Diagnosis delays
Were you misdiagnosed as another health condition first? How long did it take you to get diagnosed with narcolepsy?
6 months
Welcome to the community,
. I am glad you found us. That must have been a frustating six months. Do you might be asking what you were misdiagnosed with and how you finally got an accurate diagnosis? Best wishes. - Lori (Team Member)
Yes I was! I was given medication for depression that made me feel worse. Symptoms started at age 18 and wasn’t diagnosed until 45. My ex husband would make this crazy face at me when he made me sad or angry. It was cataplexy I couldn’t feel.
Hi
. Sadly, you are not alone in being diagnosed with depression when fatigue or sleepiness are among your symptoms. That is a common misdiagnosis for people with chronic health conditions. I am glad you finally got the treatment you need and deserve and that you are so willing to share your experiences with the community. Warm wishes. - Lori (Team Member)
Asthma
That must have been very frustrating,
. How did your doctors try to make the connection between narcolepsy symptoms and asthma? It seems like quite a stretch. Did it take long to get an accurate diagnosis? Wishing you the best. - Lori (Team Member)
I am 55 and have just been diagnosed with the help of a sleep study and my ENT. I’ve gone YEARS always feeling tired. I’ve spoken with my PCP who stated it was a vitamin deficiency or thyroid issue. Those items were addressed and the fatigue was still overbearing. I remember sleeping in school and waiting until school was over to go home and nap. I remember falling asleep in movie theaters and while watching TV but always felt it was the material I was watching that wasn’t stimulating enough. I felt different and lazy. My ENT has given me hope. Though I’m on 25 mg of adderral ER, I’m still exhausted. My ENT has recently started me on Sunosi 75 mg. and I’m having no success. The stigma of the disease is concerning and the thought of potentially being on stimulants for the rest of my life is unsettling. Has anyone else experienced these thoughts and feelings? Has anyone had success with Sunosi?
Hi
, thank you for sharing. I'm so glad to hear that your ENT has given you hope throughout this diagnosis journey! Hopefully, some of our community members will chime in about their experiences with stimulants but in the meantime, here is an article that you might find helpful: https://narcolepsy.sleep-disorders.net/stimulants. Wishing you all the best, Allison (Team Member)
