Gabapentin not working?

[Indigirl99]

I wonder if anyone else has experienced this? I used to be on Ropinerole and moved to Gabapentin over the course of the summer. I’ve been up to 1800mg a night (5pm, 7pm, 9pm) for the last couple of months and still finding RLS a problem. The pattern is often this - when I go to bed I wait to see I can get off to sleep ( I hate taking meds if I can help it), the answer is usually no so I take a codeine phosphate tablet at 11:30/12 which takes about an hour to calm things down. I don’t sleep long, an hour maybe before the RLS wakes me up and I take another codeine phosphate (2/3am), another hour approx for that to work and I’m up at 6:30am. The weekends are great as I can sleep till 8/9am. What worries me is where I go with this. I see from posts here that 1800mg is the top end of the recommended dose. I cut out alcohol, caffeine and sugar earlier this year, I’ve always taken moderate exercise, I’ve a pretty healthy balanced lifestyle really. I get my ferritin checked quarterly so I know that’s ok. Any help or suggestions gratefully received! Thanks, and Merry Christmas!

[SueJohnson]

It's not the top end of the recommended dose. It is the top end of what dose works for most people. There are two possibilities. 1) you are still not taking enough. The most you can take is 3600 mg. At this point since you are already taking in in 3 doses, to increase it, it would be better to switch to pregabalin which can be taken all at one time 1 to 2 hours before bedtime and increase from there by 25 mg every couple of days. The equivalent dose of pregabalin to 1800 mg of gabapentin would be 300 mg. 2) If you were on ropinirole for a long time, say 10 years, it is possible your dopamine receptors were damaged and gabapentin won't work. In which case you will want to come off gabapentin and switch to a longer acting and more potent opioid than codeine. However you said you were only on it for 5 years, so that is unlikely. As I mentioned before, to come off gabapentin, do so very very slowly or you will have withdrawal effects. If you do so slowly enough you won't have any.

[Indigirl99 in reply to SueJohnson]

Great thanks Sue, that makes sense. Sound advice as always. I’ve got a review with the doc in 3 weeks time so I’ll take this info into that.

[Simkin]

Just to mention that I am on 2,100mg of gabapentin with no side effects.I was taking it 3 times a day morning, noon and night with no success but am now going to try the split evening dose.

Unfortunately I personally cannot switch to pregablin as I had severe side effects on pregablin.

I did not know about codeine phosphate for RLS??? Does that not make you constipated???

I still have a glass of wine every evening with my supper as I feel I must have some enjoyment in life!

Also when I tried cutting it out some years ago I still had RLS!

[Munroist]

Do you know what your ferritin number actually is or do you rely on the normal assessment that anything between 16 and 250 is normal? For RLS sufferers over 100 is preferred and the closer to 200 the better.

[Jetto]

IndiGirl

Sorry your having problems w RLS. MY experience w RLS is it is a resting disease. Therefore your problems w it are when resting in bed.

Opioids help RLS by connecting to your brain pain centers and say stop sending pain signals, so opioids are to stop RLS pain from happening.

Codine has a short life and taking it after getting RLS pain is a tough life.

I went to see a RLS specialist doctor that I got off the RLS.org website. Dr Early put me on Methadone that is the longest lasting opioid. Therefore you need very small amount to sleep.

IndiGirl if you wake up and have RLS severe discomfort exercise hard for a minute, then go to bed and if your symptoms are not gone concentrate hard on exercising in your mind. If this does not allow you to sleep then exercise some in bed by lifting up your legs or feet just a little or add in torso too if needed while exercising in your head. It seems nuts that this helps but our problem is neurological.

Jetto

[Jetto]

oh, you can also exercise hard enough to breath hard always makes all symptoms go away for awhile, so go right to bed and usually you can get to sleep before it comes back. Jetto

[dklohrey]

I am taking 1200mg of gabapentin and the results have been just ok with me waking up several times a night and getting maybe 5-6 hours of sleep. I have recently been prescribed 50 mg of trazodone (my doctor said that I can go up to 150 mg if necessary) which I take just before bedtime. It takes away any anxiety that I might be feeling and allows me to fall asleep quickly and if I do wake during the night, I quickly fall back to sleep. I get about 6-7 hours of sleep a night and it is much more a quality sleep than I was getting before. By the way I too used requip for about 20 years before augmentation kicked in. I have tried both gabapentin and pregabalin with similar results except that pregabalin tends to give me constipation.

[Memmy]

I tried with pregabalin for quite a long time. I'm afraid it did nothing to help my RLS so I slowly stopped it. Others have good results. I hope it works for you

[billy_in_slo]

Hydrocodone 10/325 + 300mg gabapentin every 4 to 4 1/2 hrs. Been dealing with rls for 50 years. I have a good primary who's been treating me for 40+ yrs.

[SueJohnson in reply to billy_in_slo]

Why are you taking the gabapentin every 4 to 4 1/2 hrs? It is usually only taken at night. If you decide to test whether you need it that often, add the amount you eliminate to your dose at night. If you find you don't need it during the day, then very slowly reduce what you added to your nighttime dose or you will have withdrawal symptoms. If you do so slowly enough, you will have none.

[billy_in_slo in reply to SueJohnson]

Thanks, I'll try that. I started taking it with the Vicodin dose as I was taking the Vicodin every 4 hrs and my doc wanted to reduce that. I don't like the gabapentin but it seems to help.The Vicodin was great, no side effects accept what is imposed on us legit users by society and the feds.

[SueJohnson in reply to billy_in_slo]

Why don't you like the gabapentin?

[billy_in_slo in reply to SueJohnson]

General side effects. I'm probably used to it now but headache, dizzy, night sweats, groggy. It's no sub for the Vicodin but I am able to be less dependent on the Vicodin, which makes the doc happy.

[SueJohnson in reply to billy_in_slo]

The dizziness and grogginess will not be a problem if you take it at night and perhaps not even the headache although if needed you could take something for it.