restless

[Brookside43]

hi I been on Gabapentin for a while

Some

Times it works sometimes it doesn’t, then gp decided to put me on, amtripline that don’t work every I’m at end of my tether what else can I try

[ChrisColumbus]

Welcome to the forum. You'll get a lot of help and advice here from others who have been through this!

Firstly, let's check whether you have RLS:

rls-uk.org/symptoms-diagnosis

Secondly, did your doctor perform a full panel iron blood test to measure your ferritin and transferrin saturation? This is the first step recommended by NICE as improving serum ferritin helps the majority of sufferers. If you've had a test what were the actual results (as few doctors know what we need and just state 'normal'). If you've not had a test, get your doctor to arrange one for a morning: fast overnight before the test, refrain from any iron supplements (if taken) for 48 hours before. Report the ferritin and transferrin saturation (TSAT) numbers here.

Thirdly, did your doctor review any other medications and supplements that you are on looking for RLS triggers e.g. most antidepressants, sedating antihistamines etc etc exacerbate RLS. List anything that you are on here for advice (NOTE: e.g. amitriptyline is not an appropriate prescription for RLS, and tends to make it worse for most).

Fourthly, was gabapentin the first medication that you were put on for RLS or were you initially on a Dopamine Agonist- pramipexole, ropinirole, rotigotine?

Fifthly, while gabapentin or pregabalin are the correct first line prescription for RLS - how much are you taking and when? It has to be taken at appropriate amounts and times, and doctors often give incorrect instructions for RLS.

[SueJohnson]

If you were never on a dopamine agonist like pramipexole or ropinirole, the gabapentin should work. Let me give you the correct way to take it.

Beginning dose is usually 300 mg gabapentin It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

As Chris said checking your ferritin is important and is the first thing that should be done for RLS. To repeat part of what Chris said and to add to it: When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

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, 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.

[SueJohnson]

If you are or have been on pramipexole or ropinirole reply back here and I may have some other advice.

[Joolsg]

Amitriptyline is a known trigger med for RLS, but, sadly, as UK GPs are not taught anything about RLS, they don't know this.All anti depressants worsen RLS.

So stop Amitriptyline now.

If you list ALL medications you are currently taking, including OTC meds & supplements, we can guide you better.

[Eryl]

I would suggest that the medication is working all the time but it's only addressing the symptoms of rls, not the cause of rls which is varying.Thd cause of rls is commonly inflammation of the nerves a d tbis is commonly caused by foods. If you look on the inter ef for 'foods that cause inflammation' and avoid those that will be a start to resoling your problems.