Narcolepsy

Hi. Here's my deal:
#ThoracicOutletSyndrome #HypermobileTypeEDS #PosturalOrthostaticTachycardiaSyndrome #CervicalSpondylosis #Scoliosis #Tendonitis #EustachianTubeDysfunction #Asthma #Allergies #ChronicMigraines #Narcolepsy #ARFID #ObsessiveCompulsiveDisorder #ADHD #Autism #Anxiety #PersistentDepressiveDisorder

Hi, my name is SharonVecchio. I'm here because I have Narcolepsy

#MightyTogether

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