Idiopathic Hypersomnia

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Idiopathic Hypersomnia
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#ADHD #Relationships #Family

My name is Brenda. I have ADHD, fibromyalgia and idiopathic hypersomnia. The two latter conditions make the ADHD worse. I have major problems with my two of my DILs because of symptoms from ADHD. Those being interrupting people and not being able to stay focused in a conversation. Something distracts me and I am no longer listening to the person who was talking to me. I don’t realize that I am doing it. Nor do I realize when I am interrupting them.

If I tell them that those things are symptoms of the ADHD, they just think that I am making excuses. I have been trying really hard to remind myself before I am with family to try to be aware of these things. However, I rarely even realize when I am doing those things. My relationships are getting so strained to the point where even my eight year old granddaughter is picking up on her mother’s dislike of me. That just breaks my heart. I am at a loss for what to do. It makes me sad. Anyway, that’s where I am at.

9 reactions 4 comments

How is the process to get diagnosed?

i’ve been sleepy my whole life according to my family. i can sleep through anything regardless of the time. my naps are 3-6 hours and if given the opportunity i’m able to sleep 10-14 hours at night (but i often only get 8 because of work during the weekdays).

lately i’ve been falling asleep at work and while driving. i’m getting worried i may crash one of these days.

i’m a little nervous about the process to get diagnosed. is it hard? does it take a long time? will they brush me off just because i have depression?

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I'm new here!

Hi, my name is AJ_tina. I'm here because my daughter relates most strongly to the description of idiopathic hypersomnia. She is sleeping her life away and she needs help. Medication does not help. How do those with this diagnosis manage to have lives and careers? She can barely stay out of bed.

#MightyTogether #IdiopathicHypersomnia

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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)

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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.