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Living with Narcolepsy

New to narcolepsy, confused


#1

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.


#2

Narcolepsy can be confusing. Because it’s different for all of us. We deal with some of the same things. But for each of us it’s a little different. See like for me. I have narcolepsy (Oh Yeah go Me :wink: ) 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.


#3

Hi there,
I first heard the word Narcolepsy over 24 years ago, found out 20 years ago I had it for defo, been on meds every since. Most people back then had never even heard of it, even in the medical world, I was blessed my GP kept on at the medical council as they even said No way a 19 year old could have it. Even to this day people say “Oh why dont you just go to bed earlier” “Yeah ok don’t you think I may have tried that” is my polite reply. It’s been hard in lots of ways, but over the years more people are aware of it.
Funny thing is its only this week I finally joined this group. What would you like to know? Thing’s that have helped and not? Things I wished I had done different looking back?? Let my know and I will try and help you understand as best I can, but we are all different in how it affects us.
As I said to a Thompson Tour Rep that was trying to take my kid off for been unfit coz she thought I was drunk ( that’s a book on its own)" Do not tell me about Narcolepsy sweetie when Im living it"
Hope to hear back from you


#4

I found that Google Scholar has a great deal of good information that would meet the level of information I think you are looking for You can find the research findings from past studies to the most current.