Recently, this question has come up many times for me. Okay, maybe not this question exactly but the look on their faces really says it all. Whenever I tell someone who has never heard of POTS that I have a condition called POTS, they all look at me with the “What the hell is POTS?” look on their face. Granted, many of these individuals hold back from actually saying this, and instead opt for a small explanation that does no justice for either of us.
Since my last post, I have come across two recent articles that have tried to spread awareness on POTS, one on the local news, and one in a magazine. However, my excitement was quickly replaced with dread and disappointment when I read the articles and found no real explanation of POTS, or facts that would help others understand what life is like with dysautonomia. In fact, both of these articles did the opposite. Both of them were deeply flawed and painted an awful illusion of what POTS is like and/or who it affects, and why, making it harder to get the truth out there.
I can only assume that I’ve been in such a deep brain fog stupor for the last four months and that is why I managed to start a blog without ever explaining what my blog was about. Honestly, who does that? Me, of course. Anyways, I’m going to do my best in this post to explain in as much detail as possible exactly what POTS is, what it means, and how it affects those of us who have it. I’m also going to try not to bore you, but I admit that science is not always interesting and health is unfortunately made up entirely of science. However, I will do my best to explain what each long, confusing word means in basic English, even if I have to use diagrams and charts to do so.
To begin, POTS is short for Postural Orthostatic Tachycardia Syndrome. Postural = position of the body. Orthostatic = upright position (in this case, sitting or standing, or any time the head is above the heart). Tachycardia = a heart rate that is much faster than normal, generally a resting rate of 100+ beats per minute. Syndrome = many symptoms that all correlate to the same condition, think of the syn in SYNdrome meaning SYMptoms. Essentially, POTS just means an individual who experiences an abnormally fast heart rate with many symptoms present upon sitting or standing. Makes more sense, doesn’t it?
Causes of POTS
There are many ways doctors assume POTS can be developed. These include the following; growth spurts, hormone disturbances, viruses, trauma, pregnancy or childbirth, and others. For many POTSies I’ve had the chance to talk to, trying to figure out how it started is often one of the most troubling questions. There is no way to prevent POTS and it is not a contagious condition. POTS is something that seems to just happen, as far as any of us know. For me, it was more than likely a parasite I had picked up that shocked my system, leaving my system unable to recover completely and open to developing POTS because of this.
That does not mean anyone who develops the same parasite or virus, goes through the same trauma, becomes pregnant or gives birth, or goes through a growth spurt is going to suddenly become chronically ill with POTS. Nobody can explain to me why it just picks certain people, and many doctors will insist there is no genetic link or predisposition. However, there are quite a few POTSies who have siblings, parents, grandparents, or cousins that have similar, or the same, condition.
Types of POTS
Adding to the confusion, but hopefully still understandable, POTS is a condition of dysautonomia. Dysautonomia is any condition that affects your autonomic nervous system. If you’re anything like me, that means absolutely nothing to you. To explain, your autonomic nervous system controls everything your body is supposed to do without you having to think about. Breathing, heart rate, blood pressure, sweating, temperature, digestion, and more. To my knowledge, POTS is one of four conditions of dysautonomia.
Something that has been fairly new knowledge to the POTSie world is that there are different types of POTS. The various types are assumed to be determined based on how each individual develops POTS to begin with. Here I will explain a little about the two types I’ve heard the most about, hyperPOTS and hypoPOTS. I’ll admit, I still know very little about this, so the following information may not be completely correct and I completely recommend looking into it further.
To my knowledge, hyper POTS is short for hyperadrenergic POTS. Hyper meaning over-stimulated and adrenergic meaning adrenaline (also referred to as epinephrine), this type of POTS sees an individual experiencing unnatural adrenaline responses. If you think of POTS in terms of dominos, there has to be a factor that knocks the rest over, or starts the falling. For hyperadrenergic POTS, this would be the unnatural adrenaline response, which would start the symptom set off (or falling of the dominos, in this example). Once an individual with hyperPOTS stands, their blood pressure begins climbing because of their adrenaline response.
This is probably about to get really confusing, really quickly, and I apologize for that. For those with hypoPOTS, or hypovolemic POTS, this generally does not occur. Hypovolemia essentially means you don’t have enough blood in your body to function normally, similar to bleeding out or anemia. I am medically dubbed as a hypoPOTS patient. However, my blood count is completely normal. Weird, right? To explain, my body acts as if I am lacking a normal blood supply because of how severe my blood pools. Blood pooling means your blood sits in your feet, legs, or abdomen, rather than circulating completely through your body. Basically, my POTS symptoms are worsened because of the lack of blood I have circulating through my heart, head, and torso. For me, this means my blood pressure is generally very low. Think 90/60 or lower.
In terms of symptoms, it is not uncommon for individuals to focus on a few main symptoms, making them the most well known symptoms of POTS. These include; dizziness, headache, fainting, pre-syncope, palpitations, nausea, and blacking out. Unfortunately, many people hear these symptoms and assume, since we haven’t listed any others, none exist. This is far from correct. Each of us experience upwards of 30 symptoms daily, regardless of which type of POTS is present, and most of us have just learned to pass these off as “normal” for our bodies. This large quantity of symptoms is why POTS regarded as a syndrome and not a disease.
Continuing off of that, we’ll talk about symptoms and what they really mean. First of all, the main symptoms; dizziness, headache, fainting, pre-syncope, palpitations, and nausea. There are many forms of dizziness, for me it usually means the room appears to be spinning, even if I’m sitting still. Headaches are pretty straight forward – there is pain in your head. These can range from a minor annoyance to absolutely debilitating because of the pain, depending on the circumstances surrounding why it’s there. (Example, dehydration). Fainting, for me, means you completely lose consciousness. Pre-syncope is really just a fancy way of describing the symptoms a body may develop before fainting. For me this is the 30 seconds where my body is all “girl, you need to take a seat”. Palpitation is doctor speak for being able to feel your heart beat, usually this means it feels as though it’s punching you from the inside out. Nausea is the feeling of needing to vomit, regardless of whether or not you actually do. Blacking out is similar to fainting, although you may not actually lose consciousness. For me, blacking out is the same as tunnel vision – my vision has started to curl in around itself and things have gone dark, but I do not faint.
Other symptoms experienced can be any of the following, and may be experienced at any time; fatigue, lightheadedness, tremors, exercise intolerance, brain fog, anxiety, abdominal cramping, constipation, diarrhea, vomiting, insomnia, chest pain, shortness of breath, tinnitus, disorientation, blood pooling, poor circulation, low or high blood pressure, bloating, visual disturbances, overheating or chills, and even weak muscles. To put this into perspective, these are only the symptoms that I personally experience, and have heard other POTS patients experience as well. Others may experience less, or more, as each patient is different from the next.
Fatigue is really just being extremely tired all the time, even with sleep. Lightheadedness is feeling as though there’s nothing in your head other than air, which often occurs before fainting. It feels almost as though your body is beginning to disappear. Tremors are also referred to as the “shakes” and occur involuntarily. So your hands, arms, or other body parts, may begin to shake uncontrollably for no obvious reason, without your control. Exercise intolerance is the inability to work out. Yes, this IS a very real thing. Many POTS patients cannot exercise because our bodies essentially just quit when we try – fainting, blacking out, lightheadedness, extreme warmth, nausea, etc.
Brain fog is like that one person that’s always around even though you don’t enjoy their company. Brain fog is kind of like having short term memory loss. I forget pretty much everything unless it’s irrelevant and completely useless information. For example, I could tell you that otters fall asleep holding hands so they don’t drift apart, but ask me my phone number or birthday and I’ll go blank. Fun, right? Anxiety is the feeling of being uneasy even though you may not be able to place it, or understand why. Abdominal cramping describes any type of pain in your stomach or surrounding areas.
I’d really like to believe that constipation and diarrhea need no explanation other than they are opposites and neither is pleasant to experience in any way. Vomiting is when whatever is in your stomach exits through your mouth, usually unannounced and unwelcome. Insomnia is the inability to sleep, no matter how exhausted you are, how much you want to, or how much you need to. It’s just not happening. Chest pain is pretty self explanatory as well; any type of pain in your upper torso could be chest pain. Shortness of breath can be mild or severe and occurs in healthy people when they are being physically active. When mild, it’s just slightly harder to catch your breath. When severe, it feels as though you cannot catch your breath, or as if someone is squeezing the air out of you, even without physical activity.
Tinnitus is also referred to as ringing or buzzing in the ears, it is the feeling of slight vibrations in your ear drums that sound similar to alarms ringing. Your ears may also be warm when this happens. Disorientation is somewhat similar to brain fog, on a lesser scale generally. This is when you lose your sense of direction or suddenly forget what you were doing, or where you were going. This happens to many people, and is not always a sign of a medical issue. For example, how many of you have walked into a room and suddenly forgot why you went in there? This is disorientation. We briefly discussed blood pooling when discussing types of POTS. To refresh your memory, blood pooling is the act of your blood sitting in your feet, legs, or abdomen, rather than circulating properly throughout your body. Poor circulation is similar to this, and may be the cause of blood pooling in some individuals. Poor circulation just means that your blood doesn’t flow as it’s supposed to, which can cause cold extremities to occur.
Having low and/or high blood pressure is not necessarily a symptom for most medical conditions, but for POTS it is a staple of the condition and therefore very important to include. High blood pressure is considered 140/90 or above. Low pressure is trickier, because it will not be considered low unless symptoms of low blood pressure are present. To put this into perspective, normal or optimal blood pressure is 120/80. Personally, my “normal” is usually 90/70, and is considered a “low normal” because I generally do not feel symptoms of low blood pressure unless I dip below 90/70. However, 90/70 would be very low for a person whose normal readings were 120/80.
Bloating is the ability to consistently look very pregnant without ever giving birth. Who wouldn’t want to be bloated, am I right? Basically, it’s the simplest form of torture and can become quite painful. Bloating means your stomach has become swollen, usually with gas, but sometimes with fluids. For POTSies it can be either, because some of us bloat due to blood pooling in the abdomen, in which case this “fluid” becomes blood. Visual disturbances can be anything within your visual field (vision) that is normally not there. Flashes of light, black spots, blurry vision, etc. Overheating and/or chills are exactly what they say.
Overheating feels as if someone stuffed you in an oven to bake for hours, whereas the chills can cause chattering teeth, shivering (little shivers, or tremors, that include the entire body) and goose bumps. Chills can occur at the same time as overheating, as a last resort way for your body to cool you down. Weak muscles are exactly that, and can occur spontaneously, causing you to drop whatever you’re grabbing at, or can be the cause of muscle deconditioning. Muscle deconditioning means that the muscles have begun to decrease, which could be the result of many things.
I’ll leave my symptom list at that, considering there are over 30 symptoms listed there and it has taken me 1,264 words to describe each of them. I bet your eyes are tired now, aren’t they? Let’s continue onto prognosis.
Prognosis can vary in each patient, dependent on their form of treatment and underlying conditions. There is no cure for POTS, but for many patients, the prognosis is often “fair”. Meaning it could really go either way, as is the same with many chronic conditions. If you force yourself to try and continue to train yourself, you’ll have a decent quality of life. If you give up, it will only go downhill from there. Personally, I wouldn’t say that my quality of life is good, but that doesn’t mean I cannot still achieve everything I hoped for prior to becoming ill. It simply means I’m going to have to find new ways and it’s always going to be a challenge that I’m going to have to work around.
To my knowledge, there are no treatments specifically designed to treat POTS symptoms. All treatment options are off label and considered trial and error. The first thing most doctors will tell you is to increase your fluid and salt intake, which acts as a natural way to increase your blood flow. For most of us, this alone is not enough to make a difference. The top treatments are usually beta blockers, or florinef and midodrine. Sometimes these are taken individually, for others, all together.
Exercise is very important for POTS treatment and symptom management. Which seems completely contradictory because I just finished explaining how so many of us are exercise intolerant, but bear with me. Exercise encourages your blood vessels to tighten when you do stand, which is the main malfunction in POTS patients. If we can train them just enough to function somewhat more normally, quality of life can improve greatly. Other treatment options may include; IV therapy, antidepressant medication, ADD/ADHD medications such as Adderall or Ritalin, medical marijuana, the use of compression stockings, and more.
I know this was an incredibly long post and I appreciate each and every one of you who stuck with me through it, and hopefully even learned something. Awareness is one of our only hopes for developing more information on this condition, as well as any solid treatment options, or even a cure should one exist. Please educate your family and friends. If you are a POTSie and noticed any errors, please message me at one of the accounts listed below.
Rest easy spoonies, xo.
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