Gabapentin: My consultant has put me... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin

JonathanW65 profile image
28 Replies

My consultant has put me on Gabapentin after trying all the usual stuff (Ropinirole, Pramipexole). Has anyone any experience of using this medication?

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JonathanW65
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28 Replies
gentoorax profile image
gentoorax

I've just been put on gabapentin myself 100mg three times a day. Currently it doesn't seem to be doing anything, but it's only been a week, I've heard it can take two weeks to start working. I'll let you know how it goes.

When I take it during the day I've had some bad feelings of sickness but I'm hoping that goes away.

Lapsedrunner profile image
Lapsedrunner in reply to gentoorax

If your symptoms are only at night perhaps you should just take it in the evening?

pattio profile image
pattio in reply to gentoorax

Gabapentin has been very effective for me. I take 9X300 mg total, 300mg at 4:30, 300mg at 6:30 and 300mg at 7:30 pm. I also take 3-4 mg of Lorazepam at night. I am working on decreasing the Lorazepam . This is works for me. I am sleeping through the night most nights without symptoms. Good luck to you. Don't give up. And remember that you are not alone.

Hi, I've been taking Gabapentin for 14 months now. I originally started on it for nerve pain due to a spinal problem. When I discovered it could also be used for RLS, I started reducing the Dopamine Agonist (DA), I was taking at the time. The DA was causing augmentation and insomnia.

I stopped taking the DA completely nearly 2 months ago, I am now taking 600mg Gabapentin at night. This is not a particularly high dose. I am sleeping well and I rarely have RLS symptoms. It works for me.

Gabapentin does not cause augmentation like the DAs do, so I believe a lot more doctors are prescribing Gabapentin or Pregabalin first, before a DA. DAs are the more "traditional" first line treatment for RLS.

Another advantage of Gaba, for me, is that if I ever accidentally missed a dose of my DA, I had awful withdrawal effects in a matter of hours. I've missed a dose of Gabapentin a couple of times and never even noticed. It's more tolerant then.

It has some disadvantages. It isn't immediately effective or as consistently effective compared to DAs. It doesn't work for everyone and it takes weeks to start working, so if at first it doesn't seem to be working, you need to persist with it for some weeks. Even then, if it's still not working, you could try increasing the dose. You would need to do this gradually say an increase of 100mg every 2 - 3 days. I have heard of people taking 1200mg a day.

Pregabalin is a more potent form of the same thing, it's more easily absorbed and its effect is more consistent.

Another disadvantage is side effects. Some people just can't tolerate them. They do happen but may settle down after a few weeks. Gaba must affect the inner ear as it can make you dizzy and affects balance. I do experience both, but only mildly.

Some people find it stimulates their appetite and they put on weight. I was overweight when I started on it, but I actually managed to lose just over 10kg since.

The added advantage for me is that as well as relieving my RLS, it also helps with my neuropathy.

It's well worth trying.

Kryn profile image
Kryn

I've been on 600mg (taken as 300 mg twice daily) for around seven months now, after augmenting on Ropinerole. To be honest, this drug has been a godsend for me, although it does take a week or two to get into your system, but with the help of strong co codamol (30/500) 2×3 times daily for a few weeks until the Gabapentin kicks in really helps. It's also about finding the right dosage that works for you, and as everyone is different, that may be less or more of this drug. My results have been very positive with this, and at the moment, I am currently RLS free. Good luck with this, and I hope it works as well for you as it has for me.

Bpsuper profile image
Bpsuper

Been taking Gabapentin for a year now and it works for me. I take 300mgs at lunchtime and 300mgs in the evening a get 7/8 hours sleep. I always get up once or twice a night for 5/10 minutes but go back t to sleep pretty well. It took several weeks or Gaba to work but so far so good.

Sampsie profile image
Sampsie

Hi JonathanW65,

I've been taking Gabapentin for about 6 years. I vary my dose according to my needs. If i feel a reaction coming on from food or drink I take one immediately. Then I start with 2 x 300m at bedtime with 1 codeine-paracetamol. If it's a bad night I'll take up to another 4 x 300m and another codeine, either to get to sleep (to stop the shooting electricity and need to move) or when I wake with breakthrough symptoms.

Having read others take Gabapentin during the day, I might try that, however it makes me very drowsy.

I don't find I eat more because of nausea from side effects - I'm not sure if that is from the Gabapentin or codeine, but goe me I need both.

Given what people say about dopamine drugs I feel lucky I was put on this.

Good luck.

John_naylor profile image
John_naylor

I take 3x400mg/ day Gabapentin plus 100mg Tramadol and sometimes can sleep through. I take my Gabapentin in the evening in 2 doses and think it gives me digestive problems. I’d like to try reducing but after a few years on this dose still haven’t been without symptoms for long enough to test it out.

Seehowyour profile image
Seehowyour

Hi, Gabapentin doesn't work for me at all! The Dr. has put me on it twice at varying doses and it made me to where I couldn't function at all, even at the lowest dose. I would take it in the evening and the next day I would feel so tired and out of it. I take care of 3 elderly family members and couldn't take care of myself let alone them. It also didn't help that much with my Restless leg symtoms. The only good thing it did for me was help me sleep, but that stopped after about 2 weeks. I still take my Ropinorole, but I know I have to increase the dose, but the Dr. won't put me on anything else. The Dr. I see is a Neurologist. Has anyone seen a Rheumatologist for these symptoms? I am nor surprised that Gabapentin works different for me, because medicines seem to work the opposite for me compared to most people. The only time I got relief from my RLS was when I was on Lortab for my back surgery, but they won't prescribe it anymore. Good luck with your RLS journey!

Joolsg profile image
Joolsg in reply to Seehowyour

Did you stop taking the ropinirole before you started gabapentin? Gabapentin won't help RLS while you're still on dopamine agonists.

JonathanW65 profile image
JonathanW65 in reply to Joolsg

Yes. I finished Ropinirole a few months ago. The Neurologist has since tried me on Rotigotone patches which had no effect. I stopped these a month ago. Thanks for your support.

in reply to Seehowyour

You say you are still taking Ropinirole. If you are then it is not a good idea to increase the dose. This will probably lead to augmentation and your RLS will get worse not better.

Follow this link to find out about augmentation

sleepreviewmag.com/2015/02/...

Sorry that you couldn't tolerate Gabapentin. You can take Gabapentin and Ropinirole at the same time and for some people this CAN help to reduce RLS. I was advised by a reputable RLS expert that the combination can help.

However, the side effects add up! It may be that you can't tolerate taking both. If you were to stop the Ropinirole completely, then you may be able to tolerate Gabapentin better.

Otherwise, you're running out of options. An opiate would help, but not Lortab, which in any event you can't get. Oxycodone or Methodone are, iI hear more appropriate for RLS.

YodaDog profile image
YodaDog

Hi, I take 900mg (3 x 300 doses) at 6.30pm, 9pm and about 10.30-11.00pm as I go to bed. It works really well for me, relieving some of my neuropathy and knee pain as well as my RL symptoms. I was taking 1200mg (in two 600mg pills), but I saw a neurologist with an interest in RL earlier this year and he said it works better if you spread it out more and suggested I might find that I might need less if I spread it out, so I tried 3 x 300mg and it works just as well as 2 x 600mg.

And yes, I think with any new medication, you need to give it at least about 3 weeks to see if it works or not (as long as you can withstand the side effects, of course). Good luck.

Bananie123 profile image
Bananie123

I have been taking gabapentin for 6 years for r.l.s. My normal dose is 3x300mg ( on waking, 5p.m, bedtime ). If I need to take an extra pill because my legs ( and arms sometimes ) won't settle, then I take it. For long car journeys/ plane trips, I increase the dose over a few days prior to the trip ( can go up to 6 tabs a day ) and then gradually decrease back to 3 a day. I have twice flown to Australia doing this.

I also use tramadol for arthritic pain, but no more than 3x50mg a day.

Gabapentin has been a life saver for me. I wish you every success with it and hope it works for you.

Bajatom profile image
Bajatom

Remember not to take Gabapentin within 2-3 hours of taking magnesium supplements or meds containing Mg as it interfers with absorption of the gaba. Also, the larger dose of Gabapentin you take at one time results in a smaller percentage of it being absorbed. My doc said 300mg at dinner and 300 at bedtime. However, since RLS bothers me the most just after midnight, I prefer taking 300 an hour or two after dinner and second dose at bedtime.

Question: has anyone tried first dose at bedtime and second upon first being awakened by symptoms. My doc says no, but seems for me it would work better.

Sampsie profile image
Sampsie in reply to Bajatom

Yes, me. I take extra on waking rather than all at once.

I had no idea re magnesium! I'm taking that at night too. Thanks Bajatom.

BeachGolfer profile image
BeachGolfer

Strangely I had severe insomnia from Gapapentin and Horizant: awake every hour! It’s actually listed as one of the side effects though it seems that complaints of drowsiness are more common.

marsha2306 profile image
marsha2306 in reply to BeachGolfer

I take it around 7 pm cause I used to get insomnia too.

BeachGolfer profile image
BeachGolfer in reply to marsha2306

Glad that worked for you! :)

marsha2306 profile image
marsha2306

I’ve been using it for 4 years.

Joolsg profile image
Joolsg

Have you stopped taking the dopamine agonists?

After withdrawal from Ropinirole, I was on tramadol and gabapentin. The side effects of the gabapentin were not good for me so I switched to pregabalin and it has been much better.

I also take oxycontin and manage to get 90% coverage.

Main side effects on gabapentin are dizziness, balance issues and double vision but for most people they resolve within 2-3 months.

Suhavard profile image
Suhavard

I take 600mg every night. 300mg was not enough, tried it first. Works well for me. I was on requip before and it had stopped working.

wbdetroit profile image
wbdetroit

I've been taking Gabapentin for two years since having lumbar spine surgery, for nerve pain 300mg three times a day. I have to say that the longer I am taking it, the more I don't like it. Sometimes when walking or even just standing, I feel like I am going to fall over, my knees hurt and being tired for no particular reason doesn't help. Plus, sometimes I would still have nerve pain. Recently, my Doctor put me on Amitriptyline as well, so I can sleep. As far as the RLS, I find that taking Magnesium along with a potassium supplement daily, really helps or drinking a can of V8 seems to work just as well, which leads me to believe that maybe this RLS could have something to do with an electrolyte imbalance? At least for me. I am trying to get off the Gabapentin a little at a time, since I have to take an antidepressant anyway, because the problems I am having, I didn't have before taking them. Good luck everyone, thanks for letting me vent.

Readtorelax profile image
Readtorelax

I used Gabapentin but it didn't help me at all and contrary to what someone wrote it did cause augmentation. The neurologist said it sometimes happens. I also have R A and my rheumatologist suggested testing for low iron as that has been found to cause of aggravate R L S. My iron levels were low and I was given two infusions of iron. It has definitely helped with the R L S so keeping my fingers crossed. Hopefully this information may help someone else. I looked it up online and found that low iron levels can contribute to R L S.

JonathanW65 profile image
JonathanW65 in reply to Readtorelax

Many thanks for your support. My iron levels were checked and are OK. My consultants have been aware of the link to iron levels

Lapsedrunner profile image
Lapsedrunner in reply to JonathanW65

When you say “ok” do you mean ferritin over 100 because that’s what we need?

atwitsendd profile image
atwitsendd

Hi Jonathan. I have been on gabapentin, up to 1800 mg day for about 2 yrs. Originally I didn't think it was helping bc l still had mild symptoms. I decided to go off of it and within a cpl weeks I could not figure out why my RLS was so much worse. Then it hit me, I went off the gabapentin. So yes it does work. It may not totally get rid of your symptoms but it alleviates them alot. Good luck.

RoDomHarr profile image
RoDomHarr

I’ve just been prescribed Gabapentin 300 mg once at night. Reading up to see whether to take the plunge.

Context: I took an over the counter L-Dopa supplement which caused augmentation and now on serious withdrawal having quit cold turkey 1.5 months ago.

Wondering if it’s wise to take while in a withdrawal state?

Side effects sound awful, and chances of success really variable. I’m also about to be abroad for three months so don’t know if it’s wise to be trying something new.

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