Confused and seeking support
After 30+ years of saying to my Doctors that I am tired all the time, and then being dismissed, I have finally seen a sleep specialist yesterday for a consult. For sub-context I do have a genetic disorder for Hypogonadotropic hypogonadism (my pituitary doesn't work) and hypothiroid issues (most likely due to the aforementioned, not autoimmune) which is finally back under control of an endocrinologist. My recent bloodwork came back showing everything is tip-top great. I asked if he was sure because I'm still so tired (at which point I was offered GLP-1s because lowing weight may increase my energy). I said no, but can I have a sleep study to exclude sleep apnoea and other suspected parasomnias. I was also recently (last year) diagnosed with ADHD.
Anyway, I say the sleep specialist yesterday who asked questions about sleep paralysis (yes) and hallucinations (I often get hypnopompic visual hallucinations and auditory hallucinations) - things I have thought were common, but apparently aren't so common afterall. I have vivid dreams (not that he asked) and a lot of them. I do have EDS but find I only physically feel like I am forced to sleep during times of inactivity (I have kept myself busy my entire life to avoid this) and ironically wanted to go to sleep in the waiting room before seeing the doctor. He concluded that I have 3/4 symptoms that suggest narcolepsy, and that ADHD is overdiagnosed and people probably have sleep disorders.
I left the appointment with 2 sleep studies - one for apnoea (1-2 month wait) and one for the MSLT (up to 12 month wait) and a feeling of validation (someone finally listened to me and told me it wasn't in my head), but also confusion (is it ADHD, narcolepsy or both?) and anger (why has not one listened to me in 30 years - what have I missed out on in my life because I just felt too tired to start it?).
I guess I'm just asking for support through this time, I hate waiting and is there something I can do to help myself in the meantime - and if I did would it stuff up the tests? Did you feel as confused as me? what helped you get through it?