This topic contains 6 replies, has 4 voices, and was last updated by Natdoc 4 weeks, 1 day ago. This post has been viewed 417 times

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    Moderator @ferret

    Just finished reading this article and thought that it deserved a spot here.


    The closing paragraph states “Having a system and routine is important.” Now, I know she was talking about caring for her baby but I will echo the sentiment for anyone who is dealing with a disability… ROUTINE.


    Participant @tinyelephants


    It is so coincidental you should put this here. I was just reading this exact article the other day. I don’t even know how I came across it or why, but I decided to read it because a good girlfriend of mine has POTS and I thought I’d read it so I could perhaps have insight or be more knowledgeable to give her better support when I am with her. I agree, routine is super important.

    Moderator @ferret

    You’re a good friend to care enough about reading up on her condition. Good on ya!


    Participant @tinyelephants

    Thanks @ferret. She’s the only one I got. I think I need to keep her HAHA! Now that I think about it, maybe I read it from this post (?) It only came out yesterday, according to the date on the link and your post, so I couldn’t have read it before that. Idk, I’m so tired. Anyway, thanks again 🙂


    Participant @idreamofnapping

    I have narcolepsy. I suspected that I may have POTS, because when I stand for more than a few minutes, I feel like my ribcage is constricted, I get nauseated, I can’t concentrate, and I have a growing sense of panic. When I did my own DIY tilt table tests at home, my blood pressure would drop and my heart rate would increase, but not always enough to qualify as POTS. I had a real tilt table test in an EP lab, but halfway through the test, they did the hand-in-ice-water test, and when my hand came out of the water, I got super nauseated and started seeing grey spots, so they mercifully lowered the table right away (so I wouldn’t barf on them, I guess!) The doctor diagnosed me with vasovagal syncope (which is weird, because I’ve never fainted in my life)… but she didn’t say anything about POTS, so I guess my numbers didn’t get high/low enough in the time I was standing, before the ice-water test. I also have a diagnosis of dysautonomia, but I can’t remember at this moment which of my symptoms earned that diagnosis (brain fog, maybe? lol!). I thought that narcolepsy was a form of dysautonomia, as is POTS?

    Moderator @ferret

    @idreamofnapping and @jasonm and @natdoc

    This is the only article that I could find… and, unfortunately, you need to subscribe (which is why I flagged Jason and natdoc as well).
    Narcolepsy Type 1 (with cataplexy) has been referred to as autoimmune since it usually means your Hypocretin neurons are officially gone or on their way to being gone due to a malfunctioning immune system.
    Other kinds of Narcolepsy are unknown as to the cause (no receptor cells?, hypocretin that receptors don’t recognize? etc. etc.)
    We know that you can have sleep apnea AND Narcolepsy.
    So, yeah, why couldn’t you have dysautonomia as well as N. It’s screwed up signaling as well. Lots of variables to be sorted out and I’d say that research still has a long way to go.


    Participant @natdoc

    Dysautonamia is an umbrella term used to describe medical conditions affecting the autonamic nervous system.POTS is one of these conditions. Normally your blood flows at a steady rate through your body regardless of position anything which alters that normal flow may cause symptoms. In POTS your blood will stay primarily in the lower half of your body when you stand up, this makes your heart beat faster, sometimes 30 – 50 beats per minute faster, which causes the fall in blood pressure. You may feel dizzy, have blurred vision, chest pain, sweating,nausea, vomiting and even brain fog.
    Narcolepsy is a neurological disorder that affects the brains ability to regulate sleep wake cycles.When cataplexy is associated with narcolepsy there is a sudden loss of voluntary muscle tone often triggered by strong emotions (laughter, anger, fear or excessive stress. When cataplexy is present the cause is most often the loss of brain cells that produce hypocretin.Though the true reason is yet unknown, this appears to be linked to a disorder of the immune system. Researchers believe that in persons with narcolepsy the bodys immune system selectively attacks the hypocretin containing brain cells because of a combination of genetic and environmental factors.
    All that being said there is not a law confining you to just one disorder, there may be several factors at play here. Your most important and only job is to find a Physician you trust and will help you find answers. I have said it before and I will reiterate it again. this does not have to be the smartest person on the planet but they do have to be willing to find your answers no matter what, they must be persistent and open minded.
    I wish you all the best

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