Tag Archives: no cure

What exactly is POTS!!!!!!!


Dysautonomia is an umbrella-term used to define conditions caused by a malfunctioning autonomic nervous system. Postural Orthostatic Tachycardia Syndrome (POTS) is a form of Dysautonomia. POTS is most often seen in women of child-bearing age but can and does affect people of all different ages, genders, and races. Just like all chronic illnesses, the degree of severity can range from mild to completely disabling. Approximately 25% of patients with POTS cannot work, go to school, or keep up with daily tasks due to their condition. The autonomic nervous system is responsible for every bodily function you do not have to think about at this very moment. You do not have to tell your heart to beat, nor do you have to instruct your lungs to inhale or exhale, as both are done automatically. With POTS, there is dysfunction with these automatic functions. The autonomic nervous system is responsible for so many bodily functions which is why no two patients with POTS are ever exactly the same.

The symptoms seen in POTS can vary greatly but an increase in 30+ bpm (40+ in adolescents), or a HR that goes above 120bpm, within the first 10 minutes of standing is seen in all patients. This increase in heart rate is responsible for the “T” in POTS: Tachycardia. Tachycardia is defined as an abnormally high heart rate. The average resting heart rate is anywhere from 60-90 (some athletes experience bradycardia, or low heart rate). This average resting heart rate would remain the same when going from sitting to standing in a healthy individual, or would change slightly. With POTS, the heart rate increases as the body’s way of trying to compensate for the blood that is starting to pool in the lower extremities. Our heart rates increase to try to work extra hard to pump our blood back to our heads, with little success.

This increase in heart rate is diagnostic criteria for POTS and is seen with or without a decrease in blood pressure. It is a common myth that patients with POTS always have low blood pressure but that’s not accurate. In fact, the increase in heart rate can be accompanied with a stable blood pressure, a drop in blood pressure, or even an increase in blood pressure. Orthostatic hypotension is a different form of Dysautonomia in which the blood pressure drops when standing but the heart rate remains the same.

Although POTS is often characterized as a fainting disorder, it can more accurately be described as a presyncope (the feeling of lightheadedness, dizziness, and confusion experienced right before one faints) condition. In fact, fainting and a decrease in blood pressure are not diagnostic criteria for POTS.
POTS was termed in 1993 but several medical and historical documents describe patients with POTS symptoms under different diagnoses including “soldier’s heart.” Current research is suggesting that POTS is an autoimmune condition. An autoimmune condition means that the body’s immune system is attacking the body itself instead of intruding threats. More research is necessary in order to understand more about POTS and eventually find a cure!

For me personally, I have experienced all the symptoms, but first started with Vertigo and ear pain, hearing loss, visual changes, dizziness, nausea vomiting, Took 57 Dr’s to correctly diagnose me correctly, Started with autoimmune disease of the ear, then it seemed it snow balled out of control as if the autoimmune disease was attacking my Brain and then my body. I had Chemo with zero results and IVIG which is intravenous immunoglobulin for 9 months 5 days a week 7 hours a day. Didn’t work! So as of now there is no cure just symptom control.

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The EPIC Foundation Challenge.

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Are you proud of your illness? Crazy question!

A man texted me on Instagram and said what illness do you have? I answered, he actually said to me “are you proud of my illness” You make it come across that way, I was upset, shocked but the text got me thinking after blocking him is How could the title of a illness make someone believe you are proud of your illness. The saddest thing is we really are not proud, a lot of aspects can be embarrassing, I want to be healthy, help others and if you don’t hear me crying through your text, what you need to understand, we are alone, we cry alone, we don’t want to bother anyone, and if you cry, your weak or family reads you are suicidal. I do cry but not to others, I pray God will help me find a cure, I know there is a purpose, but unlike other diseases, we don’t have ribbons, pins, t shirts, parades, fundraisers, Everything when you tell your illness to someone, you get the sad face or the look of your going to die. or everyone has a magic pill or shake that will cure you, I even wrote to John of God with my illness and my photo. I received a bottle of something, but I couldn’t take something that there isn’t a list of what is in it. I know people who have had invisible surgeries? they will buy every supplement that are promised to cure them. I look at it is If it cures everything, why aren’t disease being cured. Living with a disease that has taken your life away from joy, working, family, friends, financially cost so much on copays and hospital stays, then there are the mistakes which I don’t believe in suing but I believe If the error was done unintentionally than I need to let then know so they can learn and also write a heart felt letter letting them know. That I am not a disease, I am a mother, daughter, sister, friend and its for these reasons I am letting them know. I am human, not a chart or Medical record number. Not to put anyone down, to educate them. Never once to this day have I gotten a phone call or letter of apology even knowing I had a good case to sue them. So when someone asks me am I proud of my illness, I can say no, Never and wouldn’t wish this is on anyone. Sometimes I wonder what I did or why me, then I realize Why not me! What is my lesson, what is my purpose and that is why I help so many others. My dream Is a cure that may not ever come, but I still would like to live my life and pursue my photography so I can donate to non profits. But with that comes something you can go in he hills with. Like a ATV not even knew, just safe and runs. but on disability you don’t have extra money for stuff, I cut my own hair, do my own nails, clean my own house, 1 room a day or I can’t walk the next day. So when people say you look healthy you must be recovery, It’s the mask. The mask of feeling well, It takes me a couple hours to get ready for occasion and then I pay for days. There are people out there far sicker than I but I don’t have a cure, that takes the hope away. And as simple as a ATV or lunch on a outside patio seems so little to others, they are dreams for others who just want to live with the simple things to make our life a little easier, more pleasant with more enjoyment, not a trip t Disney land, or Europe just the simple things.

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