What is POTS?

11 Aug

I mention POTS often on this site, so this page is to let you know what it is.  It stands for postural orthostatic tachycardia syndrome- a nervous system disorder characterized by excessive increase in heart rate upon standing.  People who have POTS use 3x more energy to stand up than people who don’t.

It can be caused by…

  • A virus
  • Pregnancy
  • Absolutely nothing at all (I fall into this category)

It is not contagious.  It is not curable.  It usually goes away on its own, though this takes years.  In the meantime, it can be treated with…

  • A high-salt diet
  • Increased fluid intake
  • Medication

I am currently using all three of these treatment methods.  They ensure that I don’t faint or convulse, but my symptoms aren’t entirely gone.  I often get dizzy and lightheaded, and have frequent digestive problems.  It’s really annoying and limits my activity.  Standing or sitting in a chair for a long time aggravates my symptoms.

Every case is different, and they range in severity.  My case is fairly mild.  I was misdiagnosed with epilepsy before being diagnosed with POTS.  I was on anti-convulsant medication for approximately 8 months, but it didn’t work.  This led doctors to question whether I really had epilepsy.  Further tests revealed my seizures were caused by my nervous system and heart, not my brain.  This is an extremely rare manifestation of POTS, but thankfully I have been seizure-free for over a year.

 

 

Here’s “30 Things About My Invisible Illness” presented by National Invisible Chronic Illness Week, which is September 13-19.  Reach out to someone you know who has a chronic condition- not just during that week, but always! 🙂

1. The illness I live with is: Postural orthostatic tachycardia syndrome
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I’ve had frequent stomach aches since I was little, but the symptoms got really, really bad in February of 2009.
4. The biggest adjustment I’ve had to make is: Not being able to do all the things I want to do- I’m just too tired.
5. Most people assume: I’m “faking it” or “just trying to get out of things”.  Umm… NO!
6. The hardest part about mornings are: Being soooo tired
7. My favorite medical TV show is: Medical Incredible, thought I also like NICU.  Pretty much everything on Discovery Health channel!
8. A gadget I couldn’t live without is: My heart rate monitor… so useful when exercising.
9. The hardest part about nights are: Having to go to bed so early- I want to be a regular teenager and be able to stay up super late!
10. Each day I take 9 pills & vitamins.

11. Regarding alternative treatments I: Don’t use them, or know if there’s any out there.  A lot of POTS treatment is “natural” regardless- like drinking extra water and consuming extra salt.
12. If I had to choose between an invisible illness or visible I would choose: Neither.  Both are challenging in their own ways.
13. Regarding school: I can usually stay the full day, but sometimes I get so dizzy that I have to leave mid-afternoon.
14. People would be surprised to know: That I even have this condition.  I’m pretty open about it, but sometimes I’ll nearly faint during class and people will be shocked that I have this weird sickness.
15. The hardest thing to accept about my new reality has been: Knowing that it won’t go away for at least a few years.  I want to enjoy my life as a teenager, and while POTS doesn’t make that impossible, it does make it much more difficult.
16. Something I never thought I could do with my illness that I did was: Get my blood drawn without freaking out.  Haha, I’ve had it drawn so many times in the past year and a half, I could probably open a blood bank 🙂
17. The commercials about my illness: Don’t exist.  I didn’t even know POTS existed until I was diagnosed, and neither has anyone I know.
18. Something I really miss doing since I was diagnosed is: RUNNING FAR AND FAST.  I can’t emphasize this enough.  I used to be a varsity cross-country runner who could run 12 miles at a time, but now I can’t.  It’s really hard. 😦
19. It was really hard to have to give up: Again, running
20. A new hobby I have taken up since my diagnosis is: Baking… I already did it before my diagnosis, but I do more now!
21. If I could have one day of feeling normal again I would: Run as far as
I possibly can!
22. My illness has taught me: Life isn’t perfect or fair.  Deal with it.
23. Want to know a secret? One thing people say that gets under my skin is: “Why do you always leave early?”  “You don’t look sick!”  I guess that’s two things, and there are many more.
24. But I love it when people: Just ask if I’m okay. 🙂
25. My favorite motto, scripture, quote that gets me through tough times is: “Strength doesn’t come from physical capacity.  It comes from an indomitable will.”
26. When someone is diagnosed I’d like to tell them: It’s going to be hard.  But focus on the positives in life.
27. Something that has surprised me about living with an illness is: How angry you get.  Sure, people may say they’re “fine with their illness” and whatnot, but deep down they wish it would go away!
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and ask how I was doing.  I didn’t even know the girl well, but it meant so much that she took the time to do that.
29. I’m involved with Invisible Illness Week because: I feel it’s important that everyone who’s hurting be recognized.  Someone you’re close to may have an invisible condition, and you might not know it.
30. The fact that you read this list makes me feel: Extremely happy 😀

 

If you have any questions, I’d be happy to answer them!

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