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Twebbel
Dear all,
At first I would like to start with a disclaimer for this unorthodox topic, as it is not meant to encourage anyone to start experimenting with heroin. Because it can be a very addicted drugs. So please do not think of starting to experiment with it!
But these new studies cannot be neglected, because they may be a solution for narcoleptics in heroin or other opiates. Unlike all other medicines they could actually cure the disease by possibly making new hypocretine, where all other drugs only threat the symptoms. See the news on the links below or google for the real studies:
http://www.sleepreviewmag.com/2018/06/hypocretin-neurotransmitter-lacking-narcolepsy-excessive-heroin-users-study-finds/
https://www.news-medical.net/news/20180629/Heroin-could-could-help-patients-with-narcolepsy.aspxSo my question is of course if there are any narcoleptics who have used heroin and would like to share their experiences with it.
FerretGonna roll this around in my head for a while but my first take is that it’s like trying to put out a fire with gasoline.
In the meantime, I would like to point out that the second link has a glaring error in it. It is not too little REM in Narcoleptics, it is TOO MUCH.
Secondly, patients who have N1 (Narcolepsy with Cataplexy) have NO hypocretin neurons left. Do they magically reappear?I wouldn’t touch this with a twenty foot pole.
Dear Ferret,
Here is the original study:
https://www.ncbi.nlm.nih.gov/pubmed/29950444There are people using that gasoline without getting addicted you know. I saw a video from a USA professor who was a regular user, but the rate of the people that get addicted seems very high compared to other drugs. I am from Europe, but reading about the incrediable surging of opiate/fentanyl-deaths in the USA I rather stay away from those as well. But on the other hand, narcoleptics are able to use Xyrem (GHB) as a medicine without getting addicted. Other people are normally always getting addicted to that. So it there are thoughts that the lack of hypocretine also influences the addiction possibility (as well as temperature of the body for instance). The problem with Narcolepsy is indeed that the there is NO hypocretine anymore, so it is like creating hypocretine out of nothing, but could it be that the heroin/opiates could handle that? I once got morphine-injections in the hospital and liked it a lot, because my sleep was fabulous, even with the pain of the surgery, but here is the problem already. What if you use it more often and you are really liking the rest, does that get you addicted? I do like the Xyrem also, well actually I do not, but I do like that gives me a better rest than nothing. I stopped using it for a week or two sometimes and was not addicted to the drugs, but surely was not liking the tiredness during the day due to the increased sleep problems….
Thank you for informing me about the too much REM. I never knew this, going to think about it a bit. I was always under the impression that we get too little deep sleep. But a quick search on the internet says that too much REM is normally caused by stress, depression and (thus) too much thinking. If I look back in my life when it probably started, that is indeed the case. So, if we reduce the stress/depression/too much thinking factor, do the narcoleptic problems go away or are the reduced? When I was in meditation retreats and/or cycling holidays with very little sensory input and not much things on your mind, as the focus was just on the meditation and/or cycling, I definitely was better rested. Is it possible for the mind to repair itself, like a reprogramming when the old mistakes are not to be made anymore? I don’t know…
Just a bit of out loud thinking, I hope you do not mind
FerretOpen mindedness is always welcome. And I am on board with the lack of addiction theory.
You are correct about the lack of Deep Sleep but REM is not deep sleep. For the record, I have no insurance so couldn’t try Xyrem even if I wanted to… and I don’t want to do that either. I suggest you read the Cannabis Oil Cheat Sheet in this section of the forum. I have eliminated Cataplexy (which was daily) and get wonderful deep sleep but it only costs me $50 dollars a year. In that thread is also information about pure CBD (cannabidiol) which lessens stress/anxiety and is very good for pain if those are things that keep you awake.
Since N1 is autoimmune, I have doubts that, even if the heroin could regenerate hypocretin neurons (and I doubt it), that our own bodies wouldn’t instantly destroy them again.
Whatever works for you. We are all unique and how we react to anything is a crapshoot. All we can do is share information for those that haven’t yet found a groove in which they can lead a fulfilling life. And that’s what you did.Hi Ferret,
Here the Xyrem is insured, so you could even get a year supply if you wanted it. I recently tried the CBD/THC oils, but that did not work well for me. The difficulty is, I think, that you have to stop first for some time with the Xyrem and then try the oils. It takes some time to get the effects of Xyrem out of your system. But I got the oils from a acquintance, who made them himself, the THC did not work, but even his homemade CBD contains probably too much THC as I was still spacing into Akashic Records in my dreams. I better am going to try it again with CBD oil from a regular company…
How wonderful that the CBD works so well for you. But were you suffering only from cataplexy, or also from narcolepsy? Because many narcoleptics have cataplexy as well, but the are two different things. And as you get so much deep sleep, which is great, to me that sounds not like a narcoleptic, or does it?
About your comments… (most) narcoleptics do not get any deep sleep, that I always thought was the problem, but as you said it is actually that we get too much REM sleep, puts the cause in a different light. Maybe it is that because our REM-phase gets longer due to too much thinking or stress, that we get too little deep sleep as we sleep only a certain amount of time. So in that perspective the problem is not so much the lack of deep sleep, but that we have a too long REM-phase. I would like to hear your opinion on that, because if that is the problem, then the artificial deep sleep of Xyrem might not be solution at all. The real solution would be to decrease the REM-phase again, so our sleep cycles have time left again for the deep sleep. Are you following what I am trying to point at?
Well, the heroin could work IF it could regenerate the hypocretine, AND we would not get addicted to it, at least not the first time as we do not have hypocretine left the first time we take it, AND if we have changed our life styles and got less stress/depression/etc which probably caused the increasing amounts of REM-sleep. That’s a lot of uncertain conditions though…
FerretTo give a short answer, I have probably been Narcoleptic since my early teens (very sick with a Strep A throat infection) but the cataplexy didn’t start until I was 35. I am now 68. Always took the opportunity to nap whenever I could but it was the cataplexy that sent me scurrying to the Doctor and psg/mslt was classic. Lots of REM in the psg with very little deep sleep but no apnea. Fell asleep in under two minutes for all four naps and all had REM.
Jason@twebbel I would not use heroine under any circumstances, just fyi. I’ve represented people who have used it and my lord, they are never the same. Here’s the problem with opiates in this context, imo, opiates are called narcotics because “narco” in latin means sleep. They are very sedating. The orexin effects of opiates only seem to last a couple weeks after discontinuation of chronic opiate use so while if this strategy works, you’d likely only benefit from the increased orexin while undergoing opiate withdrawal, which is horrible.
More research is needed to determine how and why opiates may increase orexin. It’s very unusual. Codeine was reported to have similar effects and is much safer and less addictive. I still would urge caution, however.
sanderson
At a recent NN national meeting, 2 ladies (ages: 70+) quietly informed a group of us that they were successfully using a small dose of hydrocodone to combat their symptoms. Had been prescribed after surgery in both cases to deal wih pain. Family members noticed it prevented cataplexy. Drs. trusted them, monitored them, they had not increased dosage over 2+ years. One physicial admitted he knew this worked (produced hypocretin in brains), but much more research is needed, etc. Sure. But when it works for you, you are likely to use it carefully. Not sure a dr. woult prescribe it for obvious reasons.
Jason@Sanderson thank you for sharing! If you know, did it have any effect on their alertness?
Geoslow
Funny story, many years ago I told my sleep Dr. I would be willing to kill for just one night of 8 hours uninterrupted sleep. I was beyond exhausted and had a very miserable few months of heightened symptoms. She looked at me and handed over a brochure on Xyrem.
The lady’s face on the cover of the brochure ( a supposed nurse or dr with a huge crazy smile holding the Xyrem bottle) said it all.
After browsing the brochure I turned to my Dr. and said “There is no way I am going to even contemplate trying that. But I am still willing to kill for just one full night of sleep”
PaullyD69Hey everyone I just joined the group and this is my first post. I am going to be 52 in May and have been suffering from Narcolepsy with Cataplexy since high school. Wasn’t diagnosed until my twenties in the Army! Anyway I became addicted to heroin when I was 35 and remained enslaved by it for over 10 years! I wouldn’t wish it on anybody! I did find at times to get a paradox effect from it and I just got very energized! I did get some good constant sleep at night occasionally! This past September I miraculously celebrated my 4 year anniversary of being opiate free and I am grateful and amazed by this every day! Any positive effects are short lived and not worth the pain and agony for myself and those around me! I have enough problems dealing with my N + C as it is! That’s why I am here! Looking forward to sharing experiences and learning how to best go forward with life! Thanks
Ferret@PaullyD69
Welcome! And thank you for your first hand experience. I hope you spend some time here sharing your experiences and what works for you. It’s a long haul for many of us. I’ve found what works for me and have posted in this Non Rx strategies section. Still no major cataplexy (and very very few minor episodes) using cannabis oil. Every once in a while, I stop taking it and the cataplexy is back within four days.
We are all different and just have to keep trying different things (ONE at a time) until something sticks. The most important thing is to never give up!
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