This is actually about my daughter, who is now 17 years old. Her symptoms began around 3 years ago following a 2-year period of stress and upset she had been under due to emotional bullying at school by her former best friend.
She began to experience intense daytime sleepiness to the point where we now have had to withdraw her from high school because she can't stay awake for her classes. Her sleepiness has been getting progressively worse over the years. It used to be only in the mornings; now it's all the time. She is awake for approximately 5 hours a day, usually very late at night. She describes it as a tidal wave of sleepiness that she has no control over. At first, we thought she was just very depressed or was just trying to avoid school. But she sleeps like this on the weekends and even when her friends are over the house. She has missed out on doing things she really enjoys.
She also has anxiety and panic attacks for which she takes daily fluoxetine 40 mg and a benzodiazepine for intense panic attacks. She then began to experience terrible palpitations which she described as her heart beating so hard in her chest that she could feel it about to burst out of her neck.
She has undergone all kinds of tests from a variety of specialists, all of which have been normal. The only thing that was found was that she has POHTs (postural orthostatic hypotension) for which she takes Pindolol, and this is now mostly under control unless she attempts to do any type of exercise. Her exercise tolerance is a disaster. She used to be a cheerleader and now can't walk more than a block without needing to sit down.
She underwent a sleep study (multiple sleep latency test), which was inconclusive. The neurologist had suspected narcolepsy because she also has very hallucinatory dreams and occasional temporary paralysis upon falling asleep or waking up, both of which are hallmarks of narcolepsy. He had begun her prophylactically on Provigil, but this also gave her palpitations and had to be discontinued.
She has terrible PMS symptoms, for which she had been on birth control pills, but they have stopped helping. She also has what I believe is irritable bowel syndrome because she has had episodes of constipation and diarrhea and terrible stomach pain.
Our daughter desperately wants to complete high school and go on to college, but we fear that, unless we get a diagnosis and a way to help her, her future is anything but hopeful.
If this constellation of symptoms looks familiar to anyone out there, please let me know what you know.
We are at our wits end and the traditional docs don't know what to do for her.