Narcolepsy

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Narcolepsy
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    What Helps a Woman in Her Twenties With Narcolepsy

    With our ongoing “What Helps Me” series, The Mighty is leaning into what sets us apart from other health sites: We aim to provide real health advice from real people who live it. In this spirit, we asked our community for the best insights and tips they’ve developed for managing their conditions. As always, they responded with their unique health stories and we are happy to pass along their well-tested resources to you. Today, we meet Mighty member Haley. She is 27 years old and lives with narcolepsy. Haley, what helps you? THE MIGHTY: What helps you most when your condition affects your physical health? HALEY: It helps me to take a nap — especially during… lunch break at my college. I also take medicine that helps me stay awake, and it’s… for my other [health] condition [too]. The medicine doesn’t always help me stay awake, so I try to get a little rest in when I can. What helps you most when your condition affects your mental health? Naps and meditation help me feel mentally “better,” even though I still feel down at times. [My] type of narcolepsy isn’t taken seriously [in my] family and [friend group]. I go to therapy for my mental health, and the cognitive-behavioral therapy (CBT) I have to be in for my other conditions [also helps my narcolepsy]. How do you cope when your normal self-care isn’t working? I try to remind myself that it’s OK to need downtime. I [tell myself that I] can’t stop being tired, so I should relax instead. I will [have an easier time] tomorrow if I slow down today. Thank you to Haley for her contributions to our community. Did you find this helpful? Add your gratitude in the comments. If you want to tell us what helps you, you can complete our survey here .

    Community Voices

    Frustrating news

    I’ve had a really hard time these last couple of years with #Hypersomnia / #Narcolepsy symptoms, so I finally went to a sleep doctor. My insurance won’t cover an in-clinic sleep study, so I had to settle for the home study, which was NOT accurate in terms of sleep efficiency and sleep latency readings, but said that I *barely* have mild sleep apnea, and only on my back. Apparently, “true” hypersomnia and narcolepsy are extremely complicated to diagnose, even with an in-depth sleep study.

    So, my doctor and I explored all the options:

    -sleep aid at night: already tried it, and doesn’t solve my excessive daytime sleepiness

    -wakefulness aid: (ie: stimulants) can’t prescribe due to my tachycardia

    -sleep position therapy: keeps me from sleeping on my back, which is the position recommended by my previous physio for my back/hip pain

    - mouth guard: probably won’t work, due to my lack of teeth, and is currently out of my budget

    - CPAP: complete pain in the butt and expensive, and a bit overkill for the “borderlinesleep apnea diagnosis

    - Scheduling: what I’ve been trying to do anyways, but doesn’t work, because I get so dang tired at random times and my kids and I have things to do.

    I’m feeling so stuck and frustrated, because I just want my frigging life back! I want to have the energy to do all the things I’m supposed to do, and I was really hoping this might hold some answers.

    #SupraventricularTachycardia
    #Fibromyalgia
    #Spondylolysis and Spondylolisthesis

    2 people are talking about this
    Community Voices

    Plans

    So used to being broken
    Don’t know how to be well
    Now my brain is healing
    Negative thoughts shouldn’t dwell

    Yet the more I try
    The more I feel I fail
    Rather like a dog
    Trying to catch her tail

    Round and round I go
    Endless broken days
    Try to do my part
    But end up in a daze

    The more I sleep
    The more tired I get
    Though I fight awake
    Sleep conquers me yet

    I push through a day
    Pain fills every move
    Know it’s my fault
    I have everything to prove

    I can do this thing
    I try to believe
    But my past mocks me
    My memories retrieved

    No energy to try
    Lest I fail again
    Tired of fighting
    Wishing for the end

    But the end eludes me
    My kids need me here
    I have to keep trying
    Can’t give into the fear

    Something must change
    Though I don’t know how
    I have to do something
    It has to be now

    I’ll make a plan
    Just another in line
    And maybe somehow
    I’ll stick to it this time

    I just can’t give up
    Can’t sit here and wallow
    Think what I’ll regret
    When I look back tomorrow

    -Me

    #ADHD
    #Depression
    #Anxiety
    #BorderlinePersonalityDisorder
    #Fibromyalgia
    #Narcolepsy
    #HypersomnolenceDisorder

    4 people are talking about this
    Community Voices

    I Need Some Positive Words ... Feeling a little down ...

    What is something positive that you could share with a chick that needs to feel a little more upbeat? I want to get out of this funk so much. Anything POSITIVE or encouraging or motivating is welcome. Or if you need to vent, that's okay, too!

    #Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Narcolepsy #prolactinoma #sibo #smallintestine bacteriaovergrowthsibo #RaynaudsPhenomenon #LeukocytoclasticVasculitis
    #SpinalStenosis #Lumbarfusion #SpinalFusion

    30 people are talking about this
    Community Voices
    Community Voices

    Lowimmune#321

    <p>Lowimmune<a class="tm-topic-link ugc-topic" title="321" href="/topic/321/" data-id="62855409681cc3001dcbb1d9" data-name="321" aria-label="hashtag 321">#321</a> </p>
    3 people are talking about this
    Community Voices

    I’m a mom to 3 kids, now 5, 8, & 9, and have had depression since childhood. I’m not the mom I always wanted to be, but I do the best I can. I’m on medication that helps a lot, have been through a lot of therapy, and still see a therapist every 2 weeks. It’s hard to even get out of bed and do the least that needs to be done. However, I just lost my grandmother, who raised 6 kids, while working as a teacher and taking care of many people in their church, as her husband was the preacher (leader) of the church, and that was expected. She was the kind of person everyone loved, and she loved people and took care of people with everything she had. Her children adored her. She wasn’t perfect, but she did everything with her whole heart. I realized, as I watched her die this week, that I wanted to be like her, to the best of my ability. If I were to die, today, my legacy would be that I slept too much, and couldn’t do anything productive. I don’t know how to do what I need to do, but I can’t let myself waste my life like this, either.

    1 person is talking about this
    Community Voices
    Community Voices

    New job; change is scary

    I'm starting a new job tomorrow - an admin assistant at a local school. Its the first time I have done work outside of retail, and my first full time job.
    I'm excited but also very nervous about if I can handle full time hours. I'll have to go back to "masking" my disabilities for a while too, which is also stressing me out. That uses precious energy.

    I guess I'm looking for some support and encouragement that it won't turn out horribly?
    #Anxiety #Narcolepsy #MentalHealth #InvisibleIllness #ChronicIllness

    37 people are talking about this
    Community Voices

    Hey everybody, this is my first post to this group. I am 65 years old, and over the years I have been diagnosed with BPD, PTSD, major depressive disorder, and type 2 narcolepsy. My dad abused me both physically and verbally for my entire childhood. When I was 15 he killed himself in a place and a way that he knew only I would find him, and after that I was on my own. My life was really chaotic until I was about 40 years old, when I moved to a new city and quit using alcohol and weed. Over the next 12 years, my life steadily improved. I was promoted several times at my job, and had a lot less drama in my life. I took up some old activities that had given me great joy in my youth - archery, and horses; everything to do with horses, owning horses, riding horses, taking care of horses. I felt as if I were finally on a road to recovery, as much as that was possible from many of my issues. When I was 52 years old, I met a woman at a party. She was someone who loved horses, but for years it had been pretty well impossible for her to participate because she was legally blind and had rheumatoid arthritis. We started dating, and it delighted me to be able to give her time with horses. Eventually we married, and we together for about 11 years in total. In the end it turned out that my connection to her was crippling, and I believe nearly killed me. As soon as she, "had me", so to speak her demeanor changed rapidly. She became insanely demanding of my time. She let me have nothing for myself. When we got a place together she threw temper tantrums about my hanging my artwork on the walls. When my dog died she threw a fit over the idea of my picking out the next dog, I caved and let her choose one. Over the years that we were married she undermined and poisoned many of my closest friendships, I was lucky to hang on to any people at all. She one way or another, conned me out of essentially all of my life savings. When I finally had the guts to leave her, I was left with almost nothing at all. One of my horses had died, I lost the other because the only place I could afford to board him was 80 mi away from the only place I could afford to live, and so I gave him up because he needed a person, a person who could be involved. So what had happened was that I had given myself over to the most toxic kind of narcissist you could possibly imagine. Over the years I was abused in many ways, gaslighted, manipulated, lied to, stolen from, and so much more. It was extremely traumatic and at the end of things, in as bad as shape as I had ever been in my life when it came to the symptoms of my mental illness. It literally set me back almost 20 years or more. I found myself wondering how I could possibly have let that go on for so long. I felt really stupid and ashamed. I was constantly depressed, and angry, and completely lost. I made the first serious suicide attempt that I had ever made in my life, and spent some time in the hospital because of that.
    The reason why I am posting this right now is because, while I have managed to claw my way back from what happened in many ways, I have been looking at myself and my history, and I don't like what I see. One thing that I can see very clearly is that all of my life I have been a people pleaser, and a chameleon, molding myself to what I felt like other people desired. Sometimes I haven't been very good at respecting other people's boundaries, but the really notable thing is that I had no boundaries of my own. If I cared about you, anything that you ask me to do, I would try and do without any thought of what my needs were. I even had a hard time saying no strangers. My ex had really good instincts, She knew how to pick her victim, and as I said I really feel like a stupid fool because of that, even though I know that I shouldn't, I still do. Another thing that I have seen about myself is how much shame I have. The shame and the people pleasing are part and parcel of the same thing, and I know are pretty common in people with BPD. I have had so much shame over yearly everything in my life. I have felt like a fraud and an impostor both in college and at work. Truly, every time I got promoted I felt like it was part of a masquerade, and that someday someone would see me for who I really was. I have been ashamed of ever wanting anything for myself, I have never liked myself, I have never been able to express my needs openly in a relationship. And now I'm 65 years old, and while I can try, it almost feels way too late to try and change and recover.
    I apologize for the length of this post, but in many ways I am in a lot of pain. So if anyone has any words of comfort or wisdom to share, that is something I could really use right now.

    8 people are talking about this