Reply To: ADD and Narcolepsy as comorbid conditions?

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Hi, Household6toCrewof7!. I have ADHD (officially finally dx’d at about 20 years old [am 36 now], but showed signs since a baby). I was dx’d initially with Klein-Levin Syndrome in my late 20s, an extremely rare sleep condition where sometimes you sleep for days, even weeks, on end. Longest I ever slept was 5 1/2 days, only getting up to use the bathroom. At that time, I would force myself to drink some water, but was way too out of it, tired and groggy, and didn’t eat nor take my daily meds for several different conditions, including Bipolar Disorder. I would wake up so incredibly sick after those several days of sleep, that I would be shaking uncontrollably and would honestly crawl to the bathroom and then the kitchen. I’m sure my blood sugar was very low, and I was going through withdrawals from not having taken my psych meds the entire time. This happened several times a month. Finally, upon a redo of a sleep study (I was also dx’d with mild sleep apnea), where I had told them the C-PAP machine felt like it was suffocating me and taking it off, the noise, the feeling of suffocation, all led to deeply disordered sleep. During the redo of the sleep study, it was found that I no longer had sleep apnea (thanks to a 40 pound weight loss!). I also took a sleep test I hadn’t before, called MSLT (multiple sleep latency test), which is conducted during the day. Taking 15 minute naps about every two hours gave the doctors the information to dx me as having narcolepsy. Now, I believe they still have Klein-Levin Syndrome on my record, but I don’t believe I have that at all. The narcolepsy and its treatment have made so much difference in my life. I no longer sleep more than 12 hours max (and that’s a rare occasion to even sleep that much; 8-10 hours is what I need the most). I take Xyrem at night to help me get the important deep restful sleep that I wasn’t getting before, and then taking Provigil during the day to counteract the often severe sleepiness during the day. I also found that after being treated for narcolepsy, my ADHD isn’t as severe as it was before. IMO, my ADHD was quite severe. Now, I would describe it as mild, though the narcolepsy treatment isn’t responsible for all of it. I also worked very hard for many years finding the right medications, coping skills, and implementing various pieces of advice in a way that works for me and minimizes symptoms during the day.

I had narcolepsy even as a child. I remember being sent to the school social worker because, twice, this one teacher had seen me laugh uncontrollably and collapse on the floor. Apparently, they thought it was psychological, but in actuality (only having known as an adult), what I had been experiencing was cataplexy, which is loss of muscle control when overcome with strong emotion. Some people might collapse from being suddenly frightened or scared. Other people maybe when they find out terrible news, and the despair causes them to lose muscle control, and thus collapse. I stopped collapsing in my mid-20s I believe, but wasn’t dx’d with narcolepsy until my early-to-mid 30s.

Proper treatment has made all the difference in the world. I literally had minimal quality of life while suffering with the narcolepsy, the various mental illnesses I have, and several physical ones as well. Being able to wake up every single day has given me a quality of life I never dreamed possible. The first time I took the Xyrem, I have NEVER in my ENTIRE life, woke up feeling like I did that morning. I was wide awake, rested, and felt like I could anything that day, and succeed. Over time, the restful feeling became less pronounced, but still, as a memory, was amazing.

Feel free to email me if you have any q’s or just want support. 🙂