PoTS and Me: An Interview with @wonderfulRainbow817

Hello, thank you for taking the time with me to explore the topic of Postural Tachycardia Syndrome (PoTS). Today I interview @wonderfulrainbow817, who is one of our amazing listeners/internship mentors/forum supporter/listener coach among many other roles. I do want to apologise for the delay with this interview, but tadaaaaah, here it is¯\_(ツ)_/¯

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Question (1): To somebody who has never heard of this condition before, what is PoTS?

Answer: POTS is Postural Orthostatic Tachycardia Syndrome. To put it simply it means there is a change in blood pressure/heart rate when changing orthostatic levels (i.e. laying to sitting, sitting to standing, or walking up/down a hill)

Question (2): Did you know about PoTS even before you got the diagnosis?

Answer: I did know about POTS before I got diagnosed. I was at physical therapy for a concussion and they noticed I’d pass out when I had my head turned certain ways. I described all my symptoms and she said I think you have POTS and need a tilt table test. It took the doctors 2-3 years to agree to run the test unfortunately because it would have saved a lot of time.

Question (3): How has living with PoTS affected your day to day activities?

Answer: It has debilitated my day to day activities from getting out of bed to laying down at night. I have to lay with my legs over the side of the bed for 5 minutes before I sit up so my blood flow returns to normal. Then I sit up and drink a glass of water before standing up. If I want to do laundry or shower I have to drink more water as heat wears me down since my body doesn’t regulate it. If I have plans to go out with friends sometimes I have to say no last minute because I can be fine one minute and the next I am passed out on the floor. When I pass out it wipes everything out of me so I have to rest for a while afterwards.

Question (4): What adaptations have you had to make with your life living with PoTS?

Answer: The biggest adaptation has been my diet. I have had to cut out a lot of carbs and eat smaller, frequent meals. 2-3 of my meals are equal to 0.75 of an average person’s meal, so by the end of the day, I am eating 8-10 different times. My diet is mainly paleo - gluten-free, also dairy-free (which doesn’t mean I don’t like to splurge on chocolate cake and vanilla ice cream sometimes :)). Caffeine and alcohol are a huge no-no for a lot of people with POTS. One ounce of chocolate or one sip of alcohol/wine can make me nauseous all day and leave me sick the next day.

In terms of school and going out with friends I have adaptations there. If I need to miss class due to illness I can as long as I tune in virtually. This is huge for me as walking to class may be unsafe if I feel faint - never want to fall and hit my head mid-walk. I also get extensions on my assignments when need be if I had to go to the ER and need a 24-hour extension. My friends are really understanding. We always make sure to have something soft for my head if I were to have a seizure/fall. They have all sat down with me to understand my condition but also ask questions when they are unsure of something. When I need to cancel at the last minute, they understand and respect my decision. Sometimes they will even come to my house to watch a movie instead since I wasn’t well enough to go out.

Question (5): What have you learned about yourself since living with PoTS?

Answer: I have learned I am strong and more stubborn than I ever realized. Not always a great thing but in this case, it is a good thing because I tolerate the pain better to get the things done. I used to let things get in my way and stop me but I don’t do that now.

Question (6): Despite PoTS having no cure, are there any ways you manage the condition?

Answer: I manage each symptom on its own. It is a very hard balance between medications, herbal supplements, exercise, etc. After 6 years I still don’t have a perfect balance.

Question (7): Have you found/been part of an online or in-person community of people with PoTS? What have you learnt from them?

Answer: I have joined support groups and they have given tips and suggestions on how to manage pain, doctors to see, and just support each other through our struggles. I also love following some major celebrities/spouses who have POTS and seeing how they go through life with their POTS journey.

Question (8): Please tell us a bit about you. What hobbies or activities do you enjoy?

Answer: I love binge-watching TV shows, cooking/baking, sleeping, puzzle building, and colouring adult colouring books.

Question (9): Do you have any tips or advice to share with those who are learning to accommodate living with PoTS

Answer: Keep reading and trying new methods for everything. Advocating and becoming knowledgeable is the best way in my opinion to figure out how to manage symptoms/pain. Everyone reacts differently to treatments so what may work for one may not for another which is why you have to keep trying until you find the solution. Don’t get discouraged because it will take years and years to get near the “solution”.

Question (10): Would you like to add/include anything?

Answer: I always encourage others to go watch the video on YouTube of JJ Heller’s “I Believe In You” as it is an accurate depiction of what someone with POTS goes through.

Thank you so much for your time, I am grateful that you’ve given us more knowledge about Postural Tachycardia Syndrome.

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