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For My P.o.t.s Friends With Syncope


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Hi there! I was 'diagnosed" with POTS in Aug. 2011 but found out in Dec. 2011 I have autoimmune mediated autonomic dysfunction neuropathy- I still have POTS but all of a sudden a symptom? At Mayo in Rochester they gave me a list a mile long of things wrong with me. This is absolutely something I've had since childhood- when syncope began. My parents were not the most reliable but I remember having episodes often. I was hospitalized often- always had (still do) urinary retention soif get really bad bladder infections that I'm assuming would go in my kidneys so I'd be hospitalized. My parents never rememer me getting a fever at age 4-6 weeks old in which I was hospitalized due to a rare case of influenza. I had a fever of "over 105 degrees". Other relatives have vouched for the hospitalization- my aunt says I was around 4 weeks old and very, very sick. They weren't sure I'd make it. After that as far as I know I've never had a fever. My normal body temp is between 96.8-97.1 and no matter how sick I am it's there.

Now to syncope- lets say syncope began at 8-10 years old. I'm 38 years old. In a horrible flare for a year now that's kept me bed ridden w/ several head traumas. Does it EVER just stop or as long as I have the symptoms I will keep fainting. I'm so used to it and I'm not awake, but it is taking such a toll on my family. Even if I crawl, scoot, whatever I still can get it. Sometimes with seizures/convulsion type twitching, eyes rolling back in my head. I asked my husband if it gets easier and he said: "No.. Never. I'm always afraid this will be the one time you don't wake up." I've been very sick this year- they were not sure if I would make it, (I live in Wisconsin rest of the fam out West) well, a possibly dying kid, sister, etc. brings everyone. I swear- ALL of these people watched me grew up fainting but you'd think I had cardiac arrest each time. I just wish it would go away- I also have children who are terrified as well.

I guess I know the answer it thought I'd ask. Thanks, Jen

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Hi Jen,

I just wanted to send you some positive vibes. I'm so sorry you are going through this, it must be really hard for you. I really hope that it will get better for you. I have no information for you, but I really hope someone does! This is a great site for information & support :)

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I had alot of problems- fainting , seizures and unable to stand- but got better after menopause. The Dr. did find a med that helped me also. I do not have

POTS tho. I have OH and NCS. The med is Norpace.

good luck

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