Idiopathic Hypersomnia

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!

#IdiopathicHypersomnia

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)

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

#MightyTogether #IdiopathicHypersomnia

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..

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

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.

#IdiopathicHypersomnia

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