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Narcolepsy and PTSD

Has anybody dealt with or know somebody who has Narcolepsy and PTSD? Im 21 as of now, i was diagnosed with narcolepsy at 16, and was just diagnosed with chronic ptsd a couple months back. My symptoms of narcolepsy have always been present but it wasnt until about a year or two go that i noticed specific pstd symptoms. Turns out ive lived with it for alot longer than ive noticed and ive never been treated for it. I was told by a therapist that i cant do normal ptsd related treatments like rem sleep therapy because i have narcolepsy, it might not be safe to do. Anybody have any input or suggestions please and thank you

  1. Hi , thanks for starting this thread. I was diagnosed with PTSD a few years before being diagnosed with narcolepsy. It meant that it was quite frustrating at times when various kinds of therapy seemed really hard to achieve (such as meditating— I would fall asleep!). I’ve since found many ways to deal with the PTSD while taking my narcolepsy into account.

    For meditation, I tend to keep it short and as more of a mindfulness practice over coffee, e.g. spending a solid, uninterrupted 5 minutes completely absorbed in everything about the coffee in front of me. It’s great because of the stimulating effect of the coffee and I just love coffee haha This is also called a grounding technique and, if you do it regularly enough with the same thing (e.g. coffee), your brain creates an association between that thing and the feeling of calm presence, which can be very helpful when your PTSD is triggered and you can get yourself to a coffee to quickly bring that sense of calm back.

    Another thing I do is yoga (someone wrote an article about it on here) and I have to check in with myself about whether I can close my eyes during the final rest at the end as sometimes I’m ok and other times I will fall asleep. But the practice of yoga has been a great way to manage my overall stress levels which contributes to managing my PTSD trigger sensitivity. And, because yoga is active and forces my mind to be present and thinking about getting your technique right and breathing in flow, etc., it keeps me awake and away from worrying thoughts.

    CBT (cognitive behavioural therapy) worked very well for me with my therapist. This was before I was diagnosed with narcolepsy and I actually think it is one of the rare times where narcolepsy is a bit of a superpower because narcolepsy puts us frequently in that twilight space between awake and asleep which means we have become so attuned to super analysing our thoughts and experiences to determine what’s real and what’s a dream. This means we have unwittingly learned how to jump into that pause between emotion and reaction. CBT teaches us to make a choice in that space as to how we react. That choice then leads us down a healthier path of healing. To put that concept into a concrete example: one of my PTSD triggers is those big professional cameras that camera operators hoist around on their shoulders. My workplace occasionally has camera operators wandering around filming stuff for promo material and so every now and then I’ll suddenly find a camera pointing in my direction. When this happens, I can feel the emotional trigger surge up inside me and I have a brief moment to choose how I react to this feeling and situation. I used to get the shakes and tears and have to disappear for a while to resettle myself. But, with practise, I can recognise the feeling and choose tell myself a different story, that I’m safe and ok and this camera person is doing a good job, and I’m going to focus on something about them that I like, maybe they have a friendly face, or a great shirt, etc. And that triggered emotion subsides.

    Another example of how this superpower of ours has helped me with PTSD has been when having those awful vivid dreams PTSD and narcolepsy sufferers both experience.
    My psychologist taught me to, when I wake from one of those dreams, to actually go back into the dream and change the ending, kind of like lucid dreaming or just thinking it through while sleepy. And because narcolepsy puts us in that twilight zone so often, we can actually do that pretty well!
    A basic example the psych used to explain this concept to me was this: say you’re having a stress dream where you’re trying to leave for work but you just can’t find your keys anywhere, and the dream goes on and on without finding your keys, you’re running later and later for work, and it’s just more and more stressful.
    When you wake up, you can tell yourself to go straight back into the dream and change it so that you walk into the next room of the house and there the keys are on the table and now you’re ready to go to work on time.

    Anyway, this became a super long post so I’ll end it there. I found this thread because I was also looking for advice from others suffering both PTSD and narcolepsy. So, hopefully, others see this thread and add their stories to the mix 😊

    1. i forgot to say I also did a few sessions of EMDR therapy (a therapy that simulates REM sleep) with my psychologist to take the “rawness” out of some of my flashbacks and it was very helpful for me. It was very tiring (but isn’t everything?). It worked for me and so I would recommend trying it if your sleep specialist says it’s safe for you. I am not really sure why it wouldn’t be safe as you just sit there while they guide you through thinking about the tough memory while you follow their hand repeatedly from left to right with your gaze (to make your eyes do what they do in REM).

    2. Wow, . What fantastic advice! I hope sees it and gives some of these techniques a try. I love the mindfulness exercise. It seems like such a simple, yet effective thing to do. I am prone to some pretty horrific dreams and have tried going back and changing the ending. It works quite well for me. I hope you continue to find successful treatment options and that you are eventually able to control your PTSD. Thanks for taking the time to share what helps. I am sure others will find your suggestions invaluable. Gentle hugs. - Lori (Team Member)

  2. I can relate to suffering from both narcolepsy and PTSD. I've had narcolepsy for a few years now and was just diagnosed with PTSD this year. I've found it difficult to manage the PTSD flashbacks due to my narcolepsy. My dreams have become more disturbing, intense, and frequent with my PTSD, despite being on multiple medications to manage my dreams. You are definitely not alone in this. People with narcolepsy are more likely to suffer from mental health issues including PTSD. It's difficult for me to attend therapy treatments because of how easily I fall asleep, so healing is slower for me in that regard as well. I do my best though, and work with what I can. I recently submitted an article about PTSD and narcolepsy for our site - I will post it to this thread once it is published! Thank you for sharing. Warm regards, Tatiana ( Team Member)

    1. Hi , thank you for sharing. Other community members haven't discussed PTSD in our forums yet so we would love to hear more about your story if you're open to sharing. Hopefully, a few others in the community will chime in with their similar experiences. Best, Allison (Team Member)

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