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How do you explain POTS


Guest Mary from OH
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Guest Mary from OH

How do you explain POTS to someone who asks you "what is it"? They aren't really looking for a long, detailed, medical explanation..... But, it's difficult to explain quickly and succinctly.

How much detail do you go into? How do you get across how serious it is? I've had some trouble with that. Mostly, people say, "oh good, so you're ok". Then, I'm thinking, haven't you been listening??!! Granted, I don't want to sound like a drama queen or a big complainer, but POTS is complicated and can be potentially very serious...

How do you all handle it when someone asks questions??

Any suggestions?

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This is a tough one. I generally speak in a very matter-of-fact manner, telling them something like, "My body doesn't understand how to act. Automatic functions such as breathing, body temp, heart rate, blood pressure and more can just suddenly go crazy, accompanied by any combination of about 30 other symptoms. Sometimes I go for weeks or months feeling like I could collapse or pass out at any moment. I never know from one moment to the next how I will feel. But I'm doing everything I can to live a normal life."

If they ask questions, I will answer them all day long! I do watch for signals that they have heard enough, and I try to end with some kind of positive statement like above, or "it's just what I live with, but today hasn't been too bad" (or, on a bad day, I might tell them that today's not such a good day but I'll be ok). Somehow, I think putting the positive face on it comforts them and releases them from thinking they should feel sorry for me. I'll accept help if I need it, but I want people to understand what I go through, not pity me!

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I typically stick with a simple explanation of "why I have tachycardia" part ... the veins in my legs don't constrict when I stand up (as they do for people without POTS), so my heart beats really fast all the time to compensate and keep blood flowing back up to my heart, lungs, and brain. There are a bunch of other symptoms that go along with it ... And then I say more if they ask for more. I'll also typically say that some people suffer in rather extreme ways, passing out upon standing and feeling very debilitated at times.

I think Nina put the text of the information card we'll get along with the DINET bracelets in a posting--the one at the top of your screen on the main discussion page. Here's the link--check out the Sep. 4 posting.

http://dinet.ipbhost.com/index.php?showtopic=1087&st=0

PS to Mary--thanks for your note! :( I appreciate it!

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I usually don't call it POTS, but prefer the term dysautonomia. Somehow it helps for a shorter answer. I usually just say my centrall (or autonomic) nervous system is dysfunctional. If they still look at me with blank eyes ... I tell them that my pulse can go up to 130 just by standing up ... and that it doesn't go back down until I sit down again.

It is hard though ... for me, I really want those close to me to understand. And I try really hard to come up with analagies that they can relate to. The other day with my husband I was having a really hard time in the shower and it took everything out of me and I really wanted him to "feel" what I was going through. So I thought about it and asked him to close his eyes and imagine what it would feel like if for no reason he felt this surge of anger (anger is something most men can name and identify and easier to describe then the andrenaline or cortisol reaction that we experience) I went on to explain, that you couldn't "control" the anger, by thinking calm thoughts, you couldn't make it go away...you just had to accept that it was there and overwhelming. He nodded. Then I said, now imagine having this happen to you every day, month after month, year after year ... imagine what it might do to your spirit.

At times, it seems very important for me that people "understand" -- but what I find is that these are usually just the times that I am being very hard on myself and indeed I am the one who isn't being very understanding and compassionate to me.

Good luck on your journey.

EM

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I tend to say I got a virus that damaged my nervous system. (mono caused my POTS) If people want to know more I go on to explain what your nervous system controls (HR, BP, etc.)

Hope this helps,

Lisa

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I'm in highschool and when people ask me I usually refer back to something we did in biology last year. It was with taking blood pressure sitting down then standing up then after running up and down the stairs for some time. This was before my POTS really 'kicked in' (for lack of a better term) but I have asthma so I didn't participate in the running part of it. Anyway, what I try to say is like explain how for them, if they change from sitting to standing their blood pressure goes up just a little bit, and how that's something that because of my POTS, doesn't go over so well for me. I try and explain that my blood pressure and heart rate tend to go a tad haywire and that just standing up is something I can't tack for granted anymore. And sometimes will say just how my brain and heart and all don't communicate as they should which affects lots of just making it through the day. I didn't read what everyone else said, I know I should have, but I hope have helped somehow :o

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First thought: Gee whiz, you guys are so nice.

Second thought: There is no sound byte that explains POTS. So.....

I don't explain myself to anyone, unless they've known me for awhile. Even then, I usually just start with a brief answer "My heart beats too fast for its own good." All monosyllables, easy for the public to repeat and they think they understand.

Close friends, people I've known awhile get a more detailed description. If they're medical folks/friends, I do go into a lot more detail. I often just say "dysautonomia.... where the autonomic nervous system doesn't work like it should. The autonomic nervous system is that part of us that controls breathing, heart rate and blood pressure. Now that's not so important, is it?" Let them draw their own conclusions whether breathing, heart rate and blood pressure are important. If they really care about me, they'll ask for more details.

I don't give a **** if mere acquaintances understand it or not. A lot of people ask out of idle curiosity, not caring. And I'm not here to satisfy anyone's curiosity or help them pass their time of day. I'm not a science project.

:wub:;):PAnd the B**** of the Day Award goes to - envelope please - Herdswoman!

"I'd like to thank my husband for his unflinching support and bad influence. And I am not A B****, I am THE B**** and that's MRS. B**** to you."

I'm really not as bad as it sounds. All of these things, said with an even tone of voice and a smile really let most people think they've learned something! And the above quote is actually something I told an alcoholic druggy patient once, after he made a horribly explicity, sexually perverse suggestion to one of my aides and I spoke to him about it. He called me b****. So I set him straight.

:o Ah, nursing! A job like no other!!!!

I shoulda been an ironworker.

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