Idiopathic Hypersomnia

Hi, my name is Jessye632. I've been diagnosed with Major Depressive Disorder, Anxiety Disorder, Chronic Pain (Total body pain and burning pain sensation), Chronic Fatigue Syndrome, Idiopathic Hypersomnia, and Fibromyalgia (total body pain and burning pain sensation). I have struggled with depression and anxiety (undiagnosed) since I was a teenager. I have been struggling over the past two decades with depression, anxiety, and suicidal thoughts. I struggle with just trying to make it through the day.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #Grief

Hi, my name is Nicolepiersonpik. I'm here because

#MightyTogether #Fibromyalgia #ADHD #Endometriosis #IdiopathicHypersomnia

Hello everyone! So glad to have found this group and hoping for support. There is so much background to my situation but I will try to not write a book.
As I said I have been married for 42 1/2 years to a man who has anger issues, power and control issues and is “always right.”
We went through an intense 6 months group recovery half way through the marriage and had a few good years before he went back to his old ways. Admittedly I did too somewhat.
The basics of the relationship is that he will get mean and raise his voice and use condisending words that makes me feel like he can barely stand me.
Whenever I ask him a question about something, he will get defensive even if I just simply asked for information.
When I try to stick up for myself in situations where he has yelled at me, he just defends himself and/or points out why I am wrong. My m.o. has been to argue back but that just makes me feel worse. Nothing is ever resolved. He never admits when he is wrong and therefore never apologizes.
If I try to process something that he did that really hurt me, it takes a couple of days or even a week or so. When I bring it back up, he said “that happened X days ago. Why are you bringing it back up?”
I have health issues. The main 2 being idiopathic hypersomnia and fibromyalgia. The stress from our relationship was getting so bad that I was spending 3-4 months at a time sleeping all the time and gradually getting out of it. This was happening every few months. The last one I had, I was so depressed that I realized I needed to get back into counseling to help me deal with my situation. My counselor is great and uses a new approach to healing trauma that most do not even know about. I honestly don’t know what I would do without her. Yet my husband said that she is too expensive because I have to pay out of pocket. Reluctantly I got an additional counselor through our insurance but she only addresses issues and not how the trauma and my self beliefs come into play. I still see my previous counselor because she knows my history and also is able to use the technique that addresses the trauma as well. My husband still doesn’t want to pay for her. He took money out of our joint account and started his own. He makes way more money than I do. I am on disability. So now I have to ask him to cover certain things. It’s a mess.
It is also part of his power and control issues.
My husband only sees from his point of view and believes that it is the right one so why listen to my point of view. I have tried so many different approaches throughout the years and nothing works. I know that I am wasting my time, words and mental energy trying to address issues between us. One of my issues is that I “need to be understood.” (I really don’t but…) So I over explain or repeat things to try to get him or anyone else to understand where I am coming from. I am working on stopping this behavior. It is so hard when someone hurts you deeply and continually. I want to stand up for myself but not expect anything in return.
I am so tired of living this life with him. When he knows that I am upset with him he just tries hard to do things that he thinks will please me. I often end up playing into that because I hate feeling so lonely and unloved. Then round and round we go. Like I said, I am working with my counselor to get out of that cycle by healing the wounded parts of me and my wrong beliefs from them.
The reasons why I won’t leave are: leaving will most likely not change him and it will become permanent; if I am the one to leave the house it is considered abandonment in my state and he can do whatever he wants with the stuff in the house; and the good insurance that we have requires that we live together in order for me to stay covered. Lastly, after much prayer I have not felt peace about leaving.
Right now I am at a friend’s house doggy sitting and it is so peaceful and quiet. I love it. When I go to Florida to visit my mom, sister and other family and friends, it is like I get to experience my true self.
So, I hope that there is someone who can relate to my story. We all need comrades to help us through life, especially when it is difficult. I am also a believer in Jesus Christ. The Bible has breathed so much life into me during this time.

#ADHD #Relationships #Family

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.

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?
#IdiopathicHypersomnia

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

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)