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  • About Hypersomnia
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    What's New in Hypersomnia
    Community Voices

    I'm new here!

    Hi, my name is Miranda_H. I've been diagnosed with Idiopathic Hypersomnia, among other things. I look forward to being a part of a community that strengthens each other as we each face our own illnesses.

    #MightyTogether #Hypersomnia

    Community Voices

    I'm new here!

    Hello. I'm Caroline but my username is Loudflower. I'm here because I've recently been diagnosed with hypermobile Ehlers-Danlos - this diagnosis came a few years after being diagnosed with breast cancer due to a gene mutation and going through all the surgeries and treatments that follow. That is the very short version. Life has changed, y'all. Some days I am determined and optimistic and too many days I am just struggling. It's a lot. I have even retired early (I am a pharmacist). I'm hoping to learn from everyone, and hopefully to find a laugh or two as well.

    #MightyTogether #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Hypersomnia #HereditaryBreastAndOvarianCancer #HereditaryPancreatitis

    4 people are talking about this
    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.

    #Spondylolysis and Spondylolisthesis

    2 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

    I’m new here!

    Hi, my name is hojorabbit. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Hypersomnia

    3 people are talking about this
    Community Voices

    Confused and Languishing

    I’m not depressed, or at least not like I used to be. I don’t constantly hate myself, or actively want to die. I’m just stuck in a pattern of listlessness. I can see everything that needs to be done, but part of me “doesn’t care”, because I’ve trained myself not to care or else I’ll beat myself up over it, and the other part of me gets caught up in where to begin, then gets distracted by something else, and nothing gets accomplished. Loads of laundry sit in the washer for days, often run 3+ times, and never get folded/hung up, but get sifted through a million times, as I look for certain items. Having company means a couple days of stressful, all-hands-on-deck house cleaning, and even then concessions have to be made, so that I’m not completely useless the day of.

    Sometimes, I’m in too much pain, or too nauseous, or dizzy/lightheaded.

    Often, I can’t seem to wake up for most of the day, or wake up, only to be overwhelmed by the need to sleep again, soon after.

    I feel useless, lazy, and often even worthless. I want to be a productive person, and an awesome wife and mom, but I don’t know how to push past this ridiculous mental block that has me stuck in this rut of uselessness.


    4 people are talking about this
    Community Voices

    It has never crossed my mind to write a grief list. Here goes... 1) I have just lost 2 very dear friends in the span of 10 days. Gunter on 3/3/22 and Isabelle on 13/3/22. It has TRIGGERED my "long-standing-undiagnosed-depression/they call it DYSTHYMIA" for over 12 years now since my mom died on 28/3/10. 2) I am 49 and have gone back to university to pursue a Masters's degree in order to gain back employment in the following year. 3) Meanwhile in the last few weeks/March still, I recently was suspected of colorectal cancer w the CTScan but the Colonoscopy was clear! It threw me off the rails. 4) I seem to have lost focus, interest, hypersomnia, and am rather dysfunctional. I DONT KNOW WOT TO DO or UNDO. Please help. Compassionate-constructive help is welcomed. xx

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    Community Voices