I keep thrashing around and carrying on at night, including in one occasion falling out of the other side of the bed. (I was catching a big wave!). My husband cannot handle this.
I am worried as I am heading overseas on holiday and will be staying with extended family. For part of the trip I won’t be able to take the CBD oil that is keeping it somewhat under control along with 2mg slow release melatonin.
I have read that 10 to 30 mg of melatonin is the favourite treatment. It seems like a lot and I was wondering if anyone here takes that much, and if you have it prescribed to get the higher dose?
Thanks.
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Astra7
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Clonazepam and melatonin are the two things ive seen frequently mentioned both anecdotally and in research as being effective for REMSBD.
Its worth understanding whether or not you have any kind of sleep apnea before using them, IMO. Same might go for the CBD, actually.
Also melatonin is prescription only in some parts of the world. This probably wont result in its confiscation by customs (should you try entering those countries with it) but far stranger things have happened. Maybe get some shipped to your accomodation (with the mail being less likely to be intercepted and confiscated than baggage).*
Ive used melatonin. Quite groggy the next day and my REMSBD is so intermittent that i couldnt figure out if it worked or not. Low doses though due to apnea concerns (so not that helpful).
*Edit: getting a prescription for it would probably deal with this issue too.
No medicatiomn has yet been found to stop the progression of Pds, so that is a dead-end .
THe only thing thata has been proven by The Nayo Clinic and others to produce GDNF in the brain, which increases the supply of dopamine and a reversal of symptoms.
That being the case, you pay your money and take your choice. You either keep taking medication and contimnue to get worse or put in some effort and do some exercise and start getting better.
My husband jumps violently in bed, although he does keep to his own side 😆. He has a C-pap machine for his sleep apnea.
The thing that seems to be responsible for the jumping almost disappearing is the Wellred Therapad. We were using their coronet, but added the Therapad when I read the research being done here in Australia. That’s when the jumping disappeared.
Gwendoline
Ps he does take melatonin (3mg compounded). Nobody, doctors included, can understand what all the fuss is about with the TGA and melatonin.
I have been feeding my son who is 19 and has covid 3x 20 mg for the last 3 days after reading Arts comments and he is improving fast on it. Definitely hasnt harmed him at that dose .
I am not here you prove anything to YOU. I doubt it would succeed in any case. You wish to debate for debating's sake, a personality problem. From you, I don't take the bait. Got your number. You already clearly know more than perhaps 100% of everyone.
Perhaps you might try to prove/disprove things for yourself...the only way you might consider the results.
Adding this; unfollow me. I do not follow you, never have never will. If I’m so awful as you make me out to be stop following me. Surely I’m not worth your time right Marion.
Marion, this is not about me, my ego or you or your ego. You have repeatedly recommended something shown to cause dementia and you refuse to respond to that. I would like very much to be wrong. Asking you to prove what you are saying is not to challenge your ego as you have taken it. It is because I fear you are giving very bad advice that can hurt people. Are you recommending PWP take a drug widely known to contribute to dementia? Based on what I sent above and have responded with before, I believe you are. Get your ego out of the way and seek information of substance to ensure you are not giving detrimental advice.
I have no desire to debate you. None! But I do want to stop you from repeatedly giving harmful advice. If I am wrong correct me with facts not personal attacks.
If you repeatedly recommend something to people that can harm them and you do this with the assertive confidence of the science minded once professional you claim to be then you have a moral obligation to make sure that what you are recommending is safe. I have repeatedly responded to you on other threads that this recommendation of yours is not safe. But you refuse to respond to that. You are incorrect and giving bad advice to a vulnerable population.
I take no pleasure in saying that or having to address the same subject repeatedly.
You reason like a child, and transparently so, with a great deal of neediness. Newbie my foot. You are clearly out to gain something. At whose expense, probably the unsophisticated and impressionable, at their peril I suspect.
I believe that in reading recommendations, people should consider the source for their own protection, and try to then go on to find some education for themselves independent of what someone says here.
I can easily survive the spotlight, and for a lifetime of professional service, have happily done so. Can you? You haven't done so yet, and anyone can put up a single slide saying whatever you would like it to say...and then using careful sales tactical skills shift the emphasis by externalizing a rhetorical trick missile at the other party.
Again, as I said, the vulnerable and people prone to take you too seriously out of their own need for help and their own desperation render themselves at risk to any predation you may practice. The message is not for you, but for them. "Consider the source." What honest person could object to that? Tata.
Marion, Clonazepam was the subject of our comments and a woman’s sleep issues was the subect of the post. Clonazepam is dangerous from what I’ve read. For a minute there you thought this post was about me. It’s not. It’s not about you either.
Then I suggest you get to work learning sufficiently about clonazepam to learn the truth before you spout off about someone else's comment and also mis-characterizing it as advice, and bad advice at that, completely off the cuff as if it was personal, which is what you did... and implying that off the cuff without actual homework of any kind on your own part that you know something more than 10,000 practicing professionals with prescribing experience do...including me by the way...and under their control and supervision too I might add...instead of just discounting reflexively anything you can interpret as directed at you personally (which is about ego, and from your own introduction, not mine)...it's all there in the string and time stamps, you can't do research on a complex topic in five minutes before you just blast off an outburst response...
Now as to evidence, which you actually haven't supplied at all, I'm not here to convince you, you have to convince yourself. What's your actual experience with clonazepam? People here reflect what they have experienced. That apparently did not occur to you. Anybody can go extract something they want from the internet, as one sided as they like, and just leave off looking for the actual truth. Then they can just simply put it out there as if they know what they are talking about. Do you?
So I suggest you actually assign yourself some homework, some actual homework and achieve some actually representative information before passing yourself off as some kind of expert and maligning others' contribution without any sort of effort on your part to contribute toward the greater knowledge. If I try to "convince" you, you will certainly just say I probably buttered the plate, so when you go off to do your own informing, you are deprived of simply discounting people further as your little tactic. After all, if as you say I give bad advice, then why would you consider me an appropriate source further? You would discount anything further from me, and that is a subtle little trick, and not meant to illuminate. You've shown a robust pattern or I would not have brought it up. Sorry, it's what you chose to put out there, you didn't have to.
But see, if you take the cue to find out for yourself, and what is true vs. not, then it doesn't matter who is the source here, at least, until you get some experience with that member and have a feel for how much they can be trusted to not just spout but qualify and filter so as not to give out unlabelled untrustworthy contributions in the first place. Not my problem, not one I can solve by taking you at face value, sorry. What games people may play when your presence is not screened.
As you do so, here's a thought, actually try to do justice to anyone who you would fool into taking you seriously, don't forget what any responsible personal might realize, and every professional must do and knows to do...namely examine their own selves and process as a source of bias and error before getting to your end stage. After all, the welfare of people who listen to you is at stake, if you actually care. Convince yourself of the truth, put your own nimpressions (sic) to the test and when you find your first hopes are wrong, don't assert them to others in the first place.
Ever hear of the Dunning-Kruger effect? It's very real and it is very serious, especially in venues like this. Very important, and very valuable to know....so it's very helpful to talk about it here. Nothing personal, just behavioral description-observation of what you've done in actual type, nothing more. You have given an exemplary illustration, to the betterment of us all, and I want to thank you for it, we all benefit from a bit of education. And yes, you have been behaving as if it was all about ego. Now it's here for people to see and consider, the more for their benefit to determine. And that's the way it should be. We can all be subject to the effect at any time, so it is important to cultivate an attitude of self-vigilance, a message for us all to heed.
As I said, people should "consider the source."
You would want to do so before acting on advice of a stranger, would you not, especially on a matter so important as under topic, people suffering from insomnia, some suffering and at their wit's end and at great risk of damage from loss of CSF/glymph function. Would you blindly trust you? And while at it, why do you assume and imply that you should arrogate to yourself to decide for others what is good or bad for them, or that you would even know? Isn't that for them to decide for themselves?
Pretty subtle; but busted I'm afraid.
All of this, this silliness, from you because of my tiny little word remark: "low dose clonazepam." As Shakespeare said, "methinks thou dost protest too much." "You need to get a sense of proportion," she used to say to him (28 times a day). -Douglas Adams, The Hitchhiker's Guide To The Galaxy
What, and how much, do you actually know about clonazepam to be telling people what is advice and what is not advice, what is a good use and not a good use, making such an assertive set of conclusions right off the bat? And then pronounce quote "bad advice as usual." That's the real issue here and you have done a professional job of avoiding it. All these immediate and definite assertions came from you and were ended with a positive period of finality. So Ok, how do you know? How much do you actually know, where did you get it, did you make it up? Is that the whole picture and it is also one-sided, how do you know? How do you know so much better than me? You're the one making all the claims. You. Ok, so show us what substance you have. Instead, all you have done is misdirect and then cry Victim. Usually people feel like they benefit from a little sunlight. Ok, here it is. A good thing, don't you agree? You'd want that for the brakes on your car wouldn't you?
Where does all of that immediate certainty and implied expertise and finality come from? People are watching to see what you deliver, to see what you have. For a change they are focusing on you and what you actually have. Why should anyone believe you, in light of your maneuvers? Forget me, talk to them. Why should they believe you? That's not an unreasonable request. Why are you not addressing it? Instead of wasting all this time badgering me? You think people don't know this that with all that you actually haven't said a thing about what the people were asking? Why not? I said three words and you came back and stomped all right now people are wondering why and they're looking at you for that and starting to wonder about you. I don't tell you what to say. Go back to your first entry "as usual bad advice." Okay you asserted it positively. Now you get to account for somebody actually noticed and read it and took it seriously. Account for yourself now. Certainly you're happy to do that or you wouldn't have put it out in the first place. You do want people to trust you don't you? Presumably yes, I'm sure of it. So pray continue. Discussing a pharmaceutical that is a schedule control generally takes people knowing something about it, because the need for help is of that level as well. So carry on you were saying. About clonazepam. Then tell me what's so terrible about my advice and please going to great detail because reputation is serious and you have attacked mine. Now you have to account for it right here the same way you came after me out of nowhere. So carry on with some legitimate proof that you know what the heck you are talking about. People expect it and should, you are the one may I remind you making these positive assertions with such confidence. Pretty serious. So now put out. Not just some quick mined poster. What do YOU know and how, how much, how deep, and how did you come by it? People's health is involved. All I did was mentioned a three word idea and you stomped. Right there in print. Ok, so come on now let's hear the justification and all of it to match the intensity and quickness with which you responded so confidently. You didn't ask anything you started off with a positive assertion that I didn't know what I was talking about and that it was a pattern. Those are the words you wrote. Not an innocent 'why do you think so?' right there in print go back and read your own writing.
Well then, such a forceful confident conclusion, "as usual, bad advice." You're not innocent. You know what you did and said, very well. After all if you really were that honestly naive with your response, that in itself is a whole 'nother reason for people not to just believe you. Pretty obvious.
Why should anyone believe you? Serious question and they might be 8nterested to know. Still waiting. You didn't ask anything.
I’m going to wish you well and wish you peace. I asked you for more info on clonazepam because I had read it causes dementia. You never responded when you previously recommended this and this time it’s a looney rant. (Not reading it) I no longer want any info from you, none. It comes at too high a cost.
And I again ask that you unfollow me. It’s perplexing you do. it is my hope that you will leave me alone.
Best wishes Marion
I’m sure there must be some Health Unlocked group that can help with anger. Sadness is my biggest problem personally.
You never wanted any information from me at all ever my dear, yours was always a one-way transmission only, you established a clear pattern in your entire history of texting to me ever since you arrived. This is just your latest example and I finally decided to call you on it. It's all there in print. "Forgive them Lord for they know not what they do." Except that I think you do because that's how you started out and it's how you've been from post one. It's in your history. You present yourself as some kind of expert, and every time you speak of a medication or a supplement there is no question there is no doubt there's only periods. I think most of the time you don't really know but you need and like people to think that you do. That's very dangerous. That's my opinion.
I know very little, almost nothing. I refer to myself as a novice and a newbie bc I am both.
I think Clonazepam has a lot of very worrisome downsides. That is my layman opinion. And I think your repeatedly recommending it is inconsiderate and unwise. Again, my layman opinion but based on information I’ve read some of which posted above.
Should we with sleep issues consider Clonazepam? Meta analysis : “we suggest that bias due to reverse causation was highly unlikely in the present analysis, since BDZs were taken for more than 10 years before the diagnosis of dementia.2 The relationship between BDZ use and dementia can be considered a marker of the increased risk of the occurrence of dementia, and not as the main cause. However, some studies have recommended that before diagnosing dementia, data from previous years should be analyzed to see if there is a strong correlation between the symptoms of dementia and BDZ prescriptions.21,22,23 “
As a layman who knows close to nothing and has very little experience and is just seeking to learn it sounds to me like my concern about Benzodiazepines is justified. I posted other links above.
I read many places online that it has been thought to cause dementia. A now see that that has been diabetes and retracted but I personally find it very concerning.
I’m hoping to find more subtle and non addictive means of getting and staying asleep.
I’ve just bought a weighted blanket and hope it will help as another user has said.
There is an app that I’m going to try that you might be interested in. It’s called
Tapping solution
Sounds hokey but it came highly recommended to help get back to sleep.
And this is obvious I’m sure but I am completely unqualified for any of this. I’m just a woman with Parkinson’s who is scared and is really trying to learn.
I have suffered from sleep talking and acting out dreams for years - more than once knocked my water glass flying when dreaming of going for a basketball goal. I reduced my last C/L dose by half about 3 months ago and recently started on a new Magnesium/B vitamin powder supplement last thing as well. I have no idea if that’s why but I am sleeping better than I have in ages. Good luck 👊
B1 helps my husband with his arms moving around in bed. Things run along smoothly for 2 or 3 weeks then the arms and bad dreams start again so he stops the B1 for a couple of days and then he sleeps like a baby.
Five nights ago he was jumping around for hours, so he didn’t have any B1 for 2 days, and last night he slept 8.5 hours straight and woke up in the same position he went to sleep in, on his back.
I have just remembered I have had a glass of red wine - new for me- most nights for the last few weeks too - wouldn’t it be great if that was the answer…
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