I have been dealing with what I always thought was insomnia since 1997. After numerous dead ends to my sleepless nights, and constant tiredness my doctors decided I needed to have an MSLT done. I had it done on March 2 of this year and my results according to the doctor were "scary bad". On my followup on the 14th the doctors told me that the test results were compatible for narcolepsy or hypersomnia with cataplexy. She said it was my choice as to what I want listed on my medical record...so now I am left with the overwhelming task of what to I do????? Which diagnosis do I go with? Which medication route do I think is the better one?
Unfortunately I haven't found anyone that I can talk about this with and it leaves me in a state of panic.
To make matters worse I have been dealing with ADHD and depression my whole life, and since 2013 anxiety attacks. Everything I have been reading has just been making me more confused, more depressed and more anxious.
You do not have to live like this. After 8 years, I am figuring that out and taking more of a directive role in my treatment. Based on your comments (I am not a dr but play one on tv…lol ), my first suggestion would be to take some time off and relax. Sleep when you can and enjoy your family. Then, it sounds like you need a second opinion on your exact situation. Talk to a psychologist who has experience with sleep issues. Above all, keep smiling, it will get better. If you need to talk, feel free to send me a note and I will be happy to chat.
I’ve learned in an earlier discussion here that different states have different rules for drivers with a diagnosis of narcolepsy. Ask your doctor if the diagnosis in your file has anything to do with her treatment approach, and that you’d like to know why it’s important for you to choose a diagnosis. Also, “scary bad” would have made me nervous too as a new patient!
I have ADD and depression, too. If you’ve been fighting sleep disorder symptoms it can effect other things, and symptoms for disorders can overlap say with ADD. Did you have any sleep apnea?
Even with treatment, you won’t be “cured” but helped. I learned to be choosier about my battles, and to turn on the “fight it” mode when I wanted to but to accept treatment, too. I think you will find that balance.
Fortunately I did not test positive for sleep apnea. I have very mild limb movement, most associated with "waking up". I am not expecting a cure, though I wish it was possible. I just want to feel normal. I haven't started any medications yet because we don't have a diagnosis written down yet. But I am afraid to be put on stimulants again because I was on them all of my childhood and all I remember is feeling like I was weighted down. But I don't want to get on a medication that causes me to be a queen b**** to my family. They have been through enough and I hate putting more on their plate form them to deal with.
You've been suffering for a long time, so give yourself permission to take time in choosing your next steps. As suggested by SleepForge, take some time for yourself and family, talk to an unbiased professional and keep in touch. It will get better. I, like you and Carol, also have depression (along with sleep apnea, narcolepsy, and other annoying diseases, conditions that mess up my lifestyle and wreak havoc with my health). But I believe I'm getting closer to finding my balance in life, and I'm giving myself the time to get there.
I have restless leg syndrome, which would keep me from sleeping and awaken me with leg pain. I've opted not to take medication for this. Instead, I stretched my leg muscles and hips during the day and before I go to bed. If pain wakes me up, I stretch it out. I take too much medication for everything else and I just couldn't bear adding another one. I don't have ADD, but I do take Ritalin for focus and to stay awake. Provigil didn't work for me. but I can get pretty nasty coming off from Ritalin, and that just plain !#$?+.
Sleepforge and kwoman are right about needing time, and sometimes medication trials take patience. I understand about “crashes” in medication, but as an adult you’ll have the ability to notice details of the effects and adjust dose amount, time between doses, and be aware of any irritable behavior, too. Along with naps and adjustments in any habits you want to start or change you will have some good days, and that’s what you’ll be working toward - more of those.
If you’ve been feeling crappy with uncontrollable symptoms I think it might be an adjustment no matter what. You can work with it. We will be happy to support you here!!!