Narcolepsy

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Narcolepsy
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    Advise on not feeling ashamed about your disability when disclosing it?
    I think i overcompensate by minimising narcolepsy's effects on me and by trying to over prove myself. #MentalHealth #Narcolepsy #InvisibleIllness

    1 person is talking about this
    Community Voices

    Hi, I am new here.

    I am mostly doing ok. I have a compromised immune system so I have been self isolating since Covid started. I have lupus sle, fibromyalgia and narcolepsy. I am struggling with the desire to just be “normal” again. I never thought I would miss seeing people! It got worse when I was in a motorcycle accident. Both of my shoulders were broken and now there are a lot of things that I struggle to do physically. The accident was in June of 2020 and I am still in physical therapy. Luckily my right side wasn’t damaged as badly as my left. I have a plate and ten screws on the right, and my left shoulder is titanium now. My left rotator cuff was pretty well mangled. I have about as much range of motion as I am going to get. I am still working with one and two pound weights. I’m just feeling a bit isolated and whiny.

    6 people are talking about this

    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