Welcome! Please Introduce Yourself

Hello! My name is Shelley. I was diagnosed with Idiopathic Hypersomnia last week. I have always struggled to feel “awake”. Even in my teenage years I was always the one that would fall asleep at random, such as in a concert, driving, during my classes at school, etc. In my mid twenties, I finally was referred for a sleep study. The first study they told me I had sleep apnea and put me on a CPAP, this did not fix my extreme sleepiness so a year later they did another PSG followed by a MSLT. They determined I did not have sleep apnea and the test results came back inconclusive for Narcolepsy. I was supposed to do another study but encountered some significant life changes, moved out of state and didn’t undergo another sleep study for 10 years. That PSG and MSLT came back showing alpha wave intrusions, no apneas, and MSLT latency was at 11 minutes so I was diagnosed with mild hypersomnia and placed on Ritalin and advised to follow up to determine if I had autoimmune pain conditions.

I spent years working with specialists and learned that I have Anklyosing Spondylitis, Psoriatic Arthritis, Raynaud’s, and secondary to the autoimmune diseases, I developed Fibromyalgia. As the years have progressed my ability to remain awake or fully coherent declined. I found myself functioning in “autopilot” more often than not, unable to remember conversations, my notes wouldn’t make sense and I was talking about random things, like red high heel shoes, cooking dinner, and vacations, in meetings while directing staff on handling complex labor issues. This led to another PSG that revealed delayed REM and not hitting slow wave sleep, no sleep apnea. No one locally could help me figure out what was wrong so after referrals I finally landed at UC Davis for help. The latest PSG showed again, delayed REM, insufficient slow wave sleep, alpha wave intrusions, no sleep apnea so they kept me the following day for an MSLT which revealed a mean sleep latency of 3.1 which is apparently pretty bad and a diagnosis of idiopathic hypersomnia. I received a call from the doctor reviewing my studies to share the findings and explain what I should anticipate in my follow up which is to happen on 9/22. He told me I will need medication to improve my sleep architecture and possibly change my daytime medication because I still fall asleep taking Modafinil.

I have a lot of medical struggles that I am working through and unfortunately, I am not working because I cannot function well enough to do so.

I spent years building my career to an Executive level HR, Risk Management and general Administrative professional to see it all end and now I barely function well enough to be a house wife! Haha, it has been a really hard year full of change.

Outside of all this medical fun, I am a momma to two wonderful young adults; I have a mastiff and two kitties to keep me company while my husband is at work; I love camping, fishing and hiking (when I can physically handle it); spending time with family and friends; I hope to take up golf; and I enjoy putting puzzles together or playing board games when I can’t physically get outdoors.

Pretty unexciting st this time and I am looking forward to learning more about IH, and learning from others good ways to cope and regain some normalcy to my life.

Howdy!

My name is Annelies. (aw-nuh-lee-ss)
I am 24 turning 25 this year in November.
I was diagnosed with IH January of 2025. I’ve battled with sleep doctors and treatment since around 2019 or so since I was struggling with sleep in high school. Specifically waking up and having sleep paralysis in the mornings before school.

I took an MSLT on my birthday 2024 which lead to me learning my diagnoses in January of 2025. I lost my long term job the following May partly due to my sleep issues.

I suppose I wanted to find people to talk to about this disorder. I’ve been struggling a lot with trying to accomplish college alongside relationships and the idea of a job. This is my third attempt of college and soon I will be transferring from community college to university in the spring of 2027.

I’m honestly quite nervous, since I have struggled with staying awake in classes and even staying awake driving. I’ve had many a close call with fatigue behind the wheel and pulled over quite a bit since not much seems to help once I’m tired.

I’ve been a guinea pig testing 5 different medications to help with my disorder but none have worked long term. (Some didn’t work at all)

I’ve been battling depression and anxiety for much longer than my sleep disorder, but I know that they have coincided with each other a lot especially as of lately.

I could make a whole thread of all my experiences and struggles I have had with IH, but this is a welcome channel so I just wanted to share a little of my story before dumping everything else haha!

Other little tid bits about me:
Texan born and raised
Scorpio (11/11)
I have a cat (tuxedo boy named Addy!)
I love gaming
Huge BTS and Kpop fan (seeing BTS in August!)
I’m pursuing a degree in education (including a goal to shape curriculum and programs both statewide and nationwide to help with our education crisis!)
I love the ocean, dinosaurs, dragons, and anime as well.

I’m a bit of a nerd I suppose you could say? And I’ve always been unapologetically me. Even if I cringe later or get embarrassed at times. I tend to talk a lot as a chatterbox, so I hope to be more active here.

I look forward to chatting with you all over time.

Hi

What about NORD? What is it?