Help please: Hi all, especially Sue and... - Restless Legs Syn...

Restless Legs Syndrome

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Help please

Cobobay profile image
5 Replies

Hi all, especially Sue and Joel's as I'm hoping you can help again. I've been absolutely fine for quite a while now on 600mg at 6pm and 600mg again at 8pm, but intermittently last couple of weeks I'm waking up with augmentation which makes me get up and does wear off once I'm moving. I've spoken with doctor, who has as you may remember been amazing to the information I'm given on here and has gone by that. I called her secretary other day to say I had run out of Dihydrocodeine which I took if I needed to help with the augmentation which didnt help amazingly tbh and also asked for some 100mg tablets as I'd run out-of those too (had 56 of both these tablets way back in December, gabapentin was used as I increased the dose to 600mg, so as you can see only used if needed) Problem I am having now is, she won't prescribe both its either or, I don't want to up the gabapentin unless I have too, as dont want to get to the point of them not working anymore because ive got used to them, they have been amazing and I've slept mostly through the night on them. Not sure what you do or what to ask for. As I said my Doctor has been so supportive and after explanations has never questioned anything, unless I haven't explained very well. Please what should I do? I can't see her till Monday, so suffering till then as fony want to take another 600mg to make my intake 1800mg, I don't have anything smaller to take.Thanks in advance

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Cobobay
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Joolsg profile image
Joolsg

Gabapentin doesn't cause Augmentation. Augmentation only happens with dopaminergic drugs, like Ropinirole, but you've been off that for 6 months.What you are experiencing is breakthrough RLS.

If you were taking 100mg dihydrocodeine, as well as 1200mg Gabapentin, if you suddenly stop the dihydrocodeine, you are probably suffering opioid withdrawals, the main symptom of which is RLS.

Alternatively, 1200mg of Gabapentin may not be enough to cover your RLS.

So, if you wait 2 to 3 weeks to see if the withdrawals from dihydrocodeine settle and then you can increase the Gabapentin by adding a third dose, 2 hours apart from your existing doses. You could also try taking the last dose of Gabapentin just before bed so it lasts longer and prevents night time breakthrough.

The first year after getting off a dopamine agonist is very much trial and error.

Many people do NOT respond well to gabapentinoids after augmentation on dopaminergic drugs.

If raising the Gabapentin dose doesn't help you may have to push for a long half life opioid ( methadone or Buprenorphine).

SueJohnson profile image
SueJohnson

I agree with Joolsg. Gabapentin doesn't cause augmentation. I wouldn't worry about getting to the point where gabapentin doesn't work any more. It is common in the first year to have to increase it a bit, but do ask for 100 mg as you don't want to increase it by 600 mg. After a number of years you may need to increase it by another 100 mg but you will probably die before you get to the maximum of 3600 mg.

If you were taking the dihydrocodeine regularly as Joolsg says you are probably suffering from withdrawal. It's too late now for the weekend but on Monday tell her you are suffering from withdrawal and need to wean off it not stop suddenly and ask her for enough to do that and ask for the 100 mg gabapentin. You can take the extra 600 mg gabapentin at 4:00, but just for the weekend.

Cobobay profile image
Cobobay in reply to SueJohnson

Hi Sue and Joel's, I haven't and wasn't taking regular asni said I only had 56 tablets in December and have only just ran out and was only taking 1 when I did buy not regularly, maybe 1 every 10 days so don't think I need to wean off them. I won't get anymore then and just go with 100mg as a top up. Its driving me mad and I'm not sleeping again.

SueJohnson profile image
SueJohnson in reply to Cobobay

I'm glad you don't have to wean off it.

Cobobay profile image
Cobobay in reply to SueJohnson

Thank you all for your help as always, will let you know what she says on Monday x

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