Clonazepam fixed my rls problem

[northof50]

I have had rls problems for about a year now, and a few times my legs were kicking so bad it threw me right out of bed on to a hardwood floor! I actually had 2 get a ct scan one time as my head hitting the floor almost knocked me out.So I asked my dr. about longterm use of clonazepam as I already suffer from p.t.s.d. anxiety problems, and now I sleep great at night and no more rls,and in the morning my mattress hasn't moved at all from all that kicking motions, finally!

[Nikwat]

Best of luck and glad you have found some relief. Its wonderful to get relief especially when it is so severe. Please just be careful when using clonazapm, particularly with regards to mental health issues. When i was first diagnosed I was put on clonazapam and I thought it was a miracle med. It calmed my legs and let me sleep. Over time though, I built a tolerance and strangely found my anxiety levels starting to increase. Up went the dose, up went the symptoms and up went the anxiety. Over an over. Then things went very bad mentally. A side effect of clonazapam that i was never told about is depression - especially if u are susceptible to other mental health issues (although I believe all of us with this disorder inevitably suffer mentally due to sleep deprivation). It can be a wonderful medication for a while but if you find you are needing more or your mental health is changing please take this seriously. In the mean time enjoy your sleep. It is so wonderful to get some when you can!!

[northof50 in reply to Nikwat]

Thanks for the warning about depression from clonazepam, yet I already take a strong med for depression called cymbalta. I advise anyone not to ever try that drug, lots of side effects and very hard to stop taking it!

[Hidden in reply to northof50]

As Nikwat rightly says be very careful with clonazepam. As well as side effects it also has a high risk of addiction and isn't really recommended for long term use. Don't exceed the prescribed dose and if it should stop working, do not increase the dose.

I'm glad it does work for your RLS but it isn't normally prescribed for RLS as there are other medications that are more effective. Clonazepam is usually prescribed for the insomnia that sometimes accompanies RLS.

I don't know if you're actually awake, when your legs kick, but if not, then this sounds more like PLMD.

Cymbalta is not recommended for someone with RLS as it's known to make RLS. In some cases this can be significantly worse. Unfortunately this is true for most antidepressants.

If you were taking cymbalta before your RLS became so severe you felt you needed medication, then it may explain why your symptoms became so severe.

There are many other medications that make RLS worse and other aggravating factors invluding various dietary elements, including added sugar, simple sugars and alcohol.

In addition, there are several mineral and vitamin deficiencies, which if corrected can improve RLS symptoms. The most significant of these is iron. Iron deficiency is the first thing that should be considered when starting RLS treatment and perhaps, really, iron supplementation should be started routinely.

Hopefully, you have no other health conditions that might be causing your RLS symptoms or making them worse. As part of the diagnostic process, it is an important criteria that all other possible explanations for your symptoms are eliminated.

[northof50 in reply to Hidden]

Thanks for all the info you gave me, and yes had my iron checked out ok.I already know its the Cymbalta that has caused the rls.As well it has weakened my hearing, caused rapid onset of cataracts and I just turned 60, but the problem Is its allmost impossible to quit the drug, even a slow taper can drive you insane, its a very dangerous drug that should not be prescribed!

[Hidden in reply to northof50]

I'm always a bit suspicious when someone's says their iron "checked out OK".

It can be the case that a doctor has ordered some blood tests and on getting the results has told you that they are "OK" or that they are "normal".

Since most people find their doctors aren't particularly knowledgeable about RLS. Iron deficiency can still be a major factor in RLS even if iron levels are considered "normal".

You need to know the actual results numbers, particularly your ferritin level. If this is below 100ug/L then it's too low for someone with RLS.

As regards the duloxetine, I'm sorry you're having problems weaning off it. It can be very difficult and you may need professional help with this, (probably NOT the person who prescribed it you in the first place).

[northof50 in reply to Hidden]

Thanks again for the info! And yes your right, I cant even mention to my dr. that I want off cymbalta, in fact she will actually want to up my dose.She says dont believe all the horror stories about cymbalta! All canadian doctors are the same, they are pushing antidepressants like candy, and taking everyone off painkillers thanks to the fentanyl crisis.They are even taking seniors off them and telling them to start smoking pot for pain control.As for my iron levels they just told me your fine, your in the middle range?

[Hidden in reply to northof50]

The situation in the UK is similar. Doctors resort to the long term prescribing of antidepressants because of the lack of adequate mental health services which have been chronically underfunded.

Funding was being increased, then along came covid 19!

Some areas have an IAPT service (Immediate Access to Psychological Therapy), but I'm not sure how effective this is as the "therapists" appear to be underqualified.

Official guidance here is that opiates can no longer be prescribed for chronic pain and this is partly because of the "opiate crisis" but otherwise there is some justification for reserving opiate use for acute and terminal pain.

Unfortunately, low dose opiate use for RLS seems to have got lost somewhere.

[Micafe]

For some reason doctors are very reluctant to prescribe Clonazepam anymore. At least where I live.

[Hidden in reply to Micafe]

It's possibly because there is a high risk of addiction with clonazepam. In addition it's long lasting, half life of 30 - 40 hours, so can cause excessive drowsiness.

In addition it can cause respiratory depression.

[Micafe]

It seems that what you have is Periodic Limb Movement Disorder PLMD. It is often linked with RLS but it's not the same. 👩

[wickedrls]

i've been on clonazapam for 30 years and at the time it was prescribed, it was the drug of choice to treat rls. I have reduced the dosage and am taking 5 mg but it's too late for me to try and get off of it. As for your legs kicking, I have the same situation and it is not PMLS but is a form of dyskenesia as a result of taking pramaprexole for 27 years.

[northof50 in reply to wickedrls]

Wow, thanks for the info on dyskinesia, I just read up on it and I think your right! I will let my dr. know, and I had an aunt and uncle who both had a tic disorder where their heads would slightly shake and it was like a form of parkinsons.I may have also gotten it from a med called abilify.At least clonazepam is really helping and I only take up to 1.5mg at night.

[Legsandmore]

So glad you have found something that works for you.

But as others have said, be careful with Clonazepam.

I was prescribed it for my RLS and was only on a small starting dose.

I started to experience random instances of what could only be described as suddenly falling over.

I did not black out, just really crumpled to the ground.

The first few times it happened, l simple presumed l had tripped.

But then l realised that something was wrong, as l would be perfectly fine on second and then find myself on all fours the next.

It turns out it was a very rare side effect of the Clonazepam.

Basically the drug momentarily switched off the signal from my brain, to my legs and they didn’t hold me up.

It’s unlikely to effect most users, but l thought it worth mentioning, just in case you ever experience it.

[Hidden]

I think it's unlikely that your symptoms are dyskinesia. Your symptoms certainly don't sound like it. In addition. since 80% of RLS sufferers have PLMD I'd say it is most likely that your kicking is PLMD. This may include both PLMS (PLMD when asleep) and PLMA (PLMD when awake).

Although PLMD has some differences to RLS, the causes are similar and the treatment is the same.

Some people with RLS also experience involuntary movements whilst awake and commonly refer to this as "twitching". I have experienced this myself. It can be quite violent kicking of the legs and threshing of arms and shoulder movements. It usually subsides with movement.

Dyskinesia is described as rapid blinking, waving of the arms or hands, sticking out the tongue, random movement of the lips, tongue, or jaw and swaying movements of the hips or torso in severe cases. Sometimes movement in the limbs, fingers, and toes.

Dyskinesia is caused by long term use of levodopa, used to treat parkinson's disease, (PD). There is also some evidence that long term use of a dopamine agonist (DA) can cause dyskinesia in people with PD. This however is different to RLS and I can see no evidence that long term use causes dyskinesia in people who do NOT have PD.

Tardive dyskinsesia occurs as a side effect of taking some anti-pyschotic drugs.

You don't mention taking any DA or having PD then even if they cause dyskinesia, they can't be causing it in your case.

The most common complication of taking a dopamine agonist such as pramipexole is augmentation. 60% of users get this after taking the drug for 8 years. This is a significant worsening of RLS symptoms including "twitching".

Polysomnography would be useful as this could confirm PLMD and also detect if you have sleep apnoea.

[northof50 in reply to Hidden]

Thanks for the info Manerva, and yes I think a sleep study is needed to confirm what the heck is going on.My dr. recently suggested it, but how can you fall asleep with all these wires attached, lol..I guess I can try it but think I will not be able to fall asleep...

[Hidden in reply to northof50]

I'm sure they have ways of dealing with that.

[TeddiJ in reply to Hidden]

Minerva-would you rather be on pramipexole or ropnirole? I know-they are both the devil, but if you had to choose...? I have taken both over the years. Trying to get off of .125 pramipexole now, as I have mentioned before. But I could switch back, if ROP is even slightly better-ish.

Also-I have been wanting to ask you about Gabapentin. I am taking it along with the PRAM. It does seem to help. But, is it just another drug with poor long-term consequences? Is the goal to take only Gaba? I can't seem to really get below the one pill of PRAM at .125.

I still have many rough nights and sometimes take another tiny piece of a second PRAM pill to get through.

Thank you for your expertise, per usual!!

[Hidden in reply to TeddiJ]

I'd rather not take any dopamine agomist, pramipexole, ropoinirole or rotigitone ever again. I took me ten months to stop pramipexole and I've only been taking gabapentin since.

Gabapentin doesn't suit everybody, neither do the dopamine agonists. Gabapentin isn't without side effects, neither are the dopamine agonists. Gabapentin doesn't cause augmentation, dopamine agonists do.

Gabapentin (and pregabalin) cause some visual loss in a few people and respiratory distress in a few people (with a pre-existing risk).

You have to balance the risks of a medication against its benefits and at the moment, I'm not having any of the problems I had with pramipexole.

I was taking gabapentin before I started reduing pramipexole. I was told it wouldn't help, but I think it did really. I do think though. that you have to be taking a sufficient dose i.e. at least 900mg.

I appreciste it may be very difficult to get through withdrawal and some people find a sleeping aid (like clonazepam) and/or an opiate (if you can get a pescription) can help. If not co-codamol.

However, I believe the best thing to do is to reduce the dose consistently and slowly, i.e. once you have reduced the dose STAY reduced, taking another tiny piece is probabaly just prolonging it.

Try cutting the 0.125 tabs in quarters and reduce the dose by a quarter of a tab every 4 weeks or so. Yiou really need to give the withdrawals to subside at each step.

[BENGAL1000 in reply to Hidden]

May I ask how long you were taking pramipexole before augmentation

[Hidden in reply to BENGAL1000]

About 6 years.

[BENGAL1000 in reply to Hidden]

So I guess I would be considered to be one of the lucky ones. I have been taking sifrol for well over 12 years now, and I am still 100% free of all RLS symptoms. Maybe, just maybe, the dreaded augmentation might indeed just bypass me. One must persist with ones optimism, albeit considered to be flying blind.

[Hidden in reply to BENGAL1000]

Great that Sifrol has worked for you for so long.

In which case there's no need to change anything. I would suggest it might actually be best for you to continue.

The probability is that 60% of people taking pramipexole will suffer augmentation within 8 to 10 years.

Clearly that means that 40% don't. You are lucky.

For those that have suffered augmentation it has a significant negative impact on quaility of life, depression, suicide, general ill health, inability to work etc, so isn't something to be ignored

The odds of suffering augmentation are high and there's no predicting who will suffer and who will not. In addition some people suffer it within months.

Add in the factor that augmentaion requires withdrawal from the drug which in itself is very difficult and for some, impossible because of DAWS.

For this reason major RLS organisations in international corroboration recommend that dopamine agonists are NOT the first medication to be used for RLS especially as alternatives are available.

For these reasons if anyone taking pramipexole or any other dopamine agonist has been taking it for many years, it still works and doesn't cause augmentation, this is marvellous.

However, for somebody newly diagnosed with RLS and being prescribed a medication for the first time, taking into account all factors, a dopamine agonist is the least recommended option.

If it's thought in some cases that a dopamine agonist is a better option then rotigotine, rather than pramipexole, has the least risk of complications .

[TeddiJ in reply to Hidden]

Thank you SO VERY MUCH for the info! I am just trying to figure it all out with the help of good people like you on this forum. I wish I had never started the ROP and then the PRAM. My Mom had a ROP prescription years ago, and, at the time, it seemed like such easy relief. If only I had known what I know now and worked on my ferritin level first...what a mess I have created for myself.

Today I found an old blood test done in the late 80's and I see that my ferritin was only 24.

You are right-as I reach for another pill in the middle of the night, to take just a tiny bit more, I know it is absolutely the wrong thing to do.

I hope that the Gabapentin doesn't do any real damage. 4 years ago when a neurologist put me on it, I hated it and noticed all sorts of weird eye issues and headaches, even on a low dose. I stopped it immediately and continued on my messy path of ROP, then PRAM, then toggling between the two, and now just PRAM.

This time around, at 900 mg of GABA, I don't notice the eye issues and headaches and it does help me get through the night. I don't know if that means the damage is already done or what. Sigh.

Thank you and good luck to All!

[Joner]

This is the first time I've heard someone say that clonazepam stopped their RLS.

I've had RLS for years and just recently it's 99% cured. I had no idea

that the Clonazepam had anything to do with helping to get rid of this terrible disease. Well I've been taking Cpam

forever, for sleep. I finally can put two and two together and understand why I don't

have the symptoms anymore. Thank Goodness!!!

I've been taking Maripex

to elevate the RLS.

This is a whole other story. I won't go into this one. Other then the fact

that I'm now a compulsive gambler.

[Hidden in reply to Joner]

Sorry to say, although clonazepam is thought ot help with sleep problems associated wirth RLS it isn't generally acceoted as an effective treatment for RLS. It isn't recommended for the treatment of RLS.

The three main classes of medicines recommended for RLS include dopamine agonists (DAs) alpha 2 delta ligands (A2Ds) and opiates. The DAs and A2Ds are known to correct some of the factors contributing to RLS, i.e.dopamine dysfunction of excess glutamate. Benzodiazepines do not do this.

Cpam isn't recommended for long term use and has long term consequences.

If it's working for you that's fine, but if it should start to fail you'll have to consider that.

Assuming you're referring to Mirapex, i.e. pramipexole, to alleviate your RLS. After time this can start to make RLS worse, rather than better if you've recently stopped taking this and have got over any withdrawal effects, this might explain why your RLS has improved.

As you've realised taking Mirapex can cause an Impulse Control Disorder e.g. gambling and I hope this has now improved along with your RLS symptoms.

[BENGAL1000 in reply to Joner]

Sorry to hear about the gambling. I know exactly what you're talking about. I've learnt to control the other side effects but I can't control the Impulse Control Disorder. So I no longer paint, any type of craft, sew, knit, writing, garden, do anything because I know I can't stop. But I can live with all that .... What I can't live with is RLS. And now I don't have to.