Idiopathic Hypersomnia

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Idiopathic Hypersomnia
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    Diagnosis question

    Hello. Has anyone received an IH diagnosis with a sleep latency greater than 8 minutes? I am 44 years old and have struggled with restless sleep and daytime sleepiness most of my life. I have used a CPAP for 2 years which shows successful treatment of apnea but still can’t wake up in the morning (even with 2 alarms) and am tired all day. I’ve spent years trying different treatments, including medications to promote sleep or to energize in the morning, natural remedies, and lifestyle habits. I finally found information about IH and thought I finally found what perfectly described my symptoms. However, I was told that to receive that diagnosis, I had to fall asleep within 8 minutes on average across 5 controlled naps. I averaged 17 minutes. Despite my symptoms having an exact match to everything, I can’t be diagnosed because it takes me longer to fall asleep. That’s also a requirement my insurance stated in order to approve coverage for xywav. Has anyone had a similar experience? I feel helpless after another failed attempt to solve my problems and would love to hear thoughts from the community. Thanks!



    I’m new here!

    Hi, my name is InaFog. I'm here because I recently started taking xywav for idiopathic hypersomnia and looking to connect with others who have similar experiences.

    #MightyTogether #Anxiety #Depression #ADHD #Hypersomnia #sleep-WakeDisorders #RapidEyeMovementSleepBehaviorDisorder #IntellectualDisabilities #polycysticovarysyndrome(PCOS)

    2 reactions 1 comment

    I'm new here!

    Hi, my name is jaygam. I'm here because I can fall asleep anytime, anywhere

    #MightyTogether #IdiopathicHypersomnia

    1 reaction 1 comment

    I'm new here!

    Hi, my name is Sleepinglifeaway1971. I'm here ..As a rare 3% of our world...since a medical accident whilst in the womb..causing hydrocephalus l experience leading to developing idiopathic hypersomnia with delayed sleep phaseI.
    Sleeping 15-18hrs per day yet always having jet lag so to speak..


    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

    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.


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


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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


    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