Does anyone else feel helpless?
For a quick backstory-I've been excessively tired for as long as I can remember. I have spent the last 6 years struggling to stay awake, and trying to have the same energy as everyone around me. I was constantly being told I was just "lazy" and my tiredness was all "mental" and "in my head". My friends would always get upset with me because I would not participate in activities with them, and never had a 'legit' excuse, other than I was simply just too tired.
It had been extremely hard, forcing myself to stay awake and doing things when my body felt as if it was being pushed to its limits. Not only was it difficult to maintain my social life, but even more difficult to complete school. I always felt as though something were wrong with me, because I noticed how much more I had to try in school compared to my peers.
Two weeks after I graduated college with my bachelors, I did a sleep study and was diagnosed with narcolepsy. After the diagnosis I was relieved to finally have an answer. I thought maybe now I would have the chance to feel like a normal person. However, the doctor told me the solution was to have better sleeping habits and if I wanted, I could take a medication that I would have to be on for the rest of my life.
I was a little discouraged, but hopeful towards the possibility of being able to experience not feeling tired for once in my life. I took the modafinil for 4-5 days, and nothing changed. I was still taking my 4 hour naps and sleeping 10+ hours at night. After waiting weeks for my doctor to finally contact me back, he just told me to try doubling the dose in the mornings. I did, and still there is no difference. I tried contacting my doctor again, and now I feel as though there is nothing I can do except wait to hear back.
Has anyone else had this experience after their diagnosis? Or feel as though it is almost impossible to speak with a doctor to get help with treatment, without having to wait months for the next appointment?
I can relate. Its hard work to educate and explaine what its all about. «Not you, you are always so active and on top of things. Are you sure you’ve got the right diagnosis? Try to sleep LESS- have you tried? Do you use NARCOTICS on a daily basis? Omg! No wonder you’re all confused- Get off the nasty drugs and try this….»the list goes on and on. Sigh.
However, this week our national press(Norway) shared the narcolepsy story of a very skilled athlete; our goal keeper of the National Norwegian female handball- team! I actually felt PROUD of having this sh*t-diagnosis in common with her! Hehe
But, really-we need to keep educating people around us. Stay strong you guys!! Open up, educate and share!
Heya! I know how you feel as when I was first diagnosed, my doctor put me on Modafinil and its effects only lasted about 2 months before I was completely back to how I was before. I think it's important to really make your doctor aware of what's happening and keep trying to get in contact as much as possible. Don't just wait for them to get back to you as sometimes, unfortunately, doctors have so many patients that they simply don't have time to get back to you. I hope things get better for you very soon! Take care, Iris xxx 
your journey to diagnosis sounds very similar to mine. I was also diagnosed about a year after graduating college. I actually thought I was going crazy because the hallucinations and sleep paralysis I was having.
Being diagnosed with a chronic illness always has its ups and downs. When I was diagnosed in 2018, I never would have guessed that narcolepsy was at the root of most of my "issues" (for lack of a better word) during my adolescents and young adulthood. My first suggestion is to find a doctor that truly listens and cares about what you have to say. Nothing will ever get better if you don't have a doctor to back you up. Second, give yourself grace. Yes, it is very overwhelming being told you have to take XYZ drugs for the rest of your life to feel "normal". However, as your doctor mentioned, there are other ways to combat your sleepiness.
The first few years of diagnosis can feel like an uphill battle at times, but remember you are not alone. I suggest reading the articles posted on this site to help learn more about this diagnosis and maybe even lift your spirits.
I hope you keep us updated as to how you're doing! Best of luck!
Xoxo/Zzz, Gabrielle (team member)
Hi
, thank you for sharing your story. It sounds like your journey with narcolepsy has been far from easy. I'm sure that many people in the community can definitely relate to the back & forth with doctors and the frustrating conversations with friends and family. Have you tried reaching out to another doctor? Best, Allison (Team Member)
