My Journey With POTS (Postural Orthostatic Tachycardia Syndrome)

This is the story of my journey of discovering that I have Postural Orthostatic Tachycardia Syndrome (POTS). If you have POTS, think you may have POTS, or know someone who does, please comment below! I'm in this with you. It's not an easy journey, but it's all about finding support and help.
Connect with me on Instagram! @caseytylercreative

[@maggiegoldermann3600]

I just got diagnosed last month after 7 years of being told it was anxiety or I was making it up. I am so happy you were able to get a diagnosis!

[@CaseyTylerCovers]

Wow!! Maggie, I'm so glad you were able to get a diagnosis as well. That's such a long time!! So glad we can bring awareness to those who may be experiencing the same, knowing it's not all in their head. Thanks so much for watching!

[@alyssagwynne421]

My heart breaks for you 💔 I've been sick for 2 years. No answers. Just had another Holter monitor..got the call today..."Normal" I almost cried 😢 I am so frustrated. It's such a rough road. 😫 sending you all the love and healing ❤️

[@paulpantorilla6121]

120 is about the same for my heart rate. stairs gets me up around 135+. Corvid was my trigger. left me with what feels like brain damage, and a nonfunctional body. I have the sensation of feeling drunk almost all day. hang in there everyone. I sure as more people get taken out of the work force we will see government bullied by the rich to do something substantial.

[@alyssagwynne421]

I'm on year 2. So frustrating! Sometimes my heart doesn't jump up 30 beats but it's literally taken my life from me. Every day seems to be a struggle. At night I feel like I have electricity flowing through my body. It's so hard to find drs who will fight for you 😔 I've lost hope over the last few years 😔 I'm lost girlfriend! I'm glad you advocated for yourself ♡ proud of you! I guess I just have to keep insisting it's not anxiety because I know me..and this just decided one day it was going to take everything from me. I'd love to chat Sometime! 💕 sending you all the love! Thank you for bringing this to light ✨️ 🙏

[@bugleaf9603]

i felt this. im only 18 but ive been dealing with the symptoms since i was 8 years old. i only JUST got diagnosed less than two months ago. the medication im on has given me more relief than ive ever had in my life. i still have some adjustments to make with it because im still having problems but, im doing so much better. im glad you are too

[@vocalsbymohsin]

Whats the medicine and what symptom does it cover?

[@bugleaf9603]

@@vocalsbymohsin metoprolol. it mostly just helps with my heart rate, the other big one was my air hunger (though its still very bad, its not as bad). to an extent, it helps my faint feeling spell as well. other than that, my other symptoms are still pretty bad. regardless, metoprolol has given me a lot of relief. still struggling a lot, but hopefully that changes

[@bettyboop17d]

Thank you. Just made an appt with a doctor specializing in pots. Its great to see you can still thrive with diagnosis. Much prayers to you 🙏

[@CaseyTylerCovers]

Amazing!! Yes, it’s definitely manageable. Praying you get answers!

[@bethanyspence4156]

You did a fantastic job with your storytelling, and with explaining what POTS is! Thank you for sharing. I was recently diagnosed with POTS, and I’m super thankful my doctor was already familiar with it and I received a quick diagnosis through a tilt table test.

[@CaseyTylerCovers]

Thank you so much!! That’s amazing. I’m so glad you were able to get answers quickly!

[@vocalsbymohsin]

Pls give me your doctor's number?

[@s.chou9]

im SO sure i have it, for the past 3 years ive been going through all these horrible symptoms, it has really changed my life 😢 i miss the old me, its sooo frustrating trying to get doctors to listen and take you seriously, ive had enough and just want my life back

[@justritasimi]

I've had POTS for 18 years....Stay very hydrated..avoid blood pressure lowering juices ( found out the hard way juicing veggies is diuretic). Fludrocortisone helps .

[@greensmoothieparty]

** there are some people that recommend trying to increase dietary magnesium intake ** Magnesium is an essential mineral for health; it is required for hundreds of anti-aging reactions. Unfortunately, at least half of the people in the United States do not meet their minimal recommended magnesium intake. Most doctors don't measure magnesium levels unless their patients are in the hospital, as it requires a special test (red blood cell magnesium level or RBC Mg). Each year, I see several patients in my office with symptoms related to a magnesium deficiency. Cindy was one such patient. She came for her first visit, complaining of daily palpitations. She was a full-time homemaker with a husband and three teenage children - twin 15-year-old boys and a 13-year-old girl. At age 43, she was very pretty, slender, but not fit. She felt like a full-time chauffeur, driving her children to and from school events seven days a week. They had only one weekly family meal, on Sundays. The other evenings, the family mostly relied on fast food. Cindy drank a pot of coffee in the morning to get going, and munched on a white flour bagel with cream cheese for breakfast while driving the kids to school. Lunch was something simple, like canned chicken noodle soup. She ran errands, cleaned the house, shopped, paid bills, and did other chores until she picked up the kids from school. Her husband had a great new job, but he was working 50 to 60 hours a week and he didn't help much at home. Cindy didn't seem worried by her palpitations, even though sometimes they would continue in fast runs for 10 to 15 minutes. They didn't give her chest pains, nausea, or shortness of breath. After looking up symptoms of a heart attack online, she didn't think it was an issue, and figured it was probably due to the coffee - which she didn't want to give up. During her assessment, Cindy's history was noteworthy for bad constipation and frequent muscle cramps. Her physical exam was normal, but her food diary revealed that she was grossly deficient for nearly every nutrient. She certainly frightened me during the stress treadmill test I use to check for an abnormal heart rhythm. Her heart rate took off at 180 beats per minute, accompanied with a worrisome electrocardiogram pattern, even though she was only walking briskly. When we halted the stress test, it took 20 minutes for her heart to come back to normal. Fortunately, Cindy's laboratory studies clarified why she had this dangerous heart rhythm problem; they were not just mere palpitations. Cindy's magnesium levels were excessively low. This can lead to a rare but fatal heart condition - basically sudden death. The combination of poor nutrition and large quantities of coffee had depleted her of magnesium, and her heart couldn't function properly without it. When magnesium supplements and other foods were prescribed to restore most of her key deficiencies, Cindy's palpitation problems were solved. *from the book The 30-Day Heart Tune-Up by Dr. Steven Masley (2014)

[@jmsdeco]

Good video. I've never heard of pots before. I hope you're doing well.

[@CaseyTylerCovers]

thanks so much!

[@BrainPlastic]

Hi! Thank you for sharing! Have you spoke to a chiropractic neurologist? They know well about pots from my experience

[@christinagurrola6100]

A brisk walk for me is about 120-130

[@lorettazwarts4847]

Does anyone also go into a rapid heartbeat when the weather is hot and humid? My heart rate speeds up to the point that my nervous system speeds up and I am nervous and panicky. Also I get lightheaded and weak and shakey.When I'm cooled off and finally calm down, I am completely exhausted. Anyone else out there have this. I am a caregiver so it's hard to take care of someone else and myself.

[@alternativewitchyunicorn]

I’m going thru the process to see if I have pots now. My symptoms have become pretty disabling and annoying omg. Thanks for sharing! I get presyncope but not syncope so I haven’t fainted yet thank god

[@margaritasaborio4475]

That was exactly My problem. Since I never hace fainted anda fainting is one of the Main symptoms of dysautonomia, so in the doctors opinión I could not hace that.

[@margaritasaborio4475]

Life changers. Vitamin B complex, Inositol and electrolytes. I just cannot drink plain water.

[@isalsaurusthelemon6512]

my heart rate doesn’t always increase loads, but i get a lot of palpitations when it doesn’t jump up and every other symptom applies. do you think it’s worth trying to get a proper dx?

[@hurricane_valence]

Did you ever get the tilt table test done??

[@AI-to2ri]

Hi, please try Over the Counter 100mcg Vitamin B1, it made a huge difference for me.

[@CaseyTylerCovers]

amazing! Will definitely have to try this

[@jumana9999]

thank you for sharing!!! you didn’t mention anything about your blood pressure? was it normal?

[@margaritasaborio4475]

I just realized also that whole wheat bred triggees my symptoms and I cannot understand why. It is only tha type of btead and it makes me feel completely off balance. I cannot tolerate magnesium either.

[@bwil5989]

I am not sure if I have POTS or not if someone wants to chime in…basically 16 weeks ago I got a sinus infection (Atleast I thought) , during it I got hit with severe brain fog for the first time in my life. After taking meds for the infection, my sinuses got better but brain fog never went away. I kept pushing it off but randomly since then I get very bad brain fog and lightheaded and feel like I am gonna pass out. It is nearly impossible for me to wake up when my alarm goes off cuz I am so exhausted. I lift 6 days a week and am a bodybuilder so I am relatively healthy. I am 21 years old, and all my blood work came back fine. Also a hot shower seems to activate it, as well as if I have one or two beers say I get really light headed and dizzy. What do you think?

[@CaseyTylerCovers]

Hi there! Thanks so much for sharing your story. It definitely could be POTS--I'd reach out to your doctor to see if you can get a referral with a cardiologist! They would be able to better serve you than I would. So sorry you're feeling this way though! You aren't alone!

[@arthurhill7722]

I'm older but have the same symptoms. Fainted after going into a Jacuzzi. Dysautonomia.

[@ThinBlueLaneRVLife]

Hi Casey Tyler

[@Roxi78]

What is the name of the medication you are taking? Thank you for sharing your story. I have POTS as well and I take Inderal and Ivabrafine but still feel very dizzy and not able to function normally😢

[@CaseyTylerCovers]

So sorry! I take 2.5 milligrams of Midodrine every 6 hours or so

[@Roxi78]

Thank you 🙏🏻 I’ll look that up, maybe it would be an alternative for me!

[@risecopeman5409]

Did you have any gastrointestinal symtoms?

[@CaseyTylerCovers]

Yes, definitely! Bouts of nausea, constipation, etc.

[@risecopeman5409]

@@CaseyTylerCovers Thanks for respinding. My daughter has suddenly onset ( or dramatic worsening). Maybe post viral. Lots of other weird symptoms, too. Considering Mididrone as needed. Thank you again.

[@CaseyTylerCovers]

@@risecopeman5409 I'm so sorry. You can also have her do an at home POTS test if you have a heartrate monitor! That's what helped me figure it out!

[@RobdeKlerk-qg6lc]

Which medication my lady ? ​@CaseyTylerCovers