Seven years ago I was diagnosed with brainstem seizures which are very uncommon, especially in humans. It took 2 years of traveling around to specialists and large medical clinics to finally get that diagnosis. I was trying to go to college full-time with a biology major on the path to becoming a Veterinarian and a minor I hadn’t fully decided on, German being a huge interest of mine. I had also been elected president of one of the largest organizations at my university. I had a part time job and was volunteering at the local animal shelter and vet offices. With all of the doctor appointments I missed a lot of class, meetings, important events. In the end I had to drop out of college and cannot continue my education until I pay thousands of dollars.
My world had been flipped upside down and backwards.
Just last week my world was sent into a tailspin. I found out that I do not have seizures at all, I have narcolepsy with cataplexy. I am so confused and somewhat frightened. I don’t know anything about narcolepsy and how to deal with it, how to change my life. One thing I am certain of is that my rescue dog has been a narcolepsy dog this whole time, not a seizure dog.
I was diagnosed with major depression and anxiety when I was 8 years old. I know that I have these, regardless of the narcolepsy but I have started to question how much has been the narcolepsy this whole time. I am 26 and still trying to figure everything out. By now I had planned on being a Veterinarian at the clinic I started in (I had a job guarantee there once I got my degree when I was just a Junior in high school.)
Does anyone know of any good in depth reliably sourced books on narcolepsy? All I can seem to find is the same information everywhere. The general overview blah blah blah. I need to learn everything I can about narcolepsy in order to come to terms with my new diagnosis and figure out what I need to do to overcome this barrier in my life. I have overcome barriers that are very difficult to deal with in general, let alone a very small very closed minded community that covers tens of counties. This should be far easier but is somehow more confusing than being a lesbian. I never thought anything could be more confusing and difficult to understand.
I really need some advice and good resources. I wish there was a support group anywhere near me so it would be easier to have a group of people, friends, who also have this disease.
) I also have chronic migraines and the new one is “MAV” ( migraine associated vertigo) lol that’s a lot of fun. But any way back to the narcolepsy side of me. I don’t just fall asleep, I get a warning and then can hear everything around me for about10-15 min’s. I just can’t respond to you in that time frame cause I deal with paralysis. For me I write what I feel. Also if need I step away from anything that starts making me feel that I need to sleep. And I think about what happened that made me feel that way. So, if I can next time I will change something with the issue. To make it where It’s not setting off my narcolepsy. I hope this helps you.