Weaned off Pramipexole. Gabapentin? - Restless Legs Syn...

Restless Legs Syndrome
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Weaned off Pramipexole. Gabapentin?

Dreamofsleep
Dreamofsleep

Hi All.

Have successfully weaned myself off Pramipexole. Had been taking Gabapentin alongside for some time. Wanted to come off all medication and wanted to feel “normal” again so I didn’t have the side effects of these meds the next day. After about 3 weeks of horrendous nights of not sleeping at all because of dreadful RLS, I felt like I should at least try Gabapentin again. Can somebody please recommend the dosage I should be taking and when? I have tried 300 mg at about 10pm but that didn’t work too well and then topped that up at about 2am with another 300mg, together with some Co-dydramol which I take for back pain. I have then managed a few hours sleep.

Any help or advice would be truly welcome.

Many thanks

37 Replies
oldestnewest

Hi, sorry you couldn't go medication free. It's awful being dependent on these medicines.

300mg gabapentin isn't really enough. The effective dose is I believe at least 900mg.

You can build up by increasing it by 100mg a day. (or 300mg in 3 days).

I'd also suggest a couple of other things.

One is that the proportion of gabapentin you absorb decreases as you increase the dose. So although you may triple the amount you take at one time, it doesn't triple the amount you absorb. So you could split the dose 2/3 in the evening and 1/3 at least 3 hours before that. This actually helps it be more effective.

The other thing is you could try taking the later dose earlier. This might reduce the side effects you're left with in the morning.

It's not a good idea to take a dose in the middle of the night, this means you will have more side effects in the morning. Better to take a higher dose earlier.

If 900mg doesn't work then you could increase it further. .However, I'd suggest that if you need more than 1200mg, then it might be a good idea to switch to pregabalin. Pregabalin is more potent and more readily and consistently absorbed so you don't need to take as much.

300mg simply gabapentin isn't enough.

I hope this helps.

Dreamofsleep
Dreamofsleep in reply to Manerva

Thank you so much for this advice. I shall try what you suggest and see what happens! Many thanks again.

Dreamofsleep
Dreamofsleep in reply to Manerva

Hi Manerva. I took your advice and had the best night's sleep that I can remember. I took 300mg at about 6pm and then 600mg at about 10pm. I woke up once in the early hours of the morning but was able to get back to sleep quite quickly. Thank you so much for your advice.

Well done for getting through withdrawal. I second everything Manerva has said. He’s given you excellent advice.

It may take a few months for all withdrawal symptoms to settle so observe how the Gabapentin helps and adjust the timing of the dose accordingly.

Most side effects of Gabapentin settle after a few months as well.

Good luck

Dreamofsleep
Dreamofsleep in reply to Joolsg

Thank you for this. I really just wanted to feel normal again! Thought that maybe after coming off Pramipexole, that might happen. How wrong was I!!!!!!

Dreamofsleep
Dreamofsleep in reply to Joolsg

Hi Joolsg. I had the best night's sleep last night that I have had in a very long time. I took Manerva's advice and took 300mg at about 6pm and then 600mg at about 10pm. Just hoping that this will continue!! Many thanks for your input.

Joolsg
Joolsg in reply to Dreamofsleep

Brilliant! Even if you have bad nights, remember that you will also have good nights & that will keep you going.

Sleep well.

I have been taking 300mg of gabapentin 3 times a day, ( morning, early evening and bedtime), for nearly 7 yrs. If my rls is particularly jumpy, I don't worry about taking an extra one when needed. I believe 900mg in total is the recommended dose and you will find the most effective way splitting that dosage to suit yourself.

I also have back pain, but take a 50mg tramadol, up to 3 a day, for that.

Good luck! I hope you find some relief.

Many thanks for this. Do you not find that taking it in the morning makes you more sleepy during the day?

I've not noticed taking a 300mg tablet in the morning makes me more sleepy, but I am retired from teaching now, so cannot comment on how I'd feel if I were still working.

It can take some people a little time to adjust to any side effects of taking gabapentin; I'm clumsier and a little more unsteady on my feet, but to be able to sleep most nights and have relief when sitting through the day is worth it. Before I was prescribed gabapentin, my rls was flaring up day and night, for longer and longer episodes. I feel very lucky to have been prescribed it as a first option.

I forgot to mention, I take an iron tablet too, ( when I remember ), as I read on this site it could be beneficial.

Fingers X for you.

Thank you Bananie123. I followed Manerva's advice and took 300mg at about 6pm and then 600mg at about 10pm. I had the best night's sleep that I have had in a very long time. I feel like a different person today! Thank you so much for your input!

Manerva
Manerva in reply to Bananie123

Hi, just to say that 900mg is usually the minimum effective dose for RLS, some people need more than that. It varies between individuals. It's a matter of adjusting the dose until you discover what's right for you.

3 times a day is appropriate if you have back pain. I started on gabapentin 3 X a day for back pain. However, for RLS, if you're not taking it for back pain as well, then you don't have to take it in the morning or midday.

Taking 900mg at night is more effective for RLS at night, i.e. when it's most needed. That way, you also don't get side effects so much during the day, which can make it more tolerable.

If someone were to take 300mg 3 X a day and hence only takes 300mg at night then finds they have to take an extra 300mg at night, that's a total of 1200mg. Better to take at least 600mg at night and only one other dose a day, which will. a) be more effective at night and b) will mean a lower overall lower dose.

This seems more appropriate for Dreamofsleep.

Obviously, as in your case, if you're also taking it for back pain, 3 X a day is appropriate and an extra 300mg at night is probably OK.

It's just a thought, but I wonder WHEN you know you need extra. If it's in the middle of the night, a) it's probably because you're not taking enough at night, but particularly b) this risks increasing side effects in the morning then it might be better to take 600mg at night regularly.

This stems from the facts that it takes about 3 hours after taking the medicine before it reaches maximum level in the blood and thereafter half of it disappears in 5 - 7 hours.

Taking medicines is often a case of juggling how much you take and when you take it to balance benefits against side effects.

Bananie123
Bananie123 in reply to Manerva

My rls wakes me up every morning! I call it my personal alarm clock. I normally manage 7/8 hrs sleep, ( lucky sod, I know ), but I HAVE to take my first tablet in the morning.

Everyone is so different in how they cope and what medications work for them in tackling this misunderstood ailment. One thing everyone on this site seems to acknowledge is that support and advice from other sufferers can help in many ways.

Thankyou

Manerva
Manerva in reply to Bananie123

Sorry to hear you're one of the unfortunates who suffer RLS in the morning. This only happened to me when I was taking a dopamine agonist causing augmentation. Before I started taking it, I only had symptoms at night.

Since I stopped taking it, I'm back to only having symptoms at night.

I wonder if you're taking a dopamine agonist as well?

You're still better off taking gabapentin 3 X a day for your back pain.

Bananie123
Bananie123 in reply to Manerva

Hiya Manerva,

I've never taken a dopamine anything. Apart from having bearable rls during pregnancies, ( didn't know what it was called then , 32 - 41 yrs ago ), I did not suffer from it again until 7 yrs ago following the very sudden, unexplained death of my youngest daughter at home.

It started in the evening and just built up from there. If I ever managed a few hrs restless sleep, it always woke me up and might subside when I was on my feet, but even sitting with a coffee during the day, my legs were jumping.

I tried most of the home remedies, ( no caffeine, iron and magnesium tablets, soap under a sheet!, etc. ), but eventually, after kicking my poor hubby out of bed yet again I went to the doctor. I don't drink alcohol anyway, hating the taste of it.

I live in Scotland and was given the gabapentin straight away, on a recommended dosage of 3 x 300mg a day - morning, ( I NEED that one ), evening and an hour or so before bedtime.

I've flown to Australia twice, ( gradually increasing the dosage to 1800mg for the flight and gradually decreasing on arrival ) and by taking an extra tablet daily for a few days prior to travelling, have journeyed by car the length and breadth of the UK. on holidays.

I do not take anything for granted and know that one day the gabapentin may not be as effective for me in the future. It is not a cure; it just keeps the horrors of the rls at bay. Any side effects are worth it, because my rls was unbearable. It could even creep into my arms, ( has always done that ), leaving me silently screaming.

I'm sure, for me, the trigger for the rls resurfacing was my daughter's death, but the physical symptoms are very real and telling myself, " It's all in my head ", just didn't work.

Phew! That's a long reply to read! And all about me!

I hope all is well with you and thankyou for your care and patience.

Stay safe!

Hi Bananie 123. I found your post really interesting. I have had RLS all my life or rather since I have been an adult but it was always quite intermittent and manageable. For me, it became a nightly occurrence after I lost my husband almost 10 years ago. I have been battling it since then. I wonder if the shock of losing a loved or some other emotional trauma can trigger this? I've never really thought of that before but now I've read your post, it seems there may be be a likelihood of this?

I was so sorry to read that you lost your child. My sincere condolences.

Thankyou.

There are so many theories as to what can cause rls and most are probably just that; theories. I have read that a low iron count can contribute towards it and I certainly wasn't eating very well after losing my daughter. However, I am now and the wretched rls is still here and only controlled by the gabapentin.

Perhaps for us, the trigger for it suddenly escalating has been losing a loved one. I have believed that to be true for me.

I do hope you find some relief from it. The days are long enough right now, without having to endure endless nights twitching and moving!

I hope you find some answers on this forum and am only too happy to help in any way I can.

Stay safe.

Manerva
Manerva in reply to Bananie123

I'm really sorry to hear of the death of your daughter. That must have been very traumatic.

One idea about RLS is that it's like many other conditions which require both an inherited tendency and a trigger.

If you don't have the inherited tendency, then you can't get it. If you do have the tendency then a trigger is also required.

This is sometimes known as the "diathesis and stress" model.

Stress, caused by trauma isn't just a psychological condition it does have a significant physiological impact and it's possible that the trauma of ypur daughters death was a trigger for you.

I sincerely hope the gabapentin continues to work for you. If it ever does fail, I can only urge you to never consider taking a dopamine agonist.

Bananie123
Bananie123 in reply to Manerva

Thankyou.

I've never heard of the diathesis and stress model, but it would make sense.

I have, however, heard about dopamine agonists and am far too much of a scary cat to even consider asking my doctor for them. I would suffer withdrawals from chocolate deprivation, so no, anything potentially addictive would be refused. I very much doubt, here in Scotland, some of the medications mentioned on this site would be offered. To read about the dreadful time people have with augmentation and then withdrawal from their prescribed tablets just sounds so agonising.

I'm aware my situation could change, but often posts regarding gabapentin are very negative. All I hope I can do, is if appropriate, answer someone's enquiry to reflect a more positive, albeit personal, outcome.

Hope you're finding plenty to keep occupied with and not thinking about jumpy legs; arms too much!

Stay safe and thankyou for sharing your knowledge.

Manerva
Manerva in reply to Bananie123

Hello again, you do get negative comments about gabapentin/pregabalin on this site it's true.

You get a lot more about dopamine agonists.

Gabapentin doesn't work for everyone, (neither do all the other medicines) and for some, side effects can make it of more cost than benefit. However, I've no real idea, but I imagine that the majority of people that take gabapentin do benefit from it.

I've been taking gabapentin since August 2018 and I've not turned into a Zombie, not lost my memory, nor gained weight, fallen over, gone blind or had breathing difficulties and my RLS is very well controlled.

So as long as it does continue to work, I'm not going to worry about it. There are other health issues that are more significant for me.

Agree with all the others have said.

Just in case you may be taking magnesium as well, be sure to separate it from the Gabapentin by 3 hours.

Gaba generally takes about 3 weeks to start taking effect.

If you are able to get Horizant, it is more effective. It is a form of Gaba that is better absorbed by the stomach. So smaller dose - less side effects. But sadly not available in the so called 'civilised ' world. 😾😥

Thank you for this. I'm certainly going to try what has been suggested. No I do not take magnesium so that's not a problem for me. Is Horizant only available in the USA? I'm in the UK.

Not available in UK, but ask for it anyway. That will increase the possibility.🙄

Manerva
Manerva in reply to Dreamofsleep

It's a shame we can't get Horizant in the UK, I think it's because of the cost.

I have completely come off of all my RLS meds. My doctor was willing to prescribe me the lowest dose of Oxycodone for RLS at night. It is 100%effective for me. I’ve begun breaking it in half and it still works! This came about when I got a short term prescription for Oxy for something completely different. I had a few left over. I decided to stop taking my RLS meds own because I was augmenting terribly. I was 3 night into it when I desperately took a left over Oxy. I was amazed that it worked right away. I was scared to tell my doctor what I had done but he was willing to help me anyway he can. He prescribed it to me with the understanding that I would go to Mayo here in Jacksonville since they have a dedicated RLS division. My appt was cancelled because of Corona but I’m sure I’ll be going back in the next few months. I don’t know what’s ahead for me, but for right now I have a wonderful doctor who has known me for years and knows I hate taking meds for anything. I hope this is helpful in some small way.

Manerva
Manerva in reply to Meddersm

Hi, it's great to hear that the Oxycodone is working for you and you have a doctor who's willing to prescribe it.

I appreciate that strictly speaking you may no longer be taking "RLS meds", but in reality you're still taking "meds for RLS" it seems.

I'd like to be able to manage my RLS without any meds at all. Unfortunately, I'm too scared to try it.

As always when taking any med, you have to be sure that the benefits outweigh the costs.

It doesn't seem as if Dreamofsleep has been offered an opiate so gabapentin is a still an option for now.

kygigi3
kygigi3 in reply to Meddersm

If u take tnat daily be aware of how quickly ur body gets addicted to it. U will have to take more and more and more to work and withdrawals are HELL! Try kratom. Itis way better for u and works like nothing else can. Its was a miracle for me when i discovered. It is not dangerous in any way. Dnt listen to FDA. Science proves them wrong. Big pharma is hurting from losing money. Its all greed. Red vein kratom is all u need to stop severe rls!!!

Gabapentin was the absolute worst med to wean off of. Nightmare for mths. And if youve taken it before it will take a huge amt. To work on RLS. I would try anything else before that. Have u tried hydroxazine?

Manerva
Manerva in reply to kygigi3

Just a couple of points. Firstly the US FDA has issued warnings about Kratom, you might dismiss these as the FDA being influenced by the pharma companies, but you might also think this unlikely. In addition, if pharma companies wished to, they could investigate its properties and develop a product based on it. As they have done with opium.

I believe also that many countries have not yet given a legal drug status to Kratom, so I guess it's classed as a food substance. As such, there is no regulation of it's quality, strength or sale and no need for medical supervsion. This makes it risky.

Additionally, the fact that is has pain killing and euphoric properties does suggest that it at least psychologically dependency producing, therefore, there's a risk of abuse.

To say it's not dangerius is therefore not particularly accurate.

"Science proves them wrong" is easy to write, but would be more convincing if actual evidence of that was offered.

It is known that Kratom can be useful for some people in relieving RLS and it's really up to the individual to make their own choice, knowing the risks whether they wish to try or not.

However, I think it irresponsible to promote it as being risk free, which apoears to be misinformation.

As regards hydroxazine (vistaril), it may be in some cases some individuals might have found it has helped with their RLS. It does have some sedative effects, so it could be accepted that it might help sleep. There doesn't seem to be any basis for it being considered as helpful for RLS symptoms.

Additionally, vistaril is listed on some sites as being one of the antihistamines known to make RLS worse.

Hi

I just wanted to say that I have had restless legs for about 40 years and have found gabapentine 900 mg a god send. No longer do I have rls from mid evening and through the night. I had tried ropinorole before but had augmentation which was quite frightening when the rls seemed to be getting worse. I do get a bit of rls in the middle of the night now but no way is it like before. I tend to take them about 8ish but may try splitting the dose as someone suggested on an earlier post. I think its trial and error really. But best in evening as it does make me a bit clumsy, and dozy.

Good luck, hope things work out for you

Dreamofsleep
Dreamofsleep in reply to Woolfy1

Thank you Woolfy1. I tried what Manerva suggested and yes, it did seem like a godsend. I had the best night's sleep that I can remember! I just hope that it continues......... !!!!

Pramipexole worked great but I augmented above 0.125 mg. I've been on gabapentin for two weeks and have been nauseous, dizzy and clumsy throughout; 300mg helped RLS and sleep but killed my day;200mg seems to be the sweet stop and I'm waking with less nausea though only two nausea-free hours. I want to be meds-free eventually, but for now will stick with the gabapentin because I'm improving and don't have time for my 3-4 hours daily exercise target.

I recently added gabapentin to my mprphine(ms contin low dose) and ropinerole going to bed. I sleep about 3 hrs and do it again. Sleep another 3 or 4 and by then I am slept out. First I have felt "normal" in three miserable years.

Hi dream of sleep

What country do you live in ?

I take take the most amazing drug a after taking the most horrific of drugs and side effects

But it’s not easily available in all countries

However I am finding some ways to side step for some of our HealthUnlocked friends .

You am the first person in Australia and our group to try this medication.

I feel so normal I have my life back

It is buprenorphine , or Subutex same same

Tiny little crumb once a day last 24 hours zero breakthrough .

I do have my life back

What country are you in

So far I have managed to help people access it in Australia

American

Japan

I’m currently working on getting access for the good people in the UK

Dr Glen Brooks NYC

Professor J Winkelman BOSTON

Professor Richard Allen JOHN HOPKINS

have all said the evidence shoes I will never need to increase does nor should it stop working

I take just under 1 mg

2 mg was the prescribed dose by Dr G Brooks

🙂

Heatherlss
Heatherlss in reply to Shumbah

You're a class-act. Hopefully, you'll find some way of reaching out to doctors here in New Delhi as well to prescribe Buprenorphine rather than the DAs. It would do me the world of good.

Shumbah
Shumbah in reply to Heatherlss

Hi heatherless

I know they do have buprenorphine in New Delhi,

If you have a genuine compassionate Doctor ask him if he has a relationship with a like minded doctor in a drug clinic regarding a trial on buprenorphine. It must be singular with nothing added .

If you wish to private message your email I am happy to email you my info along with the recent email from Professor Richard Allen from John Hopkins.

Drug clinics can prescribe buprenorphine for other conditions other than substance abuse .

All the best I won’t give up if you don’t 🙂

Heatherlss
Heatherlss in reply to Shumbah

They do have it in New Delhi ? That's already good news to me.

Sending you my email id over private message for the info.

What other conditions is buprenorphine prescribed for ? I'm sorry I don't know much about it.

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