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Struggling to Explain Narcolepsy to Loved Ones

pastelwasteland

602d

does anyone struggle to explain to their loved ones about narcolepsy and how it effects your life drastically and when you try they just don't get and down play your struggles

2

5

5

Cataplexy & Narcolepsy

Lithium

Modafinil

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    • alliillaalli

      595d

      Yes absolutely! It's usually damage due to an immune system attack on specific brain tissue, which is why it's commonly associated with other autoimmune disorders such as MS. There's argument in the medical field as to whether it should be classified as a sleep disorder or an autoimmune disorder. The gene mutation associated is HLA-DQB1*06:02 if you want to research further. ☺️ I'm really bad about checking this frequently but I will always respond whenever I'm back.

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    • alliillaalli

      595d

      Yes absolutely! It's usually damage due to an immune system attack on specific brain tissue, which is why it's commonly associated with other autoimmune disorders such as MS. There's argument in the medical field as to whether it should be classified as a sleep disorder or an autoimmune disorder. The gene mutation associated is HLA-DQB1*06:02 if you want to research further. ☺️ I'm really bad about checking this frequently but I will always respond whenever I'm back.

      1

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    • alliillaalli

      595d

      I have found that the only thing that actually made people realize it was a serious disorder was when I explained to them that it's caused by literal brain damage. I can explain symptoms all day and they'll just aw man that sucks, but mention brain damage and they WOAH and start actually listening.

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      • pastelwasteland

        595d

        @alliillaalli its caused by brain damage?! I had no idea I've always been told it was a disease eating away at the cells of the that part of the brain its so hard to get people to understand that not all treatment will work 90% of the time its quite a struggle can I message you about this

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    • k8lynt

      597d

      Yes! Especially because people think of it as this stereo typical disease where you just fall asleep at a moments notice. That's not how it works for me at least, i am just super tired all the time and willl feel like I'm in a dream state.

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      • pastelwasteland

        596d

        @k8lynt or that sometimes its absolutely debilitating and they say just get new medicine or your medicine must not be working like 😮‍💨 I'm also bipolar so if I'm tired and stressed my lithium doesn't work so I'm just constantly exhausting myself

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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