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    I’m new here!

    Hi, my name is Lizatuesday. I'm here because
    And where I live there is no one that I can talk to because no one understands. I have yet to meet anyone with it where I live
    #MightyTogether #Hypersomnia

    5 reactions 2 comments
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    More diagnoses and 4th time Covid.

    I haven't journaled, haven't been making art, it's been -34F wind chill days of blizzards, the apartment we moved into had bedbugs and we've been fighting them since before Halloween. I legally lost my ability to drive myself and my 3 kids places with the idiopathic cns hypersomnia and epilepsy diagnoses. This time of year is tricky bc of my miscarriage at Christmas a few years ago. Our two bedroom, 850sq ft. apartment feels claustrophobic and the holidays were sandwiched between two of my kid's birthdays. With out of pocket meds, my expenses are bigger than child support. I can't work right now and spend my days in PT and to attend specialists. Basically, I feel like even with progress, I'm barely keeping it together. And then on December 16th, I caught COVID for the 4th time and I still have it. I am so tired and discouraged and I feel stuck. Yesterday, I finally had enough energy to try to draw. My hands haven't been working right in months, after the last round of seizures, so it made me feel pleased to see this little bit of peace on paper. #EhlersDanlosSyndrome #InterstitialCystitis #Fibromyalgia #ComplexPosttraumaticStressDisorder #majordepressive #Vestibulodynia #idiopahiccnshypersomnia #Epilepsy #DishydroticEczema #Miscarriage #COVID19

    24 reactions 5 comments

    I’m new here!

    Hi, my name is Caitlin Kindberg. I've been diagnosed with idiopathic hypersomnia and I want to connect with others that have this diagnosis.

    #MightyTogether #Anxiety #Depression #Hypersomnia

    11 reactions 10 comments

    I’m new here

    Hello everyone! I joined because I became disabled after getting the COVID-19 vaccine and I don’t know anyone else that has happened to. So, I would like to communicate with others about illness and disability and how to make my home safer for a disabled person.
    #CognitivelyDisabled #ImbalanceIssues
    #Hypersomnia #VaccineHauler


    Why Can't I Sleep? Why Can't I Wake Up?

    Often in the past, I went to bed at my usual time but woke up at 4:45 a.m. and couldn’t get back to sleep, no matter what. It was like I had a hamster on a wheel inside my brain.

    Other nights I would go to bed early and couldn’t get to sleep for hours. I tried reading, but sometimes I read till 2:00 a.m. with no sleep in sight.

    Then again there are days when I feel the need to nap in the early afternoon. I try to resist, but if I give in, there are no refreshing catnaps for me. I’m down for two and a half hours typically. Then the whole sleep-wake cycle gets off course.

    And when I’m in the middle of a depressive episode, I’ve been known to stay awake all night, obsessing and catastrophizing. There are also days I can’t get out of bed in the morning, or all day in some cases, though I don’t usually sleep well after them.

    What is it with all the sleep disturbances? Well, I have bipolar disorder 2, so that may have something to do with it. www.ncbi.nlm.nih.gov/pmc/articles/PMC3321357 (NIH) says, “Sleep disturbance is a core symptom of bipolar disorder. The diagnostic criteria indicate that during manic episodes there may be a reduced need for sleep and during episodes of depression, insomnia or hypersomnia can be experienced nearly every day.” They also note that insomnia and hypersomnia are early warning signs, or “prodromes,” of a bipolar episode occurring. In fact, sleep disturbance is the number one prodrome for mania, and is recognized by approximately 80% of those suffering from it as an indication of an impending episode.

    www.webmd.com/bipolar-disorder/guide/bipolar-disorder-and-sl... discusses a number of ways that bipolar disorder is associated with poor sleep: either insomnia or hypersomnia; decreased need for sleep; a circadian rhythm sleep disorder; REM sleep abnormalities which can affect dreaming; and co-occurring sleep apnea (around a third of people with bipolar also have sleep apnea, which is associated with excessive daytime sleepiness and fatigue). Bipolar meds have also been known to affect sleep-wake patterns, as well as co-occurring substance abuse disorders.

    What are the consequences? Sleep deprivation has demonstrated detrimental effects on cognitive functioning, particularly in teens and young adults. This has been observed in performing psychomotor vigilance tasks, working memory tasks, and cognitive processing tasks. No wonder a series of sleepless nights can result in a foggy or fuzzy-headed feeling!

    Unfortunately, the advice given for how to counter the effects of sleep disturbance in bipolar disorder is almost indistinguishable from the advice given to the general population, such as incrementally moving bedtime and waking time until the desired period of sleep is reached; and not using electronics such as computers, cellphones, and TVs near bedtime. Some preventives that have worked with bipolar patients have included bright light therapy in the morning and the use at bedtime of supplements containing the naturally occurring hormone melatonin that the body releases in response to darkness.

    My own experiences with sleep deprivation and #BipolarDisorder have been a mixed bag. For many years before I was diagnosed, I was subject to the difficulties caused by shift work, either third or second shift. Third-shift work made me too tired to drive safely, especially if I was also working first shift the next day, which sometimes happened. My husband pitched in and picked me up on those days. My friends knew never to call me before noon.

    For a while I took a prescribed sleep aid, but sometime during the last year realized that as my sleep-wake cycle was regulating to a more “normal” pattern, and that the sleep I got without the meds was more refreshing and conducive to clear thought in the morning. So I quit taking it, with the approval of my psychiatrist. Even though I work at home and make my own hours, my work schedule has become predictable as well. Now I wake around 6:00 or 7:00 a.m., check my emails and timeline, have some breakfast and start my work (when I have some). I break for lunch, then resume work in the early afternoon.

    As for getting to sleep, it’s usually not a problem (except when it is). Any more, I take my nighttime meds, read for about 30 minutes, and drift off to sleep normally.

    1 reaction

    New spoonie

    Hi I'm new here on mighty. I just signed up yesterday but I already forgot how I came across this platform, thanks to my #BrainFog lol

    It's been 2 years and 7 months since I contracted #COVID19 and have been suffering with #longcovid since then. Despite hearing all kinds of denials possible from doctors, now I am diagnosed with #MyalgicEncephalomyelitis and #Fibromyalgia and many more. Not that the labels help with my symptoms, but they surely helped me look in the right direction when searching for possible #treatment plans.

    I'm almost 40 and been #stuck at home mostly. I've recently been approved for a public transportation access link service so I'm planning on using that from time to time. I use a #Walker #Rollator and occasionally a #Cane when I go out to the doctors.

    I guess I'm here to connect with others going through similar things whether it be a longcovid, PASC, fibromyalgia, ME/CFS, arthritis, spinal stenosis, or more symptom-specifically #HypersomnolenceDisorder #Hypersomnia #PeripheralNeuropathy #ChronicPain #ChronicFatigue
    I am quite new to this #Spoonie life and trying my best here.

    4 reactions 2 comments

    I’m new here!

    Hi, my name is bluenoteL. I'm undiagnosed and wanting to hear from other people who might be going through similar things: muscle twitches, joint pain, muscle pain, joint hypermobility, neuropathy, fatigue, eye issues, concentration issues, hypersomnia, coordination issues, TMJ, tinnitus, vertigo, nausea, dizziness, bloating, weight loss, lack of appetite, cognitive issues.
    I assume fibromyalgia or something neuromuscular as that's who I'm being referred to next, but this is over 2 months of no answers and meds that don't help much, feeling beyond hopeless. I've been turned into an idiot, and am unable to exercise or really do anything, any hobbies or anything I enjoy.
    #MightyTogether #Anxiety #Depression #Migraine #PTSD #ChronicDailyHeadache #MultifocalMotorNeuropathy #Hypersomnia #cramp-FasciculationSyndrome #BenignParoxysmalPositionalVertigo

    1 comment

    I’m new here!

    Hi, my name is Maddie. I'm looking for a welcoming community that will help me learn more about not only my diagnoses but the others out there too. Also, I am currently in school and struggling to get through the day because of my health issues. So, I am hoping I will find some advice or just some friendly words on here to help me each day and especially the rough ones. 😊

    #MightyTogether #Fibromyalgia #SocialAnxiety #Depression #polycysticovarysyndrome(PCOS) #ChronicDailyHeadache #Hypersomnia #HypermobilitySyndrome


    I'm new here!

    Hi, my name is Michelle79. I'm a divorced mom of 2 teens without a support system. I feel like I'm scrambling just to survive. I'm lost - I know that help is available but need help finding it. I'm dealing with all this while still trying to be the mom my kids deserve. My hope is I can gain knowledge, resources and validation that I'm not alone.

    #MightyTogether #MultipleSclerosis #Scleroderma #Hypersomnia #PTSD #OCD #Anxiety #Narcolepsy