Cataplexy / Once a trigger always a trigger?

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This topic contains 32 replies, has 7 voices, and was last updated by mobilealguy 2 weeks ago. This post has been viewed 556 times

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    Participant @natdoc

    Thanks for your post. It seems that the psg and MSLT were both performed, was there any mention of REM sleep either during the overnight or during the MSLT. I see that you slept during the naps,however, the important distinction here is if it was sleep or REM sleep.
    The treatment you received is in line with options for treating narcolepsy. Everyone has different effects when taking xyrem and sometimes it is a choice between dealing with the side effects or the disease. Wt loss is a big deal and especially if you do not need to lose any. Milkshakes work well for weight loss by the way.
    I am also curious to know if other neurological issues have been ruled out. have you had an MRI of your brain and cervical spine and if so was it done with contrast? How about an EMG? Have you had a complete neurological examination?
    There is certainly something else going on here beside narcolepsy and it is important to get results.
    Best of luck


    Participant @mobilealguy

    I appreciate all the feedback. I agree about further tests. I’ve been keeping a log to take to my sleep doctor and cardiologist. I see them both again in June. I’m trying to do my own research in the meantime since I don’t seem to be getting answers from them. It disappoints me that my sleep doctor was so quick to give me a diagnosis of cataplexy simply because I dream when I pass out. He didn’t ask questions or explain cataplexy. He was also dismissive towards my concerns about my weight loss. He has helped me so much for him to be this way now. And I have heard about checking with a neurologist. I’ll figure it out eventually.


    Participant @mobilealguy

    So I was doing more research today and found this as relates to syncope:

    “Syncope is often preceded by a symptom complex characterized by lightheadedness, generalized muscle weakness, giddiness, visual blurring, tinnitus, and gastrointestinal symptoms. These subjective symptoms are very important in guiding the diagnosis. In our experience, the impression of coming out of a dream after the syncopal episode is a subjective symptom commonly reported by patients, if questioned.”

    So I think syncope, which was my original diagnosis from the cardiologist, is correct. So when I thought I had cataplexy I needed to learn my triggers. With syncope it’s no different, I need to learn my triggers!

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