Biguglygremlin

Thanks for your input RayRBD

So you've had RBD for quite a while now.

Silly though it may seem I decided to try and avoid Clonazepam for as long as possible. Not even sure why now.

I am using Dexamphetamine at the moment, when I go to bed, which comes with it's own perils but, for me 'better the devil you know ........'

I have no problem getting to sleep but I have used Melatonin at varying dosages over recent years hoping to reduce the RBD. The effect has been consistently detrimental for me. I understand that for most RBD sufferers it does have benefit.

Melatonin discussion

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.

Hi SwarmingTiger,

Asking for suggestions is probably not the best way to avoid being overwhelmed.

I'm not sure why but cleaning is one of the favourite subjects of many CPAP users.

Probably the safest advice would be to follow the manufacturers instructions.

Cleaning up my Act

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.

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.

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.

I have been using the Airfit P30i for several months now and really like it for overall design, function and comfort, despite the fact that it tried to kill me from time to time.

Negative Input

Machine Shuts Off

I think it differs from the Airfit F31i in enough ways to avoid the issues I have with mine.

If it's the mask in the image above, it has a larger and presumably more dependable vent in the facepiece, and I would hope that most of the production lines are using firmer silicone for the air tubes than the one that I have.

Being a full face mask would make it virtually impossible for it to suck closed and prevent breathing.

I was so impressed with the simplicity and comfort of the P30i that I bought a new one which arrived from USA today. There is no obvious difference but it doesn't suck closed the way my current one did before I adapted it.

That would be great thanks PutSleepApneatoBed

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 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.