New Drugs new study 2020

 So i was reached out to for a medical study due to my cataplepxy being so active and out of sorts from most others. Meaning multiple in a day not just week. With only small amount of people diagnosed with it there finding it hard to find medical treatment. So i get to come and be poked and praded and monitored for 24hrs pretty much. 

This provided something to do during covid.  I love going to the research center. They have friendly staff and everything. 

Whats it like in the day of someone with Narcalepsy type1

 Sometimes when you wake up your just lazy and don't want to get up.  But for someone like me its more of a I cant I'm drained i'm tired let me go back to sleep.  Knowing you have places and things to do you force yourself to get up.  Only to fall back to sleep while trying to put your shoes on.  Having that continuous fear of will I fall asleep somewhre I Shouldn't or do something I could be in danger for.

For many think narcalepsy just means you fall asleep all the time and thats false.  I could stay awake one day all day and than turn around and the next not even last more than a couple of house.  My biggest fear anymore is working out, or going swimming.  Continuously afraid what if something happenes and nobody notiecies untill its super late to do anything to help. So instead I avoid any and all things to try and help control  syptoms.

Leaving a uneventful life being afraid to go do the things you once enjoyed fearing you may get rt or someone else.  Not being able to visit friends because it's no safe to drive that far anymore. 

New Med Trial Nov 2017 - March 2018 (LIving with Narcalepsy type 1)

So I went to Orlando in November to have a sleep study done to confirm that I had narcolepsy.  As i'm filling out the forms I start to have a catalepsy episode and freaks everyone our because they hadn't seen one.  I found it funny seeing as they were looking for people with both.

Once a month i would do a sleep study over night and once a month I would also do a check in and obtain more meds. And it would continue until March.

Its a study for a similar drug called Zyrem which is a drug made of sodium oxybate and is reguried to be take twice a night about 4hours apart.  There are many risks with this drug due to takeing to close or double up on dose by accident.  They also typically will pass out within 5-15mins after taking them.  Its a similar mix to that of the Date Rape drug which Doctors have learned also can aid in the stage of REM Sleep.

The drug I will be trying is to be taken once a night and than sleep for 8hours.  Your not alloud to eat 2hrs before taking due to it possible not working correctly.   There is a chance that I wont get the actual drug but a placibo because its a blind test.

UPDATE of STUDY

So i feel that I recieved the real deal the first night I took it I woke up by 8am after not being awake and out of bed for years before 9/10am.  I normally would start fighting sleep around 3-5pm.  And at one point the only time I was awake was for Work, School, or activities I needed to be at.  The first week on this drug my eyes hurt they hurt so bad it felt like I wanted to claw them out.  IDK why but I strongly beleave that it is due to my eyes not being open as long as they had been for years.  I felt wide eyed and awake for what felt like the first time in my life.  I would ask "where have I been all this time, OMG is this what being awake turely feels like."