Hello I feel like I'm getting different information yet again. I visited my GPshe was very understanding about my RLS. She tried to put me on ropinerole but I explained about augmentation on DAs she looked confused at this. I explained I have weaned off my pramipexole and didn't want to go back on DAs. I told her I am having a nightmare lately sleeping with RLS as in my arms and legs.
She then said she would give me some gabapentin and to take it 300mg 1 in am and 1 at night is this right? she looked in BNF book. I said I am working full time and didn't want to be drowsy at work!
Do I take the gabapentin at night would u say? it says so on NHS site and makers of gabapentin website? Totally confused now what to do? She also referred me to a neurologist so see what happens with that. Any advice on meds would b good please from u helpful people on here. Thanks
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Netball-50
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Hi, your doctor is prescribing gabapentin according to the BNF which unfortunately makes no mention of RLS. She is prescribing as if for some other condition.
The starting dose is 300mg a day, NOT 600 mg. It isn't 600mg for any condition. Your GP may have misread that.
You should then build it up in steps of 100mg every 2 days or so.
The BNF doesn't say that either!
If you take gabapentin am, it may make you drowsy. Another reason for only taking it at night.
Gabapentin takes a few weeks to work and you may need at least 900mg for it to be effective.
You'll have to forgive your GP for her ignorance, GPs can't possibly know everything. Here is a link to some information about gabapentin doses for RLS.
Your statement about Gabapentin taking weeks to work causes me considerable alarm. When the 300mg of Pregabalin, which I had been taking for a couple of years, no longer seemed to be working my GP (I don't have access to a Neurologist) advised me to transition to Gabapentin starting at 100mg and working up. The transition itself is causing me great distress as I am up virtually all night every night, and I don't think I can cope with weeks of waiting for the Gabapentin to kick in. My sympathy Netball-50 - I am confused also! I would appreciate your valuable advice once again Manerva. Should I go back to the Pregabalin and increase the dose or persevere with changing to Gabapentin. If the latter is there something which will help me get through the immediate misery? NB: I am already unstable due to the Peripheral Neuropathy which led to the RLS. Apologies for the length of my post but any distraction when I am still up at 6:30am is welcome, and maybe it will also help someone else.
Since Gabapentin and Pregabalin are more or less the same thing, I would imagine that if you've just switched from one to the other you may not have to wait a few weeks.
The starting dose could have been at least 300mg and some sources state that you can switch from 300mg Pregabalin a day to 600mg Gabapentin a day directly
It seems your doctor has poorly advised you. To go from 300mg Pregabalin to 100mg Gabapentin is cruel.
You may need at least 900mg of gabapentin for it to work and can, if necessary increase it further.
Sorry to further alarm you, but it's usual to switch from Gabapentin to Pregabalin rather than the other way round. Pregabalin is more potent than Gabapentin and more easily absorbed.
You will, of course, need to carry on either Pregabalin or Gabapentin for your neuropathy. As regards your RLS however, it is possible that if the Pregabalin stopped working, then Gabapentin may not work either
It might be worthwhile you having a blood panel done to see if you have any deficiencies that may be contributing to your RLS
Ferritin
Vitamin B12/Folate
Vitamin D
Thyroid function
Electrolytes
Vitamin B12/D supplements will help if you have a deficiency
Iron supplements will help if your Ferritin is below 100mcg/L
Also check to see if you are taking any other medications that can make your RLS worse
SSRI or Tricyclic antidepressants
Antihistamines
Some anatacids e.g. Proton Pump Inhibitors
Medicines for nausea
Some statins
Some heart medicines
You could write to Dr Buckfuhrer in S California and tell him your issue and he will offer some advice.
Follow the link below to the web site and click on the yellow email button on the left side of the webpage
Thanks for your prompt and helpful reply. Switching from Pregabalin to Gabapentin doesn't indeed seem to make much sense although I do need one of them as you say. I have taken your advice and emailed the Southern California RLS Support Group in the hope that they can help, even though here in Sydney Australia I am somewhat outside their area . Meanwhile I'll hang in there as best I can.
Dr Buckfuhrer, I believe, answers anyone who writes in English.
I've received responses twice now. I live in the UK.
Apart from a tiny minority of countries, the internet has no national boundaries and no walls. The only limitation is language.
This is the second post i have just read that has someone with a doctor who has no clue about RLS or how to treat it, especially not knowing about augmentation. Manerva as usual gives good information.
And unlike Manerva I can find absolutely no excuse for this enduring and damaging ignorance. Lives are being deeply harmed and lives are sometimes lost.
All doctors have computers or tablets to hand, Why don't they use them?
Bearing in mind that there is a shortage of GPs in the UK, that GP surgeries are having to take on an increasing number of patients, that GPs have to deal with a wide range of conditions that patients present to them, many of which have more immediate and/or more serious consequences than RLS.
GPs suicide rates are one of the highest.
They don't always have time to access all the information they might need, and they might not even know that the information exists.
For me a good doctor is one who listens, discusses things, treats you as a partner in deciding treatment and admits it when theyb don't know something, showing a willingness to learn
All in the 10 minute slot.
So am willing to be a bit forgiving.
However, where it's apparent that anbody has suffered,not just simple ignorance from a doctor but arrogance, insensitivity, autocracy and serious mistakes then I will comment in that, and have done.
Have you tried the diet I suggested in reply to your last post? Even just adopt a gluten free diet until you see the neurologist. Some people have found relief by adopting a vegan diet. Choose one and give it 12 weeks and see if there is an improvement.
Also make sure you get a ferritin measurement but dont settle for a descriptive answer like "normal" Politely push to get a photocopy of the pathology report so you know the numbers. You need to make sure your ferritin is up in the region of 350 before you accept that iron is not your problem. If your ferritin is lower then you will probably need an intravenous iron infusion to raise it. Oral tablets will probably never get you there and you will have to suffer for a couple of extra years. Check with your doctor to make sure you have no specific reason to avoid an increase in iron.
I suspect Netball lives in the UK, in which blood results, (including numbers) are available on line. I find this an absolute boon. I had years of being told my routine test was "normal" when, in fact it never was for someone in my situation.
For anybody who lives in the UK, I'd suggest they get online access.
That sounds really useful. In Australia we are offered the service of having all our medical records in one giant database accessible only by us and any medical person.
I have chosen not to add my details to the database because I can't rely on its security.
I weaned off Pramipexole and my GP gave me Gabapentin and said to take 300mgs am and 300 at night. After trying various times I have found what works for me is one 300gm at about 5pm and one at 9pm. My RLS occurred in the evening and at night. I now get 7/8 hours sleep a night and can watch tv or read in the evening without having to pace the floor.
I think you have to try different times to see what suits you.
That seems like a wise schedule of taking gabapentin and is in link with when other people tale the gabapentin (or pregabalin). I hope the relief continues for a looooooong time.
I was on pramipexole and had dreadful augmentation. I came off it slowly and went on gabapentin (on my son's advice. He is a consultant neurologist) I had to rack it up to 600mg three times a day, and had no side effects. I am now reducing it to 1 in the morning, 1 midday and 2 at night. It has transformed my life!
Lovely! Unfortunately, doctors who do know it seem hard to find.
Better to educate YOURSELF.
I believe it's always beneficial to be knowledgeable about ANY condition you suffer from.. There's too much of an expectation that doctors both know everything and are somehow morally superior. It's dangerous when they pretend to be. Neither apply, they're human.
I believe if I hadn't become an expert in some of the conditions I've suffered, outcomes would have been very different.
My situation is very similar to your I also suffer from severe rls and was augmenting on pramipexole I managed to wean myself off pramipexole on neurologist advise whilst at the same time gradually increasing my dosage of Gabapentin. About one week into the Gabapentin dosage and taking 300mg at night I had the mist horrible night ones years eve when I went into some kind of fit/hallucinations/stroke my gp wasn't sure but I stopped the Gabapentin on his advice and the episode hasn't reoccurred so be very careful with Gabapentin I wouldn't wish my experience on my worst enemy. At the time of the attack I couldn't stand lift my arms and was shouting out for help in the middle of the night horrendous experience
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