Sunday, September 6, 2015

The connection between MDMA and Narcolepsy (Cataplexy)!

I have made a lot of research on the connection between the MDMA usage and narcolepsy - a sleep disorder. Narcolepsy is usually observed with a symptom called cataplexy. A sudden muscle weakness.

It was really hard to find information on this topic on the Internet. MDMA is an illegal substance and also known as Molly or Ecstacy.

Narcolepsy is a rare condition and many of the narcoleptics are unaware of their condition. Besides MDMA usage is not as common as pot or alcohol consumption. This makes it really hard to find people sharing their experiences on this combination.

A person posted on bluelight in 2007 about the enormous increase in her symptoms after she rolled. And nothing else! The web pages that contains both the MDMA and narcolepsy words, usually talk about Xyrem -the narcolepsy treatment drug- and how it is abused for recreational use and how it has similar feelings with MDMA! And even the doctors don't know much about it. You know medical studies need data nd observations.

Actually I am kind of an internet parasite. I consume a lot of information shared by others. And I don't usually create content. But in this case I thought I might help some people with my observations.

2 important things!

1. Please comment here and describe your conditions and experience for others to create more information on the subject. People will be thankful to you!

2. Different bodies have different reactions. So the things can be different for you. Do not assume that things will be the same for you!

Here it goes:

MDMA made my friend's narcolepsy symptoms extremely observable. My friend had been having occasional sleep paralysis attacks for the last 10 years since he was 20. He was always sleepy during his college years. Everyone including him thought that he is just a lazy type of person. Especially if there are less social stimulants around, it was hard for him to cope with that sleepiness (for example during a lecture) He was also experiencing cataplexy attacks time-to-time but he didn't put too much attention on that. They were less than 1 second and barely noticeable from outside so he wasn't  too much concerned about it.

Last summer he did MDMA for the first time in his life. And it has all changed. His cataplexy attacks became very frequent and more severe. Now it was also dangerous because cataplexy attacks were long enough for him to fall down. He had to stop and hold on something to prevent falling. And then  it was easily observable from outside world, too. People started to ask him if he is OK when he had cataplexy attack. He started to have day-time naps because he couldn't stand the day-time sleepiness anymore. And the sleep paralysis was there almost every night! He went to doctor and he was diagnosed with narcolepsy after all the tests. He wasn't even aware there was a condition called narcolepsy before. He started to take modafinil. He told the doctor about the MDMA experience but the doctor didn't relate it with the increasing symptoms.

After 2 clean months the he was improving. Less sleep paralysis, shorter and less severe cataplexy and less day-time sleepiness. It was definitely going better. Then he did MDMA once again one more time after months and all of a sudden all the symptoms were back there  once again. Now he was really suspicious about the connection between MDMA usage and narcolepsy. He started to improve one more time after 2 clean months. But 2 nights ago he rolled once again. He liked rolling so he somehow wanted to believe that molly and narcolepsy don't have any connection. But unfortunately symptoms are here again. Last night he had a long and severe sleep paralysis.

Now he's positive that MDMA makes narcolepsy much worse! If you have narcolepsy, never do MDMA! He stopped it and he hopes that he will fully recover sometime. It is obvious that he will improve, as he will never do it again but he is not sure if it is ever gonna be as he never rolled.

23 comments:

  1. Thanks man! You are more helpful to me compared to my psychiatrist.

    ReplyDelete
  2. My friend with narcolepsy took a clinical dose of MDMA (in the higher range) and she saw only clear unambiguous benefit. Her narcolepsy and cataplexy remained mostly unchanged but every other aspect of her personality and well-being improved considerably. She also sleeps for longer periods without waking up. I am sorry to hear that your friend did not see improvement, but I want to be clear that this issue isn't so cut and dry as to tell people to avoid MDMA. She was a miserable and depressed person prior to taking it and now she's an MDMA advocate; So am I. Best wishes to you and your readers.

    ReplyDelete
  3. My own experience is actually the opposite. I sleep like a baby, no "Tuesday blues" or "Suicide Sundays" after effects.
    Now for all intents and purposes I don't have cataplexy. (I've had maybe 6 total attacks that effect my arms only). I had serious issues with depression before hand. A year and a half and handful of doses (5x100) and no depression in sight.
    The restful sleep lasts for about a week and a half max, then it returns to the fragmented normalcy that is Narcolepsy.
    Note: The time spent rolling is also very pleasant.

    ReplyDelete
  4. I think this is the main contributor to my sleep paralysis. I really wish it would stop.

    ReplyDelete
  5. This was very helpful I'm currently a junior in hs and was going to take MDMA for the first time this weekend. It seems to me that it either makes things worse or better. However I've never had any experiences with cataplexy, it's always worried me that it might develop in the future and make everyday life harder to deal with. I guess I will have to see for myself. I smoke weed at night to help me fall asleep and stay asleep(usually a sedating Indica dominant strain) and I take 100mg of Modafinil in the morning 3-7 times a week depending on how I feel, I have also been on Xyrem, but did not find it very helpful in my circumstance. I will do an update during and after my experience with MDMA in the next few days.

    ReplyDelete
  6. So, I've had narcolepsy with cataplexy for about 10 years now. I'm 35 but back when I was 17 to 19 I took a lot of ecstasy. And other substances. Years later I became an opiate addict. Went on Suboxone, and within the last few months, finally after 8 years I'm finally free of Suboxone. But, after going off the Suboxone my cataplexy became awful. Until 2 weeks ago when i took some Molly. I noticed, and my friend did too, that while I was on it, there were absolutely no symptoms at all. And I worried that after coming down I'd have severe problems. But in the last 2weeks I've only had a full paralysis cataplexy attack once. I was having 3 to 5 of them daily. And that's not including the constant cataplexy that would occur but not lead to total paralysis. It was very unexpected for this to happen. Idk for how long but I will enjoy it while I can. I don't plan on doing Molly again. I'd rather a professional try to fix me since I've not been very successful in the area of self medicating and self diagnoses. But I wanted to share this.

    ReplyDelete
  7. I have been awake all night experiencing 'sleepy hallucinations' (which I found what they were called) I regularly use mdma in idiotically high dosages on a weekly basis around 1.5g a weekend and the past few weeks I have experienced hallucinations like these but tonight they have been continuous and consequently I've had no sleep. In one of them it would feel as if I just had my eyes closed and I'd open them and I could hear my sister talking from the next room so I FULLY CONTROLLABLY walk out of my bedroom and press my ear against the door and I can hear her having a conversation with someone which was like a normal conversation so I ignored it thinking that this was real life when something caught my eye when I looked out the window, it wasn't the normal scenery it was completely different it was a dessert with cacti which looked really cartoon like. Very concerned with this my body shook me awake and I opened my eyes in a cold sweat only to be in my room. If you're interested in my other stories whether they could help in some way I'd happily share them, hopefully someone can explain this a bit more for me.

    ReplyDelete
    Replies
    1. Hello, about 5-6 years ago I was having persistent sleep paralysis episodes with auditory hallucinations (I used to hear a man's voice and once felt a presence behind me). I was terrified to go to sleep. From that time in my life, I was paying close attention to the sleep paralysis. By far, it was most common to occur when I would take naps in the middle of the day. Also, I believe it typically happens less when I sleep with someone in my bed. I used to think that I was actually doing the things that I was dreaming of while having an episode. For example, I would try to pull my husband's arm so that he could wake me up or I would try to scream because it was scary not being able to move. When I woke I would ask him if I had actually done any of those things. He told me no. Once it started getting even worse I was trying to find a way for him to wake me up if I was having an episode. Finally, I found out that during sleep paralysis you can still control your breathing so what I would do is start breathing really heavy and rapidly. This helped notify him when this was going on and he would wake me up, thankfully. Obviously, this only works if someone is awake while you are sleeping. I got to the point that I would never take naps alone again. I will say my symptoms DRAMATICALLY worsened once I was feeling deeply guilty about something I had done. It involved relationship stuff and I came clean to my husband. I actually noticed that my episodes stopped. I think it was affecting me subconsciously. I'm not saying this for anyone to come clean about anything, this is just my own experience and hopefully no one judges me for it. I was much younger and thankfully have changed. The funny thing is that is was actually only over a kiss. A kiss with my ex was enough to do this to me. Anyways, since I've been paying attention to this ever since it's occurred I will say that stress is a huge trigger for me. Thankfully, I only had one episode since that time in my life. This time I think it was stress induced since nothing else personally was going on in my life like guilt. I'm writing this so hopefully it will help someone out there. I wish I would have known what was going on with me sooner or had done some research. I finally found a sleep specialist and he diagnosed me with Narcolepsy with Cataplexy. I'm thankful to finally have an answer.

      Delete
  8. I should mention that when the sleep paralysis first occurred I was single so I'm not sure what triggered it to start. Also, it is now my goal to inform people as much as I can about Narcolepsy with Cataplexy so that awareness gets better since my doctor said this typically goes 10-15 years without being diagnosed and that is actually my case. I'm 28 now and the sleep paralysis episodes started are when I 20 but worsened at the age of 22-23. I had Cataplexy in high school and I'm pretty sure the Narcolepsy my whole life. Thank you.

    ReplyDelete
  9. I dont use MD regularly just because I like to keep it for parties etc. however when i do ping (term we use i guess its the same as rolling) i feel like my catalepsy goes away and so does my narcolepsy but only to be replaced with extreme alertness and insomnia- like symptoms, however i take modaphinil to keep me awake during the day and colipramine for my cataplexy - which i take before i go to bed as its sleep inducing. i dont know if these meds cause the MD to work differently or if the MD causes the meds to be more effective but it is a noticeable change and quite revealing if you ask me. catalepsy can put so much mental stress and worry on you its tiring, without the effects of narcolepsy. Another thing to take into consideration is that ive never taken MD by itself, Ive always had it either with some drinks or weed, sometimes both.

    ReplyDelete
  10. MDMA is an ingredient of ecstacy and not the same thing. It's like saying sugar is the same as a cake.
    I have had Narcolepsy/Cataplexy for the last 18 years (I'm 45) and the ONLY time I have felt 'normal' again is when I use MDMA. This is banned even as a prescription drug in Australia and is very hard to find in a pure or clean form. I don't get the uphoria that I experienced in my early 20's, just a considerable length of time without the symptoms of either the Narcolepsy or the, in my case - instant full body paralysis, Cataplexy. It is simply legally unobtainable in Australia and I honestly can't see myself coping with the side effects of the alternative drugs for another 40 years.
    So... Fingers crossed for now.

    ReplyDelete
  11. I usually get sleep paralysis, exploding head syndrome and sleep hallucinations after using a large amount of mdma in one weekend. I do mdma at a minimum of once a month but not always large doses. Occaisonally have symptoms but especially do after mupltiple days of use...(edc). Never seen a doctor and this has always kinda had me wondering. Never used to get them before I started using m

    ReplyDelete
  12. Hi, i’m **** and i’m 30 years old.
    I’ve been suffering from narcolepsy from about 16 years old.
    I don’t have cataplexy.
    I noticed in school I was sleeping a lot, it was hard to concentrate etc.
    So I went to a doctor, got to a neurospecialist and was diagnosed.
    Years passed, I took Modafinil for like 4 to 5 years, but I got resistant and had to up the dose during that time.
    At some point it changed my way of thinking (sort of), I was moodier, quickly agitated and especially more arrogant.
    I gained a lot of weight during the years, like 40kgs.. at the end of that weight gain, (around my 29-30 years of age) I had little to no symptoms of narcolepsy.
    I still slept more than others, but it wasn’t like it was in my early 20’s.
    So at 28, i started doing XTC, not very frequent, maybe 4 times a year.
    At 29, maximum 1 time a month.
    Now in 2018, I had some kind of bad trip I guess around May, made me depressed for a week and I also decided to lose weight.
    Now, I lost 20kgs, so still 20 to go, but I noticed my narcolepsy was worse.
    I now did daytime naps again, something I didn’t do anymore.
    Last 2 weeks, I went on a serious party spree (festivals and ibiza).
    Let’s say I did 6 days out of 14 XTC/MDMA.
    I experienced some sleep paralysis (something that used to happen once every 2 weeks) and especially lucid dreams and night terrors.
    Now, 3 days after, I still have lucid dreams, no feeling of depression or night terrors though.
    I do more daytime naps than before but I think that’s mostly because of the partying.
    I’m now making the connection between MDMA and lucid dreaming / night terrors, for me it’s definitely connected.
    I’m gonna cut down on the xtc/mdma use for some time and go back to maximum once a month.
    I’m gonna see my neurologist again, it’s been a while since I had little to no complaints or need of medicine.
    I’ll keep you updated :)

    ReplyDelete
  13. What an interesting thread... So since highschool I would always come home and fall asleep the majority of the day then wake up to study at night. I always thought I had bad allergies I was fighting throughout the day that made me tired and got put on allergy shots to see if it would help, which it did not.

    Then I would have states when waking up of extreme fatigue and I could barely move, and I felt like a zombie, but in an hour or so I would finally feel normal and would go about my day (feeling daytime sleepiness etc.)
    Recently this past year I started taking pure MDMA at clubs and festivals High doses from 200mg-400mg and re-dosing to maintain a nice roll throughout the day. While on MDMA I felt incredible (obviously) and felt wide awake with no symptoms. But this following year my symptoms have worsened to the point of being in extreme brain fog almost every day. I thought it was maybe ADHD that was causing this fog, and was prescribed medications accordingly. All the stimulants though just intensified the fog that I was in as if it was causing a burnout effect that just made me crash even faster.

    Just recently I had a bunch of sleep studies done, and I have extreme narcolepsy with no cataplexy. But the only thing that has changed, and when these symptoms worsened was the following months after I had used MDMA. Now I'm starting to wonder if it is what caused my symptoms to worsen by messing with my brain chemistry somehow? That is what led me here... I was trying to see if there was any connection between what was going on and my MDMA use.

    Even after using MDMA and staying up to the point where I couldn't sleep if I wanted to, I would eventually fall asleep like a baby, and would sleep maybe 4-5 hours before starting the next day with no hangover effect, and no sleepiness at all. But, this last year has been extremely hard for me and my daytime sleepiness/brain fog (feeling like I took 4 or 5 shots of alcohol in a row and then tried to start my day) has progressively gotten worse to the point where I am now being put on Xyrem to see if it helps.
    I start Xyrem this week and will update you on what happens or if symptoms change. I was planning on going out to a big show later in december where I was going to roll again, so I'll also update afterwards and let you know how things go. I feel like the following weeks afterwards I don't really feel any symptoms, but it has been since july since I have taken any, and the longer I go, the worse these symptoms get, so I'm really curious now to see if there is a connection and if things get better following the use of MDMA again. I never put 2 and 2 together to think this might have caused things to get worse (or better at the proximal time to using it) but now that I know I have narcolepsy I shall monitor what I feel like and report in.

    I started having symptoms of sleepiness at the age of 15, and I am 32 now, with this brain fog only happening following my use of MDMA this past year. Things are just progressing too quickly for me to not make the connection to this, which is the ONLY thing that has changed to make my symptoms get to this point. I'll see yall soon and hopefully have some interesting facts to provide on my experience.

    ReplyDelete
  14. It would be great that the people that commented in the past, updated with their current situation!

    ReplyDelete
  15. I used to take mdma before my diagnosis with Friends at Parties....the effects were always great. Lots of energy, the normal effects someone should have love and Connection to the music. Decent sleep after and I never had a come down. I have been looking foe information to See If I would be able to take some again while being unser Wakix, but there is nothing out there and I will Not so it until knowing it is Not Life treathening. Happy to get know more if anyone has experience.

    ReplyDelete
  16. Hi There,
    Thank you for sharing the knowledgeable blog with us I hope that you will post many more blog with us:-
    SSD CHEMICAL SOLUTION FOR CLEANING BLACK NOTES. products with key specialization in the production.
    Email: info@medphamacureshop.com
    Click here for more information:- more info

    ReplyDelete
  17. https://pubmed.ncbi.nlm.nih.gov/32653557/

    ReplyDelete
  18. Thank you for this blog!!! I am 44 and I have Narcolepsy with cataplexy and I am sick of them both... Sick of having a fog of drowsiness every day all day... I have taken MDMA in the past it literally took away the fog and I have been prescribed Adderall which I am becoming immune too. So much more to explain than I have energy to do... Long story short I am really considering the use of Molly

    ReplyDelete
  19. I have Narcolepsy with cataplexy and have been looking for information on this. Funnily, I’ve had the opposite experience of many in this thread when taking MDMA, maybe similar experience to OP. I’ve taken MDMA a couple times and have had intense cataplexy from the experience. It’s like the flood of euphoria triggers my cataplexy, leads to full body collapse and loss of motor function for me. I can’t even speak or move myself without great struggle. I’ve only taken MDMA at home with my partner, in the middle of the day, so the setting is controlled. I’ve had to supplement MDMA with Adderall before dosing and during the trip to try and make it through. This definitely helps some with the cataplexy, but makes the come down worse. The cataplexy while on MDMA is so intense and hard to fight against. Idk if it has to do with serotonin and hypocretin reaction or what but it’s pretty wild. Next time I’m going to take a very small amount in hopes of staying alert. I didn’t feel like my cataplexy symptoms were different than usual a couple days after the trip.

    ReplyDelete
  20. I can say while on MDMA I have no cataplexy or narcoleptic episodes but the following weeks kick my butt i sometimes think mdma is how I got cataplexy that’s a big “I THINK” I’m glad I’m not the only one asking or stuck with the thoughts of did my younger years finally catch up to me… I didn’t have insurance for about five years and I was so depressed from my cataplexy episodes that I stated to self medicate or micro dosing Psilocybin. That saved my marriage my relationship with friends it gave me my life and also career back. Fast forward five years I have insurance somewhat of a dangerous career and I stopped taking my psilocybin because I’m 90 feet in the air some days but my cataplexy keep rearing it’s ugly head I have the drops lip quivers sometimes I fall to my knees and it seems any pill or diet proper sleep doesn’t help. So if some poor soul out there is like me give a small not even a gram of psilocybin a try and get your life back much love fellow sleepers…

    ReplyDelete