So if you could say what dose you're taking that would help us identify what's happening.

It would also help if you would let us know if it suddenly stopped working or if it gradually stopped working and you increased the dose.

This is because one of the other major problems with Pramipexole (Oxpola), is a phenomenon known as "Augmentation".

This is where a drug instead of relieving RLS symptoms, starts to make them worse. A DA, such as Oxpola tends to be the usual cause of this.

You can find out more augmentation here

sleepreviewmag.com/2015/02/...

If this is what you're experiencing then there is hope for you. The solution to relieving augmentation is to reduce and stop taking the DA.

Unfortunately, that's not an easy thing to do and it would be best firstly to confirm that it is augmentation you're suffering from.

In the meantime, there is another class of drugs that can be used for RLS, known as "Alpha2delta ligands", e.g. Gabapentin or Pregabalin.

These can be taken at the same time as Pramipexole, which might provide some relief. Realistically not much if you have augmentation. Sometimes, a benzodiazepine such as Clonazepam can help sleep. You could discuss that with your doctor.

Also in the meantime, it would be good if you could tell us if you're taking any other medications, as some can make RLS worse.

Let us know and we can offer further information.

Later

I see that others have now responded with similar questions and information and it does seem as if you do have augmentation.

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Like you, my symptoms can be so bad I'll be up and walking around for 48hrs at times. Often can't sit, so can't read, watch TV, or even eat at the table. I cut up my food and eat it on the move! Ultimately I take a cocktail of drugs including Diazepam and Gabapentin plus one or two others, simply to render myself unconscious. Sometimes I pray I won't wake up. Anybody who hasn't experienced RLS can possibly understand the nightmare of this illness. Still looking for answers! Best of luck.

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Brian....Go to your doctor or neurologist!!!! Ask them about a possible Dopa/Gabapentin Regime.for your diagnosed RLS...My doctors, neurologists, at Kaiser recommended it for me and it works great.....I get a full night's sleep.....it seems to replace the apparent lack of Dopamine that I lose as I age...Go to your Doctor!!!!!

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Hi just to say, good advice i.e. go to a doctor. and a combination of DA and Gabaprentin can work, not necessarily very well if someone's suffering augmentation however.

RLS does get worse with age, that's true, but Idiopathic RLS is not an age related condition, it's a genetic one and some people start suffering at quite an early age. Also, unlike Parkinsons disease, RLS is NOT due to a lack of Dopamine. One of the factors leading to RLS symptoms is a lack of Dopamine receptor sites. Drugs which increase Dopamine levels therefore aren't particularly effective in treating RLS.

Dopamine "agonists" are because they help make the receptor sites work better.

It's not entirely quite so simple however, because there are other processes involved.

RLS however is not due to age or a lack of Dopamine.

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Hi Brian, it will get better.

I think everyone here knows how distressing it is before you receive help and all you want to do is sleep. So don't give up hope.

Could I suggest that if you have the means, find a private neurologist that specialises in RLS. You can be seen in a matter of days. They will prescribe you medication which your GP can then continue to issue and you can still see an NHS neurologist (request via your GP) but it means you will have at least be seen while you wait. Also, a letter from a private neurologist will result in your GP taking you seriously and referring you to a consultant or sleep clinic who can then continue to see you.

And read the advice on the RLS UK page as there is a lot of really good advice. I use biofreeze gel (it numbs the nerves) along with my meds. Perhaps give that a go, with some over the counter pain relief while you wait.

Good luck and it will improve.

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I'm interested in the gel.What is the make and where do you get it?Does it work without meds?x

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Hi Jumpey, good call on the iron levels.

The gel is called Biofreeze. I get mine from Amazon as I'm mostly housebound but I think you can get it in chemists. I use it in conjunction with my meds. It can really make a difference, and it certainly relieves the hot throbbing feeling even if it doesn't always stop the spasms. Anything is worth a go, right?

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Cheers. Absolutely right. I'll try anything to get a night's sleep. Xx

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Are you sure you have RLS, or not just RLS, hot throbby feeling relieved by a "freeze" gel doesn't sound like RLS.

Perhaps you have a circulatory problem as well. It might be worth having that investigated.

When you have RLS it's sometimes easy to believe that ALL your symptoms are due to RLS, when actually, they're not.

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Hi Manerva, yes it was diagnosed years ago by a neurologist and I'm now under a sleep clinic.

There are other complications that may cause throbbing, however, the gel still helps at times with the RLS. If I've taken my max dose of Gabapentin and codeine, and I've still got 100 volts of electricity shooting up my legs causing them to move, the freeze gel can help added into the mix. It's got to be worth a try.

Thanks for your help.

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Yes, you're right, if it helps then it's worth doing.

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Thanks so much will give it a try. I battle to sleep as it is and with the RLS males it even worse. I sleep about 2hrs a night

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There will be a drug or/and supplement out there that will help. Please see a specialist. Check your diet - keep a journal to find triggers. Mine are caffeine, alcohol, soya, liquorice, and heaps of other stuff. Keep posting how you get on.

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I don’t know what you’re going to try, Brian. It is sometimes hard to follow the order of posts. Never mind. Just want to give you a general reminder. Trials with diet, provided they are still healthy, you can do yourself without harm. For trials with supplement I would strongly recommend to have your blood levels if the various vitamins and minerals etc tested first, to make sure you’re unlikely to overdose. E.g. B6 is easily overdosed. And surely for (prescription) meds I would do nothing without consulting a/your medical doctor. They make mistakes too, for sure, or are insufficiently knowledgeable on your specific problem (RLS), but that can easily be counteracted and controlled by yourself by informing yourself thoroughly before you go see the doctor.

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Definitely get your iron level tested. A serum ferritin test is best.Ask for the results. You need to get your level up to around 100 if necessary taking iron supplements such as iron biglycinate.Gooduck.x

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I’ve just googled Oxpola, it’s pramipexole, a dopamine agonist drug.

Have you been taking it for a while/increased the dose? Dopamine agonist drugs are problematic for most people eventually, they can cause impulse control problems and can lead to something called “augmentation” This is when symptoms happen earlier in the day, in other body parts and increased night symptoms too.

There’s a pinned post about it, have a read.

If that’s the case for you, like lots of us on here you’ll need to wean off your medication and perhaps switch to gabapentin/pregabalin.

Read the information then go and discuss with your doctor. You won’t be able to just stop the pramipexole, it has to be gradual and you may need something else (a weak opioid) to help.

All the best

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You are right and it's now going into my arms so my whole body is now affected. I just can't take it anymore I really cant its making my life hell

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I know how grim that feels.

Start some iron, read the information and see your doctor (take some information with you, not all doctors have experience of treating RLS)

What dose are you currently taking?

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I'm currently on the strongest dose and last night took 2 tablets so now I'll be short for the month which scares me even more

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Don’t be tempted to do that again, hard as it is.

You’re going to need to decrease very slowly and you’ll find that eventually you’ll be back to the level of symptoms you had before starting treatment. In my case it felt a bit better as I had increased my ferritin (iron storage) levels.

I augmented on pramipexole, lots of us here have so we really do understand. I remember feeling very scared/weary/tearful....I’m on a low dose of gabapentin now, and I get enough sleep. You’ll find something that works, stick with it.

Can you make any changes to your daily life temporarily, flexible working, taking some time off to make weaning easier?

Keep us posted, we can help

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To be honest I don't switch off and I have tried it is very difficult. I own a Maxidor franchise and work as much as i can. I just can't stop thinking about work. I must admit I do drink alot of coffee which I will now stop and when I say alot of coffee I mean about 20 cups a day if not more

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That sounds unsustainable even without RLS!!

The caffeine may be a factor and is worth looking at, stress I believe is also a factor. An overactive mind and an inability to switch off is exhausting in itself. Have a look at an app called Headspace (there are plenty of others available) for mindfulness meditation.

Sounds like you need to invest some time in your greatest resource...yourself!!

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See if you can get the neupro patch it’s works for 24hr it’s been a miracle for me been on it for 10yrs it’s made in Europe

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What is “the strongest dose”? How much exactly. Because many doctors prescribe far higher doses than warranted for RLS. See the paper I sent you earlier (link).

If you reduce, go slowwwwww.

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Well spotted, lapsedrunner.

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Here’s the most recent official recommendation for first line treatment of RLS: sciencedirect.com/science/a...

Please print and read. Then take a copy to your gp and ask her/him to read it carefully and then discuss a course of action with you. If your gp is willing to listen, there may be no need for a specialist. Iron is definitely a first way to go.

And surely, check out the patient organisations’ websites: rls-ik.org (UK) and rls.org (USA). Also the RLS section of Johns Hopkins in USA has extremely useful information.

Get informed!

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PS Parminter is also in SA.

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Go to the rls foundation and find a specialist near you there are a lot of meds that help

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Brian lives in South Africa!

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Wow ok

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This site is UK based, but there's members from all over and they all have different names for Pramipexole!!!! :-)

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Gabepentin works a treat for me

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Hi Brian - my partner is a medical bio-chemical scientist. For me, he makes a liquid form of magnesium and a spray that has something called DMSO in it - it takes the magnesium through my skin. I see people here talk about taking magnesium by mouth but I've found this works well for me. I put it on my legs and feet before bed and usually have to get up to reapply it. It works! I'm going to tell folks here about it - I just read that a bath with Epsom Salts also takes the magnesium through the skin. Why not try it? Good luck :-)

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Thank you so so much

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Nothing will work if you have augmentation I am sorry I have been there. Please read follow Jools recommendations she knows her stuff. Best of luck

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Brian, everyone has given you the correct info to get off the pramipexole. The fact it’s moved to your arms & you are only getting 2 hours sleep means you have to get off the drug. It will only get worse.

I went through Augmentation in 2016 & withdrawal was hell on Earth- but it’s so much better once you’re off dopamine agonists.

It’ll take about 2-3 months to slowly reduce the dose and you’ll need strong painkillers like tramadol or OxyContin or codeine to get through the worst nights.

Inform your doctors because you’ll need support- the withdrawal can be worse than getting off heroin or crystal meth ( not sure where that information comes from!).

You’ll need to time 2 weeks off work for after you drop yhe the last dose because you won’t get any sleep and the RLS will become much worse as your body screams for its dopamine hit. Do not be tempted to take any more pramipexole as you will just prolong the agony.

Do not go on another dopamine agonist like the Neupro patch because you’ll just augment again quite quickly.

Pregabalin is now considered a better drug than pramipexole and you should start taking it 2-3 weeks before you drop the last dose of pramipexole, as it takes time to build up in your system. Avoid magnesium 2/3 hours either side of pregabalin as they interact.

As others have advised, get your serum ferritin above 100 and your serum iron above 60.

Reduce the caffeine slowly and check whether you’re taking any other meds which worsen RLS like anti histamines or anti depressants.

Many people have come on here in your situation and managed to get off dopamine agonists and their RLS is under control and life is better. Read all the links and educate yourself because most doctors and neurologists are not knowledgeable about RLS or the dangers of dopamine agonists.

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Hi Joolsg, I'm interested to hear that magnesium counteracts the effect of pramipexole, as I've recently started taking magnesium, often within 2/3 hours of taking pramipexole. Is this based on your personal experience or do you know of a link to further info about this?

I'm reducing my pramipexole at present, but sometimes it seems to have no effect at all, so

perhaps the magnesium is interfering. I'll experiment with changing the timings, but any further info would be very helpful.

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Not pramipexole. It interacts with pregabalin ( and other alpha2delta ligands like Gabapentin and Horizant).

It doesn’t affect dopamine agonists like pramipexole.

Magnesium can help RLS but if you’re reducing pramipexole you’ll see a worsening of your RLS with each reduction. That is normal. You may need a strong painkiller to help you through withdrawal as it can be really tough.

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My error- I should have written pregabalin. Too many meds beginning with P. Sorry about that.

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Many thanks, Joolsg. That's a relief as I can continue with the magnesium.

You're right - withdrawal is indeed tough and I'm having to take it more slowly than I planned. Am hoping see my GP tomorrow and will try to persuade him to prescribe me something to help me sleep. I've had no more than 2-4 hours sleep a night for months and no sleep at all on some nights. Am getting to the stage where I can't focus properly and take things in. Am encouraged, though by everyone on this forum who has got through it, as I know it's possible - so much useful advice and good tips.

Brian, whilst I'm pacing up and down at night in the UK I'll be thinking of you doing the same in South Africa. Good luck!

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Hi juweave

I got hold of some illegal cannabis through my adult children and it was a lifesaver- gave me an hour or more sleep during the worst nights when I didn’t think I’d make it through. I also took 50mg of tramadol every 4 hours during the last 10 days of withdrawal.

I eventually found that pregabalin ( up to 100mg) and OxyContin (25mg over 24 hours) gave me relief 85/90% of the time.

I think that’s the best we can hope for after dopamine agonists.

Good luck getting off the pramipexole. I think about all the people going through DA withdrawal every night and send positive thoughts your way.

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Listen to Jools she is giving you the best info for when augmenting.

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I take Requip and if taken before they start, it wards them off. I’ve been taken my them for several years and get relief, even though I have had to increase the dosage

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Requip is a dopamine agonist Dianacon. This is the group of drugs that Brian needs to wean himself off as he is experiencing augmentation. As you have had to increase your dose to get the same effect, I suspect you are on the same path.

I recommend that you don’t increase your dose any further and read the pinned post re augmentation and see if it rings any alarm bells for you.

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Hello Everyone supports each other here . Maybe make an appointment with your GP to see what he can recommend . People discuss their various medications with each other as well so maybe get some ideas about their medication & discuss it with them to see what is best for you in conjunction with having a discussion with your GP

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What has the doctor prescribed for your rls

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GOSH!

I'm sorry Brian, you're getting lots of responses, but some people are giving advice without reading what other people have written.

Some aren't giving very good advice.

Just focus on what Jools wrote! Jools is the best advice.

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Codine took it away completely for me, I suffered horrendously and diddnt sleep for about 6months tried everything and was prescribed codine for something else and it took my restless legs away it was a god send because as a dialysis patient I was unable to stay still on the machine for 4hours and I honestly thought I would die. Best of luck.

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