I was diagnosed in 2014, doctor decided that we should start Xyrem and keep me on my stims (Adderall 10mg)
After about 2 years of suffering, and I mean SUFFERING through the worst side effects possible (vomiting nightly, sweating, bed wetting, combative actions, sweating profusely, nightmares, night terrors, loss of personality, falling asleep in the worst places ect…) I had just about given up. The Xyrem was no longer working for me. We found out it was because I developed severe anxiety that was not allowing xyrem to work properly.
Doc pulled me off the Xyrem, continued my stims, and the plan was to find a way to treat the anxiety to continue the Xyrem.
5-6 Months go by and my anxiety/depression are under control. BUT I did not want to be anywhere near Xyrem ever again. Coming off of X woke me up to the realization that 1.I was a completely different person while on it and 2. that it just wasn’t worth the side effects.
Made doctors appointment with my sleep specialist and he told me that since I didn’t want to continue Xyrem, there is nothing else available to help me sleep at night. (I also have bouts of INSANE INSOMNIA.) His plan was to keep feeding me stims after stims after stims. Because well hey, at least I’m awake right? No.
Decided I should probably find a second opinion. I was DREADING the fact that I would have to go out of town on a witch hunt and that was the type of thing I didn’t have the patience or the wiill to do.
THIS IS WHERE IT GETS INTERESTING.
My boyfriend had a sleep appointment to be tested for Sleep Apnea at OSF St. Francis Hospital. This hospital is right across the highway from whom I had been seeing. While we were in the room, I was patient until the end of the appointment. I brought up a few questions to get a background on how well they are trained to treat PwN&C. This is the first time I’ve heard in my life a doctor respond by giving a chuckle followed by: We treat hundreds of patients a day. It’s what we do.
We were able to set up an appointment and even brought up other options to get me the sleep that I needed. That was a huge relief. My appointment is for July 12.
Now, today, I visited my psych (he manages my anxiety/depression meds) I informed him that I would be changing sleep doctors to someone who is a little more open minded. I mentioned I haven’t slept through the night in months. He automatically prescribed me a very low dose of Ambien to take along with my very small dose of Klonopin. I walked out of the office nearly in tears knowing that my sleep tonight is going to be the best sleep I’ve had since 2015.
Long story short: Finding treatment and diagnosing narcolepsy is very difficult in the city of Peoria, Illinois. It’s hard to diagnose and treat anywhere because of how unique the disorder is. But I think I’m finally on my way to figuring my hectic, sleepy, exhausting life out. I couldn’t me more excited!
As of now, my meds consist of
Morning: Adderall 30mg, Provigil 200mg, Klonopin .5mg
Night: Ambien 5mg, Klonopin .25mg, Zoloft 100mg