My daughter recently graduated with a bachelors degree in dental hygiene. She reluctantly reported her diagnosis to the department chair and got accommodations to stand during class and tests and to get extra time on tests if she needed it. One of the instructors questioned her ability to practice dental hygiene to the point of trying to get her out of the program. Fortunately level heads prevailed and she was allowed to prove herself. She graduated with honors and received several awards.
The it was a full time program so she was unable to work during school. She did several things that helped her get through in one piece:
* she got student loans that covered her tuition and fees, housing, car payments, insurance, and food. she had a pretty big loan to pay off when she graduated, but it was worth it.
* she found a house that was set up for 4 roommates - community living and kitchen areas and private bedrooms with locks. This was less expensive and allowed her to feel safe when taking Xyrem - she wouldn't take it when she was alone.
* she stayed on my insurance until she turned 27 - that is the new regulation with Obamacare. My insurance paid for her medications including the Xyrem. She also signed up for the Xyrem coupon that reduced her copay to 75.00 per month.
* Her Dr at the time told her that her brain worked differently than others and showed her a form of speed reading - it really worked. I read several of her textbooks into a recorder so she could listen to them during her commutes.
* she developed several tricks to take tests - using her new knowledge of her brain - she also requested extra time to take the tests if she needed it
* her weight fluctuated to extremes - at one point she was so thin we were worried about her. She would also go on eating binges and would get what she called her "food baby". we have since learned through this forum and others that low carb (think Atkins) and gluten free are the best eating plans for people with N.
* the stress would get to her and she would have manic episodes after taking her Xyrem - the only thing I could do was listen and try to keep her calm until... silence - she was out.
* She had great difficulty being alone even when not taking Xyrem. If her roommates were gone - she would travel 50 miles to stay with her grandmother or friends. She is only recently overcoming this.
I know how difficult it is to go through this with someone - I can only imagine how hard it is to be that person. I will let my daughter know you are here and she may be able to give you more help than I can. It would probably help her right now also. The most important thing to remember is that YOU ARE NOT ALONE! I wish she had known that back then.