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Diagnosis delays

How long did it take you to get diagnosed with narcolepsy? Were you misdiagnosed as another health condition first?

  1. 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

    1. 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

      1. Thanks so much for sharing your story! I'm glad to hear it helps to share, it can be a real relief! I'm so sorry to hear about such a long road to diagnosis and those misdiagnosis for so long! It's very invalidating as well as anything! That sounds so distressing and awful what was happening as a result of the therapy. It makes sense I suppose that if you are working on things that evoke a lot of emotion, it would make your cataplexy worse! Did this last/ did you see any difference after the initial period of increased symptoms? It was so sad and familiar to read about this graph of emotions after being happy, curving downwards. Like you said, the emotion might happen then causes cataplexy and then the negative emotions that come with this! I'm so happy to hear though, that you found something that helped you in the end with your medications. I understand, after waiting so long it was a relief to me to know what was happening too! Wishing you all the best, sending support and lots of wakefulness! Lauren (Team Member)

    2. 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.

      1. It was definitely a huge relief to me that my brain MRI was normal. And while I’m so relieved it wasn’t something worse, it also felt very validating that there was actually something wrong and I wasn’t just “wimpier” about being tired than other people or “weaker” because I couldn’t stay awake like everyone else. It’s been 6 years now since I was diagnosed, and about 85% of the time, I am at peace that I have the correct diagnosis. But about 15% of the time, I still get health anxiety and worry that maybe they missed something (like are my symptoms actually from an undiagnosed blood sugar issue, am I having TIAs, etc). I don’t know if it’s common or not for people with narcolepsy to have increased health anxiety, but I definitely do. 😳

      2. I can't speak for other people with Narcolepsy, but I can speak for myself. My experience with Narcolepsy has increased my medical anxiety so much! Even more than an eye surgery I had to have at 18. I hope you are able to find some peace of mind in knowing that you are not alone in this. Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

    3. I had symptoms all my life but around 36yo I started having cataplexy attacks. So it took about 2 years after seeing a neurologist.

      1. I am sorry to hear that it took you two years of experiencing Cataplexy before you were able to get a Narcolepsy diagnosis. Sometimes healthcare professionals are not adequately trained in sleep medicine to recognize Narcolepsy symptoms, which is really unfortunate! I hope you were able to improve the severity of your condition with treatment. Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

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