What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
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I will give a little bit of my history, so you will know where I am coming from.
_______________History optional to read_________________ I have just finished my BSc, with a double major in Molecular Biology and Chemistry. This was a huge struggle for me (and I have no idea how I did as well as I did), because I was sleeping all the time, and when I wasn't sleeping I had intense brain fog. There were weeks at a time that I would only be awake for a few hours a day, and I would only be able to do the minimal tasks required (showering and eating a little bit), I actually lost 25 lbs in one semester, not because I was fit, but because I slept instead of eating. With all of this mess, and going through several medication regimes, I got pretty depressed, because I have always been very ambitious academically, and I could not function or meet my own expectations. I had originally intended on going to med school (and I see many others here are succeeding in this process), but I wasn't ready for it this year. I had actually planned on taking this year off, but I was offered funding to do my MSc. I am now at McGill University, doing my MSc in Human Genetics. I know that I cannot do solely research for life, because I need more interaction with people to stay stimulated. After this degree, I plan to either go on to become a genetic counselor, or go to med school and become a medical geneticist. This leaves me the option to do both research and clinic work (and I am thinking of getting into narcolepsy research, but don't know if there are issues there with bias). ____________________________________________________ So I guess my question is this: I know narcolepsy gets worse in the first decade or two after symptoms first appear, so what is everyone's experience with this? Are there any preventative measures I can take? Or do I just need to stay on top of things in the moment, and hope for the best in the future? Also, how difficult is it to manage a family and career and everything in life with narcolepsy? Family is my number one priority in life. I want to make responsible wiht my decisions, and having an idea of how narcolepsy has progessed for others may help. I understand that it's different for everyone, but I am curious to see the range of progression within this group. Thanks everyone! Gillian xox ps. Sorry again for the long post. I find that now that I've started getting out some of my issues and concerns, more keep coming. Posted on 09/27/09, 10:09 am |
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As I mentioned in the other post...even though I had symptoms in my 20's I compensated pretty well for almost 2 decades. Like all the autoimmunes there may be a "typical" course but there is a great deal of variation. I have read that the EDS may alleviate after the second or 3rd decade of the disease so I am waiting and hoping for that!!! 
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I'm a little jealous. I've had a hard time completing my degree when my symptoms started around the age of 17/18 and got worse until I finally got to start treatment. I'll be finishing my BA this year and hopefully going to Graduate School next year. I'm planning to teach either secondary or post-secondary.
I think it affects people differently. You may never get worse. You may get worse. You may get better. Keep in touch with your doctor and follow their advice is all I can say. I'm glad I do-- she's helped improve my life so much. My experience were the first five years were pretty hellish and the last year or so haven't been the worst... and I had a pretty good summer. It's looking up ;-) Best of luck to you!
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I'm 31 years old now, and I have had N since I was about 18. It got a little worse the first few years and then kinda leveled out when I hit about 24. Now that its not getting any worse, I am in better of control of it. I have learned what set it off and what helps me during the day, so I am able to take care of myself as best possible. Its all about getting a routine that works for you. Trial and error... you'll find yourself as long as you stay motivated, don't let it get the best of you. And from the sound of it, your not.
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your young and have your whole life in front of you. Do what you enjoy doing most and dont worry to much about what may or may not happen down the road.
Your ahead of the game if you know whats wrong with you. If your suffering from day time sleepyness and supplaments arnt helping than dont be afraid to see your doctor and get on some meds. I know most people like to stay off of meds but they can help you feel normal and be able to function in the real world. Why suffer for 20 years of sleepyness to try avoid taking meds if you can have 20 years of feeling productive and that you have accomplished your goals and dreams. Even now I look back and think to myself.....if I had known and started this sooner where would my life be what would I have done differant. You sound like you have some real smarts in your noggin.....your young.....enjoy your life and continue to use those smarts. Never know who you might end up helping down the road......could be yourself.
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