Wednesday, March 19, 2014

My Journey to a POTS Diagnosis

            It was a mere two months before my 17th birthday that I ended up sicker than I had ever been before. My family and I were visiting extended family out of town and at the end of a spontaneous beach day, I ended up bathroom bound. I figured it was just the flu passing through me and hoped it’d subside before our three hour journey back home at the end of the following day. When the next day came around, I woke up feeling somewhat sick but much better than I had, so I figured it was safe to say the worst was behind me. Never in a million years could I ever have imagined what was just beginning.

            For the next month I gradually got sicker but just continued brushing it off. My appetite completely disappeared, I was slowly shrinking in size, I was nauseous nearly all of the time, I was getting terrible dizzy spells, I couldn’t sleep, couldn’t breathe, started having chest pain. What I remember most vividly was the insane rib pain I would get at any point of the day. It was approximately two weeks before my 17th birthday that my body just gave in to the illness that was attacking it. There was one day where I just started throwing up and couldn’t stop; I couldn’t even hold room temperature miniscule sips of water in. I lost nearly 10 pounds in two and a half days. What I thought started on a Wednesday had me in the ER by Friday afternoon, and that’s where my story started.

            Of course I had no idea what was happening to me or why, I figured it was emotional stress up until that point, but I was doing everything in my power to heal myself and I was just getting worse rapidly. They tried fairly hard in the ER to help me out. I ended up receiving the first IV I was capable of remembering for fluids, gravol, and a pain killer, six x-rays (three chest, three stomach), urine samples, and blood work. Eight hours later and I was beyond ready to leave, and with the gravol giving me the illusion of health, I was determined to be discharged. To her reluctance, the doctor agreed if I could keep two glasses of ice cold ginger ale down, she’d let me go. Thankfully I had a hefty dose of gravol in my system and went on my way.

            I knew after that there was something going on within my body that nobody was figuring out, and I also knew it was damaging me significantly. I ended up in my family doctor’s office multiple times over the next few months begging him to take me seriously. I often left with his explanation of “it’s just stress” or “you’re worrying too much”. He wanted me to firmly believe what he believed – it was all in my head. Eventually he took me somewhat seriously and tested me for parasites, where we learned I had been the host to giardia lamblia for the past three or four months prior. After being treated and still experiencing all of my symptoms, some now worsening, he sent me for a pulmonary function test, an echocardiogram, blood work, and an abdominal ultrasound. In his opinion, all of my results were normal.

That’s when I was sent to see a gastroenterologist. Thankfully, she took everything I said seriously. She checked into every symptom I shared and told me right off the bat the testing she was going to do. First, I was sent for more blood work, where she advised me my iron was slightly low but not of concern – I was never told the exact level. Following that, I was scheduled for a colonoscopy. All of this happened within six months of my original family beach day, but now I was just a few short months past my 17th birthday. During my procedure prep is where everything hit me – how quickly my life was changing, how different I was compared to my friends, and how absurd the world I was starting to become a part of was. The nurse administering my IV in prep tried her best to comfort me, but I’ll never forget the look of pure heartbreak she had in her eyes looking down on me. She told me right before I was put out that her daughter was my age as well, and it struck me how different we could be despite our age similarity.

Following my colonoscopy, my gastroenterologist advised me she had taken a few biopsies just to be cautious, but that nothing was seen otherwise. A few weeks later at our in office appointment, she told me she wanted to proceed with an endoscopy and some biopsies, despite believing there would be nothing and what I was experiencing was just Irritable Bowel Syndrome (IBS). After my endoscopy, she told me everything had been normal, and she would see me in a few weeks. I spent the remainder of the night at home experiencing severe chest pains, which I ended up being too afraid to go back to the ER to be checked for. At my final in office appointment with her, she told me she believed I was definitely experiencing IBS but was going to order a brain MRI to be sure I didn’t have a tumour.

MRI’s are absolutely not a fun or relaxing test in the slightest. They are loud machines, huge but somehow also tiny, that have no comforting qualities about them whatsoever. Up until that point in my life, I had insisted I was not claustrophobic at all – I mean, how would I clean underneath my bed if I had been? Don’t get me wrong, I know plenty of people who find MRI’s to be a breeze; however, I don’t think I will ever be one of those people. All I can think of every time they roll me in is “wow, this must be just like being buried alive” and everything goes downhill from there. Factor in having an anxiety disorder, super sensitive hearing, and the inability to just lie perfectly still, and 30 minutes can seem like an eternity.

Anyways, following my first MRI, I called my gastroenterologist to book a follow up appointment to discuss my results, further testing, and all of that fun stuff. Her secretary informed me my results had been faxed to my family doctor as they didn’t specialize in my condition and I would have to see him for further treatment. I had my first cancer scare when I was 17 years old. I was beyond confused, what condition did I have? Did this mean I had a tumour? Did I have cancer? Was I going to die? By the time my doctor was able to see me I had already learnt from Google that it was most likely a pituitary tumour and that they often weren’t cancerous but could cause a plethora of unpleasant symptoms and often had to be surgically removed. My doctor wasn’t having any of this.

The student doctor explained to me it was most likely an old brain haemorrhage and asked me a bunch of questions; had I ever experienced head trauma or a brain bleed? Was I being tested specifically for a certain tumour? My family doctor walked in and told me there was nothing to worry about without even glancing at my results. I almost lost my mind in that moment. I am a completely calm person, but the person I was supposed to rely on for my health care was insisting having a tumour show up on a brain scan was nothing to worry about. At my insistence, he sent me for a second MRI to concentrate on my pituitary gland, as well as a referral to an endocrinologist to determine whether or not my hormones were affected at all.

The endocrinologist I encountered was less than pleasant. I can’t remember the exact time, but I believe I had either just turned 18, or was just about to. She refused to take me seriously in the slightest because of my age, she told me I was too young to have problems and she said she would run a blood panel as well as a follow up MRI in six months, but there would be nothing there. I left the office in tears. It had been over a year since my symptoms developed and I still didn’t have a diagnosis. Because of this, none of my teachers believed I was ill, and my peers thought I was just lazy and getting away with skipping all of the time. I had one friend to lean on at this time, literally just one. On top of that, I had missed an entire year of school, my senior year to be exact.

I decided I had no other choice but to take matters into my own hands. I talked to a bunch of doctors specializing in pituitary tumours and explained my situation; all of them said I should have been seeing a neurologist right off the bat. So, that’s what I did. I found a website that allows patients to rate their doctor and leave comments explaining their experiences with said doctor, and I found a neurologist that seemed as if they would take me seriously based on patient reviews. We called the office and within a month, I was in the office with a list of my 30+ symptoms and testing everyone else had brushed off. After separating what was most likely tumour or migraine, we went to work on uncovering the reason for the remainder of my symptoms.

There were quite a number of tests done before my neurologist brought up Postural Orthostatic Tachycardia Syndrome, but they were done in quick succession and I had a diagnosis within six months of being a patient.  I will never be able to express my gratitude for finally being put in the care of someone who knew what they were looking for, and someone who took every word I spoke 100% seriously. When I was finally tested for POTS, I was nearly 19 and over two years into this mysterious illness that plagued my life. It’s been a year and a half since my initial diagnosis, and I’m still learning new things about life with POTS. I was initially relieved to hear that I wasn’t crazy, I was really sick, but since then I’ve gone through a roller coaster of emotions. The great thing about POTS is that it’s not cancer. Then again, doctors know more of cancer and are more accepting of it, generally speaking. When everyday is an uphill battle against your own flesh and bones, there are days where cancer would almost make more sense. To clarify, there is never a day where I wish to have cancer. There are days, however, where it seems more reasonable to fight. 

I first walked into my neurologist’s office four or five months after my 18th birthday, two years ago. Since my initial visit, I have gone through testing for things I thought I’d only experience after 30, at least. At 20, I’ve had in depth discussions about my chances of having children, my chances of having cancer, what my future looks like, and what the possibilities are of me having countless other conditions. To date, I’ve now had five or six MRI’s with another booked for approximately 9 months from now. I’ve had countless blood tests to check my hormone levels, iron levels, white blood count, liver lipids, cholesterol, sugars, inflammation within my body, and many more things I’d never remember the names of. I’ve had two field vision tests; gene testing for cancer, a pelvic ultrasound, another pulmonary function, two nerve conduction studies with the potential for more in the near future, a 48 hour holter monitor, and countless stool samples to check and re-check for giardia. And, of course, the obvious POTS diagnosis testing (more on that later). 

I hope all of you POTSies out there had a much easier experience with the medical world, and I hope you’re adapting to life with chronic illness as smoothly as possible, which is actually not smooth at all. I hope some of you can relate to my story (novel, really) and find comfort knowing there are other people out there cringing during every uncomfortable test and in depth conversation about our own bodies, probably just as much as you are.

Rest easy spoonies, xo.

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1 comment:

  1. hey my name is haily im 17 and a senior in high school. I had a very close experience with trying to diagnosing my POTS. I went to so many different doctors only to be called a " medical mystery" i was finally diagnosed a year later, i started out with the basic symptoms, being light headed all the time, dizzy, weak, and dehydrated.... but over the year im starting to get worse :(. Im in my senior year of high school and i have already missed 10 out of 20 days since school has started. I might have to drop out and finshed my credits with online classes. Its so hard trying to explain to teachers and friends that one day you can feel great and the next day you cant get out of bed especially when " i look fine". Its so comforting to know that im not the only one going threw this :)