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Restless Legs Syndrome

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Gabapentin

ToJa2 profile image
12 Replies

Hi

I have posted before about Gabapentin but my Neurologist has now finally written to my GP with recommendations and I can now get this on prescription.

I have been prescribed 25mg (liquid dose) 2 hours before bed and to increase this dose every two weeks until I get to 100mg. At this point she said I could then decrease the Ropinerole by 0.25mg every few weeks to then eventually stop it. She has also recommended another blood test for iron.

I have a son who works in a pub which means I have to pick him up from work, sometimes late at night. Can I still drive if I take the Gabapentine before hand? And if I wait till I get home (sometimes 1am) will that then mean I’m really groggy the next morning as I also get up quite early!

Thanks for advice.

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ToJa2
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12 Replies
ironbrain profile image
ironbrain

My experience is that you should very definitely not try to drive taking gabapentin, certainly not until you are absolutely sure of its affect on you, and maybe not even then. It can be much worse than alcohol, not least because there's no sense of becoming "intoxicated": you just go to do something quite normally and your spatial judgment is all out – you might even fall asleep standing up (and hopefully wake up before you hit the ground) or even have a syncope.

People's experience with the drug vary, and 25 mg is a low dose – I was on 300 mg (to no effect) – but my general advice is as stated.

Elffindoe profile image
Elffindoe

You've taught me something!

I've never heard of gabapentin liquid before.

I suspect it's designed for children or cats and dogs.

The dose

300mg a day is the recommended starting dose for RLS in adults. It can be the increased by 300mg every week or less.

The minimum dose you may need to be effective for RLS is said to be about 900mg, but it's also said a typical effective dose is between 1500 and 1800mg.

You'd have to drink a lot. I suggest getting capsules. They're 300 mg or 100mg.

Since you mention driving, I presume you're not a child, (dog or cat).

I guess then that 25mg isn't going to have much effect on your driving ability. That is unless you are a very small adult.

I also imagine, more significantly, that it will have zero affect on your RLS.

Even 100mg is one third of the starting dose and probably won't be noticeable either.

Please forgive me, I'm not often sarcastic in this forum, but is your doctor a paediatrician or a vet?

If you were to take at least 300mg, then even if this were enough, it won't start working for a least 2 to 3 weeks. However I doubt it will work very well whilst still withdrawing from ropinirole.

However, you may experience side effects immediately. These include vertigo and drowsiness. These usually fade after a few weeks after you've reached the full dose.

In the meantime, it's up to you to judge how fit you are for driving. Note that after you take it, it won't be fully absorbed for 2 hours or more. There may be a "window" then between taking it and getting drowsy.

But do take what ironbrain says seriously, it's risky, but only at first.

ToJa2 profile image
ToJa2 in reply to Elffindoe

No I’m not a child or cat/dog 😳I assume that once I’m on 100mg then I’ll switch to capsules. I did stress to her that I was particularly worried about the side effects so maybe that’s why I’ve been started in such a low dose. Does it make you drowsy in the mornings? And does this also pass after a few weeks?

Thanks

Elffindoe profile image
Elffindoe in reply to ToJa2

Sorry if my remarks offended you, I was simply amused at your Dr's action.

As I wrote before 300mg is the usual starting dose, but if you're over 65 then it's 100mg, starting dose.

100mg is probably low enough to allow you to get used to it. 25mg is just laughable and only makes it signficanlty longer for you to get up to an effective level.

Don't expect anything less than 900mg to work.

This is what the UK national guidelines on the management of RLS state about gabapentin

"Initial dose: 300 mg if the person is under 65 years old and 100 mg if the person is over 65 years old.

Titration: maximum recommended dose for RLS is 2700 mg.

CKS did not identify any specific guidance on dose titration for use in RLS. However, for other indications it is recommended that gabapentin therapy is initiated at 300 mg once daily on day one, twice daily on day two, and three times daily on day three, followed by further increases in 300 mg/day increments every 2–3 days to the maximum dose if required"

(NICE 2020)

The difference between gabapentin for RLS and for other indications is that for RLS gabapentin is only needed once, or at most twice a day. If twice, both doses in the evening.

Side effects can be quite severe at first and consist of vertigo, drowsiness and difficulty waljing. Another good reason for only taking it at night. As you get used to it, these side effects should fade.

The drug affects people to different degrees, I found the drowsiness appeared about 2 hours after taking it and wasn't too bad in the morning. I hope it's obvious that the higher the dsoe,then the greater the side effects.

There are many longer term side effects, but not everybody experiences them ior to the same degree.

Blurred or double vision is common. Weight gain can occur but not for everyone.

Thye trick is to find a dose that relieves your symptomns to an extent that your satisfied with whilst only causing side effects you can put up with.

Carlettejaque profile image
Carlettejaque

Hi, I'm on 2,400 mg per day (800mg 3x a day). Its a very high dosage but i need it for neuropathic skin pain. It can make you feel a little drunk, foggy brained and drowsy. Not so much on a low dose. It takes about 3 hours to kick in but I would not recommend driving after taking it. Read the patient information leaflet or discuss with your GP.It does cause significant weight gain.

Elffindoe profile image
Elffindoe in reply to Carlettejaque

Have you considered switching to pregabalin? This is more potent and hence only requires a lower dose.

The pregabalin equivalent of 2400mg gabapentin is 400mg.

Gabapenbtin doesn't cause weight gain for everybody, it differs, but obviously the higher the dose, the more likely it is to happen.

Carlettejaque profile image
Carlettejaque in reply to Elffindoe

I've been told the gabapentin will eventually stop working so the pregabalin would be the next drug. I dont want to take it until i really need it.

Elffindoe profile image
Elffindoe in reply to Carlettejaque

I don't think what you've been told is quite accurate.

Since gabapentin and pregablin are more or less identical in how they act, if gabapentin should stop working, then pregabalin probabaly won't work either.

The next drug option would be an opioid.

Carlettejaque profile image
Carlettejaque in reply to Elffindoe

Hmm, not sure about that. I'm not altogether sure an opioid would stop neuropathic pain. Opioids are really addictive and while getting off the gabapentin I would have to take both. I would be drugged up to my eyeballs! Someone suggested cylicibin. But it's illegal.

Elffindoe profile image
Elffindoe in reply to Carlettejaque

Sorry I forgot about the nerve pain, opioids won't work for that.

I only meant that an opioid is your next step for your RLS.

What I said about pregabalin still holds however.

If you mean Psilocybin, then it is still illegal, but I believe it's being considered to legalise it.

It would be prescribed for depression/anxiety, I'm not sure it has any pain relieving properties nor if it would help with RLS.

In the meantime, as it is illegal, it may be hard to obtain any.

Carlettejaque profile image
Carlettejaque in reply to Elffindoe

At present I only have mild RLS. I have it in conjunction with hot feet syndrome which for me is worse. I can control it by making sure my feet are very cold all the time. Its a bit of a faff using pet cooling pads, ice gel slippers and ice water soaks in bowls of water. I put ice packs between my feet at night and keep my feet and lower legs uncovered. Its easier coping during the winter. Summer was a struggle. I've had it a year now. My feet get hotter and hotter until they burn. If i dont get them cold then it leads to the RLS. The psilocybin apparently works if used as micro dosing. As micro dosing it doesnt cause any psychadelic effects or any highs. Sits said that it 're wires the brain and stops a lot of pain from various conditions but as you said, its not obtainable in this country. What a shame.

Elffindoe profile image
Elffindoe in reply to Carlettejaque

This is a little odd. Since gabapentin is an effective treatment for RLS, it seems unusual that you have symptoms despite taking 2400mg gabapentin.

I guess the hot feet symptoms are unrelated to your RLS.

In addition although you may feel you have mild RLS, this may be because the gabapentin is controlling it. Without ot, your RLS may possibly be severe.

Yes a shame about the psilcybin.

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