Gabapentin, RLS and PLMA - help re do... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin, RLS and PLMA - help re dosing

magarlick profile image
17 Replies

Dear all

I have suffered from undiagnosed Restless Legs Syndrome (RLS) for 20 years. In recent years - possibly correlated with me taking 100mg Sertraline for depression - this has been made worse by the addition of Periodic Limb Movement while Awake (PLMA). My legs spasm violently for a second or so, every 20-40 seconds. For hours. Lucky me! A few days ago I finally convinced a doctor to let me try Gabapentin.

I started on 300mg taken two hours before bed. No effect. The next night I went up to 600mg and I noticed some amelioration in symptoms. Then last night I did 900mg (300mg, then 600mg about two hours later) and again there was improvement but I still had the attacks - the spasms from PLMA were quite a bit less violent than usual and I still had the horrible creeping RLS feeling.

Antidepressants can take weeks to fully kick in but what about Gabapentin? My question is, do I wait a few weeks to see how I do on this dose (900mg)? Or do I keep increasing the dose NOW until symptoms are reduced enough to provide relief, then carry on at that dose? I understand that I can't take more than 600mg at once, which is a PITA.

Many thanks for your help.

Be well.

Mark

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17 Replies
Joolsg profile image
Joolsg

Gabapentin takes 3 to 4 weeks to become fully effective.The average effective dose is around 1200mg. However, to keep the dose at the lowest effective dose, it might be worth sticking it out at 900mg for another 2 to 3 weeks.

If 900mg then does not work, increase slowly to 1200mg in 2 x 600mg 2 hours apart.

The sertraline, as you discovered, worsens RLS & PLMD, so you should review that with your GP and consider a switch to trazodone or Bupropion.

And, you need to ensure your serum ferritin and iron are above RLS recommended levels and that you're not taking any other trigger meds.

magarlick profile image
magarlick in reply to Joolsg

Thank you so much. Just what I wanted to hear. Yes, I've already discussed Trazodone with my GP and he has given me 150mg to start after I've tapered off Sertraline. Yes, all recommended iron tests as mentioned in the Mayo Clinic New Algorithm are within normal parameters.

Madlegs1 profile image
Madlegs1 in reply to magarlick

Normal is not good enough.My lab says " normal" is between 3 and 156.

Go figure!

Get the actual reading.

Please!😎

magarlick profile image
magarlick in reply to Madlegs1

As I said, they are as they should be according to Mayo clinic. Don't have them to hand right now.

SueJohnson profile image
SueJohnson

I agree with Joolsg. However get 100 mg capsules and increase by 100 mg at a time every couple of days as you may not need 300 mg and you don't want to increase more than you need. The usual effective dose per the Mayo Algorithm as you have read is 1200 mg to 1800 mg. And I don't think you need to wait 2 to 3 weeks if you have been on it already for 3 to 4 weeks.

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, 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.

magarlick profile image
magarlick in reply to SueJohnson

Thanks, Sue. I have not been on it 3-4 weeks. Started last Saturday.

I take a multivitamin, a B complex, magnesium glycinate, and 700mg DLPA.

SueJohnson profile image
SueJohnson in reply to magarlick

They are all safe.

magarlick profile image
magarlick in reply to SueJohnson

I know. 😜

SueJohnson profile image
SueJohnson

You obviously have a good doctor since s/he knows enough to prescribe gabapentin and not ropinirole or pramipexole. Or did you need to insist on them?

In any case since so few doctors in the UK (and elsewhere) are knowledgeable about RLS it would be helpful to know his/her name so we can recommend him/her to others who live near Brighton.

magarlick profile image
magarlick in reply to SueJohnson

I specifically asked for it, as I am aware of augmentation in dopamine agonists.

SueJohnson profile image
SueJohnson in reply to magarlick

At least s/he was willing to give it to you. I would still love to have his/her name.

magarlick profile image
magarlick in reply to SueJohnson

All I can say is Dr Brown, Portslade Medical Centre, UK. Spoke on the phone. Never met him. Have seen exactly two GPs in person since Covid.

SueJohnson profile image
SueJohnson

You mentioned thyroid in your previous post. If you are taking thyroid medicine you may know this but take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate.

Also for your sleep apnea I hope you are using a CPAP machine as controlling your sleep apnea can help your RLS.

magarlick profile image
magarlick

No thyroid medication, and I use a custom-made dental splint for the apnea.

K2D2 profile image
K2D2

I take 600 mg of Gabapentin at 4 pm, 600 mg at 6 pm, and 600 mg at 8 pm. I also do calf stretches morning and evening. I sleep well with no RLS symptoms. It has been like a miracle. Thank goodness my doctor listened to me. Good luck.

magarlick profile image
magarlick in reply to K2D2

I'm so pleased for you. Looks like my treatment is going the same way. Definite improvement after 20 years of hell.

Why did I wait so long?

Long story. For years it was mostly just an annoyance. Didn't really affect my sleep. It would come when I went to bed - or it wouldn't - but it never lasted more than 20-30 minutes so I always managed to get to sleep. The years past and when I started on antidepressants, things started to change. While before it only ever occurred in the right leg, it began switching to the left (but not at the same time). While before it only ever came at bed time, it came while I was watching a movie before bed. While it would sometimes not come for weeks or months, it became daily. Then it would start while I was sitting, not just lying down. Then it began to last not just half an hour, but hours. Then began the PLMA - horrible spasms that accompany the RLS sensations. Each one lasts a second, during which the muscles in my leg relax and contract about eight times. Wait 20-40 seconds. Rinse and repeat. For hours. Sleep deprivation on steroids.

So I had sleep studies done. Yet despite the above happening, by the time of the studies, daily, they did not present ONCE during the studies. No idea why. (One Dr said it was because my symptoms were psychosomatic. I wanted to punch him.) They did find I have apnea and REM sleep behaviour disorder, as if I didn't have enough on my plate.

So because of the RLS/PLMA not being witnessed by a clinician, I could get no treatment. It was only when I finally convinced a doctor to let me try Gabapentin, last week, that things seem to be improving. Still early days and I am not symptom free, but I am optimistic that I will be. Even if I'm not, at least if the RLS can be delayed long enough to get me to sleep, that's a miracle in itself.

Possumpoo profile image
Possumpoo

I have taken Pregabalin 75mg nightly for over a year, with some relief some nights. But a Specialist wanted my haemoglobin checked, and to take iron tablets if anaemic. She also suggested taking Pregabalin with codeine. Great relief every night.

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