Hi, I'm Maria, I'm 26 and I got diagnosed a couple months ago after about 14 years of having N.
My journey to this diagnosis was long.
It started with sudden sleepiness in class. It was so overwhelming that I didn't want to stop myself. I also had som small seizures (partial epileptic seizures I now know) which means I started missing a lot of information and my teachers gave me a hard time because they thought I simply wasn't paying attention.
4 years later the cataplexy started when I was frustrated, stressed out or competing and sometimes what seemed to be for no reason. At the same time I experienced sleep paralysis with hearing hallucinations. Usually footsteps, opening of doors or people talking.
I thought I was crazy!
2 years later I consulted my doctor. I didn't say anything about the sleep paralysis or hallucinations (because of the feeling of shame) but the sleepiness, lack of concentration, moodiness etc. made my doc believe it was depression.
After the first meeting (about half an hour) with a psychiatrist I was diagnosed with fear psychosis. Even without talking about the hallucinations. Years later that psychiatrist lost his license because of many years of misdiagnosing patients and making their lives miserable.
I was one of them.
On Abilify for over half a year. I was a living zombie, literally couldn't recall the feeling of joy, constantly wanting to end my life, suddenly afraid of a lot of things I was never afraid of before, more sleepy than ever. I experienced several partial seizures every single day and sleep paralysis several times every single night where before there used to be days between them.
I obviously didn't end my life and 2 years after the "treatment" I was almost back to normal. It feels like it took a small part of me I will never get back.
My life went on but I often failed to attent work, felt sleepy and simply lost all motivation. Well, at least I had my cataplexy under control.
I managed to finish a year of school after my work year ended. Then I got some kind of infection and didn't finish my second year (something similar to senior high I guess - I'm from a different country). I gave up because of severe muscle weakness, joint pain and a terrible cough.
I had swollen lymph nodes so my body was definitely fighting something.
Thanks to my experience with the psychiatrist mixed with the confusing symptoms of N and E, the doctors wanted me to immediately go to a clinic that treated people with health anxiety. Bacause I had "too many" symptoms they brushed them off as something I provoked.
For the first time I told my doctor about not being able to move my body when I woke up. The doctor's answer? "Get a better alarm clock".
Before going to that clinic I got better. The infection "thing" finally lost its grip on me and I decided not to go there. I had also had a really bad feeling about it.
I was now 22 and a friend of mine became more than a friend, we got married and moved away together. To a new doctor.
I had kind of accepted my condition as just being a part of who I am but my husband failed to understand me. I also had no driver license and I would probably need that soon why we went to see my new doctor. We had started talking about epilepsy as a possibility.
It was strange for me to experience talking to a doctor who actually believed me.
Unfortunately the first neurologist she referred me to said I was psychotic when I told him about the sleep paralysis. Off cause he had read my files. I didn't feel psychotic and none of my friends or family thought I was. He did diagnose me with classic migraines though. He then referred me to a different neurologist who knew more about epilepsy. In this neurologist's opinion I "had a lot". She sent me such an unpleasant smile. One that revealed that she didn't take me seriously at all.
Finally, when I was 23, she referred me to some experts on epilepsy. They turned out to also be experts on sleeping disorders.
For them epilepsy was an obvios reason for my symptoms and I got diagnosed at age 24 but they also suspected narcolepsy (which I knew very little about - "hey isn't that something where you suddenly fall asleep without warning??"). It turned out E was only a small part of it and most of my struggle was caused by N. After different tests and a lot of waiting I now, age 26, finally have the diagnosis narcolepsy and epilepsy.
Today my E is almost under control with medication, my knowlegde of N makes my "dream experiences" more bearable , I attend school online which makes it easier and less stressful, my husband and I have the perfect dream house and two little girls, people around me don't judge me anymore because they know what is wrong and all that I need now is a driver license.
Well, after all that I've been through I think the world is pretty wonderful now!