Webinar 2016: What is the Role of Opioids in RLS?

[@LatterDaisySaint]

28:35 - I have Akathisia, which is a medication injury from taking psych drugs AS PRESCRIBED. Akathisia is the most horrific side effect/iatrogenic illness in existence. Akathisia is often described as not being able to sit still, having the irresistible URGE to move, extreme restless agitation. It also includes the INNER mental/emotional agitation, terror, and extreme anguish. Having a doctor willing to LISTEN, and LEARN and prescribe an opiate treatment HAS SAVED MY LIFE.

[@nacchi1631]

Can I vent to you? It is nice to see someone with similar experience online and that on a RLS video. Had Akathisia too..from neuroleptics for months even when I asked them to lower doses and stop it. During or afterwards my severe 24h/7 with chronic sleeplessness came. Rivotril helped Akathisia for me and taking out the neuroleptics (they only did when it got more and more worse until I couldn't even sleep/lie down anymore, running around asking for help but speaking coherently) I still got no right medication to manage my RLS. I couldn't handle oxycodone without feeling sick. Can't get dopamone because of my mental diagnosis. Gabapentin doses get upped lots and nothing helps. I hope I get something life saving like you because this 24h/7 RLS reminds me of the constant Akathisia anguish I felt driving me to contemplate to end it (still wouldn't trade for Akathisia again omg), without sleeping pills I nearly went back to the psychiatry who ruined my life with forced neuroleptics. They would have probably just thought I had a psychosis and not treat my neurological condition again(they saw my s*cdal episode from RLS pain and no sleep as a psychosis too and didn't take me serious until the end, the main nurse did however. She was nice). There is no RLS-expert in my country. My neurologist doesn't know any. I want to try more opioids and different doses of it to see if my body can handle them. Hope this vent didn't bother. I still wish you your Akathisia never comes again. I am traumatized by it and by psych meds and the medical professionals. I want to avoid psychiatry forever, hopefully. So I need to get my RLS treated outside my country to be stable. Good luck us both :) IF this message bothers I will delete so! (if possible not used to youtube) Have a nice day/night

[@vsvnrg3263]

@@nacchi1631 , ive never heard of your disease. i suggest you try a different path- alternative medicine. you may need to try many different ones until you find one that knows how to help. one doctor advised me to try gabapentin. what a failure. first pill made me very dizzy when i woke up. so i tried 1/2 a pill next. then after a couple of days it stopped working. back to one pill. then it stopped working. i quickly progressed to 9 a night then found another doctor. go and read my comments. you may find them useful.

[@Asgoga]

Hi, i hope you okay. You should find good neurologist ( maybe in different city ) who can prescribe you Pramipexole, it's dopamine agonist, it's one of the best known treatment for RLS in the world, it's often prescribed for Parkinson Disease, albeit in large doses, for RLS you should first try Pramipexole 0.088mg once a day, and if need be increase it. For me it didn't cure RLS, but definitely made it more manageable especially when lying down in bed before sleep. Also RLS is often described as Neuropsychiatric disease and you should not give up on Psychiatrist, you should mention about Akathisia , Restlessness and Anxiety, together with good psychiatrist you should work together in pinpointing which medicines could help you. There are plenty of people who find relief or even cure for RLS in Psychiatric Medicines, basically there is no one good treatment for RLS that fits all, especially in severe cases. Also where are you from that oxycodone is easily prescribed for RLS ? I barely got Morphine 30mg oral tablets

[@shirleybuck6918]

Doctor Earley has devoted his life to solving the puzzle to this disease. Brilliant, funny, and very sincere man. Go see him if you can.

[@cooley3021]

I wish this man was my doctor, he sounds like he has a ton of experience and knows what he’s doing. All the doctors I’ve ever seen are clueless.

[@shirleybuck6918]

@@cooley3021 He's the Real Deal I LOVE THAT MAN. I was told I was crazy it was all in my head. I was suicidal. Thank G for Doctor Earley.

[@flyinggeckos]

This is so well done! Thank you thank you!

[@Bigdog33R]

So informative, thank you! I had some prejudice towards methadone before this webcast, thinking that it was easier to create dependency, and harder to stop, than other opiates. I see I have been highly misinformed! It appears that methadone can be highly effective in low doses for RLS, for many patients where other therapies have failed.

[@Speedster2707]

I know this was an old comment but just have to say that I was given methadone for RLS. It caused me to have shortness of breath and (mild) anxiety attacks. It is very addictive even at the very low dose my Dr. gave me. I think it was like 5-10 mg. I believe it's because of it's long half-life. Glad I got off of it. I will tell you, I forgot I had RLS while I was on it. Works very well. On hydromorphone now. Not as effective as the methadone but no side effects, except even at 10mg a day, there is a slight addiction property. Luckily no tolerance though.

[@shirleybuck6918]

Dr Earley is very loyal and devoted to his patients. He truly cares about how horribly we suffer from this horrible disease. He always puts a smile on my face. Love this man. Angel on earth.

[@douglaserickson2866]

Restless Legs affects so many people,why so few studies of endorphin imbalance in striatum and thalimus?

[@shirleybuck6918]

There was just a big grant from the federal govt for sleep issues. GREAT NEWS FOR US!

[@polarbearhero9803]

Don’t understand this sentence: For pain “5 mg of OxyCodon equals 5 mg of methadone”. But for RLS “5 mg of methadone equals 20 mg of OxyCodon”. Isn’t this true for all pain not just for RLS? That’s how the morphine equivalents work out when opiates are prescribed. They are not prescribed mg for mg. I’ve found 5 mg of methadone is the same or a bit better at relieving RLS sensations than 20 mg of OxyCodon or 30 mg of morphine.

[@shirleybuck6918]

Its treated differently than pain.

[@cooley3021]

The methadone is 4 times more effective at treating RLS as it is in treating chronic pain. So if you have regular pain, 5 mg of each does the same. If you have RLS you need 5 mg of methadone but 20 mg of oxycodone to get the same effect. I realize this comment is old, but would like to make it clear to anyone else who comes after. This video should be mandatory watching for every med student and currently practicing neurologist.

[@rickyjohn8584]

Lack of opiates / opioids will cause the worst RLS you’ve ever encountered believe me!!

[@vsvnrg3263]

what happens when you are totally addicted and because of this, the doctor refuses to write more prescriptions? you can get it off the street. can't afford it anymore? sell your house and things will be fine. i found a naturopath who showed me what caused it and suggested oak or pine tree bark or grape seed extract. i go for the gse because its cheaper.

[@shirleybuck6918]

This naturopathic doc should write a book or do some videos to help patients then.

[@normawooters6495]

If the dosage is the right one and it does what it's supposed to do, you should be fine. All the other treatments are addicting too!

[@vsvnrg3263]

@@normawooters6495 , my herbal treatments arent addictive. but i bloodywell cant do without them.

[@misterserious3522]

Unfortunately, opioids are the WRONG thing to do. RLS is the result of chronic endorphin depletion. That is easily and quickly reversed with low dose naltrexone. If you stop, it simply comes back, but people generally feel better with improved endorphin levels. Thats my experience in over 10 years of research into endorphin depletion syndromes and its reversal. Not only that, but low endorphin levels means you lose much of your cellular immunity making you even sicker. Narcotics are an admission of physician ignorance, diagnostic failure and effectively predispose the sufferer to significant risk dependency and expense. Not only that, continued narcotics use further diminishes endogenous endorphin production and nowadays, doctors wont prescribe narcotics without expensive testing and frequent office visits, leaving the sufferer even worse off than when they started. IN MY PROFESSIONAL OPINION, TREATMENT OF RLS WITH NARCOTICS IS MALPRACTICE.

[@jimmyb640]

Ive been on Anti depressants for 2 years , I weaned myself off them and with in one week of last dose , restless legs syndrome developed.

[@zentex8877]

What are your professional qualifications to make these statements?

[@misterserious3522]

Success with moderating a wide variety of seemingly disparate chronic conditions in humans and animals using time dependent moderation of the receptor and receptor antagonist relationship and the standard neuroaxis feedback loop dynamics., not to mention a couple doctorate degrees in animal physiology and lots and lots of noticing how things work. This directly applies to addiction prevention and treatment, cellular immunity modulation up or down, whether-reactive (due to steroid or biologics eg TNF blocker or relative acquired (eg age related) immunodeficiency, chronic pain and life extension in general. All of which involve the same class of receptors. The funny thing is that when I discuss this with the PMNR doctors, they say its interesting and could work, but they arent interested, its too simple, cheap and would probably lose them significant income.

[@patiencezero-xc9zl]

If you were actually a professional with clinical trial background, you would not remain anonymous while throwing accusations of malpractice around....jerk!