Narcolepsy or something else

Morning All,

I have been struggling with this for a long time and no doctor seemed to help me so I thought I would come to the source. I will give a little background and then ask my questions. It is long but I want to make sure I give as much detail as possible. Thanks for your help in advance.

My normal day would be: wake at 6am, fall asleep at work, come home at 4pm, fall sleep until 7pm, eat dinner and go to bed at 9pm. The sleep was uncontrollable. Like my body had more control then my mind.

In 2006, I got a job where I traveled a lot (drove 4 hours to St Louis and back every week). I would fall asleep while I was driving. I would have to pull over and sleep half way thru my trip. I knew this was not safe so I had a sleep study done. They said I had no apnea but I snored. So they removed my tonsils, uvula, adenoids, straightened my septum and lowered my turbines. This did not help. In 2010, I had two more sleep studies and they showed sleep apnea. I was setup with a CPAP machine. This did not help.

In 2014, I started to fall asleep in local traffic (which I don't normally do) and decided to see a neurologist. She did a night time study and the next day a daytime study. After a full night of sleep with a CPAP (with no apnea), the next day I slept all 5 naps and fell asleep in under 3 minutes for all 5. My doctor said I am incredibly tired but since I did not dream she could not diagnosis it as narcolepsy. She did prescribe me 400mg of Provigil a day.

The Provigil is great and I feel great during the day. The problem I am having is waking up in the morning. I am getting that "I cant control my body" feeling. So after a full nights sleep I cant wake my body up. I always thought this was just me being lazy but I know I need to get up and I cant.

I told my neurologist and she referred me to an ENT for a device consult called Inspire. The Inspire device is a pacemaker that has a lead attached to the nerve that controls the tongue. When you stop breathing the lead sends a shock to the nerve to relax the tongue so you can breath without waking up. After a minor procedure a couple weeks I was told the device would work for me.

I go in tomorrow for my follow-up and to see if I should schedule the procedure. My question is

1) Does what I am experiencing sound like a sleep apnea issues?

2) Has anyone experienced this? If so what do you do to wake up in the morning?

I understand most of your story as mine parallels it…I really don’t understand the morning - I struggle at times with that and it is hard to explain and people just think I am making excuses. I take my meds and go sit in bed 30 minutes and read and pray…this gives it time to act. I just was changed to Ritalin, so will see if that makes a difference. My specialist is very sensitive and listens well.
My sleep study was also borderline…she said you can take it 5 times and have different results…that I DO have excessive daytime sleepiness and that needs treated so I can have a good quality of addition to what you wrote, I fall asleep typing at the computer and it takes me forever to finish
You may have had a false negative on your narcolepsy study.
Let me know the results of your tongue pacemaker…

Hi Kymera99, what about tests for thyroid? When were your labs last done? Have you considered getting a second opinion before agreeing to another procedure? None of us can give you medical advice. I’d ask both the sleep specialist and the neurologist exactly why narcolepsy has been ruled out. Does the sleep doc know you saw the neurologist? Did the sleep doctor see the neurologists report? Try new interventions only when you’re confident about a good outcome based on the best info you can get. Have your docs communicate with each other and ask for information to be clarified if you have any doubts whatsoever. Your frustration is understandable.

I went in yesterday and the doctor said my apneas need to be more then 20 an hr for my insurance to approve the surgery and I am at 12 an hr. He told me to lose weight and I should be fine (right). I have not had my thyroid test in a couple years but I have had it tested and it was fine. I am coming due for my yearly blood work so I will have them check it then. They did not rule out narcolepsy and its my DX on my medical documentation, the doctor just told me she was not 100% that was what it was. My neurologist is my sleep study doctor. She did my most recent night and day study and was the one who prescribed me Provigil.

I am going to try what nancy mentioned and take my meds first think in the morning.