questions about gabapentin - Restless Legs Syn...

Restless Legs Syndrome

21,640 members15,347 posts

questions about gabapentin

senders profile image
32 Replies

I have severe rls. I have gone through augmentation and had impulse control issues. I went through DAWS when I weaned off pramipraxole. I have been off of DAs for 5 years. I tried to go drug free when I got off but I was going crazy.

I found a dr that prescribed methadone. That helped but it really affected my mental state. I was on methadone for 4 years.

I recently have weaned off the methadone and started gabapentin. I am now taking 2100 of gabapentin 700 at 6pm 700 at 10 pm and 700 at 2 am. It is not really helping. I have symptoms pretty much every night.

The worst part is almost every night at 2/3 am my symptoms are unbearable. Does anyone have any thoughts on why this is happening at 2/3 in the morning? Also any thoughts on if gabapentin will start helping eventually.

thank you,

Written by
senders profile image
senders
To view profiles and participate in discussions please or .
Read more about...
32 Replies
SueJohnson profile image
SueJohnson

You are taking the gabapentin wrong. Taking over 600 mg at a time reduces the effective dose. Also your timing is wrong. Take 600 mg 1 to 2 hours before bedtime. Then 600 mg 2 hours before that, then 600 mg 2 hours before that then 300 mg 2 hours before that.

Since that gets ridiculous I suggest you switch to pregabalin . Dividing the gabapentin by 6 that would be 350 mg of pregabalin. Take it 1 to 2 hours before bed. You can switch directly.

If you stay on gabapentin If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

senders profile image
senders in reply to SueJohnson

Thank you I will give it a try

JustVisiting23 profile image
JustVisiting23 in reply to SueJohnson

Hi Sue:

Does a protocol such as this also apply to Horizant? Thank you.

SueJohnson profile image
SueJohnson in reply to JustVisiting23

No. Take at 5:00 pm with food because the bioavailability is greatly increased (33% to 118%, depending on the meal's fat content. Magnesium and calcium do not affect it.

JustVisiting23 profile image
JustVisiting23 in reply to SueJohnson

Much appreciated! Thanks

SueJohnson profile image
SueJohnson

How long have you been taking the gabapentin ? It takes 3 weeks to be fully effective?

How long were you on DAs? If for a long time, it is possible your dopamine receptors are damaged and neither gabapentin nor pregabalin will work.

senders profile image
senders in reply to SueJohnson

I have been taking gabapentin for months now. I started taking it when I started weaning off the methadone. I was on the DAs for 5 or 6 years.

SueJohnson profile image
SueJohnson

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

senders profile image
senders in reply to SueJohnson

My question is why would taking the gabapentin earlier in the day help my symptoms at 2/3 am? I am going to try it. I am just curious.

SueJohnson profile image
SueJohnson in reply to senders

Taking them 2 hours apart they build on one another so you have a more effective dose that should last through the night.

senders profile image
senders in reply to SueJohnson

Thank you so much!!!! I trust your knowledge about how to take it over my Doctors.

senders profile image
senders

I have had rls my whole life. It wasn’t this bad until I took the dopamine agonists

senders profile image
senders

I have been following this forum for years. I really appreciate your knowledge

nocturne profile image
nocturne in reply to senders

I'm sorry about what you're going through. I was unable to tolerate Gabapentin at all, and am now on Codeine-acetaminophen, which controls it, more or less. I take one to two #3 pill per night, as needed. And you might be interested to know that when I need it is always between 3:00 and 3:30 pm, like clockwork. I learned from this forum that Tramadol is the only opioid that causes augmentation, so please be careful if you choose that route. If and when my codeine-acetaminophen stops working, my doctor will switch me to low-dose naltrexone. And if that doesn't work, Buprenorphine,

senders profile image
senders

I wasn’t on any other meds when taking the DAs and it never got better after getting off of them. I tried going without meds but it was hell. I was never on trazadone I was on methadone and no ssri

senders profile image
senders

Sorry that profile is not me

senders profile image
senders

No I’m sorry that is not from me. I just checked and there is nothing like that from me.

senders profile image
senders

Sorry DesertOasisyou are correct I did write that . I have been going through so much hell that it all runs together. I don’t remember a time when my rls hasn’t been controlling my life. But I am really sorry because I thought I went all the way back in my history but I hadn’t.

I am so grateful for this forum. Everyone is so knowledgeable and helpful. Thank you

Keith1231 profile image
Keith1231 in reply to senders

Senders, don't fret, its easily done. Its also good that DesertOasis picked it up so the system is working. The main thing is getting you the support.

art37 profile image
art37

I have had RLS for two years, Sifrol being my meds, I have recently started taking medical cannabis and am finding it very helpful. Now to get off Sifrol.

Coeso profile image
Coeso

Sorry to hear how much you are suffering. I also took da's for many years and of course augmented. I tried many things but found that gabapentin has helped with my daytime rls. In fact it has stopped but at night it starts up. I had reached 2400mgs gaba but still had nighttime rls, so I have slowly reduced the gaba. I take 600 at 5, 300 at 7 and 600 at 9. Altogether 1500mgs, but at night I take 50mgs tramadol. At the moment it's working perfectly with no rls at all. I am madly touching wood here. I'm scared of the tramadol augmenting but at the moment but let's see what happens. In my country they won't give anything stronger. By the way I did try pregabalin but unfortunately I put on so much weight. My dopamine receptors are obviously damaged too. Good luck

SueJohnson profile image
SueJohnson in reply to Coeso

Did you mean 300 mg at 5 and 600 mg at 7:00 which is the correct way?

Coeso profile image
Coeso in reply to SueJohnson

At the moment I take 600mg at 5pm, 300mgs at 7pm and 600mgs at 9pm together with 50mgs tramadol. It seems to be working for now.

Magna7789 profile image
Magna7789

I have been on this site a few times as I have suffered with RLS for many years. I understand the frustration and hopelessness that we feel with RLS. Lack of sleep affects us on so many different levels not on physically but mentally as well.

I just want to let everyone know what works for me however this may not suit everyone. I tried to get off Pramipexole but couldn’t as the nights were unbearable. So I ended up doing a trial of Gabapentin and Pramipexole together and played around with doses - I felt safe doing this as I followed pretty much what the Mayo Clinic recommended.

I take 600mg of Gabapentin at 6pm. I then take another 600mg of Gabapentin with .375mg (1 and 1/2 tabs) Pramipexole at 8pm.

I might have some restless legs for a short while but then fall asleep on the couch between 9.30-10.30pm every night. I sleep through most nights and only occasionally get up to use the bathroom.

I am no longer concerned about being on Pramipexole or trying to come off of it as it is a low dose and I don’t have augmentation and together with Gabapentin I manage to sleep very soundly throughout the night.

SueJohnson profile image
SueJohnson in reply to Magna7789

.375 mg is not a low dose. .5 mg is the max. You will suffer from augmentation on it. You probably tried to reduce it too quickly. Even the Mayo Algorithm recommendation is too quick.

Carlettejaque profile image
Carlettejaque

I've been on Gabapentin for 4 years. It can take up to 3 months to be effective. I take 900mg at 7am and 900mg at 2pm and last dose of 800mg at 9pm. I take it for neurological skin pain (all over prickling). It has been said that gaba doesn't work over 600mg. Thats not necessarily true.. If I take less than the dosage I'm on then the pain comes back with a vengeance. I can't even reduce by 100mg. I also have erythromelalgia. If I don't get my feet cold enough then it leads to RLS. The gabapentin does nothing for that condition.

Mongolia2020 profile image
Mongolia2020

do you mind if I ask you how methadone affected your mental state? I have restarted methadone and I have my suspicions but would rather know sooner than later if it is not the right path for me. I am also very interested in DesertOasis suggested regime.

senders profile image
senders in reply to Mongolia2020

I was moody and I was very angry and aggressive and would lash out. I am a rock climber and it messed with my vision and heart rate. I was terrified and could not really do the thing that I love.

I also think that I went through a mini withdrawal every day because I was always having the hot then cold body temperature that I thought I was being menopause. Which I am at that age that it could be possible. But now that I am off of it my moods are better I can climb again and I don’t experience the hot cold everyday.

Mongolia2020 profile image
Mongolia2020

Thank you, I appreciate you sharing. I am getting the hot and cold feeling also, and I feel somewhat anxious when I have never suffered anxiety before.

Did you consider buprenorphine at all ?

senders profile image
senders in reply to Mongolia2020

I have but getting the opiates from the pharmacy is such a pain. Evey time I went to get the methadone there was always a problem and I had to have the doctor call the pharmacy. I really don’t want to have to deal with that unless it is my last option.

Mongolia2020 profile image
Mongolia2020 in reply to senders

I tried gabapentin and Pregabalin, together with codeine. I believe the gabapentin gave me suicidal thoughts and I did not believe the habapentinoids worked and only the codeine was working, but I needed too high a dose and the side effects were too great, hence I requested methadone.

I have since learned on this site that if you have been on DAs for a long time ( I had), then your dopamine receptors may be down-regulated and this might be irreversible, and that alpha2ligands ( gabapentin and Pregabalin) may not work.

HipHop1972 profile image
HipHop1972

Hi Senders, I’m sorry as have no experience of Gabapentin but if you search posts, especially Joolsg in UK or super Sue in the USA that they will have lots of information to help you.

Best wishes HipHop1972

You may also like...

Question for Ellfindoe or Joolsg about Gabapentin please

absolutely no RLS during the day time, and much better RLS at night (just shows how the...

Worries about Gabapentin

failing me or my RLS was getting worse. My doctor had put me on Gabapentin 300 mg at night and I...

Now on Gabapentin, not sure about it.

I have had rls for over 30 years, and many years ago I was given Pramipexole. I refused to increase...

Length of gabapentin

I have severe RLS . I have gone through hell from pramipraxole, augmentation, impulse control issues

Question about Quinine

with my night time meds but the RLS had already kicked in and it takes me hours to eventually fall...