Hi All, I'm happy to report I've had a whole week of 8-10 hours of sleep each night! I'm so happy I could dance a little jig. The 10 mg of Oxycodone is doing the trick I'm thrilled to bits.
Thank you to everyone who has advised me over the last few months especially Sue and Jules.
That's great !!! So pleased for you.
So pleased for you
Brilliant news. So pleased for you.
That's amazing! So glad for you.
Delighted for you.
Great news, it’s difficult since the decision to come off dopamine agonists but you have persevered and like many people have found relief with low dose opioids. Thank you for posting back here, your experience will help others make the same difficult step.
Oh how great, so pleased you've found an answer 👏
That's great news. I know that feeling when I started buprenorphine.
Great to hear it works for you. Just be careful to not fall into the "Oxy" trap. I am just now able to come off Oxycodone after many years of use due to severe pain, and it is really rough detoxing. In fact stopping the oxycodone has caused Restless Legs Syndrome and sleepless nights. I came on this platform trying to find something that will help with my RLS
I think it might be slightly different for me as its not used for pain it's used to treat the RLS and PLMD.I'm just so pleased I've got some relief.
Hope you get what you need to help 🙂
Welcome to the forum. You will find lots of help, support and understanding here.
Why did you stop the oxycodone since it controlled your RLS? If your doctor will let you I would suggest you go back on it.
If not, this is my usual advice:
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) 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. (You don't need to split the doses with pregabalin)
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 (200 to 300 mg pregabalin)."
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 nor calcium-rich foods 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Are you taking the regular release tablets or the extended release tablets? How often?
I'm on the extended release at night time.
Im envious.. I would be envious of 2 hours sleep.
Aww, I know the feeling all to well 😢. I hope you find so relief like I have. 👍
Are you using Oxycodone regular release or sustained/ extended release? What time do you take it?
I take the extended release and I take it early evening time.
I’m very happy for you Delilah162
My dipyridamole experiment - progress report
HAPPY NEW YEAR EVERYONE
Happy to be here !
Pramipexole to Gabapentin
