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Restless Legs Syndrome

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Melatonin

Truthsword profile image
18 Replies

Just wanted to put this out there....

I am currently trying to fight Requip augmentation with Gabapentin...well, actually it wasnt working,so im trying to come off both! Couldn't sleep last night, what's new, and i had to take the old 1mg dose of requip....and.. 40mg Melatonin. I am into the afternoon of the next day.. still cant wake up. But i have no augmentation symptoms as i am resting today. Napping was always impossible. My cat and i are spending quality time together. Let you know what happens tonight. I am not clear headed, nor do i WANT to do anything (not me at all). But no RLS!!!!

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Truthsword profile image
Truthsword
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18 Replies
Joolsg profile image
Joolsg

Gabapentin doesn't stop the increase in severity of RLS on Requip. It really starts to help about 3 weeks after you're completely off Requip. So stay on gabapentin, take only at night and start to slowly reduce requip by 0.25mg every 2 weeks. Ensure your serum ferritin is above 100, preferably 200 as that can help reduce severity of augmentation for some.

Melatonin usually worsens RLS for the vast majority so I am surprised it seems to help you.

Truthsword profile image
Truthsword in reply to Joolsg

i have a video apt with a neurologist at the Jacksonville Mayo Clinic next month. Gabapentin has been ineffective (600 mg q pm) i had to increase requip after approx 3 weeks of gabapentin. I read elsewhere what you said about melatonin augmenting symptoms...it is puzzling. Thanks for your input.

Joolsg profile image
Joolsg in reply to Truthsword

Try not to increase Requip. You're trying to get off the stuff. With every reduction in requip, the RLS flares up again and most people need a low dose opioid like tramadol, Oxycontin or codeine to settle the flare up. Cannabis with at least 20% THC can also help. Keep reducing slowly, 0.25mg every 2 weeks.

Hopefully when you see the neurologist at Jacksonville Mayo, he or she will prescribe the necessary low dose opioid. They will also consider methadone or Buprenorphine if gabapentin doesn't cover your RLS once through withdrawal.

Make sure the neurologist is familiar with the Mayo Clinic Algorithm on RLS. There was someone recently on the forum who visited a Mayo Clinic but the neurologists were unaware of the algorithm or that dopamine agonists were no longer prescribed as first line treatment.

Truthsword profile image
Truthsword in reply to Joolsg

Thanks i will mention it. I did reduce Requip last night from 1 mg. To .75.mg and had a grest night with just 10 mg. Melatonin and 200 mg Gabapentin from 600. Plan to reduce it more tonight....i want to go off all of it !

Joolsg profile image
Joolsg in reply to Truthsword

Reduce one drug at a time. Very slowly.

If you have RLS, you will probably need meds for life. So reduce requip first, see how you feel. Gabapentin can help many people once they're off Requip. Gabapentin takes 3 weeks to become effective and won't stop withdrawal symptoms. But it does work for the vast majority once they're completely off Requip

booras profile image
booras in reply to Joolsg

for me personally, cannabis, alcohol and melatonin all made the rls worse so you may be helping your symptoms in some areas but fighting yourself in others…

SueJohnson profile image
SueJohnson in reply to Joolsg

That's true even at the Mayo Clinic in Rochester, MN.

SueJohnson profile image
SueJohnson

To follow up on what Joolsg said. Do reduce by .25 mg 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. But in the long run, you will be glad you came off it. On the gabapentin the beginning dose is usually 300 mg . Start it 3 weeks before you are off requip although it won't be fully effective until you are off it 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. 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 of gabapentin 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 daily."

Audrina1209 profile image
Audrina1209 in reply to SueJohnson

Sue, I am taking 400mg capsules of gabapentin x 3 while trying to come off Sifrol..down to 1.5 tabs..is it ok to take the 3 x 400mg gabapentin in one go 6 hrs before bedtime?..would appreciate your advice thank you..I need to go back to GP to get some 100mg to increase gabapentin gradually.

SueJohnson profile image
SueJohnson in reply to Audrina1209

I wouldn't advise it By taking all of it 6 hours before, they will wear off sooner than you want. Since you only have 400 mg capsules then you could try 400 1 to 2 hours before bed, one 400 mg capsule 4 hours before bed, and one 400 mg capsule 6 hours before bed, but you might ask your doctor for 300 mg capsules, or possibly your pharmacy would exchange them.

Audrina1209 profile image
Audrina1209 in reply to SueJohnson

thanks

SueJohnson profile image
SueJohnson

Again to followup more on what Joolsg said: Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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 advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

SueJohnson profile image
SueJohnson

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 atHttps://mayoclinicproceedings.org/a...

grassgree profile image
grassgree

That's a high dose of melatonin. Most recommendations say not to exceed 5 mg. Also, you might find a delayed effect on RLS; i.e. you can take melatonin for a night or two without repercussions, and then you notice the RLS is worse. But the on again/off again nature of RLS makes it hard to determine a trigger!! So frustrating.

If you can get THC, you might try alternating that with melatonin. It really helps with sleep, but you build up tolerance over time.

Truthsword profile image
Truthsword in reply to grassgree

Thi low glutamine diet seems to even everything out.. Yesterday, for instance...no Cheetoes....MSG...no Campbels soup....no mushrooms, spinach, tomatoes....no fried foods...its the same diet for autism. I used to wonder why one day was worse than another with the same meds. Now its the meds that are the varisble. Worth a try. Can have romaine lettuce and most other veggies. Gor some reason, no dried fruit!

Retiredlady profile image
Retiredlady in reply to grassgree

I stopped taking cbd as it didn’t help at all with sleep or rls.

Dr has now prescribed 10 mg THC capsules to take with the cbd.She says I need to take BOTH.R u recommending that I take 2 thc capsules only and NOT every night?

grassgree profile image
grassgree in reply to Retiredlady

I’d follow your doctor’s advice. I don’t know enough.

DicCarlson profile image
DicCarlson

Way too much melatonin! To induce sleep 0.25 - 0.5 mg is enough. It's a hormone - more is not better!

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