Learn the causes, symptoms, treatments, and recovery expectations when dealing with POTS.
|"This sucks, I hate standing."
If you've ever thought that, and really meant it, then you might be like me. You might be dealing with dysautonomia. Dysautonomia is a condition that affects the autonomic nervous system. It has a few different subtypes; I have Postural Orthostatic Tachycardia Syndrome, aka POTS, aka "oh my god, why am I so hot, why can't I stand up, why is the room spinning, who turned off the lights, I want my caffeine back" syndrome. In this hub, I plan to explain POTS, something doctors might not know of, something not many understand and something that can be scary and annoying and frustrating. I hope this helps you.
Causes and Overview
POTS often occurs in patients after prolonged bed-rest, an infection, pregnancy, immunizations, sepsis, surgery, or trauma. There is a 5:1 ratio of girls to boys, and it often occurs during adolescence.
POTS can be confusing and vague. I was first told it messed with my nervous system, and that my blood pressure couldn't transition upon standing, which is true, but sickeningly vague. About two years later, I found out what was really making me feel bad. The basis of the condition that makes your head hurt, heart race, and stomach ache, is the pooling of blood in dependent areas when upright. That means that while some parts of your body are high on oxygen, plasma, and nutrients, others are lacking. Thus, while your heart is being overworked, you might have trouble digesting, and when your stomach is in fine shape, it could get hard to breathe. It's all about balance with POTS, and not having that balance in your system can cause a lot of problems.
The defining symptom of POTS is an increased heart rate upon standing. There are many other symptoms, though. Such as:
fainting or near fainting
shortness of breath
discomfort or pain in the chest
cold hands and feet
brain fog (lack of concentration)
Those are a few of the symptoms associated with POTS, dysautonomia. These symptoms are potentially treatable. They are also potentially disabling. But, we'll start with treatment first.
Treatment for 90% of POTS patients is non-medical. Most can be treated with a strict regimen of an increased liquid and salt intake, regular exercise, lots of sleep, the elimination of caffeine, and eating frequent, small meals. Try to carry around a big water bottle and keep salty snacks handy (sports drinks are awesome for liquid and sodium intake, plus, they can be great for headaches). Join a local gym, especially if it has a pool (swimming can help a lot, but for some can aggravate symptoms), have a set bedtime, and snack baby snack.
Exercise is extremely important for POTS patience. It sucks, I know. But, even if you feel like you can't stand, exercise is essential to diminishing symptoms and recovering. Without proper muscle tissue, only your skeletal system is left to transfer your blood.
Treatment for the other 10% is a presumed stab at what medications might make the patient asymptomatic. Which, with something like POTS where symptoms vary from day to day and can change with your lifestyle, can go on not working for years until a doctor finally finds the right amount of this and the perfect amount of that. My own personal frustration came when I was first handed medication. I had a medication that made me stay awake, a medication to help me sleep, something to help my dizziness, something for my head that had a side effect of making me dizzy, and some extra something that made me drowsy.
A tip to anyone taking medication, know what it's supposed to do. It may be obvious, but if you're a kid like me, it's hard to keep track of things you've been told about once. Plus, some medications are experimental, and can be meant for sea-sickness, but used to treat your sweating issues. It's all a hodgepodge of hopeful capsules and powders that will make you feel weird and maybe worse before they make you better. But you have to stick with it, and report everything to your doctor (or your parents. Don't say "I'm fine" when you aren't) so they know what to treat.
If your POTS symptoms arose during adolescence, and you aren't an adult yet, there's hope to be completely asymptomatic. Developmental POTS is a subtype of POTS, often with symptoms beginning at 14 after a period of very rapid growth (a doctor once told me it happens often in girls and "the long ones"). The condition usually worsens, peaking at around 16. Roughly 80% can look forward to being asymptomatic by adulthood (19-24).
Dealing With POTS
POTS symptoms vary from person to person, and can be easily aggravated by stress, seasonal changes, weather changes, foods, physical activity, and temperature. I can't stress enough the importance to identify your symptoms and your own personal ways to calm them down and get back to your life. Dealing with POTS can be hard, and sometimes is severe enough to disable patients, keeping them from work or school.
Children out of school should remember to stay in touch with friends, and keep up with your schoolwork, as both can be great distractions from your situation. Also, it is incredibly important to inform friends and family about what you're going through. You wont feel self-conscious about staying home from school even though you seem rather healthy, friends will understand your inability to hang out, and people will be more helpful overall.
All in all, POTS is treatable, annoying, and misunderstood. Patients can look entirely healthy but feel awful inside. Symptoms vary and are tough to treat. Most patients can lead a normal life with a lifestyle change, others will need medication. Stick-to-it-iveness is a must, and it's important to let those around you know about your situation. There is hope for some, and perhaps hope to come for others as more research is done. POTS isn't well know, but try to search for a doctor who knows his stuff. Good luck to you all, I wish you health and happiness always.
Please ask if you have any questions. I really do want to help.