Diagnosis delays

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?

I was diagnosed at the age of 27 and I believe my symptoms began at the age of 15 so there is quite a gap but luckily (or unluckily) I never received a misdiagnosis only because I never went to the doctor because I simply ignored my symptoms for so long. By the time I went to the doctor I already knew what I had as I researched so much. It w as good because I went there already knowing what I had to tell the doctor. I was also extremely lucky because my family were able to send me directly to a private clinic that especialized in sleep disorders. Take care! Iris xxx

My narcolepsy wasn't diagnosed until I was 35 and half way through a PhD program. Looking back I realized I had it from around 8 or 9 years old. I was first diagnosed with depression and anxiety and dissociative disorder when I was 21. I did years of psychotherapy as my condition worsened. In fact, working through psychological issues in therapy brought on cataplexy so intense it often kept me in bed for a day after a therapy session. I also know that my sleep attacks, which the therapist observed during sessions, looked dissociative. Later I started to think I had an addiction to sleep. I did encounter a university psychiatrist at one point who said he thought I might have a sleep disorder but nothing came of his observation. Years passed and saw another university psychiatrist. For him I drew a graph of what happens to me when I get really happy. It was a line that slowly curved upward and then dropped directly down. He finally sent me to a sleep specialist to rule out a diagnosis of bipolar disorder, I know now that it was cataplexy. I guess he thought my graph looked like a manic episode. The sleep specialist knew during an in-office interview that I had narcolepsy with cataplexy. The MSLT confirmed it. I finally had a diagnosis. It was not controlled until I got on XYREM when I was 49. I have been taking it ever since and when XYWAV came available to me I switched to that. It was a long journey to a diagnosis so once I understood what I had I was actually happy and relieved to know. Thanks for reading through this journey, it helps to share my story. Peg Whalen

My symptoms started at 17, but I didn’t really think anything of it until I was in my 20s. I saw my primary care provider about tiredness a couple times in my early 20s, but when my bloodwork was normal, I assumed nothing was actually wrong and that my tiredness was normal. When I was 24 and in grad school, I was put on probation because I kept showing up late for class (because I couldn’t wake up in the morning), falling asleep in class, and falling asleep on my clinical rotations. I also started getting new symptoms at that time which really worried me - I thought I had a brain tumor or MS. That’s when I was finally convinced that something was medically wrong with me and started being persistent about getting a diagnosis and treatment. First I was diagnosed with anxiety, then depression, then anxiety again. Eventually I was referred to a psychiatrist who, after one appointment with her, thought I had narcolepsy and referred me for a sleep study and I was finally diagnosed. So, in summary, I was diagnosed 7 years after my symptoms started, but it was only about 12 months or so after I actually started to worry about my symptoms and persistently pursue medical intervention until I was diagnosed.