RLS and Clonazepam

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Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

RLS and Clonazepam

Post by Orrel »

I have been off a DA for fifteen days and am not seeing any noticeable improvement.
The only drug I am taking to cover this withdrawal period is clonazepam. I am
experiencing some daytime breakthroughs which is unusual for me. Dr. B on pp.138-139
of his book suggests that the benzo class of sedative hypnotics may worsen RLS. He says
that they should be used with caution especially during the daytime. He states that
long-acting benzos like clonazepam may cause drowsiness which could be counterproductive
for treating RLS. I am wondering whether that is the cause of my daytime breakthroughs
and whether anyone else has noticed this.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS and Clonazepam

Post by ViewsAskew »

Orrel, I don't think they actually cause more symptoms. What they do is knock you out so that you're not aware of your symptoms. You likely still are dealing with residual augmentation - according to Earley, that could take months to completely abate.

From my conversations with Dr B, if I understand him correctly, he doesn't like benzos because for some of us the symptoms are still too strong to be covered. When that happens, it's as if we're drunk, wandering around, trying to move to reduce symptoms, but we're not mentally functional. That has indeed happened to me - and it's quite scary! I have read that a many elderly break hips under such conditions - not a good thing at all.

I reread those pages of the book by Lee, Buchfuher, et.al. They write: " However few have been noted to exacerbate RLS at any significant frequency." So, I don't think it's likely the benzo is making the symptoms worse in the afternoon. In another month, maybe the story will be different.

I believe that it took a full year for my symptoms to level off completely after severe augmentation (18 months at about 400% increase from starting dose).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: RLS and Clonazepam

Post by Orrel »

Views: What prompted my posting was the fact that the incidents I described happened twice this
morning between 9.30 and 10.30. Each time i was awakened from a deep sleep. Daytime RLS is rather
infrequent for me. I thought Dr. B's comments which specifically mentioned clonazepam might have been
the answer. I am getting rather discouraged that I am not seeing some positive results. Dr.E suggests that a 10-14
drug holiday should be beneficial. I have now gone 15 days and am still waiting. I am beginning to wonder
whether my dopamine receptors have been permanently messed up. Thank you for your help and support.
The fact that it took you a full year for your symptoms to level off completely gives me some hope for my situation.
I only took .50 mgs of pram and then the 2 mg patch which was supposed to take care of the augmentation
from the short-acting pram but obviously didn't.

ViewsAskew
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Re: RLS and Clonazepam

Post by ViewsAskew »

I doubt you're receptors are permanently damaged, though I suppose it's possible. You were awakened from sleep with symptoms - even if there were in the morning, that isn't that odd.

How are your symptoms during the day when you are awake?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: RLS and Clonazepam

Post by Orrel »

I hardly have any, which is a blessing. I understand that many people do.
It is this blessing that made me wonder what was going on this morning.

ViewsAskew
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Re: RLS and Clonazepam

Post by ViewsAskew »

My guess is that the benzo is slowly working out of your system, and no longer can help you/keep you asleep. Because you are asleep, the symptoms surface. Just a guess.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: RLS and Clonazepam

Post by Orrel »

I am wondering if anyone has gone through clonazepam withdrawal.
I seem to be over the worst of DA withdrawal. I am free of symptoms during the day (although this
was never a big problem). Lately, RLS symptoms have not been arriving until 11 p.m. and are less
in intensity. I seem to be more bothered by insomnia than by RLS. The only helping agent has been
clonazepam which I have been taking for about six weeks. As i want to discover what my baseline
RLS is and as i don't want to be hooked on benzos, I have been gradually reducing clonazepam.
The most I have ever taken is 1/2 of a .5 mg. pill at supper and a whole pill at 10.00 p.m. Now
I am down to 1/8 of a .5 mg. pill at supper and 3/4 of a .5 mg. pill at 10.00 p.m. I do the
reduction once a week. This coming Wednesday I plan on eliminating the supper pill and
then work on reducing the later pill by 1/8 each week. Does anyone have any comments
on this strategy? I have noticed that each time I do a reduction, the RLS is a little worse
for one night. Will it get even worse the more I reduce? I am doing all this to discover what
my RLS would be like untreated. I don't seem to do well on any of the prescription meds.
DA's are, of course, out of the question. Lyrica really scrambled my brain. Benzos have
tolerance and addiction issues. Opioids are hard to get in Canada and seem rather scary.
Untreated RLS may be intolerable but at least I would like to find out for myself and be
able to make an informed decision if I have to take something.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS and Clonazepam

Post by ViewsAskew »

What you're doing will like be perfect - you've not reacted too badly so far, and I think you would have if it were to be a problem.

50% of people who take benzos have NO symptoms when they stop them. The other 50% - it ranges from mild to severe. So, a slow taper is a great choice is you're in the mild to moderate range. If you happen to react severely, it's not. But, since you haven't reacted so far, my guess is that you won't experience a full-out withdrawal (vomiting, sweats, pain, etc). I had not extra RLS or WED symptoms when I tapered, but I was also taking methadone to cover the augmentation.

I was in the severe category. I took 1 mg for about 6 months for sleep. It took me at least 7 months, maybe longer, to reduce it slowly. When I went any faster, I was in full out withdrawal, like you see in the movies. I was shaving off parts of the pill and still getting sick - it was pretty crazy.

If you want a benzo and they work, try one with a much shorter life - Restoril in the US - can't think of the generic name - is one. And, then take a few days off every month.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
Posts: 430
Joined: Mon Jun 02, 2014 7:41 pm

Re: RLS and Clonazepam

Post by Frunobulax »

Orrel wrote:I am wondering if anyone has gone through clonazepam withdrawal.
[...]



I have. I was on Clonazepam for max. 1mg a day for maybe 3 weeks. Didn't really help with my RLS. My doctor claims that Clonazepam makes you sleep deeper, so you basically use your sleep time more efficiently. Couldn't find more than 2-3 hours sleep per night even if RLS symptoms were controlled, just couldn't fall asleep. Took me about 3-4 weeks until the effects were gone, the first week was really bad.

If you can find sleep while tapering Clonazepam, keep tapering. If you can't, I'd suggest to stop it cold turkey.

I'm not sure if you were suffering from DA withdrawal symptoms (DAWS) - there is a big difference between dopamine agonist withdrawal and augmentation. I had DAWS (stopped cold turkey from 1mg pramipexole a day) and suffered from a lot of symptoms - extreme mood swings, being hot or cold, constipation, complete lack of energy, blood pressure more than 25 points down from where I usually am, stuff like that. Took me about 3 weeks to get over the physical symptoms, mood swings lasted for almost a year, depressive phases are still not gone after 2 years.

Dopamine agonists are some crazy sh**. I can't believe that doctors still prescribe them as first line of treatment. Opioids are nowhere near as scary as dopamine agonists if you ask me.

Regards, Thomas

QyX

Re: RLS and Clonazepam

Post by QyX »

Frunobulax wrote:Dopamine agonists are some crazy sh**. I can't believe that doctors still prescribe them as first line of treatment. Opioids are nowhere near as scary as dopamine agonists if you ask me.

Regards, Thomas


Yes, this is my speech, too. I tried dopamine agonists over and over again and they caused big big trouble for me.

If you need long term, daily RLS treatment opioids are the drug of choice.

Opioids come with the problem of tolerance and many doctors are scared of prescribing higher doses but in my opinion this is still the best way to go.

Tolerance can be managed with opioid rotation and adding a 2nd drug like gabapentine to manage pain and keep opioid doses at a reasonable level.

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