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How did you contract POTS?


Guest thisblows
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Guest thisblows

Please state how you contracted POTS exa) virus, preggers, autoimmune disease.

Since I went through the agony of being afraid of being DX with POTS (I passed my tilt test though...so that means IST for me) I really want to become more familiar with the disease so I can make people around me aware of whats out there. Thanks!

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I'm speculating but I think that the majority of us don't know how we developed POTS. I don't think that it's clear cut very often. I think some of us are predispositioned to it (hereditary.)

As for our stories, I'm sorry too tired tonight to tell it again. However if you scroll back through a couple of weeks you'll get a good idea because this topic comes up every couple of weeks. :rolleyes:

steph

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My form is believed to be genetic. I've had ANS problems since birth. I have the hypermobile form or Ehlers-Danlos (type III)--so it's believed my blood vessels are too stretchy and allow too much blood to stay south of my heart and brain. However, on a good note, my extra stretchy collagen makes my skin look REALLY young--so at 39, I have hardly any wrinkles! Also, I never really was a sun worshiper--hard to do the suntan thing when it involves being outside in the heat.

:rolleyes: Nina

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And...check this thread for the specifics that others have posted about their diagnostic history, age, etc.

http://dinet.ipbhost.com/index.php?showtopic=322

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thisblows...

This is a complex question, that as Steph says, it isn't really known what CAUSES POTS--and there are probably multiple causes. However, for many POTS patients, there are triggers that exacerbate symptoms or make them obvious. Triggers can include virus, pregnancy, allergies etc. If the trigger can be managed or removed, the person can often improve (but not always). I would say that initially I developed, or first noticed POTS symptoms in my early 20's (about 15 years ago), but they weren't terribly bothersome, didn't interfere with exercise or a normal life, and I certainly had no diagnosis. It wasn't until I became pregnant for the first time at age 33 that the symptoms became unmanageable. So, in other words, in my case, pregnancy brought on such strong POTS symptoms that I was disabled by them, however, I probably had the condition subtly for many years prior. However, on treatment, I am now, a year after being diagnosed, functional again, able to exercise, etc. Although not back totally to my pre-preg state of well-being.

Katherine

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I know I posted this once before, but a friend of mine who understands this illness pretty well said that he feels that many of us are predispisitioned to dysautonomia/POTS. Most of us are type A+ personalities. That people like us are constantly pushing ourselves. That every person has a breaking point. His analogy a steel beam that takes so much weight that it eventually bends (sounds pretty impossible when you think about it but it seemed pretty realistic to me, good explanation too.) The body eventually gives way to all the factors against it.

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Guest thisblows

B-Rose...

Type A personalities = POTS. Humm I'm very skeptical on that one. Do you know how many people out there push the **** outta themselves everyday and never develop POTS. POTS would be more common that heart disease if that were true...cuz everyone is stressed and in today's society only the strong people that push themselves will survive. I think that if you push yourself to the max, you may develop a nervous breakdown or have panic attacks...but develop a disease that ***** every thing good in you life away from you indefinitly??? No way in ****! I hope you don't take what your friend said to heart. That was a mean thing to say to a person with a chronic illness!

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I, like Nina, have EDS as a genetic predisposition. Unlike Nina, I have been a sun worshipper all my life, so I'll probably be wrinkled up yet. Ah well... In truth, I feel more symptomatic right after being out in the sun, but I usually notice a decrease in POTS symptoms for a few days after being out in the sun. Maybe just a weird coincidence.

I didn't develop POTS until I was in my 20s...so there were probably other factors involved as well.

Michelle

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Mine came on immediately following pregnancy ... which involved pregnancy-induced hypertension and a small for gestational age baby. I think the hypertension triggered something that caused the POTS. I was 27 when I had my daughter, now 28, and still hoping my POTS goes away!

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Listen, thisblows, I wish you would STOP saying things like "[POTS is ] a disease that ***** every thing good in your life away from you indefinitly..." and other such dramatic statements. I don't know where you're getting your information--certainly not from the posts on this discussion forum! Time to get a clue from the people who live with their symptoms and lead full and happy lives--who sustain successful relationships, parent their children, work their jobs, and contribute to their communities--and who still take time from their busy days to answer the questions of newcomers and lend support to those who had a difficult day.

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My case began after an intense virus (mono/EBV). I began the diagnosis process after passing out while standing one day.

Hope this helps,

Lisa

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Thank you Merrill.

This blows - somedays it's hard for us but we try to remain as positive as humanly possible considering the circumstances. That's not to say that it doesn't get a little overwhelming and that we don't get angry about it too. But one reason this spot is so great for all of us is because of the positive contact and uplifting comments we have with each other.

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I strongly "second" Merrill's statement. I don't feel that POTS has sucked everything good out of my life indefinitely" -- not even when I was in a disabled state, although that was the hardest time in my life, so far. I think if you read through the discussions on this board, you will see that there are many POTS patients for whom this is true, if not for all of us--that we have many good things in our lives. There are definitely far worse conditions out there that people live with, unfortunately. Like I said before, thisblows, for many POTS patients, the very disabling symptoms do not last indefinitely. And also like I said, in my case, I am now back to working and exercising, and I live a normal life. I do take medication and I take extra salt and plenty of fluids, I avoid heat and other situations that can induce symptoms for me.

As briarrose said, it can at times be difficult to handle symptom management, which is why having a support group like this one certainly helps. It helps sometimes just to know that others are going through the same thing you are, and UNDERSTAND. It also helps to learn of treatments and strategies others use to ammeliorate symptoms.

Maintaining a positive, can-do attitude is not always easy when you don't feel just right (or you feel awful). Having a place to come to where others with your condition (or who have loved ones with this condition) support you, share experiences and build you up, like this place, is wonderful. Maintaining a positive tone, as we do on this board, is valuable for this purpose, too.

thisblows, I hope you find our responses and thoughts helpful.

Katherine

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:rolleyes: Please don't be too hard on "thisblows"--she's got every reason to be angry and sad right now. We're all at different points in dealing with our illnesses and deal with them in different ways. Yes, positivity DOES help in coping, but it's a process to get to that point. I'm just saying that being negative and angry is a normal part of the process... I was there once too... and every now and again, I cycle back through it and go through the "this just *****" and "it's not fair" phase.

Please don't take this as a reprimand--I don't mean it that way. It is my hope that this board to be open to all, even those who aren't ready yet to look on the bright side yet...or even just right now.

Nina ;)

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My daughter caught a "virus" on Easter day, 1997. That's all we thought it was until she didn't start getting better. It took the doctors 11 months to diagnose POTS. Now she's battling CFS and a host of other dysautonomias.

Sure, these disorders suck, blow and a host of other words we won't go into. But when I look at this 17 year old child who has toughed it out for the past 7 years (and hopefully will for another 70), who has missed dances and dates and running to the mall and movies and all the other great stuff most teenagers take for granted, no, I can't say it has sucked the life out of her!

She is more alive than most people because most people take these things for granted. She takes nothing for granted and is thankful everyday for the things she can accomplish even if it's only playing a video game with her younger brother.

She has been on and off of homeschooling for the past seven years, yet carries a 4.0 GPA. She's going to her Senior Prom in 2 weeks. She'll start online college classes in the fall. Most weeks, she's able to work 3-4 evenings for 3 hours in an office.

Don't let the people in this forum fool you. Yeah, they get down and sometimes need help more often than others. But have the life "sucked out of them"? No way!

You've come to the right place! These are the people who can help educate you. Who will pick you up when you feel like you can't take another step. They will listen to what a rotten day you've had when their whole week has been rotten. They'll send you hugs when they don't even have the energy to fix themselves something to eat. You're definitely in for a big surprise if you're looking for people who have had the life "sucked out of them"!

I wish you well!

Margaret

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My symptoms started after a virus. I was 17 and just couldnt get over a cold. Then all of the sudden one day I thought I was going to die. My heart was beating out of my chest and I felt so sick to my stomach. My mom took me to the emergency room twice, but they just said that I was having panic attacks. So my mom called by doctor who told her to take me to Childrens Hospital since I wasn't yet over 18. Within 24 hours I had a diagnosis. They put me on florinef and a potassium supplement. Four years later I'm still fighting it every day. I'm a junior in college, married and have my own house. Sure it ***** to be sick, but you just have to take it one day at a time.

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