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outcold

695d

How is it possible that I have both cataplexy w/narcolepsy AND suffer with insomnia simultaneously?

Top reply
    • outcold

      667d

      @Forever_Exhausted get out of here! I lived in Indianapolis, Greenwood, AND Beech Grove!! Moved to cali about 5yrs ago!! I wouldn't be surprised if we knew each other, ha! I spent wayyyyyy to much time in St. Francis, believe me

    • Waterlemon

      688d

      I go through this same thing!! xywav helps sometimes but some nights I lay awake until like 4 AM :/

    • Forever_Exhausted

      692d

      I suffer the same I always say I’m a narcoleptic with insomnia and people look at me like I’m crazy! And right now I don’t have a psychiatrist or sleep doctor only my PCP who found out I had narcolepsy with cataplexy. I’m in Indiana and there seems to be one office JMW neurology at St Francis but my neurologist left there and I owe to much $ so I can’t go there and I refuse to go to IU and my psychiatrist no longer takes my insurance so I’m all messed up right now!! And my thyroid problem doesn’t help the situation AT ALL!!

      • outcold

        667d

        @Forever_Exhausted get out of here! I lived in Indianapolis, Greenwood, AND Beech Grove!! Moved to cali about 5yrs ago!! I wouldn't be surprised if we knew each other, ha! I spent wayyyyyy to much time in St. Francis, believe me

    • Musiclover22

      694d

      Insomnia is a symptom/side effect of narcolepsy. There are multiple reasons for this including the fear to sleep (because of the hallucinations, sleep paralysis, fear of not waking up on time, etc), result of medication, and because part of having narcolepsy is that we have a really hard time regulating sleep! It’s not uncommon for treatment of narcolepsy to include medication to treat insomnia to try and help create a healthy sleep routine

      • outcold

        667d

        @Musiclover22 thank you so much, I really do think the people who came up with this should go up for the Peace Prize!! I'm not even sure how I stumbled upon it, but its a Godsend that I did! So meant helpful people, I feel more important already!!

    • PurpleRayn

      694d

      I experienced this also. I had Narcolepsy for nearly ten years. Of course you will be awake all night if you crashed all day so they may give you Xyrem so you can have a productive night sleep. BUT NOOOO. I would literally go from being in bed for a day to not sleeping at all for 2 days. One day I went to the emergency room after only sleeping 35 minutes over 4 and a half days. That’s when I was prescribed a sleep medicine for the night time and Aderrall for the day. It took 8 sleep medication till I found one that worked.

    • Magpie42

      695d

      Narcolepsy often has insomnia as a symptom. Our brains don't make/use the necessary chemicals to keep us awake during the day and asleep at night. I have NwC and I should have been asleep 2 hours ago.

      • outcold

        667d

        @Magpie42 I feel you! Its just weird that I've had insomnia since my early teens, I'm 55 now (a very rugged, young looking 55, write that down yall!!) Its amazing what the body and mind can get used to. I have lived on maybe 3 hrs of actual sleep a night since then, Was fine...now this. But will never complain about it. Ain't no time for that. ima be over here working on a cure. I'm not a doctor or scientist so some help??

    • AlwaysTiredZZZ

      695d

      According to an article posted on medicalnewstoday.com: A person can have both narcolepsy and insomnia. While the two conditions represent opposite ends of the sleep disorder spectrum, a person with narcolepsy — who may experience extreme tiredness during the day — will also typically experience difficulties remaining asleep at night. People with narcolepsy may have other sleep disorders such as insomnia, sleep apnea, and vivid dreaming. I have narcolepsy, insomnia, sleep apnea and vivid dreaming.

      • outcold

        667d

        @AlwaysTiredZZZ omg, is this what allows me to dream lucidly? And you can too? When I was young the amount of control l had, was incredible!! I could turn regular dreams in to cartoons, could taste food, and people rarely saw me when I was going through puberty. If the neighborhood moms knew what I was up to....they'd never stop slapping me!! I literally was teaching my older sister how to do it before I was 13. BEFORE people were really even studying it. And its so simple to do, ya know?

      • outcold

        695d

        @AlwaysTiredZZZ I have the same. I assume that when you say you have vivid dreaming you're referring to lucid dreaming? Where can take over all aspects

        • AlwaysTiredZZZ

          695d

          @outcold no, not lucid, vivid. Sometimes I can't tell for sure if I dreamt something or if it actually happened.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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