About POTS

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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8 Responses to “About POTS”

  1. Jamee August 19, 2010 at 7:38 am #

    Love your quote! I was a running too before I started getting sick and am trying to pick it back up but my body isn’t cooperating! Oh how I miss it! I am visiting from Invisible Illness Week!

    • Courtney August 19, 2010 at 9:25 am #

      Thank you 🙂 It is really hard- people just don’t understad why you can’t do thethings you used to be able to do.

  2. It All Changes August 20, 2010 at 5:19 pm #

    Thank you for the information and letting me know about invisible illness week. I have Bipolar Disorder and was diagnosed as a teen. I know it is difficult to not be able to be a regular teen but you have such a positive attitude about it.

    I’m off to write a post for Invisible Illness week to post while I’m on vacation that week.

    • Courtney August 20, 2010 at 5:31 pm #

      You’re welcome and thank you 🙂 I try to keep my blog positive- believe me, I get just as frustrated as everyone else! Keep fighting ❤

  3. Anita September 13, 2010 at 7:41 pm #

    Cou rtney,

    I have had Rheumatoid Arthritis since I was 3 years old, I’m now the tender age of 45. I also missed numerous days of school, couldn’t participate in activities, and was not ‘befriended’ because I was the ‘sick one’. I must say that most young people today are a lot more receptive then they were in my younger years. I have found that if parents educate children instead of scolding, saying ‘don’t stare’, etc., that children are more likely to understand. I did with my daughters, due to my arthritis being hidden. Their grandmother had asthma, so unfortunately a family member with an illness is a mixed blessing.

    I wish you patience and tolerance during this ‘period of your life’ that you are supposed to be wreaking havoc on your parents—LOL. Friends are the ones who help us stand back up not the ones who push us down.

    • Courtney September 13, 2010 at 8:24 pm #

      Thank you so much for your comment 🙂
      God bless,
      -Courtney

  4. Jess September 14, 2010 at 4:33 am #

    Hi I was diagnosed with lupus when I was about 14 but started having “odd” things happening since I was about 6. When the disease first became active I was in a wheelchair for 2-3 months periods but as I learnt what triggered the problems I was able to manage it but then I came across another problem. Everyone started to see it as “Your out of the wheelchair, your fine now” which was completely wrong. My disease got so worse that I had to leave high school and study by distance education and I ended up “shutting down” my life for three years because the majority of people didn’t understand and I was sick of fighting to get them to acknowledge the problems. This went on till just before my 18th birthday, when a old school friend (along with her boyfriend) literally dragged me back into the world. Apart from my eldest brother (and his wife and kids) and my mum, the rest of my family seems to ignore the fact that I’m sick which is made worse by the fact that my cousin has a VISIBLE disease. It is so good to see you living your life despite what has happened to you. Its also good to see you not doing what I did. Good luck, but from what I have read you don’t need it, you seem to be making your own luck 😀

    • Courtney September 14, 2010 at 6:36 pm #

      Thank you so much for reading my story and sharing yours. 🙂 I think one of the toughest things about dealing with an illness, visible or invisible, is surrounding yourself with people who care for you and accept you for who you are. When I was first diagnosed, there definitely were some people who made rude, snide comments, so I simply broke off ties with them. It was difficult, but I think it’s very important to have a support network of people who are there to bring you up, not put you down. I’m glad your brother and his family and your mom have helped you through this, and since it’s impossible to completely disconnect from your family, you need to desensitize yourself to their opinions. You DO have an illness- a doctor ran tests and proved it. Do you trust their opinions more than your doctor’s? Of course not. Don’t be afraid to stand up to someone and tell them, “I’m not feeling well, and whether you agree with me or not, I am sick and I need to ____.” Advocate for yourself, and know that you have others there to back you up. Best wishes,
      -Courtney

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