Hello all, I am in the process of being diagnosed right now and its not been an easy experience. I am 99% sure that my problems are being caused by N. I will be wide awake one minute and struggling to stay awake the next. I fall directly into REM sleep, when I'm not having insomnia. Also I get HH which are terrifying most times. I originally went to the doctor for migraines and after 3 months of trying to figure out the cause I think this is it. So I trekked back to the doctor and very, very nervously asked to be tested. To my surprise she agreed right away, however when I got home I noticed she hadn't ordered the correct test, she had ordered a test for sleep apnea. I called back and we argued back and forth for awhile so I called the sleep clinic who called her and got the correct test ordered. She also sent me to an ENT to look for any obstructions that might be causing apnea, nothing was there. So at this point I am pretty angry with my doctor.
At first I was excited to get this figured out and maybe hopefully get a little better but a few days ago it hit me that this is going to change a lot of things. Its going to change where I can live (I need to be able to drive!), it's going to change how people look at me, and now I'm going to have all sorts of stigmas. Im really afraid of the first time someone suggests my parenting is affected by this. I know most of my family will be supportive but then there are the family members who don't know when a joke has gone too far, or the flat out cruel member of the family who will take any chance to put me down (I mostly avoid them anyway but cant avoid them all the time).
So now, I'm angry with my doctor, worried about my future, and trying to prepare myself for the idiots who will say mean things, but at the same time not get so defensive that I attack innocent comments. Also my husband and I were planning on having another child soon and now I feel like that's off the table. Any help you can give to this whole mess would be greatly appreciated.