Hi all!After 30 years of Pramipexole I went on Pergabalin. I was dizzy with it and had many falls. I am now on Gabapentin 600 mg 2 hrs before sleep and it doesn't seem to help enough to give me quality sleep. I still wake several times a night with RLS
I changed to a part time job as it was too much working a 40 hour week. Working hours are 17.00 until 21.00 hrs from Monday to Friday.
Unable to take Gabapentin when working as it makes me feel sleepy.
Shall I switch back to Pergabalin?
Try to ask my GP to switch to something else?
Thanks in advance!
Written by
Moonwalker1967
To view profiles and participate in discussions please or .
Add 100 mg every couple of days until you find the dose that works for you as you leave work at 2100 . Then take your 600 mg at 2300 and go to bed at midnight. This may be later than you have been going to bed but since you don't have to go to work in the morning you can sleep later.
Sue, super valuable advice. I will do as suggested. Thanks 🙏 so much for your help. I will need to contact my GP (I am in the UK) to up the dose by 100 mg. I soooo want my quality of life back!
I was on Mirapexin for 22 years and had reached the maximum dose. Augmentation made my symptoms much worse, and life was awful. I started taking pregabalin late evening about four years ago. It helped me reduce my Mirapexin dose down to one tablet (from five) over three years. I did not suffer any side effects from pregabalin. However, despite increasing pregabalin to way over the maximum dose (575 mg vs 450 mg) I could not reduce my Mirapexin to less than one tablet.
Based on advice from people on this forum I used the Mayo Clinic Algorithm to help convince my GP to prescribe opioids. They worked like a dream! I took my last Mirapexin on 7th July and returned all my unused tablets to my local chemist – I will never take that drug again!
I now take 25 mg of a morphine sulphate medication (brand name MST Continus 5 mg and Zomorph 10 mg) when I go to bed and have reduced my pregabalin to 300 mg over a period of many weeks. My plan is to keep reducing the pregabalin until my symptoms return and then work on the right balance between the two medications.
I live in the UK and the above was all via my NHS GP.
It's taken 4 months to reduce my pregablin down from.300mg ...I'm on 75mg now, legs are awful again but the cocktail of medication over the past 18months has made me just want to be medication free due to the side effects,especially the pregablin reductions.I'm back on 4 x iron byglicinite before bed ,which works until it doesn't. X
Oh so u r saying u took pamiprexole for 30 + years but had to augment it as the RLS spread to your arms and had to keep increasing pamiprexole? Ok so what side effects encouraged u to quit taking it . Or did u quit taking it and what was your highest dosage?
I am taking it now and want to be prepared. It certainly is working on a half of the lowest dose 0.125mg.
I was on it a year ago and my hair was falling out and wt fan, so I stopped and holy hell with other meds causing side effects, one caused suicidal ideation thought, the levodopa, sonI have suffered so bad this past year and had no life so decided to b a bald fat woman and go back on pamiprexole cause it did work for me: I even had to quit working due to no sleep. I was scared I would make a mistake or miss something with my patients as I am a nurse practitioner.
You don't want to be on pramipexole even on half of the lowest dose. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.
Ropinirole, Neupro and pramipexole 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 up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole so wait to come off pramipexole until then and since you are on only half of a .125 mg dose you can come straight off it without weaning off it. It won't be fully effective until you are off it for pramipexole for several weeks and your symptoms have settled. After you are off pramipexole for several weeks 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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Baz33, how are you doing? I’m not sure how many mg your iron tablets are, but I’m trying to get the word out that if you take it every night, try not to exceed 56. Less is more. If you can make do with 28mg then that’s what I would do.
OK, why are we reducing please ?Currently what's working ...2 x GREEN nytol,4 x iron, I'm reducing pregablin so 25mg day 50 mg night, 2 x magnesium...I know ! Hideous but slept through without symptoms last night ....like I've always said ,things work then they don't, the above worked and then stopped until I added the magnesium, I take it a 2 hour intervals I don't take it together and take the iron with orange juice , the medical team are reviewing what they can do but have suggested, beta blockers ? Diazapam to which I've said no to both .
👯♀️I love iron and I love magnesium!!! You’re back to the old you. Wish the doc would let you stay on the small amount of Pregabalin.
The reason I want people to take the lowest effective dose of iron (especially people who take it every night as opposed to every other night) is because the higher the amount of iron, the higher the amount of hepcidin (the iron gatekeeper) that the body produces. Hepcidin stops iron in the GI tract from entering the blood stream for over 24 hours after that high dose. That’s why it seems to poop out for some people - I think?
There’s a man on here who can’t raise his ferritin, or get relief from his RLS, despite taking around 90mg of ferrous bisglycinate. It seems he was doing much better when he was on a much lower dose. So that’s why I’m giving all the Ironman Club members a heads up. 😅
RLS results from the gut dysbiosis arising from chronic consumption of vegetable carbohydrates. With a carnivore way of eating RLS symptoms fade to nothing. It's not what you have to do, it's what you have to stop doing. No drugs, doesn't cost a penny. After 30 years of RLS I hardly remember what it was like. Do your research. Get off the drug racketeers.
Here's a Reddit thread about Carnivore Diet and RLS...
Lots of folks ascribe different diets for RLS, keto, paleo, vegetarian, carnivore. Bear in mind - everyone is different and no diet is immediate - many months to see results or lack of.
I’m interested in your research, my son has been interested in this for years but found it extremely difficult to maintain for long periods of time. It allows very few choices or variety especially in a society that includes meals in almost everything they do together.
This is very interesting. No none ever mentioned it Andy his is first I have read about it. Please share more of your experience. Jan in Alberta Canada
Very interesting, I'm convinced rls and the microbiome are related but wouldn't know where to start with diet, suggestions welcome, 40 years of rls hell, I'll try anything!
Just because you had problems with pregabalin did not mean there weren't other alternatives than going back on pramipexole to control your RLS. You will soon suffer augmentation again. If you want to know about other alternatives, reply to this.
My neurologist also suffers from RLS so he is very knowledgable on the topic, thank goodness. After I weaned of Pramipexole, he put me on 150 mg pregabalin and 50 mg tramadol. Occasionally if my RLS is really acting up because of stress or very hot weather, I am allowed to take an additional 25 mg. Tramadol (I just break the pill in half). It has been a real game changer to me.
For anyone's information, I live in Vancouver, BC and my doctor is Dr. Valerio at UBC
I wish doctors in the US would prescribe Tramadol then I could lower my Gabapentin. I know I can’t think as clearly while on it. It took me months to even feel like I could think clearly enough to drive earlier in the day.
You are just the person I needed to hear from! I live in Quebec. I have not been able to find a doctor (GP or neurologist) in my region who considers augmentation from DA’s a problem that needs fixing. I just keep being prescribed more Pramipexole, and most recently lorazepam, for my symptoms. Very grateful to have the name of your doctor. Hoping it’s a starting point for me.
It scares me how uneducated doctors can be about RLS and Pramipexole I can't imagine what shape I'd be in if my neurologist wasn't so up on it. My GP told me to just keep upping my dosage and I told her I didn't think that was wise as it went against everything I've been reading. Good luck to you!
How much do you take? According to the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... the usual effective amount is 200 to 300 mg.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
You might want to increase it by 25 mg every couple of days until you find the dose that controls your symptoms. 450 mg is the normal maximum. And as LotteM says take it at night 1 to 2 hours before bedtime and take it all at one time. That alone may be enough to control your symptoms and let you sleep more than 3 to 4 hours.
Hoi Plien, ik ben ook Nederlands. Dan hoeven we niet te vertalen.
Er is wel degelijk wat aan te doen, maar veel huisartsen hebben dat nooit geleerd. Er is namelijk veel nieuwe kennis in de afgelopen 10-20 jaar. Ook veel neurologen zijn niet goed op de hoogte.
Pregabalin kan op zich een effectief middel zijn, maar voor RLS is het beter om alleen ‘s avonds te nemen. Overdag hebben we immers geen klachten.
Kijk eens op de site van Stichting Restless Legs: stichting-restless-legs.nl/. Je kunt doordeweeks tussen 19 en 20u met een ervaringsdeskundige bellen (ik ben er een van). We hebben advies en vooral: een lijst met neurologen met goede kennis van RLS. Maar ook gewoon goede informatie, óók voor je huisarts. Als die wil luisteren dan kan dat al een wereld van verschil maken.
Want:
-eerst bloedonderzoek voor met name ijzer (let op: ferritine moet apart aangevinkt)
- slik je andere medicijnen die RLS kunnen verergeren
- dan pas mogelijke medicijnen en hoe ze te nemen (alleen ‘s avonds). Officieel wordt in Nederland nog als eerste een dopamine agonist voorgeschreven (ropinirol of pramipexol). Internationaal niet meer, omdat deze middelen grote kans op twee erge bijwerkingen hebben. 1. Ze kunnen na korte of lange tijd de ziekte juist erger maken. 2. Veel mensen kunnen verslavingen zoals overmatig kopen, gokken, sex e.d. krijgen. Pregabalin is een goede eerste keus.
Hopelijk is dit een goede start. Lees de site en bel eens. Ook voor je moeder en dochter. Succes en wie weet tot spreeks.
I worked in Amsterdam for 6 weeks on a temporary assignment for IBM and loved it. The weather was terrific (May - early June) and loved all the bicycles. Luckily I didn't have to learn the language.😀
I had to end up taking 1800mg of Gabapentin to get the RLS under control after weaning off of Ropinarole and it’s worked great. I’m going to try backing off a little to see now that I’ve been on that for a while and see if I can take less and still keep it under control. I take 600 at 2pm, 600 at 4pm and 600 at 8pm
You might want to switch to 4, 6 and 8. Keeping it only 2 hours apart will help make it work better and then if you want to try reducing get 100 mg ones and try reducing your earliest dose by 100 mg every 2 weeks. This way you avoid withdrawal effects which I learned the hard way by trying to reduce by 300 mg.
Hi Sue, an update of this scenario. My GP is scared that I may get addicted and wants me to wait 3 weeks to up my Gabapentin to 700. Apparently it takes 3 weeks for the body to get used to the updated dose. I have only been on 600 for 1 week. I have also asked for a new referral to Sheffield neurology. Will just have to put up with this for another 2 weeks or so. Unbelievable, how unknowledgeable GP's are!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Gabapentin
Ropinirole as needed?
Hi newbie here help needed
Question for Ellfindoe or Joolsg about Gabapentin please
