Clonazepam helping anyone with RLS?

[Retiredlady]

prescribed .5 mg by sleep specialist.

Tried for 3 nights but RLS returns from 3am so no more sleep… exhausted EVERY day.. just drag myself thought the day until I have my .125mg sifrol at 6.30pm( it takes 3 hours to give relief!)

Over last 4 months I have gradually reduced down from .250mg.I am just about to give up and revert back to .250 as my body is screaming out for it!

My only relief is 3-4am when I take 30mg codeine but now I am concerned about the major interaction between codeine and Clonazepam

Soooo tired today I CANT function… this is NO way to live.

I am 73 years old.. very tempted to give in and let that evil drug sifrol win!

My iron levels r over 200.

Just weaned off 800 mg Gabapentin too.

I had high hopes that Clonazepam would help.. feel devastated it’s not!.

Would appreciate any advice please

[Hidden]

Have you tried gabapentin or pregabalin?Clonazepam can be helpful but it can cause daytime sedation, It also has a long half life meaning it can have a cumulative effect. It's not typically prescribed in the first instance.

I'm wondering why you're waking at 3am. Ordinarily benzodiazepines (eg clonazepam) help with sleep maintenance i.e. staying asleep.

Would codeine on its own work for you?

If so, in the meantime you could keep reducing Sifrol, add in the codeine and forget the clonazepam.

[Hidden in reply to Hidden]

Just noticed that you have tried gabapentin already.

[Retiredlady in reply to Hidden]

Yes ,I have been taking codeine at night to help as I wean off sifrol but unfortunately kept waking every few hours.My sleep specialist prescribed clonazepam but I am still not sleeping through the night and need codeine to get back to sleep once restless legs start( and they ALWAYS do !)

I can increase dose from .25 to .5mg but am very apprehensive to do so because of clonazepams long half life .Wondering if Diazepam or Oxazepam may be more suitable??

[Hidden in reply to Retiredlady]

I would caution care in taking benzodiazepines with opioids (i note you're already aware of the potentially problematic interactions). I think Jools is spot on in her most recent reply to you with respect to you experiencing classic withdrawal symptoms from Sifrol.

[SueJohnson]

If you weren't that tired before taking clonazepam, then that is the reason you are now. It has a half life of 40 hours so causes daytime sleepiness in many people. You are taking a low dose of codeine. - especially since you are weaning off sifrol. 30 mg is the usual starting dose. The usual effective dose is 60 - 180 mg. Why have you weaned off gabapentin?

[Retiredlady in reply to SueJohnson]

Hi Sue, thank you for responding to my desperate plea and always trying to helping us all.My sleep specialist has only prescribed clonazepam as a last resort .I have been pleading with him for months to give me a med to keep me asleep as I was exhausted every day from almost continual rls symptoms .

Sleep specialist advised I come off gabapentin as 800mg(2x400mgdoses) did nothing except cause weight gain and he suggests that I forget about coming completely off sifrol at the moment as I just can’t function without restorative sleep.

Sleep Specialist is telling me not to take any more than 45mg codeine over 24 hours but u r suggesting I need more.Also advised not to take clonazepam at same time as codeine.

I am 74yearsvold so does it really matter if I become addicted to codeine or clonazepam?My only wish is to be able to SLEEP so I can enjoy and cope each day.

Do u think Diazepam or even Oxazepam would be better( shorter half life and not as strong)?

[SueJohnson in reply to Retiredlady]

Ativan or Ambien are better for sleep with the appropriate half life so you shouldn't be sleepy the next day. Diazepam has a half-life of 48 hours. I agree, who cares if you get addicted if you need it. Taking a narcotic like codeine with another medicine that causes sleep can increase the effects which is why your doctor advised that, Ambien is not a benzodiazpine so would be better in that regard. I would suggest trying Ambien with your current codeine dose and seeing how that works. As far as the gabapentin, You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The beginning dose is usually 75 mg pregabalin. Start it 3 weeks before you are off sifrol although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin) daily." (800 mg of gabapentin is a low dose so it is no wonder it didn't help you)

[Retiredlady in reply to SueJohnson]

Took clonazepam again last night,slept from 12 to 4am.Tossed and turned with milder than normal rls symptoms but still unable to go back to sleep so got up at 5am…..now having my usual codeine, warm milk and biscuits with cheese.Will try to sleep soon sitting in a chair instead of lying flat in bed as this sometimes works!

Will take your advice and ask for Ambien( unfortunately can’t see my sleep specialist for another 4 weeks).I won’t take anymore Clonazepam as it really isn’t helping me.Decided to request Lyrica and then restart withdrawing from sifrol…been stuck on .125mg now for 4 months too scared to reduce any further!

Will increase my codeine as needed to help withdrawal symptoms

Does this sound like a reasonable plan ?

[SueJohnson in reply to Retiredlady]

Yep. Good luck. It is no fun but I am confident you will get through it.

[Retiredlady in reply to SueJohnson]

How much codeine can I safely take at once?

[SueJohnson in reply to Retiredlady]

60 to 180 mg is the usual effective dose.

[Retiredlady in reply to SueJohnson]

do you mean maximum is 180per day ?

[SueJohnson in reply to Retiredlady]

yes

[Joolsg]

Withdrawal from sifrol is BRUTAL and causes severe RLS and sleep deprivation and exhaustion.Your GP needs to realise how serious it is. Worse than from.heroin & crystal Meth for the majority.

You need an opioid to deal with the symptoms and you need decent replacement meds for when you're off sifrol.

Gabapentin and pregabalin are the usual next meds to try but you stopped Gabapentin. Why?

If your GP won't prescribe an opioid to help with withdrawal symptoms, can you get cannabis? Medical cannabis is available in most countries now, including the UK.

[Retiredlady in reply to Joolsg]

Hi Joolsg …..Have explained in my reply to Sue Johnson why I have came off Gabapentin.For the moment I have stopped trying coming off sifrol( down to .125mg) but it seems my body is screaming for more as I am not getting much relief.I do have codeine which helps but I am worried about taking it when I take my clonazepam at 9.30 each night.I take 30 mg codeine at about 3.30am and 15mg around 7am which helps me sleep until9am.Just soldier on throughout day as can’t nap because symptoms return with a vengeance every time I try to relax!

Tried cbd for 6 weeks.Unfortunately did NOT help with sleep or rls .Was then prescribed 10mgTHC to have with my cbd but u fortunately gave me heart palpitations so my heart specialist told me to stop.

[Joolsg in reply to Retiredlady]

You describe classic withdrawal symptoms from sifrol. It is very, very difficult to get through the last stage; more difficult than heroin withdrawal.That's why most people need to be on gabapentin while they're withdrawing BUT it doesn't help until about 3 weeks after the last sifrol. So when you say it did nothing, that's because the augmentation symptoms are too strong and 800mg is too low a dose.

I suggest you discuss again and consider restarting so that it's effective for when you stop sifrol. It starts to work about 3 weeks after the last dose of Sifrol.

Your sleep specialist can help by prescribing a low dose opioid to reduce the withdrawal symptoms and gabapentin for when you're off Sifrol. The codeine will help but you may need a stronger opioid like tramadol or oxycodone.

If the THC gave you heart palpitations, I understand why you stopped.

Once off Sifrol, that constant, intense RLS reduces. It's worth sticking to it.

[Retiredlady in reply to Joolsg]

Your last sentence has motivated me to keep trying as you imply’there’s light at the end of the tunnel’!My plan is described in my reply to Sue Johnson just now.

Thanks so much for all your and everyone else’s reassuring,informative posts.

[Retiredlady in reply to Joolsg]

u say I have classic withdrawal symptoms from sifrol but I have been on .125mg sifrol for 4 months now.I am too scared to wean off any further as my symptoms haven’t settled at all.

[Hidden]

Hi, Retiredlady. Clonazepam (Klonipin) was one of the many drugs that I tried over the years for RLS. In the case of clonazepam, my actual experience was in accord with the comments already made by Amrob, SueJohnson, and Jooslsg.

I make this somewhat superfluous reply simply to note the comments that I wrote on the spreadsheet of some of the many RLS medications that I took over the years. Though I did find that clonazepam did relieve my RLS discomfort, I nonetheless discontinued:

"Felt drugged throughout the day. Excess daytime sleepiness."

Be well.

[Retiredlady in reply to Hidden]

Yes,daytime symptoms and I only take 2.5mg.Specialist told me to increase dose to 5 mg but I don’t think I will!!

[Idaho777]

I started taking Clonazepam about 1 month ago and it has been a life saver. I am used to feeling sleepy in the day since I have brain cancer and epilepsy and was on 5 other anti epilepsy medications. In July of this year my neurologist weaned me off of phenobarbital and Dilantin at my request and his support after a successful brain surgery. We went a little too quickly and I developed rls and now I know what it feels like to be in your terrible camp.

I have noticed more daytime sleepiness so I am going to try .25 instead of .5. I was just so excited to get some sleep after trying all of the things that Sue the great and Cris suggested.

RLS has definitely brought me closer to the Lord!!

Get well!

[Retiredlady]

I wish you well in your recovery from surgery and glad clonazepam is working for you.

I was going to stop taking clonazepam after trying it for only 3 nights but your response has encouraged me to keep trialing it for a few weeks at least.

[Jackiepoo]

Based on your post, you don't have RLS, you have periodic limb movement disorder. RLS occurs day and night, while PLMD IS ONLY AT NIGHT.

First, go see a sleep doctor. They are commonly also a

PULMONOLOGIST or neurologist.

Second, you need a lab test named serum ferritin, because those with PLMD frequently have low or low normal levels. One week after being placed on ferrous sulfate my nighttime leg movements stopped completely. (My family doc did not understand the relationship between low normal levels and PLMD, or the need for iron supplements. ) I was on gabapentin and a CPAP machine for sleep apnea when I developed PLMD.

Part of the workup may be a sleep study, to check for other sleep disorders. Nowadays, it can be done at home as an initial test in many practices.

Also, do a term paper on PLMD, so you sound smart when you see the sleep doctor. Good luck.

[Hellouandme1996]

Im on clonazepam aswell i feel that it helps me most nights but i would say im up about 2/3 nights a week its exhausting would u agree