I know you have been having issues with RBD for some time. I hope this treatment works for you. On a quick look at the Mayo Clinic site, it certainly seems to have a long list of potential interactions.
I don't expect it to last forever, in fact I am quite prepared to accept that it might be a placebo effect.
All I know for sure is that, for the moment, it works for me.
I have tried to find references to this application of Dex but RBD is so entangled with other sleep disorders, including narcolepsy (which is often treated with Dex) as well as being implicated in various forms of dementia, that this counterintuitive application of Dex is hard to identify especially as, even if it's real, it's likely to be beneficial in very limited circumstances and probably only during a transitional stage of disease progression.
BUG: one of our Board members at the Alliance of Sleep Apnea Partner (ASAP) Apnea partners.org, a sister organization to MyApnea.org, also suffers from RBD, in addition to OSA. He’s approaching it as an activist and participating in a lot of clinical trials.
If you wish, I could put you in touch with him..He’s tried a lot of things, I suspect.
So what you are saying is that Dexamphetamine is helping you sleep near normal, if you take it during the day. Given that this is a habit forming drug (you'd be pretty much addicted to it, if as you say, you've been on it for a year) and that it can cause new or worsening of existing psychosis, especially in people with a history of depression or mental disorders, I'd be very cautious . Remember that habit forming pharma can alleviate a set of symptoms while aggravating others and forming new ones. My recommendation is to have an exit strategy if 'sh%$it hits the fan and you find yourself in a situation when you must get off of Dexamphetamine because its not like once you are addicted to it, you can just stop taking it without some very serious side-effects.
Taking Dex during the day leaves the user very tired, which can escalate sleep disorders, making RBD worse. Taking it immediately before going to sleep prevents that escalation and, for me, avoids violent RBD events.
Using Dex in this way is counterintuitive, because it can keep you awake. Fortunately I can get to sleep quickly and easily even after Dex takes effect. I don't know if this would be true of other people who suffer from RBD.
When it comes to addictions, I suspect that essentially everything we put in our mouths is, to some extent, habit forming, especially if we believe that we are getting a special benefit from it. I presume that dependency and placebo are closely connected and at least partially compounded by personality.
Yes the list of potential issues, as both you and Sierra pointed out is protracted, and cause for concern, but those lists, for all medications, are getting longer each year. (Asprin now has 234 listed interactions) Even Metamucil can interact with nearly all medications by rendering them inert and transporting them out of the digestive system.
I have been using Dex off and on for decades, both intensely and intermittently, with no noticeable issues beyond the immediate fatigue after each tablet subsides, but even so your advice is sound and well considered and there is rarely need for anyone nowadays to experiment with medications without the advice and support of their doctor, which is why I am using this medication under medical advice.
It's likely that the kind of sleep someone would get under the influence of Dex is not the full package that normal people consider to be a good sleep, but the outcome is much better than it would be without treatment, so surely that's an acceptable measure of risk/benefit?
I took Adderall for years and finally quit. It did keep me from shooting off into 20 different directions and kept me awake and focused. This is before I found out that I had severe sleep apnea. The side effects for me were not worth having the benefits. I think this drug is horrible. Unfortunately a necessary evil for some people..just my opinion. However, research seems to support that. I also developed high blood pressure and tachycardia, probably as a result of the sleep apnea. One day unbeknownst to me when I was at the doc, it was 225/150, HR 146..a walking heart attack/stroke (yes, they called EMS, saved my life). Geez, if I'd been on Adderall, nuff said. I'm happy that it works for you and I will pray for continuing success for you. I also pray that you find a safer alternative.
Thank you for your input and concern.
Medication is a huge subject, and a serious concern, but it's a subject I am not really capable of comprehending, which is why I consult with doctors and chemists.
All I know for sure is that when my wife quit using Dex we had 300 unused tablets which enabled me to continue working for almost 20 years before I bothered to get a prescription myself. Neither of us had any noteworthy side-effects or after-effects from Dex. There may be issues in the future but the issue right now is severe lack of sleep because of escalating RBD.
I have tried dozens of prescription medications through the years but with these kinds of medication the results are largely anecdotal and subject to so many varying factors which is why I will try almost anything recommended by my doctors, then evaluate the risk/benefit for myself.
You are blessed for it to work for you without serious side effects. You are wise to follow your personal experience and knowledge..plus more importantly, Dr.'s advice.
Life is a blessing Carola.
Wisdom is a fun subject, and a worthy goal, but way beyond my reach.
I suspect that wisdom is a form of faith (in oneself), an instinctive way to perceive order and evaluate opportunities and risks, actions and consequences, in a world of endlessly shifting patterns.
I got close enough, once, to see it in the distance, although it was never my goal, but now I'm slipping back into confusion and chaos at an alarming rate.
I'm very sorry to hear that you are slipping back. I suspect that wisdom is a form of faith in oneself also, but that it comes from faith in God. We live in a world of endlessly shifting patterns, mostly because satan is ramping up bigtime. We are in the end days. Sorry, I'll get off of my pulpit now..lol. If I get kicked off for this, just know that I am still praying for you. Be well.
American forums should be accustomed to some degree of piety and traditional soap boxes Carola.
Personally I prefer to test the uncertain territory on the outer limits.
Not something I would recommend to those who need security, but sometimes, like taking Dexamphetamine at bedtime, the results can be surprising.
@RayRBD has posted a link to what looks like a very useful resources site for RBD. They are looking for volunteers for a study, but seem only to be located in the US, and Montreal in Canada.
Thank you Sierra.
I contacted a few researchers when I first became aware of the severity of my situation and thought there was time to gather knowledge and resources and apply them to some effect.
At the time I was uncertain of the prognosis and treatment options and hoping to find a different path or slow it down.
I received no responses, presumably because I am on the wrong side of the planet.
I don't want to spend my life focused inward or chasing shadows.
Nowadays I'm just looking for bandaids to enable me to stay functional, and focused on other things.
Dexamphetamine is only a bandaid but it made a profound difference to my ability to survive and continues to do so.
Maybe this counterintuitive application of Dex can help someone else if their medical advisors have the insight and courage to consider it.
I have not done much research on the stages of sleep. But, perhaps a stimulant suppresses the REM stage of sleep, so it may not be counter intuitive.
I have been using Dexamphetamine to pacify the dreams related to REM Sleep Behaviour Disorder for 4 months now (since 4/12/21) and it still works 95% of the time. On rare occasions, when I am under extreme stress, my dreams still translate into actions, but when I forget to take it I almost always have episodes of violent actions.
I am certain that there must be problems caused by this usage of Dex but I can't identify them yet.
If anyone has tried this approach, officially or otherwise, with or without success, it would be good to hear from you.