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Can Dexamphetamine Control RBD

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

I have no medical training and am not recommending anyone try new treatments or cease existing medical treatments without the full support of their doctor.

This is a continuation of a previous thread:

REM Sleep Behavior Disorder (RBD)

I created this thread because, for me,

Dexamphetamine stops REM Sleep Behaviour Disorder (RBD)

Confession time:

I have been using Dexamphetamine (leftovers from my wife's prescriptions) for decades in small quantities on occasional days to enable me to achieve difficult or demanding tasks and drive safely when extremely tired. For those applications it is very effective.

Many people who visit this forum would relate to the downward spiral of fatigue and confusion and despair associated with sleep disorders like Apnea. I have ADD, RLS, PLMD, very severe Apnea, and RBD. They are, in my view, all connected and they compound on each other in a way that is very hard to manage.

I used to have the view that waking was active and tiring but sleep was shutting down and resting. I think that was wrong. For me, both sleep and wake require time, effort, awareness, energy, motivation, and positivity.  Without those resources, I fail at both and they merge into a fractured state of in-between. Spending my days and nights neither properly asleep nor fully awake.

I considered that the purpose of Dexamphetamine was to wake up the brain and raise the level of awareness and activity as well as improve motivation and positivity. Using Dex for this purpose over the past year or so has enabled me to remain functional through the daytime despite the escalating levels of fatigue and confusion generated by deteriorating sleep patterns which have become barely survivable, leaving me lost and confused through the night and increasingly wrecked each morning.

I had hoped that by using Dex to raise my level of awareness through the day I could use the fatigue it generates to dive deeper into sleep but what I found is that the more tired I became the worse I slept and the more fragmented and disrupted my nights became until, because of all the compounding sleep and movement disorders, I was getting almost no benefit from what little sleep I could achieve.

Several weeks ago, when this degenerative cycle was quite severe, I took a Dex at 4:00 AM as a last resort to enable me to manage the hopelessness and desperation until morning, and to my surprise, I slept really well, even though it was only for 4 or 5 hours, and I woke feeling refreshed and in a state of awareness and functionality that was better than I have seen in a long time.

Since then I have used Dex every night to facilitate better sleep and awakened feeling alert and functional, without the extreme fatigue, fog, and confusion that has haunted my life in recent years. I have gone from having a number of violent RBD dreams every night to none at all in the past several weeks since I began using Dex at bedtime except twice when I forgot and woke up with violent active dreams on both occasions.

Just to be clear, this medication does not suppress movement, which seems to be the aim of standard RBD medication and it doesn't prevent dreaming. Dex keeps dreams in peaceful mode, which is how I play most computer games nowadays.

One person is hardly conclusive and several weeks is not long enough but it is the best several weeks I have had in quite a few years and I believe that it is worth further investigation.

Once again: My role in this forum has largely been rabble-rouser and antagonist. I have no medical training and am not recommending anyone try new treatments or cease existing medical treatments without the full support of their doctor.

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Sierra +0 points · 4 months ago Sleep Patron

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

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.

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PutSleepApneatoBed +0 points · 4 months ago Sleep Commentator

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

That would be great thanks PutSleepApneatoBed

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CyrusManz +0 points · 4 months ago

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

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?

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Carola +0 points · 4 months ago

CyrusManz..I wholeheartedly agree!!

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Carola +0 points · 4 months ago

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

Hi Carola,

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.

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Carola +0 points · 4 months ago

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

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.

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Carola +0 points · 4 months ago

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

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.

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Carola +0 points · 4 months ago

Ok. Whatever works for you dear.

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Carola +0 points · 4 months ago

🙏

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Sierra +0 points · 4 months ago Sleep Patron

@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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

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.

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Sierra +0 points · 4 months ago Sleep Patron

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.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Enthusiast

You are probably right Sierra but I threw in the word counterintuitive because it sounds good and I'm pretty sure that whatever I do is not likely to make sense so it has to fit somewhere.

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

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.

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