Help please : Hi I had to come off... - Restless Legs Syn...

Restless Legs Syndrome

22,314 members16,370 posts

Help please

Rangers52 profile image
36 Replies

Hi I had to come off pregabalin 3 weeks ago because of the horrendous weight gain I have to say it was working well apart from the weight gain, I've had terrible nights ever since and I've tried cbd oil and a massage mat in bed, needless to say none have worked, im waiting to get blood results from the doctors to check my ferritin and in the mean time I'm swallowing zopiclone every night just to get a sleep, any advice would be grately appreciated thanks

Written by
Rangers52 profile image
Rangers52
To view profiles and participate in discussions please or .
Read more about...
36 Replies
SueJohnson profile image
SueJohnson

3 possibilities. Since pregabalin worked you might want try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Pregabalin is more likely to cause weight gain. I only gained 2 pounds on gabapentin. Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

If you find you also gain weight on gabapentin, come off it slowly to avoid withdrawal effects as you probably did with the pregabalin although since you won't be on it as long it will be quicker.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

The third possibilities is a low dose opioid although many doctors won't prescribe them.

I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

Rangers52 profile image
Rangers52 in reply toSueJohnson

Thank you I will speak to the doctor and see what she says x

Rangers52 profile image
Rangers52 in reply toSueJohnson

Hi sue I got my blood results the ferritin is 106 and my transferin is 2.39

DesertOasis profile image
DesertOasis in reply toRangers52

Ranger, are you still on the SSRI? Did you ever try taking the ferrous bisglycinate before bed?

Rangers52 profile image
Rangers52 in reply toDesertOasis

Yes and yes I take 20 mg at night. Are my ferritin and transferin level normal?

DesertOasis profile image
DesertOasis in reply toRangers52

I’m not familiar with what a healthy transferrin level is. Ferritin seems excellent. Ferritin has very little if anything to do with RLS. Try raising your nightly iron to closer to 50mg on an empty stomach about two hours before bed. The 20mg would likely be fine if you weren’t on the SSRI, but since you are, I think you’ll need more. You might also need a codeine chaser.

Rangers52 profile image
Rangers52 in reply toDesertOasis

Thank you I will try that

SueJohnson profile image
SueJohnson in reply toRangers52

Your ferritin is just barely OK. Some experts think you need to raise it to over 200. Unless the iron at night as suggested by DesertOasis stops your RLS I would suggest you try to raise your ferritin more.

Take 50 mg to 75 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption.

Take it every other day, as research has shown more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

Your transferrin is fine. Do you know what your transferrin saturation (TSAT) is?

Rangers52 profile image
Rangers52 in reply toSueJohnson

Thank you, how long will it take to notice if raising the iron has worked?

SueJohnson profile image
SueJohnson in reply toRangers52

For DessertOasis's method which works for some but not most, it should stop the RLS that night, so you will know if it works after one night. For the normal method as I described it will take up to the 3 months.

DesertOasis profile image
DesertOasis in reply toSueJohnson

Well I think it works for most. Many more than infusions, would you not agree? Isn’t it downright miraculous just how often it does work?

DesertOasis profile image
DesertOasis in reply toRangers52

The raised amount of ferrous bisglycinate should provide relief that very first night. If not come back on here and we’ll talk about codeine or switching out your SSRI.

Rangers52 profile image
Rangers52 in reply toDesertOasis

Ok thank you

Rangers52 profile image
Rangers52 in reply toDesertOasis

Definitely an improvement last night, not completely eliminated but it's a start

DesertOasis profile image
DesertOasis in reply toRangers52

Try 60mg of iron and not going off but lowering the SSRI.

Rangers52 profile image
Rangers52 in reply toDesertOasis

I've halved the paroxetine today so now taking 10mg will see how I go

DesertOasis profile image
DesertOasis in reply toRangers52

How has it gone, Ranger?

Rangers52 profile image
Rangers52 in reply toDesertOasis

Really well the doctors gave me ferrous fumarate because the other one was causing toilet issues and I've had 2 nights rls free so I'm extremely grateful to you for your advice, I've got 3 months supply and then another blood test

DesertOasis profile image
DesertOasis in reply toRangers52

I think it’s a combo of the iron and lowering the SSRI. Congrats!

Rangers52 profile image
Rangers52 in reply toDesertOasis

Long may it continue

Rangers52 profile image
Rangers52 in reply toDesertOasis

Bad night last night, not sure why as I didn't change anything yesterday

DesertOasis profile image
DesertOasis in reply toRangers52

Did u eat late? Plus the antidepressant is a wild card.

Rangers52 profile image
Rangers52 in reply toDesertOasis

Not later than usual, will keep going with the tapering and hopefully I will eventually get tgere

Rangers52 profile image
Rangers52 in reply toDesertOasis

My doctor gave me 210 mg of ferrous fumarate is that the equivalent of three 20mg tablets of ferrous bisglycinate?

DesertOasis profile image
DesertOasis in reply toRangers52

Probably. Both are about 300% of the RDA? Bisglycinate is more bioavailable and less constipating. Yes, keep going!

Rangers52 profile image
Rangers52 in reply toDesertOasis

Ok so the fumarate has caused serious stomach issues and bloating so I'm going back to the bisglycinate should I take 3?

DesertOasis profile image
DesertOasis in reply toRangers52

Yes, three. Then when you’re doing really well you can think about cutting back to two.

Rangers52 profile image
Rangers52 in reply toSueJohnson

No but I can ask what it was

SueJohnson profile image
SueJohnson in reply toRangers52

You do need to wean off the Paroxetine as it is likely making your RLS worse which you don't need. What are you taking it for?

Rangers52 profile image
Rangers52 in reply toSueJohnson

Depression

SueJohnson profile image
SueJohnson in reply toRangers52

I gave you a recommendation for either Wellbutrin or trazodone which won't make your RLS worse. Was there a reason you don't want to switch?

Rangers52 profile image
Rangers52 in reply toSueJohnson

My doctor wouldn't switch it

SueJohnson profile image
SueJohnson in reply toRangers52

Show him this article. Bupropion mentioned in the article is another name for Wellbutrin. jabfm.org/content/24/4/422. Paroxetine is specifically mentioned as well as SSRIs which is what it is.

Rangers52 profile image
Rangers52 in reply toSueJohnson

Ok I will thank you

ChickenTwisty profile image
ChickenTwisty

It seems your question is about sleep now. Compression or lower leg stimulation, avoiding caffeine, alcohol, and nicotine, consider medications that might exacerbate symptoms (SSRIs, SNRIs, neuroleptics, dopamine-blocking antiemetics) all have a reasonable level of science behind them.

Makes sense to follow the science first. A lot of the other methods mentioned are anecdotal at best. Some swear by these others and to be fair it maybe the science simply has not done. I for one found hot baths and a wee choof to provide some relief, all be it somewhat short lived.

Iorn levels do have science behind them, and it doesn't hurt to try, sounds like you've had the test and waiting for results, which is good because low and high iorn can point to other conditions which may be masked if you supplement it.

In terms of iorn the strongest science suggests aiming for ferritin > 100 µg/L (some resources say 75 ug/L), and/or transferrin saturation > 20%.

Rangers52 profile image
Rangers52 in reply toChickenTwisty

I bought some cool pads for my legs which have been a bit of a relief, it's just going to be a long journey getting off the paroxetine as I've been on it for so long

Not what you're looking for?

You may also like...

Gabapentin vs Pramipexole Help please!!!!

Hi all. Im suffering terrible with RLS every day. I also suffer with really bad leg pain. I work...
Jamhulio profile image

Medication help

Hi, all I have been on Gabapentin 900mg for RLS for a few months now. I was referred to Neurology...
Jamhulio profile image

Help please.

I have recently changed from 1200 Gabapentin to 250 Pregabalin and am sure I have read on this site...
Mulberry100 profile image

Help please

Hi all, especially Sue and Joel's as I'm hoping you can help again. I've been absolutely fine for...
Cobobay profile image

Still Confused Please Help

Hi Everyone, There are many on here who have helped me previously so my sincere thanks for to you...
Kempojj profile image

Moderation team

Kaarina profile image
KaarinaAdministrator

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.