Gabapentin Update

[riverislow]

I am up to 1600mg gabapentin now taking 400mg at 5pm, 600mg at 700pm and 600mg at 9pm, I go to bed between 10:30 and 11;00, I sleep for 1-1 1/2 hours and then am awake mostly all night and am lucky if i get some sleep around 5 pm or 6pm for few hours, should I back off or should I take some at 3pm.I would appreciate any help as this is miserable, I increased slowly her a month. Thanks.

[SueJohnson]

You probably need more gabapentin. If you had been on a dopamine agonist before (ropinirole, pramipexole) that would explain why it has not yet worked for you but you weren't so it should work. Add 100 mg every couple of days to your 4 pm dose. If 1800 mg isn't working then switch to pregabalin at 300 mg and add 25 mg every couple of days. It can be taken in one dose at 9:00. If you get to 450 mg and it doesn't work the you need a low dose opioid. If that happens post back here and I can tell you how to withdraw from pregabalin and which opioid to ask for.

[riverislow in reply to SueJohnson]

I’ve never taken a dopamine agonist and I assume you mean my 5 o’clock dose note 4 o’clock dose. I seem to have done better at around 500 or 600, should I decrease and try it again? Thanks

[SueJohnson in reply to riverislow]

Yes I meant 5 pm (my mind had the 400 mg in it so said it wrong).

I am confused by what you mean when you said "done better at around 500 or 600, should I decrease and try it again"

[riverislow in reply to SueJohnson]

Sorry to confuse you. I meant I seem to have got more sleep when I was taking. 500mg to 600 mg, I have kept a diary so I can see how I did sleep wise at every increase. I never do any leg exercises apart from walking and yoga but I do quite strenuous upper body weight training, is it possible that that is the problem?

[SueJohnson in reply to riverislow]

Yes any strenuous exercise can make it worse. Lifting heavy weights isn't a problem but doing repetitions quickly could.

[riverislow in reply to SueJohnson]

Thank you so much, I will make sure I go slow and I will keep going up to 1800mg gabapentin.

[riverislow in reply to SueJohnson]

Hi Sue. I haven’t had much luck with gabapentin, 1800 didn’t work so I started to decrease and found I got some relief at 1400, stayed there for around 2 months now it’s not working again, I think I would like to now try pregabalin, can I switch now or should I go down to 900, if so can I take trazadone to help me get there and how often should I decrease and by how much at a time? Many thanks.

[SueJohnson in reply to riverislow]

You can switch directly. The equivalent amount of pregabalin to 1400 would be 233 mg so you could either switch to 225 or 250 mg.

[riverislow in reply to SueJohnson]

Thank you Sue. And then as I remember you said increase 25mg at a time, is that correct?

[SueJohnson in reply to riverislow]

yes every couple of days

[riverislow in reply to SueJohnson]

thanks, what time of day should I take it?

[SueJohnson in reply to riverislow]

1 to 2 hours before bed.

[riverislow in reply to SueJohnson]

Thank you.

[riverislow in reply to SueJohnson]

Update on my switch over from gabapentin to pregabalin. I am now taking 300mg pregabalin and am getting some great sleep but I am awake for about 4-5 hours from 12am to 4or 5am nd then I sleep for about 4-5 hours so I am getting about 6-7 hours and am able to nap If I need it, I take it at 8;30pm, I have tried taking it later, I am going up to 325 mg pregabalin tomorrow. Should i take it earlier or just keep going up in mg. I feel great on it and can live with the side effects. I am not sure what the limit is for pregabalin and RLS. Thanks Sue.

[SueJohnson in reply to riverislow]

It's not surprising that the 300 mg is still not enough as it is equivalent to the 1800 mg gabapentin that you took. I wouldn't take it earlier. I would keep increasing it by 25 mg every couple of days until it completely controls your RLS. At that point if you are still waking up and not getting enough sleep, I would recommend taking lunesta. I take it to sleep for another condition.

[riverislow in reply to SueJohnson]

Do you mean take Lunesta as well as pregabalin?

[SueJohnson in reply to riverislow]

Yes if you are still not getting enough sleep but your RLS is under control. I take it with gabapentin.

[riverislow in reply to SueJohnson]

Hopefully it will work at a higher dose; I have a whole stash of gabapentin left, I assume I can take it to use it up at the equivalent dose once I get the RLS under control, it looks like I have pharmacy in my cupboard. As always Sue thank you for your great advice. RLS is such a monster and just such a very weird condition, life changing.

[SueJohnson in reply to riverislow]

Yes you can use the gabapentin. Definitely hope it will work. 🤞

[riverislow in reply to SueJohnson]

Hi Sue. I'm up to 350mg pregabalin and the rls seems to be worse, how far should I go up in dose before I know its not going to work and if I have to come off do I come off it the same way I got on it? I seems to have done better at a lower dose. Thanks Sue

[SueJohnson in reply to riverislow]

That is strange that it is worse. Have you changed anything? What you eat, what you do like exercise, any new supplements? Not sure if it is worse if you should go higher. 450 would be the top.

If you do decide to come off it you need to do so very slowly like 25 mg every couple of weeks.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[riverislow in reply to SueJohnson]

Thanks Sue. When I say it is worse I mean I feel them all night but I am in a sort of trance like state and am able to get some sleep, is like i am asleep but aware of everything, its like I'm in a trance, very strange. I have been drinking Rooibos tea and added some new supplements and exercise, I will stop it all and see what happens. I will stay at 350 mg and see if anything changes. I am coming home to UK in September and hope to do better. I think I may have the Nightwalkers edition and will look up the article by Sergi Ferre. I am really hoping I can get Pregabalin or Gabapentin to work.

[riverislow in reply to SueJohnson]

Morning Sue.

I am up to 375 mg pregabalin. its not working well, I usually sleep for an hour and then am awake, legs bothering me until around 4 or 5, should I go higher? I would have thoughtI I'd have some improvement by now, the legs are not terrible but just enough to keep me awake. Also I have a ton of gabapentin left, if I switchback to it at 2400mg, how should I take it. Thanks Sue

[SueJohnson in reply to riverislow]

Do you feel the gabapentin or pregabalin has helped at all? If so then continue up to 450 mg. If not then give up on it and try the dipyridamole and if that doesn't work then you need an opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

Let's hope the dipyridamole works because in the UK it is very hard to find a doctor that will prescribe an opioid although I do know some. And I wouldn't start an opioid until you are in the UK as you will have withdrawals if you run out before you find someone who will prescribe it. Let me know how the dipyridamole works. I know you really don't want to take an opioid but it is better than suffering from RLS.

If the pregabalin doesn't work then start coming off the it by reducing by 25 mg every 2 weeks.

[riverislow in reply to SueJohnson]

It really has helped me, I feel good on it but most nights are this big gap of not sleeping, drives me nuts, its not every night and I am able to nap 1 or 2 hours in the afternoons, never been able to do that before. I think I will increase the dose, I've come the far. I'm coming over to England for 3 weeks in SeptemberI'm really hoping I can get this to work better, driving on the other side of the road is going to be a challenge. Thanks for you advice Sue, I will let you know how I get on.

[SueJohnson in reply to riverislow]

OK - sounds like a plan. I misunderstood you. I thought you were moving to England.

[riverislow in reply to SueJohnson]

I wish I was moving back.

[Eryl]

youtu.be/acEZNSabrgY?si=Yc3...(Not working as expected?)

[riverislow in reply to Eryl]

Thanks for this informative video.

[CathyJoH in reply to riverislow]

Agree that video was worthwhile watching. I am 66 and her recommendation to make sure we hydrate especially if over 60 to help flush out the liver was a good reminder. Thank you for sharing!

[Carlettejaque]

Hi, I take 2,500 my per day split over 3 doses. My last dose of 800mg is at 9pm. I take it for a neuropathic condition. I also have ERM wich keeps me awake at night. The high dose helps me sleep. It doesn't seem to make me sleepy during thd day though.

[SueJohnson in reply to Carlettejaque]

Taking more than 600 mg at a time reduces the absorption of gabapentin. For example if you take 900 mg at a time it is like you are only taking 540 mg.

[Carlettejaque in reply to SueJohnson]

I've read that o here before but I feel a big difference between 600mg and 800mg. 600mg for me is not that effective but the higher dose is. So why is that?

[SueJohnson in reply to Carlettejaque]

Strange. I don't know the answer.

[Legquake]

I'm on Ropinirole, at least for now, and my sleep pattern is similar to yours. Have a sleep study done or download the Mental or similar app which can give you an indication of what may be going on. You could, for example, have developed sleep apnea. I would consider this before going down another road.

[Truthsword]

I would consider going off any foods with glutamine or glutamate. My neurologist at the Mayo Clinic suggested I do that and it is better. Any food additives, soy sauce, some are bothered by coffee...not me.I take usually 600mg Gabapentin and 50mg Tramadol and sleep well. But if I accidentally eat bacon with nitrates....I don't sleep at all! Even with the meds!

I pray the best for you....and a solution for all of us.