Narcolepsy

I'm not sure what to expect. I just downloaded the app and joined a few groups. I'm 40. I have two kids. I have narcolepsy, Hashimoto's disease and lupus. I also deal with PTSD and depression. I was burned on about 40 percent of my body several years ago and that causes some issues still. I deal with pain from my health problems. I also had my tailbone removed about 2 years ago due to it being broke. Although it made some activities more bearable, I now suffer from daily pain. Mentally I feel really sad yet angry and so alone. All my family lives in another state. I love my mom but I don't really talk to her much about things. I don't really have that mother/daughter connection with her. I also don't have any friends. I thought it was hard making friends as a kid but that was a cakewalk compared to making friends as an adult. I honestly don't know what to do with myself anymore. My 18 year old daughter has high functioning autism but a lot of anxiety. I try to be there for her and help her. I constantly give her positive words of encouragement and be supportive. I feel like I'm alone though. I'm not really affectionate towards my boyfriend anymore and I don't know why. I want to but it's like something holding me back. I guess I hope that maybe I'll make some friends on here or at least find people who truly understand how I'm feeling. Thank you for taking the time to read this. #Depression #Narcolepsy #MentalHealth #Lupus #Anxiety

Hi, I am 25 years old and am looking for a support group mostly focused around dealing with chronic pain. I was diagnosed with anxiety and depression at 15. Since I turned 22 my health has gone down hill. I got diagnosed with narcolepsy, carpel tunnel, chronic migraines, fibromyalgia, small fiber neuropathy, and chronic pain. In the spring of 2026 I had to quick my job and lost my insurance. I live with my partner of 4 years who is now supporting me.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #Narcolepsy #ThyroidDisease #ChronicPain #self-harm

Hi, my name is Circe73. I'm looking for

#MightyTogether #PTSD #SchizoaffectiveDisorder #Schizophrenia #Narcolepsy

Hi, my name is skyzalemmett. I'm here because I would love to learn more about what I've been living with for most of my life and/or have been diagnosed with . I have multiple diagnoses, and sometimes they can be hard to navigate. I'm looking for support, education, knowledge, wisdom, and ways to manage my illnesses while still taking time to do what I love.

#MightyTogether #AutismSpectrumDisorder #Depression #Anxiety #SchizoaffectiveDisorder #BorderlinePersonalityDisorder #Narcolepsy #EatingDisorder #ADHD #ComplexPosttraumaticStressDisorder #Grief #Migraine #FunctionalNeurologicalDisorder

Hi, my name is mindyb782. I've been diagnosed with hEDS, POTs, C-PTSD, PTSD, severe depression, ADHD, narcolepsy, craniocervical instability, degenerative disc disease, hip dysplasia, gastroparesis and a lot more. Trying to figure out disability. My daily pain is beginning to be unbearable and I'm newly sober

#MightyTogether #Anxiety #Depression #EhlersDanlosSyndrome #ADHD #Grief #POTS

After talking with my sleep doctor regarding my narcolepsy (see my last post), I got prescribed Adderall instead of Modafinil. My mind is actually quiet now! I know there's a "honeymoon period" and that the long-term feeling won't be this drastic, but this is wonderful for right now.

I'm AuDHD and have never been on anything for the ADHD part of that, so this is totally new to me. Thanks for the previous comments on my last post about Adderall so I knew that was an option to bring up with my sleep doctor.

Another piece of the puzzle that is my health unlocked.#audhd #Narcolepsy

I'm not sure what's going on and it's scaring me and my husband. I have a variety of chronic conditions, including sleep apnea, autism, and ADHD. During the last year or so, a new symptom or condition has started presenting itself. I'll try to describe it as best I can and hopefully someone will recognize what it is, or have some ideas as to what it might be, because the doctors I've talked with think it's narcolepsy but aren't sure about that, either.

It usually happens when I'm sitting still for long periods of time, like reading things on the internet, playing computer games, or watching tv, but not always. All of a sudden, I jolt "back to consciousness" or "awake" and I have no clue that there's any lost time. I put those in quotes, because idk if I really lose consciousness or fall asleep. My smartwatch thinks I fall asleep during these times.

When I come back to myself, I have a cottony feeling in my mouth like I've been asleep, I jolt back (like muscles physically jump a little), and my mind races to figure out why. I see that it's not the time I thought it was and sometimes I'm on a different website, part of an e-book, tv program, etc. I'm disoriented and have trouble thinking, like I just woke up suddenly.

During the time I'm "out", my husband says I look like I fall asleep suddenly and am unresponsive. Sometimes I snore. Often, I fall forward or lean to the side somewhat.

Sometimes, I can feel it starting, like a dark curtain getting pulled tight around my eyes and sometimes around my other senses. Usually, though, it just starts suddenly and I don't seem to have any warning about it.

Does this sound familiar to anyone? I'm willing to answer questions about it, so please post if you have any ideas! Yes, I understand that nothing on here can be construed to be diagnosing, but it will at least give me a direction to ask doctors about to rule-in or rule-out things.

I have had sleep and awake problems for at least six months along with cognitive bracket fog bracket. I’m looking for a narcolepsy doctor specialist on Long Island familiar with adult onset narcolepsy or IH. I don’t want to waste my time speaking to somebody who only does a few pediatric patients or even only a few adults. I want to speak to a Dr. that knows about all the research etc. Thanks