I've suffered with rls for over 30 years which has gradually got worse and worse. I'm now 74. After taking dopamine agonists for years, then tramadol, codeine and trying Kratom nothing was working and my doctor and neurologist would and could not prescribe anything else. In the past I had tried Pregabalin but it made me very dizzy all the time and I put on a lot of weight very quickly, so I stopped it. I presumed that I had the RLS that needed buprenorphine or methadone, can't think of the name of it, which cannot be prescribed in Greece, where I live. In desperation I tried Gabapentin, thinking it was the same as Pregabalin, but thank God that I did as it seems to be working. I'm taking 2100mg a day in 4 doses. I have even flown the long haul flight to the US which I was dreading. I can sit through a film, without having to leave after 10 minutes. I've even enjoyed a couple of glasses of wine which was a big no no before. If I overdo something occasionally like having a sweet dessert and I feel my legs will start up, I take a tramadol. So I just wanted to say that noone should give up as they may find something that works for them. I wish I had tried Gabapentin before as I think it would have saved me from many years of walking the nights away.
Gabapentin : I've suffered with rls for... - Restless Legs Syn...
Gabapentin
That is good news, Coeso. And a helpful experience. Also: don’t look back, it works now. Enjoy!
Incidentally, you seem to take the gabapentin throughout the day. Is that (still) necessary? Maybe you can focus on evening doses and (very gradually) reduce and maybe eliminate the daytime ones? Based on the idea that less medicine (but sufficient to quell the symptoms) is always better. No need, only a suggestion.
Hi, I'm taking 400mgs at 4.30pm, then 600 at 6.30, 600 at 8,30 and 600 at 10.30. I will try to reduce but I'm away from home at the moment and don't want my legs to start up while I'm staying in someone else's home. Do you think I'm taking too much
Well done -and thanks for sharing.Otherwise+. As Lotte says.
That's wonderful news! So glad for you.
My assumption had been that Coeso had found 3 x 600mg taken two+ hours apart inadequate, and was taking 2100mg split four ways as recommended in the Mayo Algorithm. However if I'm mistaken or it would be good practice anyway, experimenting by (say) initially reducing to 3 x 600mg sounds a good move.
When I'm in my own home I'll try reducing. Thanks for the suggestion
I'm delighted to hear this great news. Thanks for sharing.
Have you tried Horizant ?
It’s a form of gabapentin that is easily absorbed. I take 600mg of that plus 800mg of plain gabapentin and 5mg of oxycodone.
I’m not sure how difficult it is to get prescription for oxycodone in Greece. In the U.S. it’s difficult but not impossible.
But I think a combination of gabapentin and oxycodone titrated to your RLS symptoms should provide you excellent relief
Not sure why you need to take it throughout the day… most people get RLS in the evening but I have heard of people with relentless RLS during the day.
Good luck!!
He's not taking it throughout the day, but gabapentin is not as well absorbed above 600 mg, and needs to be divided by 2 hours for each 600 mg. dose. That's why he has to start at 4:30.
Aha! I should do that too. I take a large 800mg gabapentin horse pill before I go to sleep and take Horizant at 6-7pm.
Congratulations on getting the nightmare of RLS under control and staying persistent in doing so. I used to get RLS in the evenings or at night. However, when I was first diagnosed with and treated for RLS I was given Levadopa. This escalated the RLS such that being still for twenty minutes would induce an attack. This made daily things like driving a nightmare and nigh on impossible. I saw a neurologist who then prescribed me pramipexole. This was in 2010. I have since augmented and, for me, this has mean't the RLS now involves my arms, I get an increased heart rate like an anxiety attack and this can and does occur 24/7. I think as DA impact the brain function of dopamine and develops into augmentation, the RLS not only extend to more of the body but also through out the day. I am on the initial stage of taking gabapentin, prior to the slow withdrawal from pramipexole and will be adding doses though the day as I increase the level of gabapentin as that is when I now get RLS. Such is the joy and privilege of this disease, NOT.
I also augmented on pramipexole and thought my rls couldn't be controlled as I presumed it was refractory rls, but it seems that gabapentin is doing the trick at the moment. I don't seem to have any side effects so give it a try. It did take about 3 weeks to sort everything out so don't give up. Good luck
Coeso you could be me, except that I am 74 in June! So slightly younger!!Otherwise I have been through exactly the same RLS experiences & ended up on 2100 gabapentin like you which I took spread out in the evenings.
If you are getting relief, as I was, on that dosage my advice is stay on it at the moment.
If it starts to stop being so efficient I know we can all give you good advice on the next stage.
I now have to take something else with the gabapentin but you may well not need to go on to another stage.
We are all different.
Keep "speaking" to the forum when/if you need more help.
All the best.
Simkin, UK
That is so interesting, Coeso, I am so pleased you seem to be getting relief from the Gabapentin.
I am taking 300mg Pregabalin at night, but it doesn’t seem to be working as well. I have put-on weight too, and get dreadful RLS both day and night, barely any respite.
My MS Consultant here in Oxford, England, is very reluctant to put me on opioids because of ‘addiction’!! Like I’d care at my age (65)!! But he suggested Gabapentin instead of Pregabalin, which I’d previously ignored, thinking it would be the same and that Pregabalin was better.
Having read your post, though, it clearly may be worth a try.
This pesky disease is so bloody hit and miss. But we live in hope! X
If you decide to switch multiply the pregabalin amount by 6 to get the correct dose which would be 1800 mg gabapentin. Take 600 mg 1 to 2 hours before bedtime and then 600 mg 2 hours before that as it is not as well absorbed above 600 mg. and then 600 mg a further 2 hours before that. 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. You can switch directly. Pregabalin is more likely to cause weight gain than gabapentin.
Thank you Sue, you are a star as ever. Talking to MS Nurses and doctors soon. x
I’m so happy you found something that works for you. I just started gabepentin and still on ropinirole with much relief although still having breakthrough symptoms. Especially if I have caffeine after noon. Going in for a sleep study soon.
I take tramadol and Gabapentin...changed my life for the better.
Hi, have you tried a tubular support bandages at night🤔
Gret news for you Coesco. I have had the cursed RLS for over 50 years now and sewriously for the last 25 years. I am on 2 grams of Pramipexole per night and 1200 mg of Gabapentin as my neurologist is wanting me to reduce my intake of Pramipexole. I don't think that the Gabapentin is doing much at all for me. I, like others who have responded to you, have augmentation of the symptoms. Sitting down in a low chair at any time of the day brings on the RL almost instantly. I jiust have to get up and walk around. I used to get the RL only in the lower right leg. Now it has developed so that the left leg and arm are now having the same problem. The funny thing is that often when the rest of the body is having the problem the medication has stopped the RL in the lower right leg. A very strange feeling to have the whole body with RL and the lower right leg feeling good. I wonder if anyone will ever find a decent treatment for the control of RLS? Got to finish now as the RL are crankinbg up.
The gabapentin won't help you much until you are off the pramipexole and the symptoms have settled from that. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you are taking more than 600 mg take the extra 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. After you are off pramipexole and your symptoms have settled if it is not controlling your symptoms add 100 mg every 2 days until you find the dose that works for you. Take the extra 6 hours before bedtime. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you are not familiar with the Mayo Algorithm, check it out at Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done.Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Forgive me if you have seen all of the above on my previous posts.
Hi Sue. Thanks for your very informative message. I try my best to avoid so many of the food and other items you have listed. I don't touch alcohol and drink decaf coffee, maybe one caffeine coffee a week or so. I had great hopes for the ferritin level test but sadly my result was over the 100. I just had another test done and am awaiting the results. I don't know I would survive coming off the Pramipexole over a long period of time. Should I ask my doctor for a full iron panel test? I shall certainly ask what myferritin and tranferritin saturation numbers are and ask for that test if the info is not too hand. I do take magnesium sometimes to help with reducing the RL during the evening which means that there could be interference with the Gabapentin that I take just before going to sleep. I have tried compression bandages with no positive results as occured with the magnesium lotion rubbed on the leg. I shall continbue withy the masturbation you have suggested but is there a particular timethat I should use this relaxtion technique? Again, thatanks for your thoughtful advise. I shall be following up with my local docter and my neurologist whom I am seeing on Tuesday this coming week.
By the way I assume you meant 2 mg. You are taking 4 times the maximum amount of pramipexole. It is going to take you a long time to come off it. To come off pramipexole, reduce by . half of a .125 tablet) 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS.
Hi again Sue. Yes, it was 2 mg when I checked the container. 2 grams would probably have had a pretty serious result I would have thought,
I had all the symptoms you had. I couldn't sit down on the settee after lunch and I hated bed time. I had the horrible feeling in my arms too. I had been off prami for quite a while and gaba for about 3 weeks before I got relief. Keep trying with it
Great news , hope they keep working for you .
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