finally off of Ropinirole ,what next?

[Allatonce]

I have had 2 sleep study’s since diagnosis 10 years ago.

Not just legs but lim and torso movements.

First put on Ropinirole 2mg and slowly upped to 6mg then down to 4mg

Used Ropinirole 4mg combined with gabapentin but made we feel very unwell and didn’t help with the rls.

After another sleep study I’ve been given a cpap machine as well, not sure if this helps at all, but will try anything.

I have finally got the specialist to agree that I can try something else apart from Ropinirole ,so without any help from them I have weaned myself off of it.

I am now on 60mg of codeine phosphate each night, unfortunately that doesn’t seem to work very much at all.

I’m not sure if I should try gabapentin on it’s own or something else.

I’m so tired I can’t think straight most of the time.

I go to sleep quickly most nights but wake up still exhausted after 7-8 hours asleep.

Any help would be greatly appreciated!

[SueJohnson]

You could try gabapentin again on its own or pregabalin which is pretty much the same except you don't need to split the doses. I'm a little confused though since you are able to sleep 7 to 8 hours why you would need anything for your restless legs. If you are having RLS in the daytime, you might want to increase your codeine. According to the Mayo Clinic Updated Algorithm 60 to 80 mg is the usual effective dose. If you are tired during the day you could try taking medicines for ADHD like adderal in the morning when you wake up.

[Allatonce in reply to SueJohnson]

thanks for the quick reply,I fall asleep but never reach deep sleep.I’m unaware of my movements generally.

Occasionally they will wake me up and then I fall back to sleep

Thanks

[SueJohnson]

Have you had your ferritin checked. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not, when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Allatonce in reply to SueJohnson]

hi thanks for the quick reply.

ferritin levels regularly checked and ok

Thanks

[SueJohnson in reply to Allatonce]

Do you know your actual ferritin number? Doctors will say they are OK but what is OK for others is not OK for those of us with RLS. Also, did you fast after midnight, take the test in the morning and stop taking any iron including in a multivitamin 24 hours before the test? If not your ferritin will be higher than it really is?

[Allatonce in reply to SueJohnson]

Hi yes to all the above.

ferritin level was over 100 and has been when checked 3 times before

Thanks

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

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.

[Joolsg]

Did you reduce Ropinirole slowly? Going from 6mg to zero usually takes about 6 months.It takes at least 2 months for RLS to settle after withdrawal from Ropinirole.

If you're exhausted after 8 hour's sleep, it could be that you still have severe PLMD and are moving too much during sleep.

Codeine is the least potent opioid and you may need an alternative medication.

If you've been given a CPAP machine, it will be because they observed sleep apnoea during your sleep study. That also causes tiredness, because you aren't getting enough oxygen during sleep and your sleep is very disrupted. Definitely use the CPAP for at least 2 weeks to see whether the tiredness goes. If not, then you could ask for gabapentin.

[Allatonce]

hi thanks for the reply

I did it over 2.5 months, I have been wondering how long it will be in my system that’s very useful thanks

[AcityKev]

I was on a combination of Ropinrole and Gabapentin - which worked for a while and then stopped working. I was advised to wean myself off Ropinrole which I did slowly and increase the Gabapentin (of which I now take 300mg at night) and it works a dream / of course it seems different things work for different people but I consider Gabapentin a life- saver!

[Allatonce]

Thanks for that, what time before bed do you take them?

T

[SueJohnson in reply to Allatonce]

The time to take it is 1 to 2 hours before bedtime. 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."

[thorndale]

I have been on gabapenton since February. I was prescribed 100 mil each day for nerve pain. I have nodules on my lungs.i take 50 minutes each morning and 50mil at night. It has helped with my back pain. At 1st I was a bit unsteady on Mt feet but I'm fine now.i also suffer restless legs and suffer many sleepless nights this medication hasn't helped my restless legs or my sleep pattern .For my back pin it's been marvellous.

[Zadoc]

I have been on Ropinerole for nearly 10 years, varying doses but currently 3 at night, an hour before I plan to go to bed. It is the only drug that makes any difference. I top up if needed during the day. I take Gabapentin 3 times a day, I think that makes a difference to my CFS. Sorry that does not really help you but if there is no magic solution, sometimes what we have is all we’ve got!

[joker826]

Hello to you, Allatonce, I am sorry your experiencing these symptoms. I have been on 300 mg of gabapentin along with 50 mg of Trazodone at bedtime for more then a year. Taking both medications together helps me get a good night’s sleep.

[Rayme]

Hi, sorry to hear of your difficuties with sleep. You are not alone, that's for sure! Pregabalin didn't work at 400 MG and had side effects. Now coming off codeine which didn't work. The next from my sleep doctor is methadone. I use cannabis edibles for a few days at a time and then I develop tolerance and need a break. It helps me to sleep as well as soothes the RL very well. But I need to have something every night as the RL is severe. Best if luck getting a solution.