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Restless Legs Syndrome

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Gabapentin article

Madlegs1 profile image
19 Replies

This is an article on Gabapentin which may be useful for some here.

medscape.com/s/viewarticle/...

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19 Replies
SueJohnson profile image
SueJohnson

Nothing really new in it.

Strike26 profile image
Strike26

Thanks for this. Interesting article- the initial use of Gabapentin found it didn’t control pain and that certainly describes my experience- but, for me at least, it has worked a near miracle, reducing the extreme effects of RLS by around 80 percent. Thank goodness for this site and the Mayo Clinic.

Rameau profile image
Rameau in reply toStrike26

I agree. Gabapentin is proving very effective at reducing the impact of both peripheral neuropathy and RLS. I could do without the weight gain though.

J_J_758 profile image
J_J_758 in reply toRameau

Yes I agree about the weight gain the same applies to pregabalin has anyone any tips or ideas to help with this? I eat sensibly and ask as active as I can be but am constantly RAVENOUS 😡

DebraO profile image
DebraO in reply toStrike26

Gabapentin has helped me greatly. It is not a cure, but it has cut my evenings of distress about 75%. I take it nightly and most nights I have no restless legs. But then there are the nights that start but fizzle, and then an occasional breakthrough night of misery. But i am thankful for the relief I get. I have not been able to identify anything different about the nights of breakthrough RLS.

SueJohnson profile image
SueJohnson in reply toDebraO

How much are you taking and when?

Joolsg profile image
Joolsg

Timely Madlegs. Professor Toby Richards gave a talk on iron at yesterday's RLS-UK AGM. He said his pet hate was gabapentin. He thinks it's a terrible drug.A few people did agree and others said it had helped.

amrob123 profile image
amrob123 in reply toJoolsg

Did he say why Jools? Some doctors that I have seen say the same of pregabalin.

Joolsg profile image
Joolsg in reply toamrob123

He wasn't very specific but did mention that side effects of dizziness are more likely to cause falls in the elderly, especially when given for pain after ops.I think that it's a personal view - and many patients who benefit are aware of the side effects, most of which tend to settle over a few months.

My MS neurologist has written a webcast on Amitriptyline.

He calls it the 'neurologists dirty little secret'. It's used widely for MS nerve pain but has been linked to dementia.

Cobobay profile image
Cobobay in reply toJoolsg

My mother was put on amytripyline and I asked for her to change yo another, she was falling every otherday and suffering from terrible nightmares and illusinations, when care was taken over by my know it all brother he got her straight back on it, her falls got worse by the day, she also has dementia now also, I hate that drug.

J_J_758 profile image
J_J_758 in reply toCobobay

God I’m so sorry to hear about your poor mum. I was on amitriptline for migraines and I hated it SO much it made me feel hungover every morning I can understand why your mum would be falling it is an awful drug I was so glad to get off it.

coldfeet7 profile image
coldfeet7 in reply toJoolsg

I am on 100mg of Pregabalin and it does make me less stable and that is low dose. I can't imagine being on more. I used to be able to take stable photos handheld (loved my photography), but now I find I need steadying and it is disheartening. I kind of lost interest in my photography. It also leaves you less sure of yourself when hiking.

Joolsg profile image
Joolsg in reply tocoldfeet7

The side effects do tend to settle after 2 or 3 months. How long have you been taking it?

coldfeet7 profile image
coldfeet7 in reply toJoolsg

Well beyond that, so I should be acclimated. I have stumbled a few times, especially getting up in the morning. I started taking it because of an auto accident when I couldn't sleep through the night (neck pain from whiplash) and have neuropathy in my hands. An upside is my diagnosed PLMs (confirmed in my PSG) seem to have improved some as a side-effect of having to take pregabalin. Don't fall asleep as often during the day and I am sure the CPAP helps in that regard as well.

I take it about 10pm and go to bed 2-3 hours later. Always wake up groggy and unsteady which slowly gets better as the day goes along.

Joolsg profile image
Joolsg in reply tocoldfeet7

I was like that on 150mg pregabalin. I reduced to 100mg and things improved.But everyone responds differently.

coldfeet7 profile image
coldfeet7 in reply toJoolsg

I wanted to change the Rx from 100mg capsules to 25mg capsules so I could titrate down to 75mg and see if I could sleep with just that. If I couldn't, at least I could go back to four 25s without a new Rx, but the Dr said they can't write for four 25mg a day. Does that sound right? When you took 150, did you do one 100mg and two 25mg?

I tried opening the capsule and getting rid of a small amount to titrate down and putting it back together to take it. But that is not very accurate or convenient. (sheepish grin)

Joolsg profile image
Joolsg in reply tocoldfeet7

I have always asked for 25mg capsules. My GP readily agreed.No idea why yours refuses.

Ask again and say you want to refuce to the minimum effective dose. OR ask your pharmacist if he can supply 25mg pills. My pharmacist is my new best mate. He sources best brands etc.

SueJohnson profile image
SueJohnson in reply tocoldfeet7

If you still can't get them you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram so you can be accurate. But as Joolsg said that is ridiculous so try her suggestions.

SurvivorD profile image
SurvivorD

Again studies done on the medications!!!! Not the cause!!!

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