Hypersomnia, Apnea, and Parasomnia

I was recently diagnosed with Hypersomnia and Obstructive Sleep Apena. I've had these issues along with Parasomnia and Insomnia ever since I was a kid.
I'll go through cycles of Hypersomnia and Insomia, but the Hypersomnia is my major problem.
I finally was diagnosed when it became so severe I was falling asleep outside in random places suddenly, falling asleep while driving, and then the big problem...I fell asleep in my car and had a sleep walking episode.
During my MSLT, I had five naps and 1 of them I had sleep onset REM. Because of that it left my test inconclusive for narcolepsy.
It's been tough, during the day, even with medication I feel tired and then at night I can't sleep. At night sometimes I wake up coughing or choking, I have dreams that I can't breathe, I wake up for no reason, or I just lay awake. I don't like to keep clocks around anymore because then I know I wake up every 15 minutes and never get restful sleep. I don't know how to fix the Apnea, I'm actually underweight. I had my tonsils removed when I was teenager and I don't snore. I've tried to put pillows against me so I don't turn on my back, but that always fails. It just feels like living with crap for sleep at night and wanting to sleep during the day all the time is just the life I was meant to live.
I have anxiety and I went through a period where I was trying new medication and they all seemed to exacerbate my Parasomnia. Although, it is better than any Parasomnia episode.
It just sucks never being able to sleep like a "normal" person.
My stimulants have been a lifesaver, yet some days they still don't make me feel completely awake. I still feel really groggy and I need to have a couple energy drinks to feel slightly normal so I'm not afraid of falling asleep while driving or I don't just go home and take a nap.
What's worse is I feel like my neurologist is afraid to treat me because they hate prescribing stimulants. In turn, it makes me afraid to talk to her about my daily living.

What it like for the rest of you? I've never talked to anyone in a similar situation. It will be interesting to listen.

Hi, I also have hypersomnia, sleep apnea, and parasomnia.

Since you've had a sleep study, I assume you've seen a sleep specialist. A sleep specialist should be treating you, either instead of or in addition to your neurologist (depending on if you have other neuro conditions).

You most likely need CPAP to treat the sleep apnea. I was diagnosed when I was in my 20s and have none of the "typical" risk factors other than family history. It is frustrating, because people just assume you must be overweight, and that if you lose the weight the apnea will go away. Well, I was 125 pounds when I was diagnosed. I really didn't want to use CPAP and for years used it off and on. But I can honestly say that CPAP changed my life. You won't believe how much you will dream when you start using it.

The only treatment for true hypersomnia/narcolepsy is going to be pharmaceutical. Unfortunately, you will need to be on some sort of stimulant, likely ritalin (unless you can get your insurance to pay for the newer drugs). There are behavioral-type therapies, but you have a medical disorder that needs to be treated. Think of the old argument, would you tell a diabetic not to take insulin?

Your sleep doctor may also provide medication for you to take at night to help you fall asleep/deal with the parasomnia.

It is kind of freaky, I talked a lot with my sleep doc about taking meds to stay awake and meds that effectively make me sleep. I joke about my "Judy Garland" meds, but I have spoken to a lot of sleep professionals and have done a lot of reading, and with this combination of disorders this is the appropriate treatment.

It really will change your life once you get on CPAP and meds. And yes, some people will try to make you feel like a drug addict, but you have a medical disorder that requires treatment. I want to note here that you will not get high or a buzz from the ritalin (or whatever med). Think of when someone has surgery, the doctor prescribes morphine (or whatever pain med) immediately after recovery. The patient doesn't get high because the drugs treat the pain. If that same person took the same drug when they weren't in pain, she would likely be as high as a kite. It is the same way with ritalin. I do not have any real reaction to it, except that I can actually wake up (and some rare days my hypersomnia is so bad, it doesn't even wake me up - then I know I have to call in sick to work). If I gave a dose to my sister, she would have the typical 'speed' reaction.

Please see a sleep specialist. People die because they do not treat these disorders. I have fallen asleep while driving, a few times nothing really happened and a few times I've had minor accidents (rear-ending the person in front of me). I finally sought out treatment because I was terrified I might fall asleep and kill someone or even myself. And untreated sleep apnea is dangerous too. All you have to do is google 'sleep apnea death' to read terrible stories of people who did not have effective treatment or did not understand how serious sleep apnea is.

I hope this helps. Please don't hesitate to message me if you want to chat privately.