I took my last little bit of Pramipexole 3 days ago .and haven’t had any sleep since then (max 2 hours per night in 30 minutes segments) I’m currently on 400mg Gabapentin … still getting very dizzy from it , but as I understand that will get better. Is there a CBD-THC combination I can get to help me get some sleep. I really need to sleep more than 30 minutes 😱
Gabapentin and CBD&THC : I took my last... - Restless Legs Syn...
Gabapentin and CBD&THC
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YoghurtLover2
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I used cannabis oil with 20% THC. It gave me 30 minutes sleep after 4 days of zero sleep/rest during withdrawal.The dizziness does settle after around 2 months.
Can you ask for an opioid like codeine (60mg) or tramadol 50mg to take until thd gabapentin is at full effect ( it takes 3 weeks at effective dose to kick in)?
I did ask but GP doesn’t want to . So now I’m just going to do CBD/THC till Gabapentin kicks in . It worked 2years ago on its own before I went in the dreaded Pramipexole 😳 Does that that sound good?
Yes. It may give you a little more sleep.One day these doctors will apologise for the suffering they have caused.
The horrible side effects of Pramipexole have been known for years. The fact your doctor prescribed it 2 years ago is unforgivable.
And then she said if Gabapentin doesn’t work we can try ropinirole … another DA!!! 😱
Unbelievable! When will they ever learn??Horrifying.
Just tell her that hundreds of UK GPs have been successfully sued for failing to warn about Impulse Control Disorder on dopamine agonists. ICD affects up to 38% of patients.
Lots of articles/media reports about this.
And hopefully there will be successful negligence cases for failure to warn of the very high rates of drug-induced worsening (augmentation).
Legal action seems to be the ONLY way to educate them.
Video your nightly withdrawal symptoms ( the leg jerks/ the walking up & down, the exhaustion, the distress). They might stop prescribing if they see the hell we have to go through getting off these drugs.
Hi, I am new to the group. I have been taking this ghastly drug pramipexole for approx. 10-15 years, possibly more and now on the highest dose possible (0.7MG) daily. I sometimes overdose as my desire to escape hours of withering around on the floor is so intense I become completely irrational! I would do anything to come off of it! Just reading this conversation trail has made me very emotional. My wife is very supportive but having contact with people that understand what RLS and side effects of DA's is like to live with gives great comfort.
Welcome Comrades.Please make a new post to introduce yourself and list ALL meds and where you are.
I'll reply in more detail later.
Thank you Joolsg for your quick reply to my message. I am Neil. I am 58 years of age and live in Jersey. Current meds are pramipexole .7mg daily. Unconnected meds are tadifil to help recover from prostatectomy last June, esomepraxole to manage reflux/hiatus hernia and monopost eye drops to control eye pressures. I will listen to the acticle on radio solent this evening, thanks again, Neil.
I got the day wrong! Tomorrow at 8.Esomepraxole is a trigger med. It stops iron absorption and therefore usually worsens RLS. But first speak to your gastro enterologist. You can safely take gaviscon or gaviscon advance and also start a good pro biotic like Symprove or VSL to improve acid stomach.
Comrades. 0.7 is over the maximum dose. So your GP is already negligent in increasing the dose. Max is 0.5mg.
Are you in UK? Did your GP warn you of the very high risk of Impulse Control Disorder (gambling, spending, overeating and hypersexuality)? Did they warn of drug-induced worsening(augmentation)?
If not- as you are now suffering drug-induced worsening, you might want to consider legal action for medical negligence on a no win no fee basis.
Switalskis have acted for many RLS patients and know more about correct treatment than most GPs.
You can email
Kimberley.Bradfield@switalskis.com
to consider legal action. She wants to bring a test case against a UK doctor to force change.
First go back to GP.
Ask for full iron panel blood tests to include serum ferritin. NICE guidance and NHS both require this. Ensure no iron supplements for 48 hours before test & fast (morning test).
Serum ferritin needs to be above 200ųg ideally. GP will tell you 20 is fine. It isn't. We need higher serum ferritin to get iron through the blood/brain barrier.
Review and safely replace all trigger meds with doctor. RLS-UK lists them under medications to avoid on the website.
Anti depressants and sedating anti histamines are the usual culprits.
Start reducing Pramipexole NOW.
You will never be free from that severe, non stop feeling until you are completely off dopamine agonists.
Ask for normal release pills in 0.125 (0.088) doses. Drop half a 0.088 pill every 2 weeks.
Print off withdrawal schedule and iron therapy pages from 'useful resources' and give to GP.
Ask for 30mg codeine/50mg tramadol or 10mg oxycodone and take for 4 or 5 nights after each reduction of Pramipexole. Your RLS will increase at each reduction (common withdrawal).
Start pregabalin or gabapentin 4 weeks before last dose drop of Pramipexole.
Doses and timing set out on RLS-UK website. Take at night only.
Arrange 3 weeks off work/social occasions as withdrawal is hell. You'll get no sleep for the first week and extremely severe RLS as your body screams out for dopamine.
But- I promise you- once through withdrawal- the RLS settles. It usually reverts to how it was before you started Pramipexole.
The pregabalin /gabapentin will then start to work.
Some people do not respond to pregabalin or gabapentin.
The RLS is then 'refractory' and you will need a low dose opioid.
Read the RLS-UK website. And all posts from the last week.
UK doctors are not taught anything about this serious, common disease. The UK is about 10 years behind the best research and treatment as set out in the Mayo Clinic Algorithm for treatment of RLS and the new American Academy of Sleep Medicine Guidance.
But make a new post and you will then get lots of replies from people who have been in your position.
To give you some hope- I went through withdrawal in 2016. I am now completely free of RLS. Day or night. I sleep 8 hours every night. I had to fight to get the right treatment. I now take 0.4mg Buprenorphine at night. Miraculous. I'm not addicted. I haven't increased the dose in 4 years. I am dependent- but I am also dependent on my MS medications. If I stop taking them- my MS gets worse.
It's the same as taking diabetes or high blood pressure meds. We have an incurable disease. We will need meds for life usually.
Good luck.
Thanks so much Joolsg. Just in from work, so only just able to reply now. I'm not really sure where to start and am probably going to sound very dramatic but put simply, I have a far from ideal quality of life in the evenings ! I usually take myself off to bed via a hot bath at around 7pm for another restless night with very limited sleep. Often symptoms mean shaking of legs, walking around, sleeping on the floor, self harm in frustration (usually hitting head and legs) and reaching for even more pramipexole with no care for the repercussions of overdosing. I have tried various GP's and flagged my concerns about what long term usage of this drug may do to me. There have been attempts to reduce the dosage but only on my instigation. I was offered an alternative by a specialist which I recall being Ropinirole. It didn't work for me and I stopped after a few days (probably too soon) but guidance I recall was limited to say the least. The only alternative given to me was to try "Cold Turkey" and stop all meds without much support. One GP informed me that I should consider myself lucky to live in the western world where drugs like pramipexole are available to me. I could go on! On my last visit I again discussed how desperate I was to reduce and one day come off Pramipexole. To his credit my GP has put a plan in place to reduce to 3 x 0.18mg a day. It is hard, but I am sticking to it except on the bad days. I have booked a double appointment this Thursday and will present your suggestions. I will cut and paste relevant information to him only. Thank you again for taking the time to read and reply to my story. I am sure there are many like me and many I'm sure worse. What i do know is that my pharmacist (bless him) has raised more concern about the dosage of pramipexole being prescribed than any GP. He is not aware of anybody in Jersey taking such a high dose. The impacts and side effects of pramipexole as you know are awful. I often have suicidal thoughts, I have learnt to recognise and manage impulsive and reactive behaviour, I binge eat until at the point of vomiting and am convinced of early mortality due to some sort of complication/side effect. Sorry to moan but offloading to people who understand has been so helpful.
We have all been in your shoes. I used to whip myself with a thin cane to cause severe pain as it was preferable to the awful RLS.I promise things will get better.
I have just posted about the updated UK NICE clinical knowledge service today.
They have COMPLETELY changed guidance to reflect the USA AASM guidance!!!
Show it to your GP.
Follow a slow withdrawal. Get your GP to prescribe an opioid and arrange an infusion.
Everyone on this forum who has suffered augmentation and withdrawal knows exactly what you are going through.
Show your GP the new NICE guidelines.
Hang in there Comrades , so many of us have been in your shoes but have got through it . This time last year I decided I couldnt take anymore but weaned off Ropinirole ( large dose )with the help of Jules and Sue. Withdrawal is brutal but best thing I ever did . I now take Buprenorphine 0.4 mg after seeing a neurologist privately and I am Rls free. There are no words . ....
Thank you Huntingleroy, your words give me hope and encouragement - well done for getting through withdrawal.
Welcome to the forum. You will find lots of help, support and understanding here.
.5 mg of pramipexole is the maximum amount. What doctor prescribed that much?
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.
To come off pramipexole, reduce by half of a .088[.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
By the way it would really help us to give you advice if you would indicate on your profile any other health conditions you have.
Quinine won't help by the way.
Hi Sue, thank you for taking the time to help - it really is most appreciated. I will update my profile after this message. I do have some other medical ongoing conditions. In January 2024 I was diagnosed with Prostate Cancer. I had a prostatectomy in June 2024. The tumour had already broken out so super heating was performed around the surrounding areas to try and kill any seeds. I have regular 4 month bloods to check my psa but all good at the moment. I am taking Tadalafil 5mg for post op erectile dysfunction. I have also been diagnosed with a small hiatus hernia that is managed with Esomeprazole 40mg. I take monopost eyedrops to manage eye pressures as I am at risk of developing Glaucoma. My pramipexole is not slow release. Apart from all that all good😆 Seriously though, the RLS and uncertainties of cancer returning and sight issues do cause me anxiety. Work life is good and i have a good job with supportive colleagues and management. My wife is very supportive but its not easy for her to see me suffering when RLS is bad. My release is through the sport I love which is endurance running. I run marathons and ultra marathons. However I am well aware that the over stimulation after long training runs brings on violent attacks of RLS. I have booked a double appointment with my GP on Thursday. I will present to him the recommendations from both yourself and others from these chats. Put simply, I will not accept anything else. If he is unwilling then I will find an alternative GP who will. I do not mean to sound bitter, but one lady GP apart, I now realise that various GPS have let me down by (in my opinion) lazy practice of simply referring to the text book for guidance without trying to understand RLS. Thinking about the treatment for the other conditions I have, there is no attempt at joined up care - treatment is based on managing the condition discussed on that day and no consideration seems to have been given to my overall health picture. Rant over!! At no point has any GP warned at any length about the side effects of pramipexole if taken with increasing dosage or over a long period. Any attempt to reduce the dosage has come at my suggestion. I have been on 0.7mg for some time and was told that was the strongest safe dosage. My current GP has prescribed me 0.18mg and advised taking 3 per day as a start to reduce. But that's still 0.54mg daily! Diet is key for me and I know the trigger foods - sugar in particular. I just about have all the side effects mentioned including constant tiredness through lack of sleep. I feel I exist on adrenalin alone to get through most days. Life seems pretty tough at the moment. That's enough of feeling sorry for myself!
Here's hoping your prostrate cancer continues to be OK! 🤞
Your medicines are all fine except the Esomeprazole which is a Proton Pump Inhibitor and RLS-UK says all PPIs can make RLS worse, although some on the forum say it doesn't bother them. Gaviscon Advance, be sure it is the Advance is a safe substitute but discuss it with your doctor.
Since you are taking 0.88 tablets rather than the more common 0.088 tablets, you need to reduce by 1/4 of a tablet every 2 weeks. Since it would be difficult to do that you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Tell your GP that NICE has just changed their advice and no longer recommend dopamine agonists as first line treatment. See healthunlocked.com/rlsuk/po...
I take a combination gummie of 5 mg CBN and 5 mg THC - works pretty well.
if it worked before , good place to start .. that said , evidence is more supportive of low dose THC - perhaps 2 to 10mg with a higher dose of CBN, I’d try 10mg - 100mg CBN . Even CBN by itself has some evidence of efficacy.
Not much good scientific evidence for CBD and sleep yet, but if it helps you , it is relatively safe * you should review your plans with your physician especially if you’re taking any meds with grapefruit warning !
Nano/water soluble thc might be the better option over traditional thc as well. I am basing this on limited case studies where smoked or vaped cannabis has shown to be better option than ingested thc. The nano thc yields results that are much more like smoked / vaped cannabis. Ingested traditional THC metabolizes quite differently as delta 11 OH THC becomes the dominant molecule when taken orally..
That said, there is overall scant scientific research in this area .. so if you find something that works for you, why not continue & share your experience on Healthunlocked ! 😁
Cheers & best luck
CBD/CBN / THC to help with sleep and RLS .
After 3 sleepless nights coming totally off Pramipexole, I took about 33mg CBD/CBN and 25 mg THC. Probably too much as I still feel drugged ,.. but I slept in total about 11 hours 🙏🙏👍
I’m currently on 400 mg Gabapentin … waiting for it to take full affect … as I’ve learnt on this forum 🙏….in about 3 weeks
I am coming off pramipexole after many years now down to one (0.088mg) per night and have just started adding gabapentin. I am not a heavy drinker but enjoy a glass of beer or wine. Should I now abstain completely?
Only if it makes your RLS worse. For some it does, for others it doesn't.
Thank you Sue. I am following your advice and have just had a good night's sleep (first in a long time) on 1 pramipexole and 1 gabapentin. Am aiming to reduce to 1/2 pramipexole soon and then zero. I'll leave off the drink for a while. Thank you again.
That's great!
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