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
Help please : Hi I had to come off... - Restless Legs Syn...
Help please
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.
Hi sue I got my blood results the ferritin is 106 and my transferin is 2.39
Ranger, are you still on the SSRI? Did you ever try taking the ferrous bisglycinate before bed?
Yes and yes I take 20 mg at night. Are my ferritin and transferin level normal?
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.
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?
Thank you, how long will it take to notice if raising the iron has worked?
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.
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.
Definitely an improvement last night, not completely eliminated but it's a start
Try 60mg of iron and not going off but lowering the SSRI.
I've halved the paroxetine today so now taking 10mg will see how I go
How has it gone, Ranger?
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
I think it’s a combo of the iron and lowering the SSRI. Congrats!
My doctor gave me 210 mg of ferrous fumarate is that the equivalent of three 20mg tablets of ferrous bisglycinate?
Probably. Both are about 300% of the RDA? Bisglycinate is more bioavailable and less constipating. Yes, keep going!
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?
Depression
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?
My doctor wouldn't switch it
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.
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%.