I’ve now been on Pregabalin for some time, every six weeks or so having to increase the dosage, I’m now on 450mg my doctor says this is the maximum
I split the dose 250mg approx 7pm then 200mg 9.30pm I’ve only been taking this dose a couple of weeks but already I can feel my restless legs coming on at 1am, I have to get up walk around let the dog out for about 10mins then go back to bed, I can get back to sleep most of the time.
Where do I go from here, I have another appointment in a week with my doctor, my neurologist gave the doctor a list of medications for me to try, I’ve now been through this list, my last appointment at the doctors they were talking about adding tramadol or co coda mol I don’t want to be dosed up anymore than I am, the Pregabalin is not without its side effects.
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Hublot
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That is very strange because looking back at you previous posts and replies pregabalin works and then it doesn't work and adjusting the dose, one time downwards from what didn't work, it works again. Are you taking any other medicines? If so they might account for this. Otherwise it is likely your dopamine receptors are damaged from your years on pramipexole.
You need to come off it very slowly like 25 mg every couple of weeks to avoid withdrawal symptoms.
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.
If that doesn't work then it is time for a low dose opioid. Tramadol is not good for the long term as it can lead to augmentation. cocodamol is a weak opioid. 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
Hublot, I don’t understand, you were taking nightly iron and doing well (though you had to double dose in the beginning) and you were going to recommend it to your son?
Yes, you must. Unfortunately, this site makes you believe that what matters is raising your ferritin levels. It doesn’t matter in the least. All that matters is to raise that free, unstored iron in your blood and to raise it at night. Every night!!! If more people on this site would talk about this then people like you wouldn’t have to suffer so much.
Hi, 2 nights taking the iron, what a difference why did I ever stop!! Do I just carry on taking it for ever, no reducing the amount, as stated before my tablets are 28mg and I take 2 giving me 56mg per day.
I will carry on with the pragabalin at 450mg see how it goes with taking the iron, hopefully If all goes well try and reduce the amount of pragabalin.
Sooooo thrilled for you, as I was last year when you had the same result the first time you tried the ferrous bisglycinate.🌈💥💫✨It will NEVER stop working for you. And yes, when you’re ready, try reducing Pregabalin. I truly believe the iron is all you need, but you must go slow reducing the Pregabalin. Sadly, the night you stop the iron is the night your RLS symptoms will return. You could try building up your receptors by taking magnesium glycinate by day. Day by day, week by week your receptors MAY slowly build up such that you no longer need the iron or the Pregabalin. Hopefully Chris Columbus will see this reply and explain more. His RLS is mostly gone via magnesium. GreekStudent as well. 👯♀️
If you decide to come off the pregabalin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects.
Since you may undertake an oral iron regimen, I want you to understand a little bit about why it works so well. Here’s my reply to another member:
“Flora, serum iron is important in the sense that it is much lower at night (in all humans) and that is the reason RLS acts up at night.
Serum iron is the grease and glue that keeps people’s dopamine receptors chugging along. We rely VERY heavily on that serum iron because the RLS brain (not body) has a problem storing iron for a rainy day, or should I say night ;). The non-RLS world has plenty of “brain ferritin.” Tests on the RLS brain have shown many of us have close to 0 “brain ferritin”, but plenty of unstored brain iron - maybe even more than the non-RLS world. Serum iron is simply this kind of free-floating iron that isn’t stored. Sadly, no matter how high that free-floating brain serum iron is by day, it drops precipitously at night and we get symptoms of RLS. Brain and body serum iron starts to drop early evening and is lowest at midnight.
The non-RLS world can make a withdrawal from their plentiful “brain ferritin” when brain serum iron falls… and not even know what RLS stands for. I think I hate them. We on the other hand are left high and dry.
Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS.
All hope is not lost. MANY many people find relief by taking around 56mg of ferrous bisglycinate, about two hours before bed, on an empty stomach. It should relieve your RLS symptoms that very first night.
Hi Annie, I recommend what Hublot is doing - 56mg of ferrous bisglycinate on an empty stomach two hours before bed. The first night you take it I recommend reducing the DA ever so slightly. Or if you’re daring, by .25. You can always take the other .25 if the RLS is still there. If you’re on HRT or an SSRI or a calcium channel blocker the iron is less likely to completely get rid of the RLS.
Since you may undertake an oral iron regimen, I want you to understand a little bit about why it works so well. Here’s my reply to another member:
“Flora, serum iron is important in the sense that it is much lower at night (in all humans) and that is the reason RLS acts up at night.
Serum iron is the grease and glue that keeps people’s dopamine receptors chugging along. We rely VERY heavily on that serum iron because the RLS brain (not body) has a problem storing iron for a rainy day, or should I say night ;). The non-RLS world has plenty of “brain ferritin.” Tests on the RLS brain have shown many of us have close to 0 “brain ferritin”, but plenty of unstored brain iron - maybe even more than the non-RLS world. Serum iron is simply this kind of free-floating iron that isn’t stored. Sadly, no matter how high that free-floating brain serum iron is by day, it drops precipitously at night and we get symptoms of RLS. Brain and body serum iron start to drop early evening and are lowest at midnight.
The non-RLS world can make a withdrawal from their plentiful “brain ferritin” when brain serum iron falls… and not even know what RLS stands for. I think I hate them. We on the other hand are left high and dry at night.
Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS.
All hope is not lost. MANY many people find relief by taking around 56mg of ferrous bisglycinate, about two hours before bed, on an empty stomach. It should relieve your RLS symptoms that very first night.
It’s virtually impossible for Tramadol to cause augmentation. Just the opposite, it may up-regulate the D2/D3 receptors. researchgate.net/publicatio...
From that article: Autoradiographic analysis of [(3)H]7-OH-DPAT and [(3)H]raclopride binding revealed a significant up-regulation of dopamine D2 and D3 receptors in the rat nucleus accumbens upon repeated treatment with tramadol.
Do you know what up-regulation means? It means everything to us with RLS, especially post-DA. To scare someone off from its use is not good.
I'm only going to reply once to this because we disagree and probably never will convince the other, but the Mayo Clinic Updated Algorithm on RLS which is the bible on treating RLS says "Tramadol is the only nondopaminergic drug associated occasionally with the development of augmentation."
I’m not seeing your quote in 2021 edition. Not even as a footnote. Is that from 2013 edition? Here it be, see for yourself: rls.org/file/general-free-p...
See page 6 of the 2021 edition "Intermittent use of low-potency opioids usually before bed can be effective. Doses of 30 to 90 mg of codeine, in combined preparations with acetaminophen, or 50 to 100 mg of tramadol can be taken before bed or during the night. Constipation or nausea may occur. Tramadol can rarely induce seizures and is the only nondopaminergic drug associated occasionally with the development of augmentation."
“Occasionally” is the key word. There have been exactly two reported cases since inception of this old drug. To dissuade people from its use is not a good thing. And to not even preface it with its rarity and unlikelihood is worse still.
I have been on a combination of slow release Morphine sulfate ( ms contin) and ropinerole for 8 yrs now and now that I have a reliable Doctor who will regularly prescribe these two together I am 90 % and some days completely jolt free. I take the morphine late afternoon which helps me relax after climbing trees all day as I am a 70 yr old arborist. I have found the two drugs work together and have had no augmentation of the ropinerole. I have taken all the routine opioide questionnaires for addiction and luckily I am not prone to addiction . I do constantly remain aware of that risk and it turns out the Morphine has saved my life. In my case it has been a life saver. I wish others struggling with rls could find the releaf I have found. Discuss with your Doctor.
If 450mg of pregabalin isn't stopping your RLS then it doesn't seem to be the medication for you. Given that you have been an increasingly high dose for approximately 10 months, it is advisable that you take your time coming off it to avoid withdrawal effects (eg. increased restless legs, insomnia, heart palpitations, chills/sweating, brain fog/confusion etc). The rule of thumb is to reduce your dose by 10% per month. So from 450mg, to 405mg to 364mg to 328mg and so on.
Opioids would be the next class of medication to try but it may take some trial and error to find the one that works for you.
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