Pregabalin

[Keith1231]

I have been taking Pregabalin 150mg for 2 months and my RLS is zero. However, I do not sleep well, I am waking up often throughout the night, as I was when having a restless legs night. My GP has recently, in the last week, increased the dose by 25mg (I had to suggest it). I now feel ready for bed, really dozy about 1 hr later, thinking I am going to have a good nights sleep but once my head hits the pillow I am wide awake. It seems like I am still having RLS but not as severely as before, no jumping legs or arms. What would you suggest?

[Joolsg]

Keith,2 months ago you were on 4 x.0.088 Pramipexole pills.

Did you withdraw completely in 2 months?

[Keith1231 in reply to Joolsg]

I came back from broad on 21 dec and didn't have any prami left so had to go cold turkey. I hadn't taken any for the last week of my holiday, I didn't seem to have any withdrawal systems. I knew I needed to get it out of my system before taking Pregabalin. That's where I'm at.

[Joolsg in reply to Keith1231]

That's incredible. Most people have severe withdrawal symptoms for months.You can have RLS without the creepy crawly leg sensations. Some people just have an overwhelming urge to move.

Are you having to get out of bed and walk or is it insomnia?

It can take months for our bodies to adjust after stopping Pramipexole.

If you have zero RLS, zero urge to move, it could be insomnia, but pregabalin has been shown to help insomnia, as it's sedating.

Have you raised serum ferritin above 100ųg/L?

You could try adding medical cannabis as that can help with imsomnia.

It may settle over the next few months, but if not, you should discuss fully with your doctor to see if a change of medication helps. Possibly switching to gabapentin ( side effects differ for many).

[Keith1231 in reply to Joolsg]

Before Pregabalin my legs and arm would jerk about all over the place to a point I would shout and swear, thankfully I live alone. I use to have to get up and walk around shower my legs with hot/cold water. That's when I would also eat. Now I just wake up for no reason, and still eat?? I had a serum ferritin done early Jan this year it was 227, I think. I don't think I can get medical cannabis in the UK, if so please tell me where. I will persevere with Pregabalin for now.

[Joolsg in reply to Keith1231]

RLS in arms is severe augmentation caused by your very high dose of Pramipexole.Medical cannabis IS legal AND available in the UK since 2020. It was legalised in 2019 and clinics opened in 2020. You have to pay, and it's expensive.

Initial consultation £50 & 3 monthly reviews at £50. Cannabis oil with 20% THC costs around £3 a day for 0.3ml.

Curaleaf and Lyphe Clinics will prescribe cannabis for pain and RLS.

app.curaleafclinic.com/proc...

[Keith1231 in reply to Joolsg]

I was taking .088 pramipexol when I had the RLS arm and legs jumping therefore, no augmentation so I believe? Thank you for the information on cannabis.

[Joolsg in reply to Keith1231]

It depends. Did you have jumping arms and legs BEFORE you took Pramipexole? The symptoms of augmentation are:RLS starts earlier in the afternoon/evening than before

RLS increases in severity

RLS moves from legs to arms or other body parts.

Augmentation can happen even on the smallest dose and very quickly.

[Joolsg in reply to Keith1231]

You mentioned before that you were taking 4 x 0.088 pills.

[Keith1231 in reply to Joolsg]

I tried to keep the medication, Pramipexol to a minimum but yes there were times when I took 4 x .088 but not every night. I don't believe I had jumping legs and arms before taking Pramipexol. It's all a bit of a blur to be honest. It only affected arms and legs.

[Joolsg in reply to Keith1231]

It's common during augmentation to have arms affected for the first time.

[Hidden]

You could try increasing the dose of pregabalin. ~300mg is the mean effective dose.

[707twitcher]

I also came off pramipexole fairly quickly. Buprenorphine helped make it almost painless. I've tried pregabalin a couple times since then, and it seemed to make my RLS worse. I know this is not common, but that's my experience. I'm just using the buprenorphine to control my RLS, and that is going well.

[Keith1231 in reply to 707twitcher]

Thank you.

[JenniferBut in reply to 707twitcher]

Hi, may I ask the dosage you take of Buprenorphine please? Did a RLS specialist prescribe this?

[Keith1231 in reply to JenniferBut]

I don't take Buprenorphine just 175mg of Pregabalin.

[707twitcher in reply to JenniferBut]

I was using suboxone sublingual strips (2mg buprenorphine/ .5 mg naloxone)and cutting them into fifths or sixths - so .33 to .4 mg at a time. I’ve just switched to the transdermal patch (Butrans), mainly to see if it makes a difference with constipation (I think it is better). 7.5 mcg seems to be equivalent to the .33mg of suboxone. I thought I got a full 7 days out of the first patch, but discovered last night that it likely gave out sometime around the 6 1/2 day mark, so I needed to take a little of the suboxone. It is nice to have that for emergency use when something triggers the RLS more than normal. I’ll start swapping patches after six days now.

I got it from my GP, after showing her the Mayo algorithm and a couple other articles that are frequently cited here (search for buprenorphine studies or something like that).

Good luck!

[Healthyneeds]

Try 1500-2000mg of L Tryptophan for a couple nights 2hours after your last meal with a b6 vitamin. If it works that's then after 5-7 days try 1000-2000mg of Valerian Root . if that's works you have a good rotation of options and ways to prevent tolerances

[Keith1231 in reply to Healthyneeds]

That's interesting, thanks.

[Nikos64]

Took me 6mo+ to completely detox from pramipexole and I was on Tramadol AND 75mg of pregabalin. But there’s hope and light at the end of the tunnel for you because unlike you I had RLS as my brain was detoxing from the dopamine agonist.

[Keith1231 in reply to Nikos64]

Thanks for sharing that.

[Chappy1960]

I moved sensibly across from 4mg Ropinirole (which had stopped being effective) to 300mg Pregabalin. I now very rarely get RLS symptoms, maybe if I’ve eaten to late, and sleep is better than I can ever remember.

I think you need to get to a higher dose of Pregabalin to get the right benefit. 300mg to 400mg I believe is the suggested dose.

[Keith1231 in reply to Chappy1960]

Thank you for the reply : I think you maybe right. Taking 175mg really dose make me feel very dozy and unstable on my feet so a bit fearful of falling again. Last night was another awful nights sleep, not with RLS that I was aware of I just couldn't sleep continuously. I guess I will have to stay on 175 for a couple of weeks then ask for an increase.

[Rubynessie]

Hi . I switched to Gabapentin, Pregabalin made me feel so unwell , drugged and caused me to wake during the night .

I feel so much better, Rl is under control and the side effects are less .

There’s lots of information on here regarding both Pregabalin and Gabapentin.

Im also free from pramipexole which I believe aids the effectiveness of Gabapentin.

Good luck Keith .

[Keith1231]

Thank you.

[UsableThought]

Keith -

I agree with Joolsg that you need to think about whether your symptoms might be unrelated to RLS and more to do with plain old insomnia.

Here is the gist of what you wrote about your actual symptoms:

"My RLS is zero . . . However, I do not sleep well, I am waking up often throughout the night, as I was when having a restless legs night . . . once my head hits the pillow I am wide awake."

If your RLS is indeed zero, then increasing a medication for RLS is not going to do anything for your insomnia. And although drugs like gabapentin do have a sedative effect, typically this effect diminishes substantially after a month or so; moreover, such drugs are not good choices for combatting insomnia, even though some doctors mistakenly prescribe them for that purpose; see this article for more:

evidence.nihr.ac.uk/alert/r...

Now, if it is plain old insomnia that you're experiencing, it could be caused by psychological or lifestyle factors. The psychological factors can sometimes be unconscious, and so very hard to figure out on your own. For example, it's possible to become conditioned to becoming fully alert once you have put your head on the pillow, rather than staying drowsy.

So you might talk to your doctor about all this. As an alternative, you could also look into a good self-help book for insomnia; typically such books have a chapter early on with a questionnaires and checklists that help in self-diagnosis - i.e. to discover if something you're doing might be causing your insomnia, or some aspect of your lifestyle might be doing so.

An excellent book that is available in both the US and UK is "Quiet Your Mind and Get to Sleep: Solutions to Insomnia for Those with Depression, Anxiety, or Chronic Pain", by Colleen E. Carney and Rachel Manber, both of whom are highly experienced and credentialed sleep psychologists. I have this book myself, and has benefited from its advice for my own occasional insomnia issues.

If you're in the UK, here's a shortcut link to that book on Amazon: amzn.eu/d/4Ii6QmJ

Or if you're in the U.S., try this link: a.co/d/0ArTwRX

I know about this stuff because in addition to RLS, I've also gone through periods where I've had severe insomnia, and needed to make changes my lifestyle to help. It takes patience but it's worth looking into.

It's also possible your insomnia will resolve on its own, but in case it doesn't, I hope the above information is helpful.

Randy

[Keith1231 in reply to UsableThought]

Perhap either yourself and Joolsg have not read my posts correctly or I have not explained correctly. Prior to taking Pregabalin my nights were a constant leg and arm movement, uncontrolled to a point I would shout and swear and jump out of bed stamping my feet kicking them against the wall. Cold and hot running water. Or is that insomnia? What I didn't sharing was that my condition was picked up after a sleep study 10 years ago.

[UsableThought in reply to Keith1231]

Now I’m confused.

Isn’t your question to do with what’s going on now - i.e. that you find yourself wide awake, but without RLS symptoms - rather than the arms & legs movements that were part of your RLS symptoms, but are now controlled by your medication?

Finding yourself wide awake once your head hits the pillow, even though an hour before you were drowsy, has nothing to do with RLS.

So again I’m confused by what you want help with. If it’s not this problem of being too awake when you want to be sleeping, then what is the problem?

[Keith1231 in reply to UsableThought]

Yes I do still wake up during the night and that causes me to visit the bathroom. Back to bed and cant sleep, if I do drop off I am awake again an hour or so later and repeat the same cycle. This happens several times a night. My questions is: Although I don't experience the jumping legs and arm anymore, do I still have mild RLS that wakes me up, but I am not consciously aware of it? When I had the sleep study I wasn't aware that I had it, although I did often wake up in the middle of the night, as I do now? Hence being sent for the sleep study.

[UsableThought in reply to Keith1231]

Okay, so you’re thinking it might be periodic limb movement, sometimes abbreviated PLMD or PLMS.

That’s a good question and getting a sleep study can be helpful. I myself got a sleep study early on (by now more than 30 years ago) and it showed that I had not only the RLS that was so tormenting and keeping me awake when I would go to bed (and earlier as well), but I also had PLMD that was waking me up several hundred times a night once I did fall asleep. The interesting thing was that these wakings were what is called “arousals” - meaning they were so brief that although they disturbed my sleep, most of the time I didn’t fully wake up, and so in the morning I had no memory of them. But they plus the RLS were wrecking my sleep quality.

So it’s fine to see what a study may show. There is the question of whether you should take your med on the night of the study or not - if you take your med and the study shows no arm or leg movements, it might be that you don’t have PLMD, but it might also be that you do have PLMD but the med is doing its job and controlling it - the study won’t be able to tell. If you don’t take your med you’ll have one hell of a bad night, but it would have a better shot at determining if you have PLMD. Your doctor and the sleep lab will tell you which way to go - probably with taking your normal med.

Beyond that, most specialists tend to believe that if your med is fully controlling your RLS, it’s probably controlling any PLMD that you might have as well. And similarly, if your med is not controlling your RLS, and you also have PLMD, then likely the PLMD will not be controlled either.

So a sleep study can be helpful at times - but my guess is that in your case, PLMD is not what’s causing you to be awake. Because when you say things like “Back to bed and can’t sleep”, that is not PLMD - that is insomnia. And bear in mind that insomnia can consist not only of difficulty falling asleep, but early waking as well, and once again difficulty falling back asleep.

But certainly a sleep study couldn’t hurt. Maybe there is a mild PLMD at work; but even then, although it might wake you up, it by itself would not be what is keeping you from falling back asleep (this is if you’re awake longer than 20 minutes or so).

Randy

[Keith1231 in reply to UsableThought]

I don't have a sleep study planned, I was referring to the original study. But thanks.

[briesmith]

I take Pregabalin as advised by the Royal Brompton Sleep clinic; 300mg "at night". I didn't know I had RLS/PLM, the clinic organised sleep study revealed it. I still don't know if I have RLS/PLM as it happens - if it happens - while I am asleep. And "at night" has got to be one of the least useful prescription medicine directions imaginable, don't you think?

If it means anything to anyone, I took Ropinirole for 2 days, just two days, before augmentation set in. I stopped taking it immediately and talked to the clinic who recommended Pregabalin. I was started on 75mg but this was increased to 300mg - the current dose I take nightly - at the first review following the Ropinirole experience.

It's absolutely clear that some of these drugs work for some people some of the time but the medics and researchers have no idea why, or how. As the NHS website states, "It's not clear exactly how Pregabalin works." But good luck to everyone taking something for RLS/PLM.

[Keith1231 in reply to briesmith]

Thank you.

[Mazdasilver]

Is pregabalin better than pramipexole, it is one year for my rls , should I swith to pregabalin.thankyou.

[Keith1231 in reply to Mazdasilver]

Perhaps you need to read comments on here from people that really know. Pramipexole in the old method of trying to control RLS, now its a NoNo. I switched to Pregabalin 2 month ago and no RLS. I also checked my other meds that I was taking, for those that affect RLS. I am sure you will get the correct advice on here. I might be worth putting your question, that you have put to me, as a new post on here. That way you are sure to be picked up. If you know what I mean.

[Mazdasilver in reply to Keith1231]

Thankyou ,

[SueJohnson in reply to Mazdasilver]

You have already been told the answer for this previously plus how to come off it.

[BBGGG]

I am on the same dose and had the same problem. My doc prescribed Trazadone and it’s working great. Everyone is different. Best of luck

[Keith1231 in reply to BBGGG]

Thank you.

[Hypnos]

Hi Keith, Iam also using GP at 120 MG. I use 10mg slow release Melatonin,and I tape some cannabis as before lights out. I forgot to mention 10 MG of Oxycodone. Allow it works quite well, yet even then I experienced a breakthrough of symptoms,so I added .25mg of Pramipexole. I sleep deeply all night except to take a kiss. Having experienced augmentation I am committed to using only one .25 mg dose of Pramipexole. So far, so good. I can easily sleep more than 8 hours but I wake up a bit woozy. My Doctor says it's the GP. I can live with this bedtime cocktail because it's much better than experiencing the symptoms. It's rather radical to do all that, but if this is the cost to have a life,then it's worth it. Good Luck.

[Keith1231]

Do you take medical cannabis?

[Help1963]

Hi All.

For those of you that have tried both Pregabalin & Gabapentin respectively, I would really appreciate some feedback on what you felt was more effective from the two. Along with side effects and equivalent doses on each medication ..

I'm currently take 400mg of gabapentin 4 x daily, but it just doesn't seem to be sufficient some nights, should I increase the dose? meaning at 400mg doses I would need to start taking it ( Gaba ) quite early in the afternoon OR switch to Pregabalin at the appropriate dose. Love your feedback guys.

[Marzipana]

Keith, even when I was on the highest dose of Lyrica (300mg), I would wake up every hour or 2, with RLS. I take 150-200mg and always wake up several times a night to RLS. My Mayo doctor seemed to think Lyrica was the answer (she doesn't have RLS), and wasn't willing to discuss anything more drastic to help.

[Keith1231]

Me too. I have just asked my Dr for more Pregabalin currently taking 175mg. I'm not hopeful of it working from what I have read on here. I don't have jumping legs of arms as I did before but just wondering if it a 'mini restless leg' attack that's waking me up that I am not aware of?