Kinda feel like giving up
I was diagnosed with N1 about a year ago or so, had been working with a specialist afterward to find what medications worked for me.
My cataplexy started after a car crash, i already had narcolepsy symptoms since childhood, but not the cataplexy.
Im getting to my breaking point with the whole thing.
My specialist slapped me with probable N1 after my MLST testing because my testing was inconclusive but i have every symptom of cataplexy/narcolepsy.
Late last year things got worse, more things started to develop. And my specialist appointment (which was typically every 3-4 months) was pushed back a month. I had prepared a list of questions to ask because of my worsening symptoms. But when i was called by my specialist (OTP appointment) they basically just said theyre dropping me and referring me to start the whole process over again with a further away hospital.
My episodes have always been very long; ranging from 15 mins minimum and my longest was 3/4 hours long. But my condition was worsening over NZs hotter months. For some reason my episodes are triggered through getting too hot as well as the usual things. Which bewildered my specialist, but he didnt give me a chance to say that ive always struggled with regulating my temperature. And my episodes started to have what i can best describe as intermittent seizure spasms, which is extremely painful. And just added that onto the reasons why he was dropping me. I didnt even get to ask any of my questions either. He also heavily implied that its all because im depressed. Which is extremely stupid when they have my medical records which show I had/have been taking antidepressants for YEARS before the cataplexy started.
I feel so isolated as well, theyve asked me to stop driving which has stripped me from leaving home. Like ive genuinely developed agoraphobia because of this condition because i simply cannot afford the bill when i have an ambulance called on me by a concerned person when i have an episode in public. I have to rely on other people to go anywhere which makes me feel massively guilty because thats so inconvenient to the people i have to rely on. I spend everyday trapped at home trying to find a way to entertain myself through the day. And ive also started to have the hallucination thing where you see something in your peripheral vision thats not there, muscle spasms when falling asleep. And when i take the full dosage of modafinil i cant fall asleep at night, which is also silly because it doesnt even wake me up properly cause ill still be yawning and wanting to go to bed but i just simply cannot fall asleep.
Its been years and im definitely getting to my breaking point, especially because I’ve encountered so many people who try to say narcolepsy doesnt exist or all my problems would be solved through recreational drug use. I just really feel like a waste. I had been working part time since i was 11/12 and left school early to pursue fulltime work because school just wasnt for me. So spending the last few years unable to work or even get around alone has been so hard on me. Also i know someone will say it but i am genuinely not comfortable with taking the bus as i would not want to have an episode onboard, especially as the drivers here dont pay attention to passengers, so i could be in an episode until their service ends with how long my episodes last. I just yeah i dont know what to do anymore.
I read the referral letter my specialist wrote for the new hospital and i can just tell he never listened to anything i actually had to say as well which means im going to have to correct everything whenever that appointment comes..