Welcome! Please Introduce Yourself
Welcome to our community! We’d love to learn a little about what has brought you here. Share as much or as little as you'd like.
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.
Welcome, Annelies, and thanks for sharing the photo of Addy! What an adorable cat with unique coloring. He looks almost brownish-red in this photo. Thanks for brightening my day!
I wish you'd landed on a treatment that helps, but I'm glad you're not giving on on finding something that works or college. Imagine what kind of impact you might have as a teacher who truly understands how chronic health conditions can impact learning.
Relationships can be really difficult for anyone with a sleep disorder, but I'm guessing you are at least weeding out those who would not be there for you in a time of medical crisis if you hadn't had I-H. Too often, people don't learn about that side of their partners until they are super invested in the relationship, a crisis hits and the partner bails. I hope you find someone who will remain at your side in ways that are loving and supportive no matter what life throws at you.
This article is from our narcolepsy community, but I thought you might find it helpful: https://narcolepsy.sleep-disorders.net/living/dating-difficult. Many of the same issues apply to people with IH.
I hope future treatment for I-H helps alleviate your depression as well. I'd love to hear more about the treatments you've tried and the ideas your doctors have for future treatment. New medications and therapies are always in development. Hopefully, something will come along soon that makes a huge difference for you.
Meanwhile, please know we're here for you whenever you need us.
I previous taught as an adjunct in a four-year college. I'm guessing you had IEPs or other formal accomodations in community college, but the atmosphere can be a bit less personal on the four-year level. It was made clear to us that we were not legally allowed to ask students about potential health conditions, to recommend any action (IEPs, counseling, etc.) or to discuss their conditions unless they initiated the discussion.
So, I hope you feel comfortable opening up to your professors about your condition and advocating for yourself if they don't properly accomodate you. You deserve an educations and society needs more teachers like you.
Best wishes. - Lori (Team Member)
Hi
Hi
. Welcome to the community! Have you been diagnosed long or do you suspect you have idiopathic hypersomnia? Feel free to reach out if you need help navigating the community. Warm wishes. - Lori (Team Member)
What about NORD? What is it?
Hi
. NORD is the National Organization for Rare Disorders. They have a patient assistance program that can help cover medications for those who qualify. Here is a link: https://rarediseases.org/patient-assistance-programs/. I hope this helps. - Lori (Team Member)
Hi everyone! I am looking forward to this IH-specific community.
I was diagnosed in 2023 after 20+ years of living with IH symptoms. I eventually lost my corporate job a few months later, having been out on sick leave too long without a doctor who could help me manage my symptoms.
My mom, an OB/GYN who had to retired early due to her IH symptoms (and other comorbidities), was originally diagnosed with narcolepsy type 2 in the early 2000a (and, later, diagnosed with IH for years, and then about 2 years ago had a negative MSLT, so currently has "no diagnosis" -- and no treatment plan).
I am hoping to continue learning about how life can still be a joy, how to deal with the fried associated with the loss of aspects of myself, and how to speak for and with others about hypersomnolence as an invisible condition.
Thanks!Thanks, welcome! Appreciate you sharing your story. I am so glad that you finally got a diagnosis after such a long stretch. I imagine it was a relief to know what specifically was ailing you after 2 decades. This community is here from you - if you ever have any specific questions, happy to help. I am wishing you some support as well related to the job loss as well.
Warmly,
Reggie, Idiopathic-hypersomnia.net team member
