Gabapentin

[Thebarber]

Hi, I have now been off pramipexole for six week. I initially started on pregablin as the alternative. It did nothing. I am now on Gabapentin, was told by GP to take 300mg for 5days, then 300mg twice a day for five days. Then 300 mg three times a day for 5days. I am at the ,1x300,mg in the morning, 1x300mg tea time and 1x300mg at night. I have to wait another 4days until the GP will increase dose. I'm sure I read on here I should be taking all three doses at the same time and increase dosage every 2days until I get to the right dosage for me. Any advice would be appreciated. Thanks

[Lapsedrunner]

Well done for getting off the dreaded Pramipexole!!

If your RLS is just at night it makes no sense to spread the dose out during the day. When you get past 600mg you are advised to take the extra 300mg a couple of hours before your main dose eg I take 300mg around 8pm and 600mg around 10pm. This is due to the way it is absorbed.

If you take magnesium supplements take them well away from gabapentin as they block its absorption.

I hope you get some useful sleep. I usually just have one wriggly wake up per night and the occasional full sleep. It’s a big improvement on how it used to be (and augmentation/withdrawal from Pramipexole)

[Joolsg]

Well done for getting through prami withdrawal.Yet another GP who doesn't know how gabapentin should be prescribed for RLS.Use this to educate him/her and direct them to RLS-UK website, medications.

Gabapentin isn't absorbed above 600mg, so take it in split 600mg doses 2 hours apart at night.

Gabapentinoids often do NOT work for RLS, particularly after years on Dopamine agonists. Experts think it's because Pramipexole etc cause permanent damage to dopamine receptors.

If gabapentin taken correctly, at night only, doesn't work, you will need a low dose opioid.

I presume your GP has arranged full iron panel blood tests? What are the results?

[SueJohnson]

Doctors prescribe it that way because it is used for neuropathic pain that occurs 24 hours. It is prescribed off label for RLS so doctors who don't know anything about RLS still prescribe it that way.

Also increasing it that way is wrong. You should not increase it by 300 mg every 5 days. I gave you this information 3 months ago but let me give it to you again.

It takes 3 weeks before it is fully effective although it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg 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.

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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

Also if you were taking pregabalin your doctor should have made a direct switch. The equivalent amount of pregabalin to gabapentin would be 6 times so if you were taking as an example 150 mg of pregabalin the equivalent amount of gabapentin would be 900 mg. You may be suffering withdrawal effects since you were started on only 300 mg, If you are not up to the equivalent amount now, do so immediately. And if you have side effects you didn't have on pregabalin realize they may be withdrawal effects and will go away in a few days.

[Thebarber in reply to SueJohnson]

Thank you so much, I have been in a bit of a state and still am after coming off pramipexole. I think you are right,I was on 150mg pregablin. Then doc put me on 300mg gabapentin. I had-have the same effects as when I was coming off pramipexole. Yes, you did give me this info 3months ago. I forgot all about it in my confusion. Plus I can not get to see the same doctor each time I visit. Each have their own ideas, even though I had printed off the emails you sent me and gave them to the doctor there is only one at my practice that has acted on them. Luckily I have managed to get an appointment with her on Monday. The twitching and jerking has quietened down, the worse part at the moment is the tightening of my muscles. They seem to get tighter and tighter without any release. I have gone up to 900mg gabapentin today, two doses, two hours apart. Thank you all once again.

[SueJohnson in reply to Thebarber]

You may still suffer some withdrawal symptoms from reducing your dosage for a few days. I did when that happened to me. That is so frustrating to not be able to see the same doctor but glad you are able to see the good one on Monday.

[Thebarber in reply to SueJohnson]

Hello , been to see the "good" doctor this morning. I am starting to get really down, which I expected. My doctor asked me to contact you in the hope you could recommended an antidepressant which will not impact on restless leg. I do appreciate all the help you give me and hope it will help others in the same situation who read this.

[SueJohnson in reply to Thebarber]

Trazodone is safe. So is Wellbutrin but doctors won't usually prescribe it for depression.

[sigurdur in reply to Thebarber]

After my war with pramipexole I got really down to the point I was thinking of what I would need to do to exit without causing to much problems for my family and work. I started doing the Wim Hof method, vigorous breathing exercises in the morning and cold exposure. This has changed everything. I am still dealing with RLS and the aftermath of prami, but I am no longer depressed nor anxious.

[Simkin]

I too had it prescribed it this way but nothing worked until Sue & Joolsg said no point taking it in morning, so I started split dose in the evenings.

[RLS4Life]

I have lived with RLS for as long as I can remember. Over the years the doctors have prescribed multiple different medications. The only ones that have worked for me are Pramipexole and hydromorphone. I have been prescribed gabapentin, but it did not help. I don't seem to have had issues with augmentation. I may have had some withdrawal symptoms. The addition of hydromorphone with pramipexole was a definite help; I was able to cut back on the pramipexole from 3 milligrams or more a day to 2 mg. Unfortunately, my GP retired without a replacement so I'm unable to get the hydromorphone at present. Currently, I am taking 1 1/2 to 2 1/2 mg a primipexole per day; 1/2 - 1mg in the morning and 1-2 milligrams per day in the evening. Marijuana also helps.

[Purpleyam in reply to RLS4Life]

Hi RLS4Life, where are you in Canada? I'm in Calgary and have found an excellent Sleep Specialist doctor that is knowledgeable about RLS and the Mayo Algorithm treatment schedule. His name is Dr. Joseph Askin. Unfortunately you are on a very high dose of Pramipexole, the max dose is .5mg. I found that Pregabalin or Gabapentin didn't work until I weaned off Prami. To support your slow reduction of Prami you'll benefit greatly by taking a low dose opioid. I was given Tramadol, which doctors here are not so afraid of prescribing (temporarily) at first. I now manage quite well on 50mg Tramadol a night, with 1000mg Gabapentin split in 2 separate doses. I wish you well in your journey to get off DAs. It's worth it!!

[RLS4Life in reply to Purpleyam]

I am in the BC Okanagan. Is DA dopamine agonist?

[Purpleyam in reply to RLS4Life]

Hi RLS4life, Yes correct about DAs.

[SueJohnson in reply to RLS4Life]

Purpleyam is right. You are on way too much pramipexole - from a low of 3 times the maximum to 6 times the maximum which means you are suffering from augmentation and need to come off it. And as Purpleyam said gabapentin won't help while you are on pramipexole, and even if you took it before you were on it, you may not have taken enough or in the right way. And you definitely need a low dose opioid to help you come off it.

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.

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 or you may be able to reduce more quickly. 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.

Ropinirole 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 but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

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 although it won't be fully effective until you are off it for several weeks. 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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

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, C, 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. Keep a food diary to see if any food make your RLS worse.

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 also know of some other knowledgeable doctors in Canada so where do you live?

[RLS4Life in reply to SueJohnson]

Firstly, why are you so against pramipexole? I am on another medication the deals with dopamine deficiency. When I had a GP, I took him all kinds of reviews and reports from the Mayo clinic and others. He dismissed then it's just another theory that had not been proven but his knowledge. My ferritin has been as low as 4 and is currently at its highest, in the 90s. I recently had three Iron infusions it took threats of suicide to get these. Prior to the iron infusions my character was between 20 and 30. I have tried many of your suggestions, such as exercise and watching what I eat. Exercise only helps while I'm doing it and as soon as I stop and sit down my RLS back. At present, I do not have an GP and I am unable to find one.

[sigurdur in reply to RLS4Life]

Pramipexole is fantastic until it isn't. It worked well for me in the beginning until I augmented on it and it made my life a living hell. I've been off it for 8 months and I am still dealing with the aftermath. This is not the experience of a few, but most people that go on DAs.

[SueJohnson in reply to RLS4Life]

What is the other medicine you are on that deals with dopamine deficiency?

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. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

And you are taking way too much pramipexole as I stated above so you are already suffering from augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

I will have the name of a doctor in British Columbia who can help you shortly.

[RLS4Life in reply to SueJohnson]

The other medication that affects dopamine is methylphenidate.

I have had the symptoms that you list as augmentation symptoms since before I started primipexole.

I am still I not clear why primipexole is so disliked on this forum

[SueJohnson in reply to RLS4Life]

You could put up a post asking that question. You will get lots of answers.

[SueJohnson in reply to RLS4Life]

If you still need a new doctor, I have the name of one who is very knowledgeable about RLS because he has it too. Dr. Jason Valerio a neurologist at UBC in Vancouver 2194 Health Sciences Mall, Vancouver, British Columbia, V6T 1Z3, Canada [phone]

I know that is a long way from you but he probably offers teleconference so you wouldn't need to physically go there.

[5reza]

I have been asked to comment as I am on pramixole. I have augmentation, as a result, over 15 years my doctor increased dose from 0,18mg to 0,35mg then 0,52mg. I tried to wean off last year without success, so I am interested to hear how you managed it. I tried Gababertin without success but at a low dose.

Last year as augmentation symptoms increased, the neurologist gave me Pregabalin at low dose with reduced pramixole, resulting in months of sleepless nights. A change of doctor and increased Pregabalin helped, but I was back to my dose of pramixole. I could not be weaned off pramixole as codeine or opioids were not an option as I have asthma.

In desperation, I changed neurologist and I was given Pramixole Retard at 0,52mg which he said was a better option to limit augmentation, plus pregabalin. As my symptoms start in early afternoon thanks to augmentation, I take 50 mg Pregabalin late morning, 0,52mg pramixole retard in the afternoon, and 100mg Pregabalin in the evening. I started sleeping through the night which was an amazing relief.

Note: I put an alarm on my phone for my 3 doses. RLS symptoms start at night when I delay taking a dose on time. If I still have RLS at night, I take an extra 0,18mg pramixole as I just cannot go through the torture of not sleeping that I experienced in last years. OK to do this, but only occasionally when necessary.

This year I also tried extra iron by infusion without success; my iron levels are within normal range. Maybe I should have been given extra iron at start of symptoms, but with augmentation my symptoms are really strong now.

Problem is, doctors and some neurologists know nothing about RLS. My doctor has now apologized for her lack of knowledge on RLS, despite prescribing pramixole for 15 years !!! I had sent her the Mayo Clinic RLS protocol, etc.; information that I received thanks to this forum.

[SueJohnson in reply to 5reza]

Pramipexole retard is just the extended version of pramipexole and will definitely lead very quickly to augmentation. You can wean off the pramipexole retard but first you need to switch back to the regular pramipexole as the retard ones can't be cut. Then ask for a prescription for the .125 mg pramipexole.

To come off pramipexole reduce by half of a .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. Cannabis can help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it

If that is too much to reduce you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Take your time and you will get off it.

You can do it. It is hard but once off it the pregabalin will really start to help and you can increase it as you know from the Mayo Algorithm.

You may have already seen this but in case not. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

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, C, 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. Keep a food diary to see if any food make your RLS worse.

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.