Narcolepsy

I officially received a new diagnosis of narcolepsy today from a pulmonologist, but some of their advice for management is contrary to what my research recommends. So I have started searching for a neurologist who specializes in narcolepsy and pretty much every site can only come up with one name and it’s a doctor that I saw four years ago (for a duration of 2 years) who didn’t seem to believe me when I explained my fatigue so he never even ordered a sleep study. I’d rather be untreated than deal with this doctor again. It feels hopeless.

Hi, my name is jameM. I've been diagnosed with migraines, Narcolepsy and I am nursing a broken hip with a fractured pelvis

#MightyTogether #Depression #Migraine

Hi, my name is sweetgirl0424. I've been diagnosed with narcolepsy I was told to join this app because it’s very helpful!

#MightyTogether

My 12 yr son probably has narcolepsy....hasn't been officially diagnosed. I'm on the hunt for a safe format for him to connect with other kids who have narcolepsy that is also private but an adult is an admin to monitor. Facebook is a great format for adults to have private chat groups to share and ask questions but kids don't use Facebook. I'm not sure if Mighty has that type of capability for a private yet monitored group? I have access to moms on a Facebook group so I'm pretty sure I could gather a group of kids....

In 2019 I did a sleep test and they said I had mild sleep apnea and I was borderline for narcolepsy, but I didn’t have to treat them as neither was bad. It always sat in my head, but I didn’t really have narcolepsy so I didn’t think too much of it.
Flash forward a few years, my other health conditions got worse, I moved cities, and COVID happened. I forgot about it until my primary doctor brought it up. I found a new sleep doctor, did another sleep test.
This time, they said I don’t have sleep apnea, but I do have narcolepsy. I’m honestly a bit bummed out. With sleep apnea, there’s a solid treatment option. Narcolepsy can only be helped with some medications, and those only fix the symptoms. I don’t really want to start any new medications, I’m on so many already. I guess I’ll talk to my doctor about it at my next appointment.
Every other diagnosis has made me happy to finally have answers, but after #EhlersDanlosSyndrome #Gastroparesis #PosturalOrthostaticTachycardiaSyndrome and a few more, I’m so tired of incurable issues. Literally tired of it, get it, it’s a sleep disorder?
Anyways, I didn’t expect to find myself so bummed out by this. Especially since I’ve known it was possibility for years. But now I know what sleep disorder I really have.

Hi! I’m here to find new communities and share my experiences! #EhlersDanlosSyndrome #Gastroparesis #PosturalOrthostaticTachycardiaSyndrome #SupraventricularTachycardia #BilateralHearingLoss #Narcolepsy #ChronicMigraineSyndrome

my marriage is falling apart and my husband doesn't even realize it, despite me trying to talk through our issues. His thinking is too black and white, he works 24 /7 (and not because it's needed financially, but he lovex his job ) so we have no time for each other.

After working Majority of my life, I now stay home. I loved my job but left due to a combination of a toxic Work enviroment, two kids with special needs, and my own health issues.

My daughter, nine, has ASD, SPD, Anxiety, panic disorder, migraines, and a right aortic arch.

My son, three, has ASD, SPD, developmental delay, speech delay, motor delays, epilepsy, autoimmune neutropenia, RHOBTB2 syndrome and other chromosome anomalies.

Ihave Lupus, narcolepsy type I, fibromyalgia, MDD, CPTSD, GAD, Panic disorder, asthma, and all the comorbidities (i . e. Tremor, migraines, seizures, sun sensitivity, etc. )

My best friend moved across the country and ghosted me.

The one friend who ALWAYS replies +o me, won't.

I have two sisters, both thousands of miles away.
one has two kids, one being severly disabled, and a third on the way.
The other sister also has two kids and is in a mentallabusive relationship. she also doesn't believe in mental health.
I don't want to bother them with my Problems.

my mom is great, but turns everything about her.

This was my support
team and it's fallen apart.

There is a year waitlist for therapy in my area. I tried telehealth type therapy, but my phone is a big anxiety trigger, so it was less than effective, though I still use it for med management.

so what do I do now?

I can't even talk to my husband because he says my problems are too much of a burden on him on top of work.
my narcolepsy is uncontrolled because I can't take xyrem due to my husband refusing to go to bed before 4 am, Therefor I have to get up with the kids, take the youngest to ABA, etc
Lupus was my latest diagnosis... seven years ago. He still doesn't know what it is and doesn't understand "Why it even matters if he knows or not. "

I keep getting my mental health in a good place only for it to be destroyed.

I don't know what to do. I need help.

Hi, my name is Michelle79. I'm a divorced mom of 2 teens without a support system. I feel like I'm scrambling just to survive. I'm lost - I know that help is available but need help finding it. I'm dealing with all this while still trying to be the mom my kids deserve. My hope is I can gain knowledge, resources and validation that I'm not alone.

#MightyTogether #MultipleSclerosis #Scleroderma #Hypersomnia #PTSD #OCD #Anxiety #Narcolepsy

I had dinner out with a family member of mine from out of town, who I haven’t seen in over a year. But, #Narcolepsy didn’t want to miss out on the fun! The first part of this fancy dinner was me having back to back #Narcolepsy episodes, and I don’t even remember what happened or what was going on and even worse or possibly better, to my knowledge no one noticed! I’m so embarrassed and feel bad. I’ve never wanted to sob so hard in my life. It just took over this event and reminds me how much it consumes my life. I feel like I missed out on the whole event.