Advice on Gabapentin for RLS

[Odinboy]

Hi everyone, been reading the posts and all very helpful..Things my first..😀 I have suffered from bad RLS for a few years, prescribed pramipexole since 2020. This did initially work immediately, however the dosage needed to be increased regularly until I reached augmentation, had an appointment with a neurologist, who took me off them..He prescribed clonazapime 1 x 100mg morning and night, with gabapentin if required. Unfortunately them both combined made me very sick, therefore continued with the clonazapime. Only taken for a couple of weeks, however didn't help my RLS, only made me groggy but couldn't sleep..Anyway last week came off the clonazapime and have started taking gabapentin..Started on the 10th September 100mg which worked..Since then, I've had to increase and now take 100mg morning and 200mg in the evening.. I know everyone is different, however just wanted advice on this medication, how much is advisable to take and the results, as docs don't really seem to have much knowledge..Apologise for long post and thanks in advance

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Congratulations on getting off the pramipexole. I know that was not easy.

You don't need to take the gabapentin during the day. Doctors prescribe it that way because its main use is for neuropathy and they don't know any better. Your symptoms should only be at night.

Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason. 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 at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

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, 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back 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.

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.

[Odinboy in reply to SueJohnson]

Hi Sue, thanks so much and for the welcome and for providing me with so much advice..My name is Lorraine (female) from Glasgow, Scotland. I have not had my ferritin levels checked, apologies for my ignorance but don't even know what this is.. I will however contact the GP and arrange tests..I take estrogel (HRT) which i apply in the morning, have a weighed blanket, use my cold water and ice lumi, which really helps but usually in the middle of the night, which isn't ideal and use a topical magnesium spray..I have tried the thermapulse, however they didn't work..Sue, any ideas how long it takes for pramipexole to completely be out your system? The GP has informed me it will take a couple of months..yeah great forum..I would go with the advice on here, oppose to the my GP as unfortunately, they do not have enough information on treating this condition..Im going for a CT scan on Thursday, unsure what that would show..thanks

[SueJohnson in reply to Odinboy]

It takes at least several weeks for the pramipexole to leave your system and can take longer partially dependent on how long you took it and how much you took and how quickly you came off it.

Ferritin is a protein that stores iron in your cells. It is an indirect measure of how much iron gets past the blood brain barrier and into your brain where you need it.

[Odinboy in reply to SueJohnson]

Thanks Sue

[DesertOasis in reply to Odinboy]

Hi Odin. Did your RLS begin or worsen when you started the HRT?

[Odinboy in reply to DesertOasis]

Hi there, I'm actually not sure..Been on HRT for 7 years and tried other medication prior to pramipexole which I started in 2020 so possibly a side effect ..

[DesertOasis in reply to Odinboy]

If it were me (and you’re not me) I would ween off the HRT. You can always go back on if there’s no improvement.

[Odinboy in reply to DesertOasis]

I've been thinking about it to be honest as that's me 7 years or so on hrt. Maybe worth a try..thank you..

[Birdland in reply to Odinboy]

I agree that it would be worth a try to stop HRT for a while to see if your RLS symptoms improve. For me, HRT was a major RLS trigger. Good luck.

[Kailua808]

hi there let me help you!

my name is Roxann. I live in Honolulu and I have had RLS for well over 50 years. In the beginning, it was Ropinirole. Took those for years and we know how help at all haven’t slept for years and years and years only maybe two hours and night if I am lucky. From there, we went to miripex of which I also took for many years to no avail. Nothing worked. I tried everything. I’d stay up all night just like the RLS magazine says called the night walkers because that’s what we are. Anybody at RLS is a nightwalker.. I was finally able to find what helped me doctor was with Kaiser Permanente maybe four years ago and since then I really haven’t had RLS that much hardly ever 99% of the time I don’t get it.

My new Medication that works!! I take one 500 mg of Pramipexole in the morning with one 500 mg of Keppra (leviteracetam). And in the evening no later than I say 7:30 PM I would take the same dosage , one of each. It works trust me talk to your doctor to give you a prescription for both. You won’t forget it your life will change. You will actually be able to sleep.

good luck, Roxann Williams 🌺

[sigurdur in reply to Kailua808]

I think maybe you did not mean to write 500mg of Pramipexole.

[SueJohnson in reply to sigurdur]

No - see my reply to her.

[SueJohnson in reply to sigurdur]

I said see my reply to her but apparently I didn't click reply after I wrote it because it wasn't there, but I have redone it.

[Odinboy in reply to Kailua808]

Thanks Roxann but I'm just off pramipexole after 5 gears so wouldn't take this again..That's great it works for you.. thanks

[SueJohnson in reply to Kailua808]

I assume you meant pregabalin since the maximum amount of pramipexole is .5 mg and you were on mirapex before which is pramipexole.

However you don't need pregabalin both in the morning and the evening since RLS occurs only at night unless you are augmenting on a DA. It is often prescribed that way by a doctor who is not familiar with RLS since pregabalin was originally and still is prescribed for neuropathic pain which is all day.

So I would suggest you slowly come off your morning dose by reducing by 25 mg every 2 weeks. Don't reduce any faster or you will have withdrawal effects.

[violetta254]

I read the study about Keppra and it involved two patients who were weaned off of pramipexole. Sounds interesting except the part where you are continuing pramipexole. Your dosage sound way off. Do you mean .5 pramipexole? I hope it continues to work but augmentation usually follows long-term pramipexole use. Btw, a gentle reminder that I hope we can all endeavor to avoid telling people what they should take or do and rather to just describe our own response to a medication or activity that helps us.

[SueJohnson in reply to violetta254]

See my reply to her.

[SueJohnson in reply to violetta254]

I said see my reply to her but apparently I didn't click reply after I wrote it because it wasn't there, but I have redone it.

[dklohrey]

As you say everyone is different. Have had RLS for years. Currently take 1200 mg. I noticed that Sue Johnson entered a comment. She is excellent for advice on this topic. Good luck.