In my last post ('Progress...') I wrote that my doctor has agreed to give me Gabapentin ("even though it is not licensed" - what ever that means). I collected the prescription today and she has given me 30 x 100mg, with instructions to take one at bedtime. I referred back to Sue Johnson's notes where she says that the usual starting dose is 300 mg, and wonder if I should ignore the doctor and start with that. On the other hand there may be something in my medical history that makes the doctor want to ensure I'm not going to react adversely before upping the dose.
I thought perhaps I'll follow her instructions for a fortnight, and then report back to her, yet again with a cut and paste from the Mayo Clinic article.
In the meantime, I didn't get to sleep until 6.30 this morning. I don't know how much longer I can go on with this every night.
I have ordered one of the machines that were mentioned recently which do your fidgeting for you while you lie there and relax, and I hope that that arrives soon!
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Desperate100
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Your doctor probably started you out on 100 mg because the recommendation is 100 mg for those over 65. I always recommend 300 mg because I started out with that at age 80 as recommended by my doctor, and I haven't heard of anyone having a problem starting out with that. And because one will be quicker to have an effective dose starting at that. I would follow the doctor's instructions since you only have 100 capsules so you would only have 10 days if you took 300 mg and since you don't want to annoy her by not doing so.
Frustrating for you as she has clearly ignored the Mayo algorithm information completely.As you're still not sleeping, I would write or email and ask why she has given you an ineffective trial dose. 100mg will not work for RLS.
The NICE guidelines recommend an initial starting dose of 300mg and then slow increases up to 2700mg for RLS.
Your GP should follow NICE guidelines.
We really should not have to be teaching GPs or telling them about NHS and NICE guidelines. The RCGPs assured me that all GPs would be aware of the RLS guidelines but your GP has just proved the whole point of the campaign to get RLS taught at medical school or during GP training.
My GP says that there aren't any NICE guidelines for RLS! Is that what she meant by 'unlicensed'? The instructions in the pack of Gabapentin don't mention it's use for RLS at all.
There are clearly both NICE and NHS treatment guidelines for RLS and any GP who bothers to use Dr Google would see that. Sadly, most never bother which is why we teach ourselves.What can I say? Gabapentin is prescribed 'off licence'. The only drugs licensed are the dopamine agonists and Targinact but NICE and the NHS acknowledge Gabapentin helps. It's only licensed for epilepsy but neurologists have used it off licence for nerve pain and RLS for years.
The NICE guidelines show the dosage for RLS.
My old GP was appalling. The new one is willing to read the information I provide, but she's young and helpful.
But not for a month! You will have many sleepless nights. The idea is to titrate up slowly. I think most GPs would start you on 100mg for 3 nights and then increase by another 100mg every 3 nights until you're at,say,900mg and then monitor and adjust the dose as required. As it takes 3 weeks at full dose to be effective you will have bad nights still. Stay on 900mg (300mg 2 hrs before bed, 600mg before bed) for 3 weeks and if it doesn't cover symptoms you can increase by 100mg every 3 days until you find what works.Hope that helps.
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