Cataplexy / Once a trigger always a trigger?

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This topic contains 34 replies, has 7 voices, and was last updated by Sleepy RBD 2 months, 2 weeks ago. This post has been viewed 818 times

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  • #9356
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    Natdoc
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    @natdoc

    mobilealguy
    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

    #9362
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    mobilealguy
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    @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.

    #9367
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    mobilealguy
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    @mobilealguy

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

    https://www.ncbi.nlm.nih.gov/m/pubmed/21518146/

    “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!

    #10003
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    MewMewZelda22
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    @mewmewzelda22

    I don’t know if this is the right thread to post to but oh whale.

    My cataplexy has slowly been getting worse as time passes by and my meds arent really working anymore. One of the side effects of my cataplexy med (Nortriptyline) is sensitivity to UV rays, wether they be artificial or real. I’m going to be traveling to Japan for an exchange program I’m involved in and I need to find a treatment that won’t mess with my current stimulant (concerta 54mg) and would make a difference with my cataplexy.

    My neurologist is and has been trying to get me on Xyrem, but I am terrified of it because of what it is. I also live in Indiana, which has a zero tolerance for THC, so I’m afraid Cannabis oil is not a treatment available for me right now sadly.

    Any ideas or suggestions of meds or treatments I could look into for my cataplexy?

    #10005
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    Sleepy RBD
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    @sleepy-rbd

    @mewmewzelda22

    I’m glad you decided to post. I am also hoping someone will respond with a suggestion that will be helpful to you. I can understand your frustration with the lack of options, not wanting to choose the ones which are currently available and having all of that compounded by the lack of accessibility to other ones which may be helpful.

    Since you will be traveling internationally, there are some tips offered by other forum members under this link related to traveling with sleep disorders. (If you haven’t previously read it, I hope some of the information there might be helpful to you.)
    If you don’t already have a medical bracelet, I would definitely recommend getting one. I always wear mine when I’m traveling or out by myself, just in case.
    I also carry a description of cataplexy and a copy of my diagnosis along with me on my trips, even though I have never needed either of those.

    I am glad for the opportunity you have in front of you and that you are moving ahead with your plans. I hope you will find the help you need. I wish you the best of luck on your journey to find answers and also on your adventure abroad. 🙂

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