Narcolepsy & Pituitary Tumor

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    quincylayne75
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    Hi Everyone,

    New girl here! I am a 35 year old female and was diagnosed with Narcolepsy in 2000 at the age of 17 (follow up sleep study in 2011). I have only experienced cataplexy a handful of times but suffer from sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness, automatic behaviors and night-time wakefulness. Over the past 18 years I’ve taken nearly every possible drug available for Narcolepsy, with the exception of Xyrem. I feel like I have a good handle on my symptoms with a combination of Nuvigil (AM) and Trazodone (PM).

    In August 2016, at the age of 33 I suffered a massive blood clot in my brain (complete blockage of the right transverse, sigmoid sinus, torcula and internal jugular). During my scans, they discovered a non functioning 1cm pituitary macroadenoma on my pituitary gland. They believe the clot developed due to hormonal changes, but I had no changes in medication, lifestyle (non drinker, non smoker) in over 9 years. I’ve asked 2 Neurologists, 2 Neurosurgeons, my Endocrinologist, and my PCP if they believe the pituitary tumor could be the cause of the clot, the Narcolepsy, now cervical dystonia, and what came later polyps on my uterus. All have told me NO. I guess I have time believing that it’s all coincidental.

    Has anyone here also been diagnosed with both a pituitary tumor and narcolepsy? I’ve exhibited Narcolepsy symptoms since childhood, but had never had a brain scan until 2016, so I don’t know how long I’ve had the tumor. I’ve questioned if removing the tumor would help alleviate symptoms but surgeon’s won’t touch it unless it’s grown, turned malignant, or my hormones begin to test out of range consistently. The clot has since calcified, I only regained minimal canalization after 9 months of anticoagulants.

    Any experience with or feedback on pituitary tumors and narcolepsy would be fantastic.

    Thank you!

    Quincy

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