Idiopathic Hypersomnia

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Idiopathic Hypersomnia
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    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

    10 reactions 9 comments
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    Something is wrong, but still no diagnosis

    For the past few years, I have had progressively worsening symptoms. It started with my legs getting tired. Then whole body fatigue. Now, I have muscle twitches, cramps, tingling sensations, tremors, and I am too weak to do some activities I used to do. I have to use a cane to walk. I also have some urinary issues. The symptoms come and go. My doctor thought it was my spine, but a spine surgeon ruled that out. I think I may need a referral to a neurologist now. But really, I don't know. I am already on disability for schizoaffective disorder, and idiopathic hypersomnia. I also have a rare blood disorder. I am just so tired of going to doctors, and I almost want to give up.
    But I know if I do that, I will never get the help I need. I guess I'll just keep on keeping on.

    13 comments
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    Anyone else struggle with increased sugar consumption and/or emotional eating due to EDS? This is getting worse for me as I age :'(

    #IdiopathicHypersomnia

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    3rd time's the charm (💉😷🙏🏻)

    While it shouldn't have to be said, a friendly reminder that you never know someone's story just by looking at them.

    When I went a couple weeks ago for my #COVID19 booster, the pharmacy tech said "nope, not giving it yet". I asked about the walk-in availability that I saw advertised on their site. She glanced up and said "no, only for seniors. Or those who are VERY ill." I explain that I have a chronic illnes making me high risk (immunocompromised) & that I've been aggressively treated for 2.5 yrs on meds that strip my immune system (for an unrelated mystery diagnosis). She looked me up & down. "I'll have to check with our pharmacist but I don't think we'd give it to you. What issue is it?"

    "Primary Idiopathic Hypersomnia with long sleep time (IH-LST)."

    [Blank look...]

    "It's a rare & chronic neurological sleep disorder resulting in debilitating EDS (excessive daytime sleepiness) because my brain can't process any amount of sleep as restorative."

    Even so, she pushed back. Said I wasn't eligible for booster until 8 months after my 2nd dose. Asked when I got the original vaccine & promptly said "no you didn't" when I told her I got my 1st in March. My vaccine card says otherwise 🤣 but she said "OK, well that's still not 8 months". I told her I read that the waiting period for high-risk individuals is just 28 days after 2nd dose. "No, I don't think we're doing that. Where did you read that?" I asked to chat to the pharmacist at that point to clarify because I read on both Walgreens & #CDC websites about the 28-day mark.

    "Regardless, we may not have the proper brand." Obviously, I had checked availability by manufacturer so was nearly positive they had Pfizer in stock. I was again warned that boosters are limited supply. ONLY for those who NEED it. I reached in my purse to get my #RareDisease ID card. With a big *siiggh* she finally turned to find the pharmacist. Less than 4 minutes later, she came to administer my 3rd shot.

    TL;DR >>> #Disability isn't always visible. An illness isn't less legitimate just because YOU haven't heard of it. The elderly aren't the only high-risk population. And Walgreens needs to educate their staff ASAP!

    #IdiopathicHypersomnia #Advocacy #Spoonie

    5 comments
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    Did ya take too much or just UBëR stressed?

    I had a coffee. Took my meds. About an hour later, my heart rate is stuck at 130 bpm. It will not calm down. If I stand or walk, it’s up higher. Laying down is the only thing that lowers it and that’s right around 120.

    Increased heart rate hurts. #PosturalOrthostaticTachycardiaSyndrome sucks.

    I don’t know if I somehow may have mixed up my modafinil and took more than I should have, or if I am so stressed out and #anxious about talking with HR about extraneous family circumstances where I need to take 4-6 weeks of unpaid leave that it’s causing my heart rate to go nuts and stay there. (And I just found out it might need to be longer. 😣 I don’t qualify for FLMA or have leave to burn. )

    I did call my dr to see what they say for the symptoms and recommendation to help.

    😑 After my heart rate has been there for an hour with continuous chest pain, my manager and I agreed I should go home.

    My dr’s assistance say if it is uncomfortable or worrisome to go to urgent care. Urgent care along with having a 2 hour wait, says the dr will advise to go to the ER.

    I say screw it. I go home and take an extra
    Prazosin (#PTSD ) and just lay down. After 2 hours, my heart rate is now at 116bpm. It’s going to be a long day since modafinil has a 15hr half life and that’s how long the can last with the heart rate. 😠

    I feel so stupid. I don’t think I’ve ever done this. I’m a very visual person and normally can recognize my meds just by looking at them. >.>

    #ADHD #ADHDInGirls #Depression #IdiopathicHypersomnia #Medication #modafinil #EhlersDanlosSyndrome #adhdandsleep

    8 comments
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    Introducing Me

    Hi, strangers!

    Throughout the pandemic and any other time life becomes too hard to untangle, I've found myself drawn to writing, blogging, creating, and putting pen to paper. It helps me make sense of the million tabs in my brain, or at least throw them out into the universe so that someone, somewhere, with similar "browser history" might feel moderately less alone. Because sometimes that's all we need: a hint of hope, you know?

    I've been noncommittal with my personal blog recently and am having trouble with consistency as I wade through some recent grief, chronic/rare disease, mystery allergic reactions, and a lovely bouquet of mental health struggles... but despite that, I think it's worth making an attempt to jot down my thoughts every now and again. I love poetry. I love language in general -- in fact, I was a Spanish translator before Idiopathic Hypersomnia & medical debt inspired me to step back from corporate burnout. I now am self-employed as an artist & calligrapher. I love raising awareness for mental health & teaching people about self-care more than anything! It was a concept that wasn't introduced to me until I ended up in intensive eating disorder treatment back in 2012. I don't think ANYONE should have to hit rock bottom before learning to love themselves, so I've made it my mission (when my health cooperates) to make the lessons I learned about self-care ACCESSIBLE to more people.

    I look forward to meeting some fellow recovery warriors, survivors, spoonies, self-taught entrepreneurs, and fellow fighters trying to find some way to shine our light gently despite the chaos around us. xo

    #ChronicIllness #MentalHealth #introduction #MightyTogether #TheMighty #selfcare #EDrecovery #mentalhealthadvocate #RareDisease #Hypersomnia #Entrepreneurship #Selflove #Healing #Allergies #journalcommunity #Writers

    11 comments
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    Again...

    I just found this group today... I’ve not been diagnosed with IH... I have depression and anxiety and have been on medication for over 10 years... I’ve read a lot of the stories and did some research and IH describes me scary accurate. I’ll bring it up to my doctor next time...

    So today I slept in, again. I slept through my 6 alarms somehow pressing snooze 20 times and still not waking up... I have to wake up my kids for school we now have 20 minutes to be ready and out the door... it’s impossible, they will be late, again.
    All I want to do is sleep.

    I have to go and get my prescription filled, again.
    I have to get dressed. Get in the car. Drive 10 minutes, sit and wait for the doctor. Get my prescription. Wait 15 mins for it to be filled. I’ll go to the store and pick up the things I’ve been putting off getting because I’m so tired...
    All I want to do is sleep

    Finally I’m home! I can nap. How many hours do I have before I have to go get my kids from school?
    3.5 hours... that’s not enough sleep...
    I have to go to bed now... the dogs need to go out.
    All I want to do is sleep

    Alarm goes off... I hear it but can’t open my eyes... I’m I awake? No. I can still hear my alarm...
    what time is it?
    Shit! I’m late! Again!

    Got to hurry! They are waiting for me!
    What’s for dinner? I don’t know because I slept all day... I’m so tired.
    Quick figure dinner out...
    Cook.
    Homework.
    Baths
    Bed... thank god
    I’m so tired...

    Laundry hasn’t been flooded in a week...
    tomorrow... I’m just so tired...
    Bed.
    Because all I want to do is sleep...

    #IdiopathicHypersomnia #Depression #Anxiety

    1 comment
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    Sometimes I wish people would underestimate me.

    In a time when the main message surrounding people with disabilities is to not assume anything about ability based on how someone looks, it seems (to me at least) like most of that message in the more public mainstream media is to not underestimate people with more visible disabilities. But as a young and very healthy-looking person who is not at all as capable as I look, I often find myself really wishing people would underestimate me.

    To look at me, no-one would think know that I can’t stay awake or upright without 5+ medications; that I can’t stand next to a stove or oven for more than a couple of second; that crowded public transport is a living hell; that walking, moving, thinking, and generally functioning can all be very difficult and degree of difficulty can change seemingly at random at my body’s will; or that I spend the vast majority of my time recliner in the corner of my couch. Those perceptions make it so hard to say no when I need to or explain my situation to people. Sometimes I just really want to be underestimated so I can prove someone wrong rather than always feeling like I’m not “living up to my potential“ or whatever.

    I know “please underestimate me” isn’t the message that many people with visible disabilities want to have out there (and for good reason; I’m aware of the history there!) and I know people with visible disabilities face a lot of stigma and frustration, but sometimes I really wish my conditions were more visible. Maybe it would help me feel less guilty about not being able to do things that I “should” be able to do.

    I mean ideally no-one would have set expectations of anyone based on appearance either way but that is not the world we live in at the moment.

    Just some thoughts.

    #InvisibleIllness #InvisibleDisability #ChronicIllness #HEDS #FunctionalNeurologicalDisorder #Migraine #IdiopathicHypersomnia #Narcolepsy #EhlersDanlosSyndrome

    4 comments