I have just been prescribed this drug as my RLS has got so bad in the last 6 months. I’ve had a blood test and my gp said all normal, but I have not had the fasting overnight blood test ( I didn’t know about it till I went on this forum). I am worried about taking this medication when I see side effects and it is used for epilepsy. Can anyone put my mind at rest a little bit.
On a side note 6 years ago I went through chemo and whilst going through it never once did I experience restless leg, Has anyone else had this experience?
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Catbennie
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I wouldn't worry about gabapentin and its possible side effects. It is the first line treatment for RLS. If your find you can't live with them, you can always come off it slowly without any withdrawal effects. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 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." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them and don't take calcium within 2 hours. 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 at Https://mayoclinicproceedings.org/a...
Was your ferritin tested when you had your blood tests? If so what was it? Ask your doctor for it if s/he didn't tell you. If you post it here we can give you some advice. Doctors will tell you it is normal, but what is normal for others is not normal for those of us with RLS. Also were you taking iron tables or a multivitamin with iron in it 48 hours before the test
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I was thinking of taking an iron supplement? Would that be wrong if I am taking Gabapentin. Gp has started me on one tablet at night then gradually going up to three through the day, Probably one won’t make much difference but I will persevere as long as side effects are not bad. I will also get a copy of my blood test. Thanks for all your help
You can take iron with gabapentin, but you really need to find out what your ferritin is as you may not need it. If you do take it, take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, 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.
in my blood test result it stated my serum ferritin is 75.5 ug/L the report does state normal. Just wondering if I should take iron supplement to bump it up a bit. Not sure what to do
Yes. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. As mentioned above take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, 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 or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Also antacids interfere with the absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.
Gabapentin seems to be working for my restless leg but it is making me constipated do you think this will calm down and could you please give me some recommendations, Do you think the iron tablets will make it worse ? Thank you
The iron tablets may make it worse. I would take the iron bisglycinate to avoid that possibility. Yes it may settle. For constipation, drink lots of fluids and get plenty of moderate exercise. Then there are prunes or prune juice, psyllium husk, Triphala - a 3 herb Ayurvedic formula, oolong tea, Smooth Move tea and magnesium citrate. If it doesn't settle after a few weeks and those suggestions don't work, prescription drugs for constipation include Laxido (Macrogol, Movicol, CosmoCol, Molaxole, Molative), Dioctyl ( DulcoEase, Norgalax, Docusate sodium) and Polyethylene glycol 3350 powder packs which worked for me when I had constipation after surgery.
Add a thing with Sucralose to the No-no list. I wish you well on GABA. I couldn’t handle that but tramadol was a Godsend. No side effects. Learned about it on this forum. Never looked back.
It is a class IV drug and moved from V. Vicodin and Norco are class II. Yes there is potential for abuse of tramadol however I am taking less now than when started.
I’ve went a day or 2 without it (refill was late) and I had no major withdrawal like I did with Vicodin/ Norco. That was a nightmare. Tramadol is a “shit drug”(Dr in ER told me) for regular pain (back pain, sprained ankle, broken arm) but that’s how people with RLS stumbled upon it. Took it for an injury and it did not take away their pain from the injury but, rather, took away their RLS!
Anyway, that’s how I found it….On this forum and people saying how it helped them. My Dr gladly gives me this, knowing full well that I was addicted to Vics and Norco (went through a whole detox program on my own free will knowing that I was out of control) because she knows how much I suffer from RLS. Actually, since I was a child.
I’ve never had to up my dose like other stronger opioids. Sometimes I take less.
I’m so glad that I have no side effects from it like I did with requip, GABA etc. but that’s just my experience. Everyone is different. I wish you well.
Several people have mentioned that artificial sweeteners make their RLS worse, but unfortunately there are hundreds of things that do that to some people so to keep my list short I have only included things that many people find make their RLS worse. Thank you for the suggestion though..
Of course. I used to drink Powerade at times and anytime I did, my RLS flared up. So after a quick search, I realized that Sucralose was the culprit. Take care.
OMG, I'm so glad you saw this post. An October 2020 study in the Journal of Clinical Sleep Medicine says there may be a link to RLS and Stevia, which I use exclusively! Has been mentioned before on this site (5+ years), but that was before I joined. I now also see that saccharine and aspartame have been mentioned before.
Not truly relevant but my wife is diabetic so we have been using artificial sweeteners. Recently her specialist told us that artificial sweeteners were at least as bad as sugar but that stevia was safe. If you have diabetes and RSL you might have to do what I do and only drink water, I drink water because I believe there is enough caffeine left in decaf to upset my RLS
After coming off of ripinirole (not easy but glad I did it). I have been on Gabapentin for 4/5 months and it has helped me tremendously with RL's. I never get them but do get a tingle every once in a while. I don't notice any side effects except maybe memory but I am only 6/7 months out from Chemo, so it could be either one. Hope it helps you as much
It took me nearly a year to get off Neupro. My neurologist prescribed gabapentin to help in getting off Neupro, and I ended up going very slowly and had two infusions along the way to boost my ferritin level up asi stepped the decreases. At the end, I cut the last 1 mg patch into quarters to decrease by 1/4 every few weeks. My neurologist never heard of that, but he has now. I also took 2 hydrocodone 5-325dose and some nights used cannabis. It went surprisingly smooth for me. Now, seven months later, 1500 mg gabapentin, and some 100 mg Pregabalin have managed my RLS fairly well, until very recently. Sure enough, I found my ferritin level dropped again, to 57, and I’m scheduled for another infusion. Medicare covers it. I’ve been found to be iron deficient and I keep vigilant about ferritin levels. It’s worth it to be patient in reducing the ropinirole and avoid more stress. I’m better off now than I have been in years.
Hi how long did it take you to get off Ropinirole I have struggled I’m on 4mg(2tablets)at night tried coming off but boy it’s so hard lasted four days horrendous time had to go back to normal dose again the doctors say Ropinirole should be the very last drug to try so confused been nearly seven years now they said it would leave me but still got it
several on here will have more detailed info about getting off ropinirole and I used their suggestions. I was only on 1 1/2 mg a day and for 2/3 years. you have to go really slow 1/4 decrease and wait a week or two before reducing again. I had already started Gabapentin but it won’t work til completely off old meds. The hardest was last 1/4 and then 0. Didn’t sleep a lot ( cleaned or exercised) and then could sleep for 1/2 hours. I am retired so I didn’t have to be alert for a job. The last few weeks will be really hard, some take opioids or cannabis but I didn’t do them. Hopefully Sue or others will join in with more info. Good luck
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. To come off ropinirole, 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 or pregabalin which by the way helps with nerve pain, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective for RLS until you are off it for several weeks. But since you have nerve pain, I would ask to start it now. After 3 weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you although I would stop at 900 mg gabapentin (150 mg pregabalin) until you are off the ropinirole and your RLS symptoms have settled. 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. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them and if you take calcium don't take it within 2 hours. 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 at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
While I have read more reports that RLS symptoms were either unchanged or got worse during chemo, there have been occasional reports of relief during chemo. Whether this is an effect of the chemo itself or of a parallel treatment is unclear to me: for example, one person who reported relief from RLS symptoms was also treated with dexamethasone (for suppression of inflammatory and allergic disorders) at the same time and wondered whether that was what gave the relief.
Hi Cat, I have been on gabapentin for a few years and it does help my restless legs with only subtle side effects, I am on 600 mg, I was on 900mg but wanted to reduce this as I was quite lethargic and didn’t feel as responsive at work. Also less concerned/worried about things that I was once was… sometimes a good thing and sometimes not so great . The 600mg dose does not completely stop the rls but is enough to allow me to sleep. The sensations in my legs are almost completely eliminated with the gabapentin but I do have the sensations in my arms and shoulders. I also take iron and magnesium, I take the magnesium on a morning and although apparently there is little evidence to support magnesium as remedy I notice my symptoms can be much worse if I stop taking the magnesium for any period of time. I also take vitamin D as well. My experience with gabapentin is generally positive and keeps rls at an acceptable level I wouldn’t be concerned about the side effects, although I would prefer to not need anything to take some new miracle drug… if only augmentation with ropinerole wasn't a thing!
hi Jessey, what works for you then? Hope you are finding some relief. Not sure how i would get by without gabapentin although always thinking of options. I was looking at velvet beans or the tablet form to boost dopamine but haven’t done so as yet
I'm glad you found something that works for you. Just be aware of the signs of augmentation. And Gabapentin is now the first line treatment for RLS and may not have done anything for you, but does for many people including me.
I really wouldn’t worry about side effects. Your GP will start you on a low dose. And only take what you need. If the low dose works for you then don’t go any higher. I am prescribed 900mg for periodic limb movement when sleeping. My RLS rarely impacts me other than the deep ness of my sleep. I took 900mg and I’ve dropped down to 600mg because that’s all I need. It has been a game changer in terms of my sleep, which in turn helps my RLS symptoms. Win win.
I only took gabapentine for 10 days. 200mg at night.I couldn't handle the insomnia and anxiety and had to stop. I am still having side effects and it's been a week since I
stopped.
So many seem to get relief, I'd stick with it for awhile.
I've taken gabapentin for years ,no problem,but I'm not sure what would happen if I tried to stop?? I have neuropathy in my feet,( that's why I take it)
that’s always the worry when you get used to medication you start wondering what you would do without it, that’s why I don’t like taking these strong drugs but needs must sometimes
my experience with gabapentin it has been different because te original purpose was for the peripheral neuropathy I developed later the RLS but the dr gave me since the beginning a very high doses I never question him I didn’t know better and it worked for a while later everything changed both my pain and RLS an I started researching to find out what to do and I spoke to another dr about the withdrawal of half of gabapentin it took a while and now I am taking 1500 per day. Both conditions has worsened but all other medication gave me bad side effects and I trying acupuncture and some home remedies, supplements creams whatever I can find that can help, so good luck and hopping the medicine and whoever posted about stevia thank you I didn’t know I just recently started using instead of honey I will go back to honey
My mum is on 300mg of Gabapentin a day and it doesn’t really seem to be helping. The doctors upped it quite a bit but that caused her ankles to swell something terrible. She’s now back to one 100mg tablet three times a day. I guess each individual is different and it may work for you; just don’t take a huge dose and start at the minimum if you can to see if it helps. Wishing you lots of luck x
I had exactly the same experience as you when I had chemo about 10 years ago. My RLS dissapeared completely and only started up again some 5 months after it was finished. It's the only good side effect of chemo!
Hi Catherine, I have suffered with restless legs for 40 years, and the last ten years have been chronic. I Have tried most medications, and can only say I have been on Gabadentin for six months and it is the best thing I have ever done. I have relief from my restless legs and have suffered no side effects. That has been my experience but I know everyone is different. Good luck.
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