Clonazepam : Hi all, I have been... - Restless Legs Syn...

Restless Legs Syndrome

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Clonazepam

wantmysleep profile image
14 Replies

Hi all, I have been following this group for quite some time now and I am so grateful to learn the information shared here. I have rls since I was very small and I am 63 now. The last few years, the condition has become unbearable, I was prescribed 0.25 mg ropinirole few years ago. After what I read here, I decided to stop tanking 3 months ago because my condition was definitely getting worse. Without medication, my rls attack usually lasts from 10pm to 6 am and pretty bad. My GP referred me to a neurologist and I was prescribed 0.5 clonazepam. I find that clonazepam does not relieve much of the attack, although I do get a couple of hrs of sleep.i searched for clonazepam here, but there is very little about clonazepam mentioned here recently. Any advice on taking clonazepam would be much appreciated. It's almost 2am and I am walking around in my bedroom!

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14 Replies
martino profile image
martino

I take 1mg of clonazepam a night. I think it helps me sleep although I take 900mg of Gabapentin as well. I was on as much as 4mg of clonazepam but my neurologist was aghast. He wanted me down to 0.5 titrating by 0.25 a week but down around the 1.5 mark I found the increase in pain made a further reduction hard. Over time I got to 1.0. Recently I had to come off it for a sleep study but the same day as I had the sleep study I went back on it again

Bajatom profile image
Bajatom

I took clonazepam for many years for RLS but never more than 0.25 mg 2-3 times a week since it is habit forming. However, a neurologist took me off of it because of concerns it may be a risk factor for dementia/Alzheimer's, and switched me to 600 mg gabapentin. Be sure to stop all triggers--alcohol, caffeine, certain medications, probably sugar and salt, junk food, and exercise daily, stretch calves before bed.

Bajatom profile image
Bajatom in reply to Bajatom

Short acting benzos may have less long term memory problems. Ask doc about temazepam, oxazepam, etc.

Joolsg profile image
Joolsg

I was also prescribed clonazepam by my MS neurologist. He said it would help my RLS. It did absolutely nothing.

Have you had your serum ferritin levels checked? It needs to be 100 or above for RLS. If below, iron supplementation may improve the RLS. Are you taking any meds which exacerbate RLS, like anti histamines/ anti depressants?

If your iron levels are fine & you're not on other meds which worsen the condition, then you should try another med. Pregabalin or gababentin work well for a lot of people or an opioid like tramadol or codeine or oxycontin.

Everyone is different and it is trial and error to find the meds which work for you. Go back to your GP and discuss the options. It's clear clonazepam is not the drug for you.

Good luck,

Jools

Nightingale-5 profile image
Nightingale-5 in reply to Joolsg

I have just had my first Ferratin infusion, with one to go. At the moment I am on 2mg of Clonazepam and 6 mg of Ropinerole, clearly this cannot go on for long so I am really hoping these infusions work. I have been down the Gabapentin route and put three stones on and I already take Tramadol for a Spinal condition.

ladybirdjan15 profile image
ladybirdjan15

Hi I also take Ropinerole .25mg and Clonazepan. I found Clonazepan on it's own does not work for me but when I take 1 of each I hardly feel my RLS but I cannot cope with the side effects! Over the counter does nothing for me either!

Pampinky profile image
Pampinky

I also have rsl. I'm 54 and have suffered many years. I have been on all the meds too. Right now what is working like a charm is the Neupro patch. One patch a day

No side effects for me

This had truly saved me

Check them out. I take the 3 mg.

RupertMac profile image
RupertMac

Hi there

I have tried the usual concoctions over the years and my current regime of 0.5 clonazepam + 300mg gabapentin has worked better than any. I used to have to get up 3-4 nights per week, but I have only had it 3-4 times in the last 6 months which is a pretty stark improvement.

I always take it before going to bed and read for 20 mins which means I am drowsy enough to drop off. I think a big part of it is knowing I will get to sleep before the RLS. I also have PLMS and my wife says I still twitch when I'm sleeping.

I am also exercising more and have lost weight (helped by no ore night time eating, I tend to get up and binge. Hard to know what specific factor is working at the moment - so much of this is trial and error.

Good luck

hudson48 profile image
hudson48

That was me last night too and with muggy weather it's almost unbearable I am so tierd by it all I am now try magnesium spray on legs hour before bed can't take tablets of magnesium made me ill I get very low in mood

Roseyuk profile image
Roseyuk

Clonazepam .Or any of the same family of meds .

Do not stop pain or restless leg syndrome..

They are purely an anti anxiety medication..

I have taken Diazapam..Myself for years.

And those are the facts ..

That also very addictive.

Bajatom profile image
Bajatom in reply to Roseyuk

And may be an Alzheimer's risk factors according to a paper at their website.

Nightingale-5 profile image
Nightingale-5

I also take Ropinerole and Clonazepam but the Clonazepam is for REM behaviour disorder not RLS. I take 6mg a day of Ropinerole, over the recommended dose but prescribed by Consultant. I am also ,63. My Consultant has become aware that there might be a link between RLS and low ferratin levels in the blood. On Friday I had a Ferratin infusion and I am due another on Wednesday. If this works I might be able to cut right back Monday the Ropinerole.

wantmysleep profile image
wantmysleep

Thank you all for the posts. Really appreciate them.

My ferratin level is over 500 (possibly as a thalassemia carrier) , so I have to avoid high iron content food even though my haemoglobin level is on the low side.

I have stopped all tea, coffee alcohol, eating out is rare too nowadays!!

I am a keen golfer, but I am losing coordination and feeling lethargic with these drugs plus many other side effects. My golf has been really bad.

I can't remember when was the last night I haven't had a serious attack. Bedtime has become a nightmare. I agree it looks that clonazepam does not work for me!!

It's 2 weeks since I am on clonazepam, I will give it one more night, my neurologist says go back to see him in 6 weeks, I can't wait for 6 weeks,

I wish all of you a good night sleep.

Arjiji profile image
Arjiji

I have been taking Clonazepan for many years and it has been very good for me to control leg movements and sleep. The problem is that it is a Benzodiazepine and they have the problems that every so often the dose must be increased (tolerance) and in the long term they cause dependence. At high doses BDZs cause memory troubles and other problems.I started with 0.25 mg, just once and before going to bed, I had to go up over 2 years until I reached 2 mg per night. And I left it there because I saw that I was losing a lot of memory.

Rest for years putting Rotigotine patches (for three years until I reached 4 mg), I also stopped with a little effort and replacing it with exercise, stretching and taking Trazodone to sleep (100 mg). Now I go back to taking Clonazepan in very small doses (0.25 mg) adding it to 0.50 of Trazodone and I sleep well. Every 4-5 days I don't take anything to sleep and I sleep badly, but my body rests and cleans itself of drugs

The important is

(1) Not being on the same medication for a long time, you have to change it from time to time.

(2) Do not get to take high doses of any of them.

(3) Have the next replacement medication planned for when the current one approaches a high dose. This is important because this way we will not have anticipatory anxiety of the suffering that we will have when we stop the current medication and we do not have a replacement.

I hope this information helps you.

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