mariabf

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  • in reply to: ADD and Narcolepsy as comorbid conditions? #81011
    mariabf
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    I know this is about 6 months old, but I wanted to comment. I was diagnosed in 2001 with ADHD at the age of 24. In September 2017 I realized I had all the symptoms of narcolepsy my entire life. Sleep attacks going back to daycare when I was 3-4 years old. Hallucinations when falling asleep and waking my entire life (don’t remember a time I didn’t have them). Not as often but sleep paralysis. I have noticed I even have muscle loss with emotion albeit mild. I drop things when I get a build up of anger. I have fumbled things with laughter, I didn’t notice my husband did. My knee gave out when I got embarrassed

    So off to the sleep specialist. Well 2 actually. Two PSG’s and MLST’s later, both came out negative for Narcolepsy. No rem, and sleep latency’s were 13.5 on the first and 14 on the second. Sleep apnea, RLS & other movement disorders, and circadian rhythm disorders were ruled out. IE all other sleep disorders. All the PSG showed was 1) I don’t sleep well at all in the lab. only 55-65% sleep efficiency. 2) I wake up and jump from deep to light sleep ALOT, so fragmented sleep. 3) I had hypersynchronous theta waves during stage 1 (not normally seen past the age of 13). The actigraphy shows that I have fairly decent sleep habits I go to bed between 9-11 every night and wake up 5-7am every morning including on weekends. The MLST 1)I have a normal sleep latency 2) I don’t go into rem 3) I have hypersynchronous theta waves during stage 1 and stage 2 (again not normally seen). 4) Despite not going into rem, I dreamed AND had hallucinations(ie heard sounds that couldn’t have happened). I don’t have my followup on my mlst with the 2nd sleep specialist until next week April 13th, but since the mlst was in February I got the results earlier. My diagnosis after my first visit with her was hypersomnia unspecified.

    So that led me on a journey of what and the heck was causing all the narcolepsy symptoms all my life if I didn’t have narcolepsy. I was diagnosed with depression and anxiety in 2009 after a really shitty year, and I was actually depressed in 2012. But my symptoms started as far back as 1980-1981 at least. Not to mention my sister & brother both have all the symptoms and both diagnosed with ADHD. My parents both have some symptoms of narcolepsy as did my grandparents, great grandparents on both sides. AND my son has had hallucinations when wakeing and falling asleep since before a year old, and now at 3 has started have intermittent sleep attacks. SO CLEARLY, there is something physiological wrong that runs in my family.

    Well my research all leads back to my ADHD. It runs rampant in my family several nephews have been officially diagnosed, my parents show all the signs but never diagnosed. And it is well known ADHD runs in families. So I started there. Tons of articles indicate that people with adhd have sleep disturbances, including parasomnias and fragmented sleep. There is an additude article where a psychologist termed “eeg negative narcolepsy”. She believed that some people with ADHD would suddenly fall asleep during the day because their brain would give off theta wave intrusions. Theta waves… wait a minute I had hypersychronous theta waves in my psg and mlst during a time they aren’t normally seen. Huh, so I investigated theta waves. Turns out there was a study done on adhd children and it was found that there is a subset of people with ADHD that have extra theta waves. Looked into them further, they are often seen in children who are drowsy…. so they are associated with drowsiness, and per the psychologist sleep attacks. That explains my sleep attacks and constant sleepiness. Looked into it further. Theta waves in the meditation world is known to trigger VIVID hallucinations/imagery. Oh and hypersynchronous theta waves are saw in REM, and spikes are seen when waking (ie when I have hallucinations) Huh, well if that is the case it explains my hallucinations and dreams even without rem sleep happening. So that explains almost everything, BUT the muscle loss with emotion. Well until I found a study that showed that theta wave intrusions occurred during cataplexy in children. WELL, so back to theta waves, which I know I have in times usually only seen in children….. SO. Well and I have run into a few ADHDers online who where diagnosed with Narcolepsy but had mlst results the same as mine.

    So my theory, that there is a subset of people with ADHD who have these extra Theta waves that cause Narcolepsy or as the psychologist stated “eeg negative narcolepsy”

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