@capeofgoodhope No worries about where you post something! Are you taking any medications for cataplexy like Xyrem or an antidepressant? Have you tried any other medications for alertness?
The trick with amphetamines like adderall is that they are known to rapidly cause tolerance in most people. The key is to take a day or two off once a week if you can so the tolerance goes down. It does suck taking a day off that day though. I would also avoid caffeine if it doesn’t do much for you. Regular caffeine use actually has been shown to make people more tired because it is great at disrupting sleep even if you don’t realize it is. This is true even if you only drink it in the morning.
What I personally do is alternate medications to avoid tolerance. I take nuvigil on the weekends and an amphetamine on work days. But if adderall used to be great and stopped working, you have probably just become tolerant.
There’s a bunch of stuff you can do to improve your daytime functioning, like regular exercise and keeping a healthy weight. For me to function, it’s a combination of lifestyle and medications.
Almost forget to mention the first part of the topic title.
On top of more usual cataplexic experiences, I also experience frequent episodes of full-body paralysis that last 20 minutes to 2 hours. I would say the average is around 20-30 mins. My nuero doesn’t seem to be concerned, even though it exceeds the max recognized cataplexy episodes of a couple minutes.
During this time I am fully aware of what is happening, but I cannot move and cannot speak. I can move my eyes for the most part, however. Intense episodes of anger or sadness usually precede it. I can always feel it coming on: my movements become slower and slower until I can’t move. Like a battery powering down. The “power-up” 20+ minutes later is also slow.
I’m glad you decided to post. I am also hoping someone will respond with a suggestion that will be helpful to you. I can understand your frustration with the lack of options, not wanting to choose the ones which are currently available and having all of that compounded by the lack of accessibility to other ones which may be helpful.
Since you will be traveling internationally, there are some tips offered by other forum members under this link related to traveling with sleep disorders. (If you haven’t previously read it, I hope some of the information there might be helpful to you.)
If you don’t already have a medical bracelet, I would definitely recommend getting one. I always wear mine when I’m traveling or out by myself, just in case.
I also carry a description of cataplexy and a copy of my diagnosis along with me on my trips, even though I have never needed either of those.
I am glad for the opportunity you have in front of you and that you are moving ahead with your plans. I hope you will find the help you need. I wish you the best of luck on your journey to find answers and also on your adventure abroad. 🙂
I don’t know if this is the right thread to post to but oh whale.
My cataplexy has slowly been getting worse as time passes by and my meds arent really working anymore. One of the side effects of my cataplexy med (Nortriptyline) is sensitivity to UV rays, wether they be artificial or real. I’m going to be traveling to Japan for an exchange program I’m involved in and I need to find a treatment that won’t mess with my current stimulant (concerta 54mg) and would make a difference with my cataplexy.
My neurologist is and has been trying to get me on Xyrem, but I am terrified of it because of what it is. I also live in Indiana, which has a zero tolerance for THC, so I’m afraid Cannabis oil is not a treatment available for me right now sadly.
Any ideas or suggestions of meds or treatments I could look into for my cataplexy?
I second the ferret.
I am also addicted to coffee and also vape coffee flavor nicotine which i bought from
It didnt disturb my sleep cycle at all.
@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.
To 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.
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…
Open 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.
Here is the original study:
There 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