😎Dropping it like it's POTS😎

Drop it like it’s P.O.T.S.

Hello everyone! I’ve created this post as there seems to be quite a few people who have inquired about POTS and shared their stories. I wanted to create a post where people could be informed, stories can be shared, and questions can be asked. I apologize for the long post but I tried to hit all the main points from beginning to present time of what those with POTS go through. ***Drop it like it’s POTS is one of my favorite sayings as with POTS you literally could drop to the ground at any second unconscious, even if you were fine a few seconds before***

What is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome which is a type of dysautonomia. POTS is specifically a disorder of the autonomic nervous system (and is seen as an autoimmune disorder) meaning it affects everything from heart rate, blood pooling, movement of the digestive system, and body temperature to name a few. The main translation of POTS is the following:

• Postural = Relating to, or of

• Orthostatic = Upright posture

• Tachycardia = Abnormally rapid heart rate

• Syndrome = Group of symptoms that occur together

So to put that all together, POTS is to do with the symptoms a patient experiences through the abnormally high heart rate due to sitting upright. This can be from laying to sitting, sitting to standing, running, and walking.

The three different types of POTS are:

1. Neuropathic - Loss of nerve supply leads to poor blood vessel muscles, mainly in legs and core body

2. Hyperadrenergic - Overactivity of the sympathetic nervous system (Increases heart rate, respiration, and blood pressure + diaphoresis and hyperthermia)

3. Low blood Volume - Reduced blood volume that causes similar symptoms that may overlap in neuropathic and hyperadrenergic POTS

What are the causes and who is at risk for developing POTS?

• Women ages 13-50

• After illness, infection, certain autoimmune conditions, pregnancy, and trauma

What are common symptoms of POTS? (*Varies from patient to patient)

• High/low blood pressure and heart rate

• Chest pain

• Dizziness/lightheadedness (Common when standing or walking)

• Fainting or near-fainting

• Fatigue

• Temperature deregulation (hot or cold, or both)

• Brain fog (trouble focusing or remembering)

• Vision changes

• Headaches

• Body aches (could be flu like symptoms)

• Insomnia

• Tremors

• Exercise intolerance

How to Diagnose?

It often takes patients 4+ years to get diagnosed due to having to rule everything else out first. The most common test to get a diagnosis is a tilt table test (TTT). A TTT measures ones heart rate and blood pressure as your posture changes position. A blood and urine test can also be done to test for POTS and other conditions that mimic it. Another popular way is a QSART test which measures the autonomic nerves that control sweating. An autonomic breathing test can help measure the blood rate and pressure response during exercise.

What are the treatments?

Unfortunately, there is no cure for POTS yet which means it is all about treating the symptoms. This is done through medications (i.e. beta blockers), compression stockings, salt, electrolytes, cardiac rehab program, diet/nutrition, exercise, and sleep.

My Personal Story

When I started high school I was just coming out of a TBI(due to a snow tubing accident) and really felt I had my life on track. In a matter of weeks I randomly started passing out and my school and I had no clue as to what was causing it. It only continued to get worse and I even started having seizures. What used to be a once a month thing turned into an everyday issue. I went from doctor to doctor. All my tests came back fine. No one had answers for me. It was hard because people didn’t believe me, but I was the person feeling the pain. There isn’t anything I wouldn’t do to stop it. I begged my doctor to run a TTT as my physical therapist who was helping me recover from the TBI mentioned POTS to me. She had had a patient who had similar symptoms as I did. I asked my doctor for two years to run the test but he refused to. Finally after 4 years I had a new doctor who listened to me. She agreed to run the test. I did not enjoy the QSART testing but that was mainly because I cannot detect temperature so when I was just starting to feel warm I was actually overheated. (Summer and I are not friends to say the least). Within 24 hours my test was reviewed and came back positive for POTS. It was a relief having an answer but it was also a realization that my life was going to be changed forever.

Since being diagnosed in 2019 I have struggled every day. Many days I cannot go to classes because I am too weak to lift my head up off my pillow. I work twice as hard as others to keep my grades up while managing POTS and my other health conditions. I’ve changed my diet a thousand times to find the right balance so my body can break down food without making me feel ill. I have to drink at least 2-3 gallons of water a day and consume eight meals a day. These 8 meals = an average person’s 3 meals in a day. With POTS the digestive system has a hard time breaking down food so this breaks the portion up into smaller meals to where it can break it down while still maintaining a certain amount of calories.

There are many other things that I go through but if anyone is interested I encourage you to listen to the song “I Believe In You” by JJ Heller as it accurately depicts what I go through and what many POTS patients go through. “Dysautonomia” by Spoken Word is also another good one to listen to to help understand what these patients go through as it is a physical but also mental journey.

I’ve shared my story because I know there are others out there who have POTS. We are not alone. I have a voice and I chose to use it and bring awareness to this condition. POTS doesn’t define my life, it is my life. It has shaped me into the person I am becoming and while some see it as a negative condition I prefer to look at it as “Ok world, you’ve thrown this at me but I succeeded, what else do you have?” Everyone has a right to feel different about their condition. Some days I am very positive and other days I feel it is the worst thing in the world. POTS is an invisible illness until you see someone going through a symptom, but I hope by reading this is makes people more aware that just because we may not be able to see something it doesn’t mean the person isn’t going through something.

I’ve created this forum so that questions can be asked and experiences can be shared, so if you or someone you know has POTS feel free to share with the community! Also, if anyone has any questions feel free to ask!

Tagging some people who have made my journey with POTS easier while balancing 7 Cup roles and supported me through it all (I will probably miss a few names, so please don’t take offense - there are just so many of you): @ASilentObserver @Asher @FrenchToastClub @SparkyGizmo @DonaldDraper @Mango3 @Ethan @Hope @AffyAvo @MyNameIsNicole @Azalea98 @Bubblegumwings1234 @29amy @Clarrisse29 @hopezzy @CheeryMango @yenturo @AriadneLove @azuladragon34 @cheerfulIceCream @brilliantTurtle89 @Chevy81 @courageousheart96 @GoldenRuleJG @LavenderHere @lueurspace @RainbowdogsofParadise @blissart @blissfulForest7074 @Fristo @HopieRemi @Sunisshiningandsoareyou @emotionalTalker2260

References:

https://www.standinguptopots.org/livingwithpots/what-is-pots

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots