My appointment with Prof. Walker at Queen Square for RLS is not until February next year, so moving to opioids is not an option until then.
In the meantime, since around July (after having been on Ropinirole for 15 years), I moved to taking 300mg Pregabalin of an evening ... which I then have to top up with 0.125mg of Ropinirole (Pregabalin on its own was just not effective).
However, the Pregabalin seems to be getting less and less effective. I might go to sleep for an hour at bedtime, and then wake up with RLS for a good two hours ... driving me bananas. I resort to either taking another 150mg Pregabalin with another 0.125mg of Ropinirole, or just another 0.125mg of Ropinirole on its own.
Does anyone have any comments or help please. With thanks as always, Sally
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Hi Sue ... I actually take 300mg Pregabalin at 7.00pm .... then go to bed at 10.00pm and take the first 0.125mg of Ropinirole. So yes, I do take it before I go to bed. Thank you.
Hi can you tell me again which blend of Kratom you use? I'm at my wits end after taking two different types of antibiotics, one of which I need to take long term. I know my RLS might settle a bit over the next month after taking a strong antibiotic for Cellulitis for a week, but it would be amazing to get any sleep at all , so want to give Kratom a go. I'm also taking opiates for arthritis and Crohn's disease which usually helps, but the antibiotics have upskuttled everything.
Since you are in the UK, you would order it as tea from that site in the netherlands. Any red strain should work; try red borneo or menga or bali or kali, etc. This should certainly give you relief and sleep until you figure out your long term plan. It is a form of an opiate though, so, perhaps your other opiates would work if you added a bit more? Glad you mentioned antibiotics to me because I was just on them myself and I feel my rls has been worse, as well. But I am still sleeping with the kratom and Delta 8 gummies. Sometimes I use Suboxone, which I have been trying to avoid for various reasons.
Let me know what other questions you have or if you try it out. I know a number of UK folks have ordered from that site. If they have capsules, you could try both the capsules and the powder. The powder works faster and the capsules are nice for longer sleep or to throw in your pocket. We need to be careful with all of these medications and I am unsure what is the safest. Hang in and good luck!
Mainstream medicine is not generally going to recommend it. As I said to you in my post, MANY people on this forum use it or have used it. My doctor was ok with it since it is lab tested by a third party. I suggested it because there is just no reason for anyone to suffer that much. But if you aren't desperate, then definitely do not try it.
I'm surprised you're waking up while on pregabalin as it usually helps with sleep maintenance.
I'm always particularly loathe to suggest increasing pregabalin dose beyond 300mg given my experience with daytime sedation and other bothersome side effects. Adding in another type of medication (as you are doing) is generally best for minimising problematic side effects with one medication.
If adding in the 0.125mg of ropinirole works for you, why not continue with that until your appointment in February?
An alternative to ropinirole is clonazepam. I take approx 0.125mg in addition to 300mg pregabalin when i need it. However, this also has a sedative effect.
Not wishing to be evangelical about diet but just to share my experience, i have been especially mindful of what i eat in recent months - attempting a cleaner diet with minimal additives/processing and low glutatmate - and as a result, find that generally I can rely on the 300mg pregabalin on its own.
Hi Amrob. Pregabalin has no effect on sleepiness in my case ... none at all. Which is why I take the additional Ropinirole - that does bring sleep almost every time, although not if my RLS is bad, and not for massively long periods. We have always been "healthy" eaters ... lots of home cooking with fresh ingredients. You can really tell a "good restaurant" and whether they use fresh ingredients or processed and packed stuff by how bad your RLS is afterwards! Warm regards.
That list is a bit different than the ones I have seen. Look for others and compare. Parmesan and walnuts top the lists I've seen, but also tomatoes, the riper ones are the worst, peas. I have found I can eat some questionable things earlier in the day. Like some tomatoes at lunch are okay; dinner not so easy to get by. Aged cheeses are all bad, but unaged cheddars and goat cheeses are generally better. No brie. I wonder if I was really really careful if I could get off Pregabalin. I think you are making a mistake thinking there should be a magic bullet. Some people get lucky--they aren't looking at this site. But many of us have to adjust our lives and thinking. I spent years thinking some pill would make me sleep peacefully. I went up on the Pregabalin with that theory. But the irony can be that daytime sedation, the usual side effect, gives you no life as you are so tired anyway you might as well not have slept. Now I have gone down to 100 mg. pregabalin a night. I have more PLMD -- BUT--I am more awake and feel more rested during the day (and frankly happier). I am very careful about what I put in my mouth in the evenings. Another thing that helps me, instead of walking the floor, is using hot shower hose on my legs (as hot as I can stand) before getting into bed, and, if the PLMDs are very disruptive during the night, getting up and repeating this. Finally, as you know, everyone is different and your glutamate triggers will be a little different than any list you find. (I can tolerate some of the foods you listed at anytime of the day.)
I had the same problem as you, I take Gabapentin , I started on 100mg and now take 1100mg, I’ve gradually increased because it stopped working after a few days. I waited until any side effects eased before increasing the dose. I had 8 nights straight sleeping without any twitching etc. Then a couple of nights waking at 2.00 or 3.0 am, sometimes paracetamol helps. I’ve stuck at 1100mg and I’m getting more sleep than I’ve had for weeks. If I wake in the early hours I go through my coping strategies the last being getting out of bed and dancing and stamping. My gp is useless so I rely on help from this site.
Hi Elsie - I think I am looking for the impossible ... ie 100% no RLS. I don't see why we should have to put up with waking at 2.00am or 3.00am (which I do as well) with a recurrence of RLS, and then have to rely on coping mechanisms. There should be, by now, enough knowledge on this disease to be able to provide us all with a good night's sleep every night. Ahh rant over.
I think there are too many other triggers that can set it off, I know that late night sugary things or more than one glass of wine can set mine off but for special occasions or when I just feel like it I accept I’ll have a broken nights sleep. I have a crazy mantra “ they’re not my legs they’re my sister’s (I go through a whole list) and I feel sorry for her” , it has proved to be a good distraction and keeps me calm, if it’s someone I don’t like it becomes I don’t feel sorry. I go to aquacise 3 times a week and that seems to help as well.
Why are you stuck at 1100 mg? And are you taking 600 mg 1 to 2 hours before bed and then 500 mg 4 hours before bed since it is not well absorbed above 600 mg?
Yes I split the dose as you have suggested. I’ve stuck at 1100 because I sometimes have difficulty with talking, it has eased so I’d rather wait to see if it stops completely. It can be very embarrassing, I either stutter or have difficulty finding the words. I am worried that taking another 100mg could make it worse.
hi sally, i am in that between stage awaiting a dr's appt also. My extra measures that help are: ice pack to the sacrum. I have one that is made of clay. I keep it in the freezer and it stays cold a long time, and does not "sweat". It helps a lot. Second, i practice a specific breathing technique that calms my nervous system, while i lie there on the ice pack. Breathing in and out thru the nose: in for a count of 4, hold for a count of 4, out for a count of 6 and then pause for a few counts. Repeat...this helps me go to sleep for a couple of hours till the worst of the RLS passes. Also i take a daily supplement of mag citrate, cal citrate and pot citrate. If i forget i am going to have a worse time.
Also, a member here made a post last summer. I cannot find it now, but it really helped me. Get rid of your non-stick cookware, and avoid all gelatin and collagen products...so not long simmering of meats or poultry, no long simmering of meat soups, or drinking broth. The other night i had a dinner out and it included risotto. I didn't even think about it. But i have had 2 really tough nights after that risotto...the broth.. eat only freshly cooked meats..no leftovers and avoid cured meats. Try this and let me know.
Hiya ... I always eat freshly cooked meats and never touch risotto ... am very careful ... much prefer just a good fresh steak or chicken ... But I will definitely try the breathing method. Thank you.
I am in nearly the same situation but sadly I have no solutions to offer. In my case I take a combination for gabapentin (300 mg at 6:30, 600 mg at 8:00) and 150 mg pregabalin at 8:45 with bed time being 10:00. I also take 0.125 mg of pramipexol at 8:00. I have tried different timings and this seems the most effective. Note that the absorption rates of gabapentin and pregabalin are different. Gabapentin reaches peak concentration in 2-3 hrs and pregabalin in 1 hr. Most nights I also wake after a sleep time that ranges from 20 min to 1.5 hrs with my legs twitching and I have to take 0.5 mg of ropinerole. I wait to take it because some nights I don't have PLM and I'm trying to minimize my intake of dopamine agonists. I primarily have PLM but also some RLS symptoms as well as insomnia. Between the lack of sleep and the medication side effects I feel as stupid as a stone. I honestly don't think that the gabapentin and pregabalin do anything for RLS/PLM. I have no idea why the gabapentin/pregabalin provides no help with my insomnia.
OK. I've been a bit reluctant to try this given some of the strains seem to have a stimulating action. The last thing I need late in the evening is something that stimulates my body/brain. Do you have a recommendation on type and how much?
I never feel stimulated by the red strains and I have not read of that on this forum when others use it. Try mitragaia.com and order red borneo or red bali or really any of the reds. One forum member takes 6 capsules of red menga every night. I would order both powder and capsules, but at least start by ordering the powder. You can sample small bags, too. Start with 1/2 of a teaspoon and see what that does within the hour. Then add another 1/2 teaspoon. I take 1 to 2 teaspoons in water and just keep it by my bed. I take capsules to elongate the sleep or to put in my pocket in the evenings-just in case. Good luck and let me know!
Teddi, do you feel any improvement in RLS symptoms now that you have been off the DAs for awhile. Are you still getting contraction/jerk/spasm when you lie down? I must say, it sounds like you’re doing better?
Hi!! How are you? Does it sound like I am doing better?! I have no idea?! oy-lol. I took the berberine every day for quite a while until TDay. I probably have 1/3 left of the second jar. Of course I missed days due to being unable to take it at night when forgetting. So over time I finished 1 and 1/2 jars or so. Not sure if it helped or not? I do still get the contractions if I don't take anything. I've been on antibiotics lately and I think that has made me get rls in the evenings, too. Not sure what to do now but I am still avoiding long term use of prescription opioids. Sometimes I cave and take the suboxone, which you really are not supposed to mix. But it does work if i dont take too much. Sometimes I get these intense sit-up stomach contractions that are so bizarre-from the suboxone. Maybe it is withdrawal from kratom or who knows? Thank you for checking in. I still have a couple of things to try-it seems. One I will be posting about-that I got from a naturopath friend.
PS-I have been fully off the DA's since May-so 6 months.
Fully off hormones since June.
(And mostly off DA's since August of 2021. Other than a few nights taking them here and there when I was cut off of methadone.)
*I need to go back to taking iron before bed. I haven't been doing it because I am always eating in the evening, Your 2 no-no's.
You are too funny. It just sounds like you are sleeping every night and living your life and really don’t get RLS during the day or evening time. And when you do get RLS it’s readily taken care of by the Kratom. Sadly, that’s about the most we with RLS can ask for. It seems like sometimes the iron works for you and sometimes not, but it’s always worth taking an hour before bed, even if stomach isn’t completely empty.
If you think back to how miserable you were right after the methadone then by comparison now might seem like Heaven.
Thank you! Honestly, I am the worst at evaluating myself sometimes. I will go back to the iron before bed-maybe that will help at this juncture. I am taking kratom and delta 8 every night and it works, overall. Though I worry if I am doing damage, so it doesn't feel like a good long-term plan.
Do you think I should get back on berberine? Thanks for giving me perspective and even remembering my journey! (One reason I was so miserable after the methadone cut-off is because I did not know what to do or take and was terrified of another bad withdrawal night. Thank god DoDah and others told me about kratom).
I think three months of berberine with a one month break then another three months might be worthwhile. Ultimately, I believe, there’s only one road for people who were on DAs and don’t want to go with opiates (and the gaba-esq drugs don’t seem to work) and that is to figure out a way to up-regulate their DA down-regulated receptors. Berberine is probably one way. Severe calorie restriction is another. As we discussed, the idea is to get your receptors back to pre-DA baseline.
It seems that even at baseline your RLS was pretty bad? At least bad enough to cause you to take the DAs for 25+ years. And now you’re older so even without the DAs your RLS would likely have gotten more severe. For all we know your receptors are already at baseline and now you need to figure out a nightly treatment that will do the least amount of harm and still allow you to sleep. I am not well-versed with pharmaceuticals for RLS or even substances like Kratom, other than the fact I am glad they exist
Thank you for the info! My rls was not bad at all. Sadly, I used Nyquil to sleep far more than one ever should. So of course that amped up my legs...I didn't know it was a trigger back then and it was a huge mistake to rely on that all the time, obviously.
Going by my 96 year old Mom, who has it occasionally and gave me my first ROP pill, baseline should be pretty mild for me. My niece also took ROP, but not for long, and had an infusion; she no longer has rls.
Hi Tanker1 ... I completely agree when you say that you "wait to take it because some nights I don't have PLM and I'm trying to minimize my intake of dopamine agonists". Which is what I do. I take the Pregabalin knowing full well that I will probably need to take Ropinirole at some stage during the night ... but I always hope that there will be the odd occasion when I don't ... But I know that Ropinirole is the only thing that really seems to stop the RLS and the only thing that causes me to go to sleep. Sending warm regards, Sally
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