Losing hope in Gabapentin for RLS - Restless Legs Syn...

Restless Legs Syndrome

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Losing hope in Gabapentin for RLS

Walrob66 profile image
22 Replies

Hi,

I've been on Gabapentin since February, which worked well for a few months, taking 600Mg, however over the last few months I've had to continually increase the dosage, but it's not making any difference. In fact it feels as if my RLS is getting worse.

I, (from this site) understand that the more Gabapentin you take the less effective each tablet is, but I'm unsure if I should continue to increase my dosage.

I believe that your liver can only absorb 900mg in one go, so I take 300Mg at 7.00pm and 900Mg at 9.00pm. This will usually give me 2 and a half, or three hours sleep in one go, and then I take another 200Mg in the night, but then continue to have broken sleep until the morning.

So a total of 1400Mg in a 24Hr period.

I have an appointment with a new GP next week, and wonder if I should persevere with increasing Gabapentin, or push them to move me Pregabalin?

Is Pregabalin a little more stable, or stronger than Gabapentin?

I was very fortunate to find this site when I first found I had RLS a year ago, and so on the excellent advise here, I had my Ferritin levels checked, which are in the high 200s, and 'steered' my GP away from their initial plans of prescribing me DAs.

I'm not on any other medication.

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22 Replies
DURAMAX07 profile image
DURAMAX07

try ropinirole suppose to work well 1/2mg x3 per day adjust if needed

Madlegs1 profile image
Madlegs1 in reply toDURAMAX07

Sorry to say this, but , It is irresponsible to advise anyone to take a Dopamine Agonist without knowing their history.

If the OP has already been on a DA , then that advice would only heap more misery.

I'm wondering if they are taking any form of magnesium ( antacid, laxative etc) because, if so, that would certainly interfere with Gabapentin uptake.

Otherwise, it might be feasible to try Horizant, if available, or then move to Pregabalin as he has suggested.

Cheers.

Walrob66 profile image
Walrob66 in reply toMadlegs1

Hi Madlegs,

Thanks for your help.

I think I'd seen a post from you on this forum about not taking magnesium within two hours of Gabapentin. At that time I checked to make sure that the multi Vitamin I take doesn't contain it, which it doesn't. So the advise you post is greatly received.

I've just 'googled' Horizant as I'd not heard of it, but I believe it's not available in the UK, but will ask my GP.

Again, I very much appreciate you support.

Walrob66 profile image
Walrob66 in reply toDURAMAX07

Hi Duramax,

Many thanks for your kind reply. I've read of issues on this forum with people who have augmented when using Ropinirole. It was the drug that was originally prescribed, but I turned down due to this fact.

So maybe one for me if all other options fail.

Kind regards

Joolsg profile image
Joolsg in reply toDURAMAX07

No don't take Ropinirole. It's no longer first line treatment because of ICD & augmentation risks.

Cobobay profile image
Cobobay in reply toDURAMAX07

I'm sorry but I would never advise anyone you take ropinerole ever, awful drug.

It may just be that the dose of gabapentin isn't high enough to give you the coverage you need. Cumulatively it is high but perhaps the spread out doses are the problem.

Could you try adjusting the time you take it so it's within a more contained time period eg 900mg at 8pm and 700-900 mg at 10pm?

I take pregabalin 300mg in one dose (that is loosely equivalent to 1600mg gabapentin) at around 8pm. I find it helps control both RLS and PLMD symptoms. There are considerable side effects however they are preferable to being unslept!!

So failing gabapentin, as I see it, your options are pregabalin, opioids (codeine, oxycodone Tramadol, buprenorphine) or medically prescribed CBD oil with THC.

There are some discussions on this forum and others about taking a very low dose DA in combination with another class of drug. The point of the low dose is to prevent augmentation.

Were there any major changes for you a year ago that might explain the onset of RLS. Of course it can come about independent of any other changes but the fact ot's a recent phenomenon had me wondering.

Walrob66 profile image
Walrob66 in reply to

Hi Amrob,

I really appreciate your response.

It seems I still have a little more 'head room' with Gabapentin, so will look at different dosages. Interesting that combining with a small dose of DA could be an option for the future. I'd rather not jump ship from Gabapentin until I've exhausted what I can do with it.

Kind regards

Elffindoe profile image
Elffindoe

Hi, just to clarify

Gabapentin isn't metabolised by the liver, so that is irrelevant.

Gabapentin is directly absorbed from the gut into the blood stream and from there it is directly excreted through the kidneys.

When you take a dose it takes about 2 hours for all of it it be absorbed and hence that long until it reaches its maximum level in the blood.

It then takes between 5 and 7 hours for half of it to be excreted through the kidneys. This is called its "half life".

The aim of taking the medicine is to achieve a "therapeutic" level in the blood. The therapeutic level is the minimum amount of the drug which is going to be effective.

HOWEVER, there are three points about this

1) If you only absorb enough of the drug to achieve a maximum (after 2 hours) that is the therapeutic level, then the level will fall below the therapeutic level very quickly. That is, it won't work for very long at all.

2) You therefore need to absorb more than is needed to achieve a therapeutic level. The more you absorb, the longer it will work for. BUT, the more side effects you will get.

3) The therapeutic level will vary between individluals, some people need a higher level and some people less.

It is not the amount TAKEN that is important, it is the amount ABSORBED.

Gabapentin has a variable absorption ratio.

At low doses as much as 80% of it is absorbed (but no more).

As the dose gets higher the ratio aborbed gets less, e.g. at high doses this can be lower than 20%.

SPLITTING the dose means that overall, more will be absorbed, i.e. if you take 300mg and 80% of that is absorbed (240mg), then 2 hours later (after the first dose is ALL absorbed) you take another dose, say another 300mg, then you will absorb 80% of the second dose, (another 240mg). Total = 480mg.

If you take both doses at once, 600mg you will absorb less than 80%,i.e. total less than 480mg.

The gap between the two doses needs to be fairly short. Otherwise, by the time you take the second dose, a lot of the first dose will have disappeared.

OVERALL doubling the dose of gabapentin does NOT double its effectiveness and there comes a point when taking any higher dose has very little extra effect. I have read this quoted as around 1200mg.

If you only get 3 hours before waking again then consider this.

If you only take 900mg, it is not going to remain at a therapeutic level as long as1100mg. Hence you may wake up after a shorter time.

Also if after waking up you take another 200mg, then it may take up to 2 hours to be effective.

In which case it might be more effective to take the "top-up" dose, the same time as the bedtime dose.

In this case I'd suggest taking about 900-1000mg 2 hours before bedtime i.e. perhaps AFTER 9pm and the rest 2 hours before that.

Alternatively.

The absoprtion time for pregabalin is 2 hours. The half life is 6 hours.

At lower doses the ratio of pregabalin absorbed is 90%. At higher doses, this remains constant.

Hence any increase in pregabalin dose, should have the same increase in effectiveness and overall, may need only a lower dose, hence less side effects.

I'd say then

first try afjusting when you take the gabapentin

if that doesn't work, switch to pregabalin.

if that doesn't work, as Dopamine Agonists are still recommended as a second line treatment you could add a dopamine agonist.

Personally, after suffering augmentation then I would never take a DA again, but a low dose DA, addded to gabapentin/pregabalin may be an option.

The DA least likely to cause augmentation is rotigotine or an extended release ropinirole.

The next option, according to the latest recommendations, is an opioid.

Walrob66 profile image
Walrob66 in reply toElffindoe

Hi Elffindoe,

Thanks so much for the detailed information.

It's very much appreciated.

I'm keen to exhaust one medication before having to move to another, so I'm pleased that I seem to be able to try a different strategy with Gabapentin.

I'll give what you suggest a go, and hopefully will see some improvement, however I'm reassured that there are other options if this doesn't quite work out.

Kind regards.

RKM7 profile image
RKM7 in reply toElffindoe

Hi Elffindoe,I need clarification on splitting doses. If I aim to take a total of 900mg, then I should take 600mg 2 hours before bed and then 300mg at bedtime?

Currently I’m taking 600mg 2 hours before bed and I wake up around 1am with symptoms. So I think I need a higher dose that is split. I really appreciate your help!

RKM7

Elffindoe profile image
Elffindoe in reply toRKM7

If you take more than 600mg,i.e. 700, 800 etc then it has been suggested that you split the dose, as near as you can into thirds and take two thirds, 2 hours before bedtime and one third 2 hours before that.

The reason forthis is the unsual absoprtion properties for gabapentin. The larger the dose of gabapentin you take the less of it you absorb. Hence if you take300mg, then you will absorb 80% of it, i.e. 240mg. If you take 600mg you only absorb LESS than than 80% i.e. LESS than 480 mg. At 900mg it's even less. At high doses the absorption ratio can dip below 20%

One way round this is to split the dose e.g. take 300mg and absorb 80% of it and when it's complately absorbed take another 600mg. This will increase how much you absorb overall.

There's no real advanatage to splitting it more times because the time lapsed between the first and last doses is so long, that the first dose will have worn off.

Another way roubd the absorption limitationis to switch to pregabalin. 90% of this is absorbed no matter how high the dose you take is.

The earlier you take a dose, the earlier it will wear off.

Plus the higher the dose you take, the longer it will last, so if you take just enough to get you to sleep, then if it's not enough you will wake up too early.

A way round this is to take a higher dose PLUS take the pre bed dose later and along with the earlier split dose, this should help you both to get to sleep and to sleep later into the night.

Another strategy I've tried is

a) set a gool for how long you would like to sleep (BE REALISTIC!)

b) set a goal for when you'd like to wake up

Then

go to bed the set number of hours before the set waking time.

then gradually, say in half hours changes, adjust the time you go to bed earlier

My original plan was 3 hours sleep and get up at 6. I went to bed at 3am, then 2.30, then 2and so on.

I hope that makes sense and not just a blurrrr.

RKM7 profile image
RKM7 in reply toElffindoe

This is so helpful!! Now I understand the rationale behind the split dosing. So I’ll take 300mg 4 hours before bed and then 600mg 2 hours before bed. Hopefully that total dose of 900mg works for me. I’m hoping for at least 6 hours of sleep but probably not realistic as you say. I know this is a journey so I’ll eventually need to increase dosage further. I think you have recommended switching over to pregabalin after 1200mg. The pregabalin does sound like easier dosing. I guess you start with Gabapentin and then go from there. Again, I really appreciate your advice! I’m preparing to see my neurologist next week and wanted to make sure I was prepared for an informed discussion.

Elffindoe profile image
Elffindoe in reply toRKM7

OK, I hope it goes well.

SueJohnson profile image
SueJohnson

The 900 mg is too much to take at one time. 600 mg is the maximum you should take at one time, so I recommend you take 600 mg for your 1st dose, and 600 mg for your 2nd dose. If that doesn't work and you feel you need more (I take 1500 mg), then you need a 3rd dose, 2 hours before your current 1st dose, with this being the lessor of the 3 doses.

Walrob66 profile image
Walrob66 in reply toSueJohnson

Hi,

Many thanks for your support.

It look like I need to take a bit of time testing out my dosages to find the best one that works.

Kind regards

marsha2306 profile image
marsha2306 in reply toSueJohnson

Not true. You can take up to 1200 mg at one time. Any more than that is ineffective.

SueJohnson profile image
SueJohnson in reply tomarsha2306

Sure you can take up to 1200 mg at one time, but because of the loss in absorption, it won't be as effective.

dklohrey profile image
dklohrey

I have had rls for about 25 years and I am 74 years old. Ropinirole worked extremely well for me for about 23 of those years, though I gradually increased the dosage from 1 mg up to 3 mg over time. Augmentation then set in and I started to get rls symptoms during the day which had never happened before. It took me about 3 months to ween myself from ropinirole. Many sleepless nights. If I had not been retired, I don't know what I would have done. My first option was gabapentin. Starting at 300 mg and working my way up to 1200mg. As many have said, the absorption rate takes some time, so you have to experiment to find the best option. I did not find gabapentin to be very effective, so I went to pregabalin. I am currently at 300mg, which my doctor tells me as the max. dosage recommended for rls. In the U.S. the consider pregabalin to be a "controlled substance" so you have to show additional ID to get it. It can be addictive in higher dosages. So far it seems to be working ok. I think that one of the problems with rls is you forget how to get a good night's sleep. So I am not sure how much of my sleep issues are really rls related. My rls was so bad during all of this that my wife had to sleep in another room. We are now trying to sleep together again and that is difficult as I lye awake at times afraid that I might move around so much that I disturb her sleep. I am hopeful that I will learn to relax again. RLS. How I envy those people without it but I suppose everyone has something going on at one point or another. Good luck with your search for the solution. Patience is certainly part of the answer as you experiment with dosage and time lines.

Walrob66 profile image
Walrob66 in reply todklohrey

Hi Dklohrey,

I really appreciate you taking the time to respond.

I'm just starting out on this journey, so with every little bit of information it builds a better picture for me.

Until a year ago, my wife was jealous as I was able to sleep 8 hours straight through. Things are different now. When in bed, I sometimes find myself saying in my head 'just relax', but we know it's extremely difficult to do so.

Kind regards

Battleground profile image
Battleground

This site has some interesting information but you need to talk anything you read here with your doctor before trying it. I will just tell you of my experience with Gabapentin that works for me as prescribed by my doctor.For RLS and Insomnia I take 1200 mg at 10pm for bedtime at midnight. I learned, again from my doctor, that Gabapentin should be taken all at once before the problem you are taking it for. I am 85 years old and have suffered from RLS and insomnia for 30 years without help and then I found Gabapentin when I was searching on line once again. Took the information I found to my doctor and now 7 months later both of my 30 year problems are under control.

Do your own research about Gabapentin, I found my answers through The Mayo Clinic.

painintheneck1 profile image
painintheneck1 in reply toBattleground

I would space out gabapentin.it works best taken 3 hours apart with a fatty food even battered bread ...did no good for my partner eventually amatriptalin

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