My Heart Condition
So, I've mentioned my heart condition to a few people on here, and I've come to realize that I'm pretty shit at explaining it.
First and foremost, I will say that it is not deadly, so nobody freak out about that. It's literally just a daily annoyance.
Secondly, here in an article that explains what exactly is it way better than I can. I took out a few things so it isn't super long, but I'll link the full thing at the end if you want to give it a read.
Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted. POTS is often diagnosed by a Tilt Table Test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the supine (laying down) and standing up position at 2, 5 and 10 minute intervals. Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.
Signs and Symptoms
While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate. It is fairly common for POTS patients to have a drop in blood pressure upon standing, but some POTS patients have no change or even an increase in blood pressure upon standing.1 POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation.3 Approximately 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath. Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.
Quality-of-Life and Disability
Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited. Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. Approximately 25% of POTS patients are disabled and unable to work. Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.
Who Develops POTS?
POTS can strike any age, gender or race, but it is most often seen in women of child bearing age (between the ages of 15 and 50). Men and boys can develop it as well, but approximately 80% of patients are female.
What Causes POTS?
POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS. Idiopathic simply means "of an unknown origin."
Treatment
Each patient is different, thus consulting with a physician who has experience in treating autonomic disorders is important. The most common treatments for POTS include increasing fluid intake to 2-3 liters per day; increasing salt consumption to 3,000 mg to 10,000 mg per day; wearing compression stockings; raising the head of the bed (to conserve blood volume); reclined exercises such as rowing, recumbent bicycling and swimming; a healthy diet; avoiding substances and situations that worsen orthostatic symptoms; and finally, the addition of medications meant to improve symptoms. Many different medications are used to treat POTS, such as Fludrocortisone, Beta Blockers, Midodrine, Clonidine, Pyridostigmine, Benzodiazepines, SSRIs, SNRIs, Erythropoietin and Octreotide. If an underlying cause of the POTS symptoms can be identified, treating the underlying cause is very important as well.
Prognosis
Currently, there is no cure for POTS, however researchers believe that some patients will see an improvement in symptoms over time. Detailed long term follow up studies on the course of POTS are sparse, but Dysautonomia International is working with researchers to begin to collect long term follow up data. With proper lifestyle adjustments, exercise, diet and medical treatments, many patients see an improvement in their quality of life.1 If an underlying cause can be identified, and if that cause is treatable, the POTS symptoms may subside. While the prognosis is good for most patients, researchers have noted that some patients will not improve and may actually worsen over time.1
The longest follow-up study done to date comes from Mayo Clinic. Mayo Clinic did a survey of their pediatric POTS patients seen between 2003 and 2010. Of those who responded to the survey, 18.2% reported a complete resolution of their POTS symptoms, while 52.8% reported persistent but improved symptoms. Male patients were twice as likely to report recovery. The average survey respondent had been diagnosed for about 5 years. Both patients who fully recovered and those who did not had mental health scores similar to the national norm.
http://www.dysautonomiainternational.org/page.php?ID=30
And thats pretty much it. I have P.O.T.S, and the cause of mine is unknown. I do the water and salt treatment, which works pretty well, but I still have daily issues. I'm typically fine as long as I don't get up and down too often or two quickly, or I'm not standing up for long periods of time. Some days, the water and salt don't help, so those are the days where I just kinda have to lay around and hope my family doesn't need to go anywhere, or I don't have to get up. (Because on the days where they don't help, my mom and older brother just assume I decided not to drink water that day or the day before and both act condescending)
Yup. If you want to ask me any questions after reading this, go right ahead.
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