My history of POTS

By Jake Grove  March 18, 2016

I don't go into detail on it very often, but if you know me you've probably heard something about some sort of sickness known as POTS. For those interested, I'll go into a little more detail on this and its personal effect on me through this post. 

Pots isn’t something new to me. Although my diagnosis and discovery of it is new, this syndrome has been affecting me for some years in a variety of ways, some bad and some just annoying or ignored. I’ve had gnarly headrushes for as long as I can remember through the past several years, but never thought of it as out of the ordinary. I’ve often gotten nauseated or sick while eating for no known reason, especially when eating large meals, or early in the morning. I’ve always gotten post-activity “hangovers” with a form of migraine and nausea. I had a lot of other things I never suspected were related as well; light sensitivities, cold extremities, numb and tingling legs with yawning, visual disturbances such as unreal shadows and enhanced shadow/highlights, constantly “plugged” and hot ears, sickness induced by hot baths and showers, and more recently chest pains, palpitations and so on. There’s too many symptoms for me to individually list, as Pots causes an extremely wide range of symptoms at a variety of times.

When I say Pots, I’m talking about Post Orthostatic Tachycardia Syndrome. This is a form of dysautonomia, meaning that my autonomic nervous system, which controls many natural body procedures, is tripping up and not performing as it should.

Pots is characterized by an exaggerated increase in heart beat and drop in blood pressure upon standing or certain other maneuvers. Basically, in many situations my blood pressure drops super low, and is supposedly even lower in the blood flow to my brain. When my body realizes that the brain and heart are lacking blood pooled in the extremities, the nervous system kicks in the palpitations and increases heart rate to recover and bring the blood back where it should be. With this comes dizziness, nausea, chest pain, loss of vision, and several other symptoms. At times when the body is struggling to return the blood, it feels like the heart is failing—a hard chest pain comes on, it feels as if one’s heart is being compressed together, and that it is overworking to keep the body going.

I now monitor my heart rate and blood pressure daily, in order to manage my body

Short story is that I had past symptoms, went to the doctors, was told I was mostly healthy, went on to normal life, continued having symptoms, ignored them or thought they were normal, burned my arm, after recovering collapsed into a form of syncope, went through tests and tests until I was diagnosed with Pots, and now manage it but am affected daily.                                                                                           

If you want the long and detailed story, read on.

I never pursued medical care for my symptoms until this chest pain began to grow stronger a little over a year ago—most likely due to a growth spurt that triggered a worsening of blood flow. I went through my pediatrician to get it checked out, and was told that the quick EKG test showed a slight disturbance in my heart rate. I was sent of to Rady’s Childrens to have a full workup done on my heart, and although I explained my chest pains the best I could, I didn’t know other ignored symptoms could be related. I went through an ultrasound of my heart, a stress test, and a few other tests, and when the results came back I was told that the disturbance seen before was due to a heart murmur with a slight and harmless difference in blood flow in one of the heart valves. They said the chest pain could be related to anxiety (which I didn’t have at the time), stress or is merely a muscular pain or soreness. From a cardiology standpoint my heart as a muscle was healthy and other than a slight fluctuation of blood flow, had no issues

After this, I was told I was healthy. To go back to normal activities and life. This is how it was for a while. With no diagnosis, I had no excuses or precautions to take. I began to work out and got into it. I worked my way up to my peak strength and weight in October of 2015; 145lbs and packing on some muscle. I had chest pain through many of my times working out, dizziness and some other symptoms that seemed they had to be related to my heart—but I ignored them. I pushed on and got it in my mind that it was something else unimportant, and was just a muscular pain above the heart or was merely from growing. This wasn’t the smartest thing to do, as I had times after bodily exertion that just wiped me out, and could have been prevented. But I was unsatisfied with anything a doctor could do, so I left it alone.

I left it alone until October of this past year that is…

Toward the end of October, I burned up my arm in a cooking grease fire/explosion. Luckily the boiling oil only caught my spatula arm, but it left me with 2nd degree burns all up my right forearm. I went off to the ER in severe pain, trying to not fully scream my head off while stuck in the corner of the waiting room—my muscles were tensing, my body shaking and face covered in a mixture of pain tears and sweat. The nurses wrapped up the arm, put burn treatments on it, and finally prescribed me a form of Vicodin (Acetaminophen Hydrocodone). I stayed in bed a few days to let my body recover, and was decently nauseated and dizzy from the occasional pain medication. I began to ease off the medication about two days in, and fought through sudden burn pain attacks. I finally stopped the pills all together about 4 days into the burn. I went back to school for two days following, and nothing seemed too odd, other than noticing a little bit stronger headrushes that seemed of no concern.

It was the third day off the medication and being back to school that it hit me. I woke up from sleeping on the couch downstairs, and my arm wrap had come undone in my sleep. I got up as normal and walked up the stairs to the upstairs bathroom, where I would have my mom redress my burns. I was standing straight and still, with my right arm raised out to secure the wrapping, and nothing seemed different—until I got what seemed like a normal head rush. I went into a closing darkness of my vision, dizziness, nausea and sense of shivering numbness surging through the back of my spinal chord down to my legs. This seemed normal, until about 5 seconds into it when my vision didn’t come back right away. It went to full black and I went blind, it felt as if my eyes shut but rolled back. I then lost all sense of my surroundings and collapsed into my mom’s arms. I felt sick but unresponsive—my head felt light, my legs felt like lead, and I had no idea what was going on. I don’t think my mind even had any thoughts but went blank and crashed. I then slowly had my vision fade back in after 15-20 seconds of blindness and felt my body begin to kick back in—like a computer restarting and fading back on. I came to, but confused, and then realized I was on the verge of pissing myself and felt I would throw up as well. The first thing I did was walk to the bathroom, and just sat down. My head was spinning in circles and everything else seemed malfunctioning as well. I felt extremely weak and with no control.

I was told by my pediatrician to go to the ER at rady’s and perhaps it was a seizure or stroke based on the description of events. So I followed her instructions and was taken into the ER. I sat there in a hospital bed, on my 16th birthday, wired up to different types of heart monitors and such. I remained wired up for six hours of boredom and the occasional nurse checkup, but they found nothing. They diagnosed me as basically “dehydrated” and said to go home, drink some gatorade, and I should be fine.

That was when everything came together. I described my headrushes to my mom and that I just had a normal headrush that went into a form of seizure, but learned that my normal and everyone else’s normal were two totally different things. Wanting answers to my collapsing and symptoms, I began a whole new journey through the medical field. First to pediatrics. I had lost 7 lbs since collapsing and grew weaker, but other than that they said I look alright. They sent me to cardiology at children’s once again. This time they did an ekg, ecg, 24 hour holter monitor and when the results came back declared my heart was healthy and I should go to neurology for seizure testing.

I was brought to Dr. Chyung’s neurology office through scripps, and started testing for neurological disorders. I had gone through an eeg to test my brain waves for any forms of seizures, an MRI of the brain, and a few other tests. All came back negative. So now what? I had found a little bit on a syndrome called pots online that matched my symptoms, but was told that I needed to test for all life threatening conditions first. After seizures and heart conditions came back negative, I was told to take the orthostatic tilt table test.

This is when things began to take a turn.

I was admitted into the test, and was strapped onto a rotating table-bed contraption. I was left laying and hooked up to equipment that tracked my blood pressure through each heart beat and could see the slightest fluctuations in a split second. I was tilted upright and left to stand strapped in for the next ten or so minutes. The technician took notes and seemed very interested in the results as I described my symptoms and sensations to him. The test came to an end, and I was reclined back down. I left and awaited the results for two weeks, until they came back positive. Finally something that could explain everything!

I met with my pediatrician once again, and was diagnosed with POTS and Dysautonomia, which she stated she knew little of other than through recent research on the internet. She told me basically that the medications prescribed for this are dangerous and have serious side effects, and did not seem worth taking. She told me that all I could and needed to do was insanely increase my salt and sodium intake, gradually get back to regular exercise, and wait. That wasn’t far from the truth, and is the worst part of all, that there’s no easy fix.

So I followed that for several months while waiting to see a specialist on pots. I began to take baby steps towards recovery and got back out shooting photos and occasionally taking a mellow skate. But this activity made me often feel worse and challenged my ability to re-strengthen my body and mind. I gradually upped my salt, got more and more exercise in while fighting the outcomes of chest pain, migraines, dizziness, nausea, and everything else. It slowly picked up the more I fought it, and I was happy to be at least out of bed rest, although still held back from many activities.

Since this diagnosis in late December, I have improved over the four months following, but still have my faults.

This past week of March 18th, I was seen by Dr. Ahern of Scripps Torrey Pines for my pots, and things look good. Compared to others who get stuck in a cycle of bedrest and inability to exercise or recover, my pots is not extremely debilitating but only needs constant management, and will only affect my quality of life over anything. I was told by Ahern to continue adding salt (6+ spoonfuls of straight salt a day!), wear compression sports tights made for blood flow disorders, and continue this cycle of exercising, staying hydrated and increasing my body’s tolerances overtime.

I’ve come to accept that this just means that my normal is different than everybody elses. But at the same time, this means that I must work harder to overcome it and do normal things, and focuses my passion to use my limited time and energy to get greater tasks done.

I have only tried skating a handful of times since this diagnosis , and it takes a toll on me, but passion overpowers. My blood pressure drops significantly through skating, and as a result I’ll go from a standing heart rate of 60bpm to a skating rate of 196bpm in only half a minute. I’ll get lightheaded and heavy legged and sick, the chest pain hits, and the only way to fix it is to lay down and let the blood flow back into my brain. So skating is pretty much terrible for my body, but still satisfies my mind so much. But I will never stop, it’s just the price I have to pay.

At this point, I’ve gotten back into working as a photographer as well, and going out to semi-regular shoots and events. I bring a cup of salt and gallon of water with me, but still know I’ll pay for it later with a migraine and system crash. But to get anywhere in my work I can’t use this as an excuse. I can only use it as an inspiration to push past it. Coming out of squatting photo positions, I always lose my vision and sense of surrounding for several seconds, but have constantly recovered from these in the following few minutes. It just means I can’t respond to the subject/client/model when I’m changing positions. My time shooting is too valuable to sacrifice, so I will continue to sacrifice myself to continue to grow. Photo shoots leave me especially wiped now, but with more exercise and temporary illness, I improve in the long run.

Edit (November, 2016); It is now a year since I collapsed and learned I had POTS, and through healthy eating, constant and gradually increasing exercise, and adjustments in diet, activities, and other precautions, I have greatly improved. POTS still affects me greatly in exercising, skateboarding, and through hot and cold extremes, but in my day to day life has greatly improved. I am now managing my POTS, Mast Cell, and Ehlers Danlos through multiple ways, and am working to be my best health wise. It has been a long journey, and one that I am sure I will push through for years to come, but serves as my motivation to maintain fitness. 

For more on Dysautonomia and pots, check out Dysautonomia International

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