“It’s probably just IBS,” she said, that all-too-familiar doctor’s smile spread across her face. “Have you hear of IBS before? It’s surprisingly common, and has a wide range of symptoms that are similar to yours…” I let my mind drift as she went into her spiel. I didn’t want to be rude, but I’d heard it before. This was the third specialist I’d been to in less than a year, and the answer was always the same. “Chalk it up to IBS, that’s probably what it is. Don’t eat this, don’t eat that, and you’ll feel fine.” I’d tried that. At that point I had given up gluten completely. I didn’t eat certain veggies, avoided most fruits, focused on a paleo-like diet specific to the IBS-healthy diet. Other than the symptoms I was having I felt great, had lost some weight and enjoyed cooking my homemade meals. But I was still feeling those symptoms, and decided it was more than IBS, it just had to be.
Don’t get me wrong, I had my doubts. I saw that patronizing look in my doctors’ eyes, and I wondered to myself if I was wrong. Am I really a hypochondriac and I’m just so delusional I can’t even see it? I would ask myself even when my symptoms were at their worst and I had to literally force myself out of bed in the mornings. I was prone to worry, everyone who knew me well knew that. In fact, everyone who knew me well didn’t really believe me either. I don’t blame them, of course, but the fact that nobody really seemed to trust me had me mistrusting myself.
Me as a kid!! Wasn’t I cute?
The thing that kept me asking questions, though, was that I didn’t used to feel this way. The past few years had felt as though a thick filter had been placed over the person I truly was. As a kid I would wake up at the crack of dawn with my dad just so I could eat breakfast with him before he left for work. I had so much energy growing up; I loved to ride my bike in the neighborhood or swing on my swing set or play soccer or do all of those things in one day. Naps? I despised naps. The first question I asked my kindergarten teacher was “Do you make us take naps?” Her responding answer of “No, you do not have to take naps in kindergarten,” made me decide right away that I liked elementary school more than preschool. I prided myself on being a tomboy, and my mom even ended up buying me jeans made for boys because I would get grass stains on or rips in them anyways. My energy was unbounded to the point where I wouldn’t even sleep at night because I was so excited about what I would do the next day. (That insomnia, unfortunately, is one of the few things that hasn’t much changed).
Of course, as it does for seemingly everyone, my high energy levels slightly shifted by the time middle and high school rolled around. I would have to wake up at 5:45 in the morning, shower, and catch the 6:10 bus that took nearly an hour to get to school. My homework often piled up to the point where I got in the habit early on of allowing myself only 5-6 hours of sleep at night, partially due to my running cross country/track/playing soccer, partially due to procrastination, and partially due to the ridiculously early time I had to get up for school. I was tired most of the time, but I was still functional. My mom often commented on how impressed she was by how almost robotic I was in the morning: the alarm went off, I’d get up and shower, go downstairs to eat breakfast, and continue getting ready for school. There were very few times where I slept through my alarm; despite any lack of sleep I was getting I still became alert and “up” the second that alarm went off.
I remember the first time I started feeling wrong. Seriously, I do. I was in Rhode Island with my boyfriend’s family at their beach house for the first time, and though I knew them well enough for them to invite me there, I still was very concerned about making a good impression. Therefore, when my abdomen started feeling achy and I felt all-around off, not sick exactly, just off, I remember going to the garage bathroom and just resting in there for a while to see if it would wear off. When it didn’t, I held my breath, which for whatever reason seemed to feel right at the time, stood up and walked back to the house, forcing a smile.
The symptoms progressed, slowly but surely, from there. It started out with digestive issues, “IBS”, which turned into chronic exhaustion, “IBS”, which turned into tingling and numbness in the extremities, weird twitches, slow thought processes, and a sensation that I wasn’t even completely attached to my body, “You know, the digestive system controls a lot of bodily functions, this may not be a direct symptom of IBS but I wouldn’t be surprised if it was caused by it.” Waking up in the mornings became a task in and of itself. Instead of the usual alarm -> awake -> out of bed scenario I had been used to my whole life, it became more of an alarm -> snooze -> alarm -> rolls-over-and-gives-self-a-pep-talk-that-I-have-to-go-to-work-to-make-money-and-support-myself -> placing one foot after another on the floor and slowly standing up like a zombie. I slept through my alarm at least once every couple of weeks, sometimes more. I took naps after work almost every day. I absolutely hated myself for this funk, but nothing I could do would get me out of it. I tried sleeping well, I tried not drinking alcohol (temporarily…), I tried coffee, no coffee, tea, no tea, cocaine, (no, mom, I didn’t do cocaine, I’m just kidding), and nothing at all. No matter what I did, I still felt off.
One more specialist down, one more to go. I decided if I got the same answer from him, I would be done trying. It was a disappointing thought, but my wallet was wearing thin from all of the different appointments and I was starting to trust either doctors or myself less and less as the appointments went on. Maybe it is just IBS, maybe I am just a total baby, maybe…
“You have a small lesion in your left frontal lobe,” the neurologist said during the appointment following my MRI exam, “It could be as serious as MS, or it could simply be from a concussion, it’s hard to tell as the lesion isn’t terribly deep. Have you ever had a concussion?” “Yeah, I play soccer, I’ve had a couple,” I replied, my heart beating swiftly at the suggestion of MS. “Okay, if it’s MS we’d need to monitor your symptoms for six months to see if it progresses at all. However…”
After a few seconds of pause, he looked back at my charts. “Do you experience dizziness often?” “Yeah,” “Muscle soreness?” “Not really, I mean I guess, but I work out often,” “How about in your shoulders and neck, are you tight there often?” “Well, yeah…” “Do you get tunnel vision easily?” “When I stand up, but I just thought that was normal…”
A month later I found myself sitting on what is called a tilt table, which is almost exactly as it sounds. It is wider than a hospital bed, but essentially looks the same other than that, and other than the fact that it had an array of black straps attached to it. When a button is pressed, the table swiftly tilts upwards until it is completely perpendicular to the ground, mimicking the motion of standing up quickly after laying down. At the moment, however, it was horizontal. I was instructed to lay down on it, after which they proceeded to strap me in as if I was a patient in a mental hospital. They attached me to machines to keep track of my blood pressure and heart rate, and put an IV in to fill me with fluids. I had to lay down for an extended period of time, during which the elderly nurse told me in a dull voice that I should keep her aware of any symptoms I was having when she tilted me upwards. I kept thinking how this test was probably just a waste of time and money, but I still smiled and joked with the nurse as much as I could to keep my nerves down nonetheless. When the table was finally tilted upwards, I continued my conversation with her for a few more seconds before I suddenly felt absolutely horrible. “I don’t feel well,” I told her, “I feel really dizzy—I think I’m going to faint,” My body broke out in cold sweats but I felt hotter than ever. I immediately developed tunnel vision and proceeded to black out.
The next thing I remembered I was lying horizontally again. My cold sweats were actually making me shiver this time, but otherwise I felt okay again. “You fainted!” the nurse said, more animated than I had seen her the entire time I was there. “I couldn’t even get your blood pressure it was so low. And your heart was beating so fast! I’ve never seen anyone react to this test like that. Thank goodness I knew you were about to faint so I could tilt you back to lying down right away—” “Okay, but what does that mean?” I interjected, dumbfounded and taken aback by the nurse’s sudden interest. “I’m not sure, I’m going to go get the doctor,” she said, rushing out the door. What in the actual hell is going on?
Post Orthostatic Tachycardia Syndrome, aka POTS. That’s what was going on.
For over six years my body had been slowly but surely developing an autonomic disorder that causes my blood pressure to suddenly drop and my heart rate to rise, a combination that not only explains the countless times I’ve had to rush back to bed after getting up in the mornings and nearly blacking out, but also explains the reason I feel almost completely unattached from my body amongst the mélange of other symptoms I had been feeling. POTS affects the digestive system, “IBS,” the nervous system, “MS,” the vestibular system, “you’re not very graceful, Elisabeth Grace,” and the overall system that deals with mental functioning (I now use this as an excuse as to why I can never remember names when I first meet people…).
Many doctors like to say that POTS isn’t very common, but the truth of the matter is most doctors just aren’t terribly aware of it, so it’s hard to say how many people actually have it. Because of this, I was offered a slew of different medicines that I could try in order to see if they helped my symptoms any, however as these medicines haven’t been around for more than 20 years I decided if I took them I’d feel like a guinea pig waiting to prove to the men in the white coats that their assumptions were correct. My personal opinion when it came to taking medicine for POTS was that I had dealt with these symptoms for over six years at this point, so I would just keep on managing them, happy just knowing the answer as to why my body felt the way it did. I instead have begun working with Cecily, who has proven to be a wonderful health and wellness coach; doing everything she can to help me feel healthy and happy. Since working with her and learning how differing foods and substances can trigger certain reactions in my body that might elevate the POTS symptoms, I have felt better than I have in years. The symptoms have not fully dissipated, but they have certainly been way better managed than they ever had been.
Why am I writing this? To be honest, I’m not exactly sure. It’s not a vindication post, as I know that doctors (for the most part) try hard to do the best that they can. Besides, I’m eternally grateful to my neurologist who decided he would try one last test before chalking it up to MS. I have my answer, and it’s a manageable one, and if it weren’t for him I’m sure I’d still be wandering, lost. It’s more of an awareness post, I suppose, as I am sure I’m not the only person who has felt as helpless as I did in the past, wondering if I truly knew myself and questioning my sanity when it came to my health. Disclaimer: I don’t want to incentivize all those people who perhaps do have a hypochondriac problem, however if you are truly honest with yourself and you know something is off but you still get those patronizing looks from doctors, don’t be discouraged. Try, try again. The answer is almost always out there, and it’s almost always better than the question, no matter how hard the answer might be to take. In my case, I’m lucky it’s POTS as, though slightly debilitating, it’s not as serious as other conditions. But I even felt relief at the temporary thought of it being a more serious condition, and I believe it’s because I realized that even in the worst case scenario, if I knew the answer I could know what to expect in the future. As long as the answer wasn’t IBS.
Written by: Lis Huber, Full Circle Healing