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Restless Legs Syndrome

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Buprenorphine and sleep

keiralee profile image
41 Replies

This is my second night on Buprenorphine 4mcg and my second night of no RLS and absolutely no sleep at all. It was as though I had drunk 20 cups of coffee !!. I was wide awake all night. So they are acting as a stimulant. Surely this can't be right. After months of no sleep and broken nights was so pleased to have this. medication. Has anyone else experienced this.

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keiralee
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41 Replies
SueJohnson profile image
SueJohnson

Unfortunately insomnia can be a side effect. Ask for a prescription for zopiclone.

Joolsg profile image
Joolsg

Many people develop opioid insomnia. It seems that opioids either make us drowsy OR alert.You can counter the 'alertness' with a small dose of pregabalin.

I developed opioid panic attacks and Dr Buchfuhrer answered my email and suggested pregabalin.

You can start with 25mg at night and add 25mg every 2 nights until you reach 75mg and take it for a few weeks to see if it helps.

In the UK, they won't give prescriptions for zolpidem or other sleeping pills for more than a month, so that might be difficult.

Alternatively, you could use medical cannabis as that definitely helps sleep. But it's only available Privately, so is expensive.

keiralee profile image
keiralee in reply toJoolsg

Thank you Joolsg, I cannot take gaba pregab or lyrica as it was known one time. These drugs made ne very ill about 6 years ago before I went back on Mirapexin. So, not what I wanted to hear plus the post just after mine says how on .2mg he fell asleep immediately. I took .4mg, I have got myself in such a state I was too afraid to take only .2mg.I need to pull myself together. I have let myself get into a state. So not like me.

Thank you for taking the time to reply as you always do.

LotteM profile image
LotteM in reply tokeiralee

Good point to try to take only 0.2mg tonight and see how that goes. The buprenorphine sublingual works quite fast, thus if the 0.2mg proves insufficient for your RLS, you can add the other 0.2mg. Or even 0.1mg, if you succeed in breaking the pills in quarters.

As to your earlier experience with the pregabalin and gabapentin, did you start taking them after stopping the mirapexin relatively abruptly? If so, how you felt may well have been a result of mirapexin withdrawal rather than from the pregabalin or gabapentin. If so, you could reconsider. And if you do, make sure you start slowly, that is with the lowest dose. If one builds up medicine doses slowly, it lowers the chance of (strong) side effects as it gives your body a bit more time to adapt.

keiralee profile image
keiralee in reply toLotteM

Yes thank you will try the lesser dose.

Anthas profile image
Anthas in reply tokeiralee

Hi! Just want to clarify I did not fall sleep immediately. In fact, i may have had a little bit of insomnia, i felt awake but my RLS was dead. I also woke up a couple of times more with no RLS.

Have you tried cutting the pill in half? It may still kill your RLS but give way less side effects..

keiralee profile image
keiralee in reply toAnthas

Thank you Anthas for replying

Anthas profile image
Anthas in reply tokeiralee

No problem. At what dose did you start? Is it possible that you started at a dose that was too high?

keiralee profile image
keiralee in reply toAnthas

O.4mcg but will try o.2 tonight as suggested. Thank you Anthas

ziggypiggy profile image
ziggypiggy

No joke. Opiods hop me up. Work so well for RLS though. Tried everything under the sun to counteract this side effect. Nothing takes. Eventually after a few days of little sleep i can get a solid 7 hours with the help of a combination of sleep aids. But the cycle starts again. I've tried lowering the dose of my opiod and have added 1200mg of gabapentin to try and supplement. RLS returns. Apparently I'm just to sensitive to opiods in that way. So I live with the trade off of little sleep without RLS vs little sleep with it. Also, be prepared once you start adding sleep aid medications for grogginess and hang over type symptoms may crop up.

amrob123 profile image
amrob123

Can't comment on buprenorphine as only took it once, but all other opioids i've tried have given me serious insomnia. Tramadol was the worst. I actually got zero sleep all night on that.

This is one of the main reasons i can't take opoids.

Even when combined with 300mg pregabalin (as i was taking then), i still experienced this effect.

Simkin profile image
Simkin

Buprenorphine is bliss as no rls & I go to sleep immediately but wake 1 to 2 hrs later as bright as a button so I get up & do emails etc then.I do drop off after one hour but then wake every 2 hours so I have a sleep in the afternoons.

I just put weight loss & sleep deprivation as 2 side effects of Buprenorphine that, in my 70s, I put up with just because life is such heaven with no rls.

keiralee profile image
keiralee in reply toSimkin

Reading your post has made me feel bTetter about things. I am in my late 70s and you are so right, it is absolute heaven not to have RLS. It has ruled my life for years.

I will try the lower dose again and will just have to think about how to cope with the insomnia.

Thank you Simkin

Simkin profile image
Simkin in reply tokeiralee

Am glad I have helped Keiralee. That is the great thing about this forum.We all understand & it is SO helpful to compare notes with fellow sufferers.

Drls profile image
Drls

hello keiralee since buorenirphine can also cause anxiety and panic that could be why you ‘ got into a state’ - as people have said try half a dose. I have been following your journey on here and you’ve really been up against it ….. I really hope the smaller dose works for you …

I take it the bup patches didn’t work? I seem to remember you tried them, If they worked to some extent but didn’t give you insomnia you might want to go back on them … I think it’s all about compromise - unfortunately many of us don’t find something that gives us zero rls without unbearable side effects

Anyway good luck

keiralee profile image
keiralee in reply toDrls

Thank you Dris. I tried half a dose last night and woke at 2.30 with the dreaded RLS.I will try again tonight.

The patches were very disappointing even on the highr dose so I will have to stick with the pills.

Simkin sums it up really, I am in my late 70s and to not have RLS is absolute heaven.

Thank you for your best wishes.

dickJones profile image
dickJones

As Sue Johnson says, ask for a course of Zopiclone. Because Zopiclone can creat dependency and/or lose its efficacy, I alternate Zopiclone with Zolpidem and Melatonin, thus avoiding too long a usage of either Z-med. Melatonin can aggravate RLS so it may not work for you. It's fine for me and as an over-the-counter med it's a useful cushion between the other two. But alternating the Z-meds at least may find favour with a tolerant and flexible doc.

davchar23 profile image
davchar23

Dear Keiralee,

I know it is hard but I have been using buprenorphine for about 7/8 months and have used both patches and pills. As we all know buprenorphine is wonderful as a barrier to RLS but to achieve a compromise against the side effects (ie insomnia, nausea, constipation and anxiety) and getting the right balance of medications is a long process. I am still trying to sort mine!

I use a 15mch/hr patch which give a steady level of drug in the system whilst even splitting tablets cannot give to the same degree. i believe it is this constant even "drip" feed of buprenorphine into the system which helps with better sleep. The problem of course with patches is their time effectivity but if my patch seems to be losing its effectiveness before its weekly date i use a 100mcg of tablet to stop RLS breakthrough. I also as recommended by Joolsg take pregabalin (25mg /day0 to try reduce anxiety

Good luck

Davchar

HipHop1972 profile image
HipHop1972

Hi keiralee. I started on 5 micro gram / hour 7 day Buprenorphine patches and they didn’t stop my RLS. After 4 weeks my specialist at my request increased the dosage, I asked for 7.5 micro g being the next level but he provided me with a prescription for 10 micro g and they worked extremely well, absolutely no RLS and sleep through the night. It’s very strange that your RLS has gone but that you find Buprenorphine acting as a stimulant. This is contrary to anything I’ve read about morphine based medicine which usually have an opposite effect. Are you taking any other medications that could be affecting the Buprenorphine. I have had to completely give up alcohol as it’s effects combined with Buprenorphine can be hazardous or so I’ve read.

I hope you start to sleep as well as continue to get relief from RLS. HipHop1972

Birdland profile image
Birdland

Just offering my experience. . . I have tried every opioid offered and haven’t been able to tolerate any of them. Mostly due to extreme nausea that only gets worse over time. But also due to insomnia (zero sleep) with all except methadone. I can only take the methadone occasionally because of my intolerance to opioids but when I do take it I don’t experience insomnia.

Claire_lc profile image
Claire_lc

Hi Keiralee, I started on 0.4mg Buprenorphine in April this year. Like you it stopped the RLS dead, however I decided to see what happened if I dropped to 0.2mg, and miraculously that worked perfectly too. No need to take more than you need, right! Occasionally the RLS breaks through in the night and I take an extra sliver - approx 0.1mg - which is always enough to stop the symptoms.

On to the insomnia… I'd suffered from terrible insomnia for years before getting my RLS under control, and my sleep specialist had agreed to let me have an ongoing prescription for 1mg clonazepam nightly. Until the Buprenorphine zapped the RLS, I'd kind of thought the two things were unrelated. But within two weeks of 0.2mg Buprenorphine daily, my sleep (after trying every technique and sleep hygiene advice in existence), started to stabilise, and I can now hardly believe that I'm sleeping 7-8 hours a night, with only the odd bad night.

My insomnia was so bad, there is a chapter about me in Prof Guy Leschziner's book The Nocturnal Brain, entitled 'Losing Sleep'. I honestly thought I was condemned to a lifetime of sleep deprivation, and the RLS just made it ten times worse.

So if, like me, you could manage on a teeny tiny dose of 0.2mg - 0.3mg Buprenorphine, I wonder whether you too might find your sleep starts to settle. Did you get any nausea? Like most people I was really sick for several days, but that went away as my body acclimatised, and now the only side effect I have is a slightly dry mouth.

I think basically you have to experiment with adding crumbs until you find a dose that agrees with you.

Give it a few weeks, but if the insomnia persists, Clonazepam could be helpful. I know it's addictive and evil (though you could say the same of Buprenorphine), but after resisting it for years, I finally relented and started taking it consistently in January. It has really helped and I don't feel more than a little sleepy the next day. For me it's a small price to pay.

My plan is to start reducing the Clonazepam, as per The Ashton Manual, in a few months' time, with the help of my neurologist (Dr Robin Fackrell in Bath). I originally obtained the Clonazepam prescription from Dr David O'Regan at Guy's Hospital/Sleep London. He is a lovely man and, like Prof Leschziner - has helped many insomniac patients come off Clonazepam (very very slowly). But both doctors told me that, with patients in their 70s and 80s, they really don't worry about addiction, so long as the side effects don't make you unsteady on your feet.

I hope some of this might be helpful. Give your body time and don't give up too quickly. 💛

amrob123 profile image
amrob123 in reply toClaire_lc

It's great that you have managed to get your RLS under control. Taking opioids and benzodiazepines such as clonazepam at the same time is generally contraindicated, because of the risk of respiratory depression. This risk increases with age.

Typicallygaslit profile image
Typicallygaslit

It’s not strange at all, I have that too. I published a post here a while ago about some research that suggests it does act like coffee by preventing adenosine from kicking in. Adenosine is a chemical that creates sleep pressure. Check it out on my profile. They recommended Zopiclone as an antidote. I find it’s the only common drug that helps though the sleep clinic wouldn’t have given me several drugs. Thankfully my GP is more liberal. I also use medical cannabis, THC, not CBD, but only occasionally as I don’t tolerate it well. On the nights I use it, I usually sleep like a log.

Marlayna67 profile image
Marlayna67 in reply toTypicallygaslit

My husband keeps mentioning that I should supplement the buprenorphine with gummies. Marijuana gives me anxiety so I've avoided it all my life, but he thinks if I take a sliver of a gummy, I might be able to take the buprenorphine to kill the RLS, and take the gummy to combat the insomnia. I've been nervous to try. I really don't like drugs at all, and here I am taking all this junk.

DesertOasis profile image
DesertOasis in reply toMarlayna67

Hi Marlayna, are you still on the HRT?

Marlayna67 profile image
Marlayna67 in reply toDesertOasis

yes i switched to something new. went off for the most part the rosuvastatin. I'm just tired of all the drugs. will see a new doc soon and try to get it all lined up.

DesertOasis profile image
DesertOasis in reply toMarlayna67

It could just be me, but I feel your RLS would be ever so mild if you went off the HRT. Just one week. No improvement, go right back on.

Marlayna67 profile image
Marlayna67 in reply toDesertOasis

Frankly, RLS isn’t even the biggest problem anymore. It’s the side effects from the drugs.

Typicallygaslit profile image
Typicallygaslit in reply toDesertOasis

I got off HRT myself but weaning off it was a hellish process actually, took me months. Not sure if it has helped. I’m also struggling with drug side effects.

DesertOasis profile image
DesertOasis in reply toTypicallygaslit

Hellish is a strong word. My understanding is discontinuing HRT = return of symptoms you went on HRT in the first place for - such as hot flashes and vaginal dryness. Was that your problem as you discontinued HRT?

Typicallygaslit profile image
Typicallygaslit in reply toDesertOasis

Waking up from a physiological experience of fright and being unable to get to sleep. Not hot flashes and dryness, no. I’m overly sensitive to both serotonin and dopamine agonists. I’m sorry if you don’t believe it was hellish but that is how it was anyhow as I already experience plenty of waking up as it is, for example due to RLS.

DesertOasis profile image
DesertOasis in reply toTypicallygaslit

Why did you go on HRT to begin with?

Typicallygaslit profile image
Typicallygaslit in reply toDesertOasis

Because I was feeling depressed, empty, and it seemed like a natural idea. I had night flashes. There wasn’t any expert to discuss it with. It seemed to work ok for a while as I felt quite uppity in some ways, but this was also when I began to have increasing issues with RLS, so it’s difficult to know whether it was due to the oestrogen. After some time it seemed to start to work against me in every way. I thought it safer to quit it but it proved very difficult as even at ridiculously low doses I had those frights. It’s been a couple of months off HRT and thankfully the frights are now gone. I’ll have to see over time if the RLS has gotten better or not but at the moment I’m stuck with all sorts of issues due to being on Buprenorphine including dreadful sweats around the clock (which, to be clear, I don’t attribute to menopause as it was never this bad). It’s a complicated situation since I need a lot of sleep.

DesertOasis profile image
DesertOasis in reply toTypicallygaslit

Don’t get angry, but of course your RLS worsened due to the HRT. It’s out of your system now. I would hope you would need very little to control your RLS at this point. The hot flashes will lessen over time I believe.

Typicallygaslit profile image
Typicallygaslit in reply toDesertOasis

Yes, I know it’s possible, which is the main reason I wanted to come off it, but my overall health condition is not that simple and sleep continues to be a hellish problem.

DesertOasis profile image
DesertOasis in reply toTypicallygaslit

I can tell you’re very knowledgeable, you will get a handle on it. Be well!

Typicallygaslit profile image
Typicallygaslit in reply toDesertOasis

Thank you, that’s kind of you. Alas, the more you know, the more you realise that you don’t know much, and more than anything, you can see just how complex things really are. But it’s a start, because none of us can change the complexity of life, so we have to accept that the only way forward is to just carry on looking and learning, and that we may even be dead before any of it really opens up to us. Oh well! Take care!

DesertOasis profile image
DesertOasis in reply toTypicallygaslit

Also, HRT, and hormones in general, keep our receptors in tip top shape. That’s why things go south after menopause. It’s impossible to recreate Mother Nature’s perfectly timed and pulsed nano size perfusion of hormones. Female hormones are dopamine antagonists that up-regulate our receptors. When done by nature it’s fine. When we with RLS take HRT it’s just too painful a process. Theoretically, your RLS should be significantly better.

Typicallygaslit profile image
Typicallygaslit in reply toMarlayna67

Most people like us don’t like taking drugs, I don’t like it either. Gummies are not the same thing. Cannabis consists of CBD and THC, and I don’t personally tolerate CBD, only the THC part. So best get that from a medical cannabis clinic. A small amount really knocks me out and gives me the best sleep I’ve had in years, but I can only use it occasionally as it builds up in the system. I don’t take it as the clinic initially suggested ie they expect you to titrate and take it regularly. Too many side effects for me and the dose ends up being much too high.

Marlayna67 profile image
Marlayna67

Your post is quite timely as I am in utter hell. We have been driving across the US for a move, at only five hours a day. Due to the lack of sleep at night, I have had a terrible time. I was nodding off at the wheel, and had to pull over a minimum of three times per day. I fell asleep at a stoplight in a split second due to this fatigue I have never before experienced.

The second night of our tour, I took buprenorphine and could not get to sleep until 3:30 am, and didn't sleep soundly even then, only to have to hop up and start driving again.

So I stopped the Buprenorphine again, and returned to oxy. This is bringing terrible side effects now, as I feel I am bouncing around between withdrawals all day and night. I have never felt so terrible. Last night I took triple the oxy just to sleep which messed me up all day today.

Now that we're safely on the east coast, I thought I would go back to buprenorphine since I can take a nap if I need to. I'm just not sure what to do anymore.

Typicallygaslit profile image
Typicallygaslit in reply toMarlayna67

Ugh, sounds awful. In the beginning when I started on Bupe, I really had a hard time driving and just avoided it. Now I’m better at getting around the problem, for instance I’ve gone down to 350 mcg now which helps, but it’s not guaranteed because it depends how much sleep I get. I seem to do the best on days when I’ve taken a small amount of THC and had time to sleep it all off.

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