Living with Narcolepsy

It too years of different doctors telling me that my sleep problems were stress related/depression or as a result of burn injury when I was (post traumatic stress disorder) to get to my diagnosis.

It seems that there is some push to treat depression but little interest in finding solutions for narcolepsy??

I have had nightmares for as long as I can remember and I could have written many of the Stephen King novels from my horrific dreams. I have been so shaken by nightmares, I have avoided sleep to keep from having them.

My children have suffered from listening to me scream in my sleep and I have awakened many times to find them trying to comfort me into reality. I often suffer beyond waking with hypnogogic hallucinations and inability to move. I have waken paralyzed, yet in pain from fibromyalgia. I have dropped glasses while dinig out duetocataplexy and I have had to”zone out” at so many functions that I avoid them.

Every relationship that I have is ruined by my condition. I sleep alone so as to not disturb/frighten people to death in the night with blood curdling screams or kickthem while asleep. I am afraid to have my grandaughter over for fear of scaring her to death.

I believe that my condition is hereditary though aggravated by exposure to C8 from Dupont. It is an endocrine disruptor. There is no history of it in my family but I fear that my legacy will be to my daughter and granddaughter of passing this on to them.I have a son but he has never suffered with nightmares as have my daughter and granddaughter.

As I get older, my seizures are worse and the medicationis worthless (including xyrem) because it either makes me so sleepy during the day or it causes me to retain fluid. I take 60mg’s of Adderrall a day but it makes me nauseous and makes me cranky. I have tried every mondafanil product and every anti-depressant.

I am still extremely exhausted and depressed and after 9years of constant medication changes and frustrations with side effects, I am ready to give up on hoping for anything better. I am very lonely because my family does not understand that I am not choosing to live like I do. There are times when I can function for brief periods of time, relatively normal. There are times when I push myself with stimulants which seems to stress my body into illness. There are times when I have had to pull over and sleep in store parking lots untill I recover lucidity.

I live in the country (the only place that I can afford on SSDI) and I must do my shopping and get to appointments. I am frightened on every trip that I will not make it home but be passed out and get attacked in my sleep. I pull over the second that my head gets that familiar buzz in it and my neck begins to strain to hold my head up and my eyes stars fuzzing a little. Most of the time, I get everything done in one shot and then recuperate from all of the stimulants for two days.

I am afraid that one day, I will loose my home and have to live with relatives that find my condition incomprehensable. That would be sheer hell for me!! There are days that I suffer from fibromyalgia that I stay in my pajamas on a heating pad or in the tub for hours, I can’t imagine doing that it my parent’s house who are very healthy or imposing on my children who are just out of college and one who is still in college.

I don’t want to live in government housing or use government assistance that will allow them to take ownership of my house in this State through recoopment for services rendered for asssistance with transportation. I do not want to move to a section 8 community since I am a “sleeping duck” so to speak.

I don’t know what the future holds except that I pray constantly for a miracle, a cure for narcolepsy very soon!!

Best wishes to all!!!