I am a 30yo female who has been sleeping her life away. My whole thought process revolves around sleep. Even as a child I was deemed a "night owl" (circadiam disorder?). As a teen, I had symptoms of KLS. As an adult, I have symptoms of narcolepsy. I am having my third sleep study done at the end of the month, and I am scared they will not find anything. My second sleep study (done in Dec of 06) came back nadda. That is, until another doc read the report in Jan '08 and saw PMLD. I was told I could not have KLS as the MRI of my brain came back normal (no lesions on the hypothalamus). I e mailed a man at Stanford University that said you don't have to have lesions to be diagnosed and he said that sleeping 33 hours did not sound like narcolepsy.
I have slept up to 33 hours straight. No food, water or bathroom breaks. Sleeping 18 plus hours was "no big deal" for me. I would go to sleep on Monday and wake up on Wednesday. I am always tired. Excersize makes it worse. I went to a neuro and he diagnosed me with "atypical migraines" (he thought it was epilepsy) but the EEG came out normal.
During what I call "an episode", I hallucinate smell, lose motor function (slurred speach,arms heavy, have to concentrate very hard to get my body to do things, ect.) , have slight cataplexy-like sypmtoms, automatic behavior (talking and not realizing what I am saying, driving and then suddenly "snapping out of the spell" not remembering parts of the drive before) I see bugs that aren't there and faces in front of me while falling alseep, wake up paralyized (brain is awake but can't get my body to move), insomnia ( I think because I am afraid to sleep, plus I have to push myself all day and it is a hard habit to break), I start to register light all wrong (some lights seem brighter and tend to be annoying), I feel this funny "pressure" on my brain, my ears have started whooshing and I have been "spacing out" a lot lately.
I am tired of being tired, being called lazy and getting referred to psych (depression and anxiety? I am depressed because I do not know what is wrong with me and I am anxious that I never will).
I am not crazy. I think my brain may be, though.
I have two children now (a 6 month old and a 2 yo) and I do not want them to know a mother like this.
If anyone has suggestions, I am all ears. I need help.
Has anyone been reading about hypocretin levels? Cerebral Hypertension?
I am afraid I will lose my mind completely if I don't figure this out soon.
Thank you for taking your time to help!
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