Gabapentin not working as yet - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin not working as yet

Lizzybuz27 profile image
29 Replies

Hi

Ive been on gabapentin for 5 weeks now. I previously posted saying my doctor had prescribed 100mgs 3 times daily. I was advised on forum as I thought, that this dose was useless, and I'd be better taking at night and upping dose gradually. So I'm now to to 900mgs at night but still not seeing any improvement in restless leg symptoms, probably worsening of symptoms, and awake half the night. Feeling very distressed and tired. I know it can take a while to get gabapentin into system. I've not been on 900mgs long. I'll need to speak to gp again. I know you can increase dose further. I do want to avoid a dopamine antagonist but as I previously discussed, I was originally told as I was on lamictal, that that was all that was on offer to me. I suggested gabapentin to try. I am uk based and feeling disheartened.

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Lizzybuz27
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29 Replies
LotteM profile image
LotteM

Hi Lizzy, this sounds disheartening indeed. Maybe gabapentin will not be effective, but according to the guidelines, you have room to increase. Or switch to pregabalin, if higher doses still don't work. They are similar meds, but not the same.

I hope you know about the recent updated guidelines? They may help you and your doctor to decide what is best for you: mayoclinicproceedings.org/a...

Lizzybuz27 profile image
Lizzybuz27 in reply toLotteM

HiThankyou so much for replying to my post and for providing me such a useful attachment. I will speak to my doctor and suggest an increase before giving up. I am awake nightly at least four times. It can really drag you down. Hopefully something helps

Thanks again.

shredderton profile image
shredderton

Yeah i am also skeptical of gabapentin. i've been on it for a few months and still not sure if it's helping much. i am going off of the dreaded pramipexole though. still looking for the silver bullet!

Lizzybuz27 profile image
Lizzybuz27 in reply toshredderton

Oh I hope we both find that siver bullet. The sleep deprivation is just awful.

Here's hoping!

Madlegs1 profile image
Madlegs1

Just to mention that if you are taking any sort of magnesium with the Gabapentin, then it will interfere with the uptake.Leave at least 2 to 3 hrs between them.

Lizzybuz27 profile image
Lizzybuz27 in reply toMadlegs1

Hi thankyou. Im not taking magnesium but thanks for advice.🙂

Elffindoe profile image
Elffindoe

There may be several reasons why the gabapentin isn't wortking.

The first : gabapentin doesn't work for everyone, you may be unlucky.

The second : although you've been taking it several weeks, you may not have been taking a sufficent dose for several weeks.

The third : you may nopt be taking a high enough dose. The process for gabapenbtin is to start at 300mg then gradually build up the dose in steps of 300mg until it starts working. The miniumum effectfive dose is about 900mg, but you may also read that a more typical dose is between 1200mg and 1800mg.

See the link that Lotte gave you.

The fourth : If gabapentin is the first thing you've tried for RLS. Who diagnosed the RLS?

Gabapentin works more often than not, it shouldn't make RLS worse. If as you say it's making your symptoms worse then it's possible you don't have RLS.

There are two other remedies for RLS that you may not have considered and are recommended in all cases.

1) Iron therapy : iron deficiency is the main cause of RLS.

2) Avoidance of exacerbating factors.

Again see Lotte's link.

Obviously you can't keep increasing the dose of gabapentin indefinitely, The max is 2700mg for RLS in the UK.

Because of it's absorption properties, doses above 600mg should be split. One 2/3 of the total dose dose 2 hours before your symptoms usually start and the other 1/3 two hours before that.

There comes a point at which increasing the dose any further doesn't make it any more effective. This is about 1200mg. If you find you need more than 1200mg it may be better to switch to pregabalin which is more effective in a single dose at higher doses.

200mg is equivalent to 1200mg gabapentin.

Lizzybuz27 profile image
Lizzybuz27 in reply toElffindoe

HiThanks for all your detailed advice. Much appreciated. My doctor diagnosed rls after taking history and bloods which she said were normal . I had restless legs for a while , but it was not severe at all , and I didnt require meds However around 5 months ago it worsened and began keeping me up once or twice nighty but has progressed to wakening me 4 or even 5 times nightly. All the symptoms point to rls ..the sensations starting as I fall asleep and wakening me periodically overnight night. Relieved when walking. I'm OK during the day I think my condition is just worsening and I dint think gabapentin worsening it just not helping it as yet.

I am just hoping increasing the dose eventually helps

My doctor wanted to initially start me om dopamine antagonist which I didn't want to take as first line due to potential side effects and risks of augmentation which she was totally unconcerned about. I suggested gabapentin. She prescribed 100mgs 3 times daily which was of course useless.

Thanks again for all your advice.

Elffindoe profile image
Elffindoe in reply toLizzybuz27

I think you're referring to dopamine agonist NOT antagonist. The latter would make RLS worse.

All blood tests "normal" is actually not much help for somebody with RLS.

You need to know the actual results, especially ferritin, presuming this was done.

Please read the section on iron therapy in the link Lotte gives.

The fact that your RLS has quite quickly grown worse suggests something has triggered it. Had anything else changed when it started getting worse?

Are you taking any other medication?

Lizzybuz27 profile image
Lizzybuz27 in reply toElffindoe

Hi apologies I meant dopamine agonist not antagonist. Yes I will be asking for blood results. Ive read information on iron therapy. My dog died at around the time my symptoms worsened so maybe stress has aggravated my symptoms. We have had a rough year with my husband having long covid, after being very ill with covid too with pneumonia and pleurisy I'm taking simvaststin as now have high cholesterol and hrt and lamictal.

Elffindoe profile image
Elffindoe in reply toLizzybuz27

Yes stress is aftactor. I hope things improve for you.

Lizzybuz27 profile image
Lizzybuz27 in reply toElffindoe

Thankyou 🙂

BocaMom profile image
BocaMom in reply toLizzybuz27

HRT . . . does this include testosterone? I have finally figured out that testosterone is probably responsible for dropping my ferritin (iron), hence worsening my RLS. Something to consider.

Lizzybuz27 profile image
Lizzybuz27 in reply toBocaMom

Hi no testosterone.

BocaMom profile image
BocaMom in reply toLizzybuz27

Ok good! Though I love a little testosterone unfortunately.

samcat1 profile image
samcat1 in reply toLizzybuz27

My thoughts are if you are not having symptoms during the day then why are you taking the gabapentin in the day? My doctor prescribed me gabapentin for night only because that's when I have symptoms. Plus it makes me sleepy. I wouldn't want to be sleepy during the day. I Started with 100 mg capsules for a week then 200 mg per night. I'm a light weight for some drugs. So I now take 2 before bedtime and have had no problems since. I already tried the dopamine agonist for 6 months then I got the back lash big time. The dopamine agonist is no longer the first line of medication for most experts because of the augmentation will come sooner or later. The new 1st line drugs are now the Alpha-2-delta drugs of which gabapentin is one of them. I recently read this for Mayo Clinic and I think John Hopkins. the dopamine agonist drugs are no longer the first line of meds they should give for RLS. The backlash for me was Horrible on Requip!!!

Lizzybuz27 profile image
Lizzybuz27 in reply tosamcat1

Hi I was prescribed them during the day... but I take them only in the evening. Yes I definitely would be going down the line of gabapentin, although they are not generally first line drugs in the UK.. I was initially prescribed a dopamine agonist, but I didnt want to take it, as I read about augmentation... although this was never pointed out to me by my doctor. It was me who suggested I try gabapentin, to my doctor, and it was prescribed at 100mgs; 3 times a day, which was of no use to man nor beast . I am now on 900mgs in the evenings abd I think I am starting to feel a difference now. Fingers crossed.

SueJohnson profile image
SueJohnson

I find taking the 300 mg of gabapentin as the 1st dose and the 600 mg of gabapentin as the 2nd dose which is the opposite of what elffindoe suggested works better because the higher dose is closer to when you go to bed. If you go higher than 1200 mg, then take a 3rd dose 2 hours before the 2nd dose so you are never taking more than 600 mg in a dose.

Lizzybuz27 profile image
Lizzybuz27 in reply toSueJohnson

Hi thankyou for your advice. Much appreciated 🙂

Elffindoe profile image
Elffindoe in reply toSueJohnson

Just to pont out, as I wrote "One 2/3 of the total dose dose 2 hours before your symptoms usually start and the other 1/3 two hours before that." seems to be the same as you write, NOT the opposite.

SueJohnson profile image
SueJohnson in reply toElffindoe

Whoops. My mistake. Sorry about that. I guess my stupid brain saw "one 2/3 of the total dose dose 2 hours before" and ignored "your symptoms start" and instead imagined it said "before your nightly dose". No excuse, even though I have had some brain fog because of recent surgery.

Hope61 profile image
Hope61

HiI was told Lamictal was a mood stabilizer. Can you tell me why your doc suggested that for RLS ? Did it do anything ? Just curious- thank you :)!

Lizzybuz27 profile image
Lizzybuz27 in reply toHope61

I take lamictal for epilepsy but I think it can be prescribed as a mood stabiliser in a different dose. I dont take it for rls. I'm on gabapentin for that .🙂

Hope61 profile image
Hope61

Ok I understand thank you !

bergfex profile image
bergfex

Hi Lizzybuz27, I suggest you talk to your GP about switching to pregabalin which is licensed for RLS. 150mg is equivalent to 600mg gabapentin. Alternatively you could use gabapentin enacarbil which also is licensed for RLS, but with less side-effects than gabapentin. This from someone who is in the same boat also taking lamotrigine for focal impaired awareness seizures. Good luck from an anaesthetist.

Elffindoe profile image
Elffindoe in reply tobergfex

Gabapentin enacarbil is not available in the UK.

Lizzybuz27 profile image
Lizzybuz27 in reply tobergfex

Thankyou so much for your kind reply. I'm waiting on my doctor calling regarding dosage but yes perhaps gabapentin may be better. I will see what he says. 3 x 100mgs they prescribed gabapentin can never cut it . Thank you from a staff nurse in the uk🙂

Hope61 profile image
Hope61 in reply tobergfex

I just started Gabapentin- what side effects ? Is there a safer med ? So far at 400 mg not doing much and I am exhausted

Lizzybuz27 profile image
Lizzybuz27

Hi thankyou for all your advice.That is very interesting how if you take your gabapentin at 8pm instead of 7pm the effectiveness Is halved! Do you only take 300mgs or a bigger dose a couple hours later as well ?

Cheers

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