My POTS story: pt 2
Today, January 20th 2018, is my 4 year anniversary of the day I got sick with POTS. In honour of that, I wanted to finally share my POTS journey from start to finish! I first started with my life before POTS in which I still suffered with mild to moderate daily symptoms and severe, but localized, chronic pain here. Now I'm going to share my story from January 20th 2014 until now. It's a lengthy task but a blessed honour. I often get asked about the symptoms I experienced, how I knew it was POTS, and what treatments I've received over the years and hopefully by sharing my story I will be able to offer perspective and hope.
January 20th 2014 started out like every other day. My boyfriend at the time and I ended up going for brunch at De Dutch. I took a picture of the freshly cut daisy in a small yellow vase on our table because I love daisies. It’s funny how I don’t remember what I did yesterday but I remember the colour of the vase at our table 4 years ago. You always remember your last healthy memory, and for me, the last picture I took when healthy. I saved the picture but didn't ever want to look at it because it would make me relive the worst day of my life.
We had brunch in the city he lived in which was a 45 minute drive from my place. We had decided we wanted to go back to my place but he had to do something at home first. I drove home by myself and felt fine. However, the moment I walked into my apartment I fainted. I called my mom right away and she told me to eat something- thinking I had low blood sugar. I crawled to the pantry to grab a granola bar, ate it on the kitchen floor, and then walked over to my couch. I called my boyfriend at the time and asked him to hurry over because I wasn’t feeling well. I stayed sitting with my head between my knees like my mom suggested until he came over. When he got there I lifted my head to say hi and had what I now know was a low blood pressure seizure. I was shaking uncontrollably and shivering as if I was cold. I lay down on that couch, praying for the first time in a long time, crying my eyes out.
I will never forget that fear. It’s the same fear that plagued me for months after when my symptoms were far more than I could handle. It’s something that no list of POTS symptoms could ever adequately describe.
It's a different level of consciousness, one where presyncope isn't an event but a constant. It wasn’t just lightheadedness, fainting, seizures, or dizziness, no, it was like every single way my body used to function switched off.
Reading the list of POTS symptoms doesn’t do it justice. When your autonomic nervous system turns a switch like that, you’ll never forget it, but you also won’t be able to adequately describe what it’s like. Finding words to match my symptoms was impossible during the first few months of my sickness. And I think that’s also what makes it so hard to treat POTS. Doctors would ask me about my worst symptoms and I would have no idea, nothing felt normal, my body wasn’t mine anymore, it was taken over.
That day I called my mom and she said it was probably the flu. I remember convincing myself “it’s okay, it’s just the flu, you can get through this, it’ll go away."
It brings tears to my eyes to remember me thinking “it’ll go away.”
Because it never did.
I was bedridden for 3 days in which my boyfriend stayed with me. I remember being terrified when he would go to work because I thought he would find me hours later passed out on the floor. Every time I would sit up I had about 30 seconds until I would pass out and/or have a low blood pressure seizure so I only left the room to quickly use the washroom. On the 2nd day I knew I needed to go to the hospital but was too scared of the walk to my car in the parkade. On the 3rd day I finally decided to go and my boyfriend used my computer chair (on wheels) to wheel me down the hallway into my elevator and to my car. I remember lying down in the car and feeling so confused by all the stimulation I could barely see outside my window.
The ER doctor concluded that it's probably the flu so I went home.
The next day, things got worse, and I barely understood how to put my clothes on. We went to the ER and my mom met us there. Apparently she overheard a female ER doctor say to her colleague
"let me guess, a young woman is dizzy and tachycardic?" while rolling her eyes.
When my mom told me that months later, after I received a POTS diagnosis, I was livid. This doctor has seen so many young women presenting with dizziness and a high heart rate that it's nothing but an annoyance to her? And she's dismissed them all? How many other women in my city had her as a doctor, are any of them still undiagnosed?
This doctor instructed her colleague to put Ativan in an IV and tell me it was probably anxiety. I wasn't feeling anxious about anything besides passing out though. I loved my life and wasn't feeling any abnormal amounts of stress prior to these past 3 days. When this other doctor noticed that my resting heart rate was still above 100bpm after the Ativan IV, they admitted me. During my stay they realized that my heart rate was 140bpm lying down and 180-200 standing with no sudden drop in blood pressure. Three days after being admitted I left having monitoring my heart for 3 days, receiving an echocardiogram, doing a nasal swab to test for the flu, giving me Tamiflu, and putting me on 25mg of Metoprolol 2x a day.
But I was back that night.
I had troubles breathing which would later become a trend in how I react to medications. They had me reduced to 12.5mg 2x a day and told me to stop taking the Tamiflu because my nasal swab results came back negative. NOW I was worried. I think that was the first time I've ever been truly scared for my life. It wasn't the flu but they sent me home telling me to wait for the Metoprolol to kick in and that should help.
I tried to go back to school and even walked 30 minutes from my place to class one day. I was shaking uncontrollably the entire time and felt at lest 20 unbearable symptoms. I attended class, had no idea what the professor was talking about, and called my mom on the walk home from class telling her I was fainting. My phone died and I was terrified that no one would find me passed out on the path to my apartment. When I got home I used a Pulsox my mom recently gave me and my HR was 140 so I called my mom crying and shaking. "What's going on, I thought the Metoprolol was supposed to help?" I asked her.
"Maybe it's your thyroid! A lot of your relatives on your dad's side have thyroid conditions."
It wasn't my thyroid,
well not yet.
This living hell continued and so I went to "stay with my mom" until I felt better. That ended up being for 2 years. I became bedridden quickly but continued to try. In February my boyfriend at the time had his college grad and I was adamant about going so I asked my dad if he could rent a wheelchair for me. I sat up for the hour long grad came home to have a low BP seizure just from sitting for that long. Sooner than not I was lying down on a mattress in my brother's empty old room, doing literally nothing all day (not journaling, watching TV, or reading)- I didn't even realize time was passing because I was plagued with brain fog. I had no idea what was going on, I forgot how to do simple tasks and at times even forgot my middle name.
My family doctor wasn't just unhelpful, she was rude. I previously liked my family doctor and found her relatable but developed a lot of bitterness and distrust of her. She had no idea what it was but had no interest in finding out.
I think that's what really stumps me about our medical system. In the doctor films and shows the doctors are passionately interested in finding the cause of their patient's illness. In my life, my doctor was content with "I don't know." Our even worse, "it must be anxiety."
It was sometime in late February when my Mom woke me up from a nap to tell me "I think I know what you have!" I will never forget the excitement in her voice. I had no idea she had even been researching to try to figure out what I had, which shows how out of it I truly was because my mom has a really keen mind and researchers everything. When she started explaining POTS to me, I didn't meet her with the same level of excitement.
"So I'll have it forever?" I remember asking.
"Not necessarily," she said, listing off a bunch of hopeful facts and treatment options she found online. She had already sent me a bunch of articles that I hadn't looked at yet because I was sleeping. I remember asking her to please leave the room so I could process it and do my own research. Upon reading and reading and reading I had come to the (false) understanding that 1. Florinef will fix all my problems 2. Drinking Gatorade will fix all my problems 3. I will outgrow POTS 4. In the meantime, before getting put on Florinef, I should stay lying down and not even try to walk around because POTS is an issue with standing so my body needs Florinef to help me stand. I was so out of it that I didn't actually realize that I was having troubles with standing specifically, I just knew that I was incredibly ill.
I remember saying to my mom later on "so I just need to lie down until I get diagnosed and prescribed Florinef and then I'll have my life back" oh man, I had so much to learn. And the information out there about POTS is obviously super problematic.
I ended up in the ER, desperate for the help my family doctor couldn't provide, and left with no answers or hope (another theme that continues throughout my POTS journey). My mom also went to my family doctor for my scheduled appointment, without me. I was too sick to go to the doctor but I needed help as my desperation and amount of symptoms increased. My family doctor said she couldn't speak to just my mom alone, in which my mom said "then don't speak, just listen" and explained how she thinks it's POTS. My family doctor explained how she's never heard of POTS but that my mom should bring it up to the cardiologist I'd be seeing in a week (the doctor from my original ER visit referred me to one).
I had been praying for that cardiologist appointment since the week of January 20th 2014. He would be the one to give me answers. He would know what was wrong. He would be the one to give me treatment. He would give me my life back. I had such high hopes and that's the first time I learned that the higher hopes, the bigger the heartbreak when someone crushes them.
He told me he has no idea what was wrong with me and that it was probably anxiety. I told him "I study anxiety and this isn't it. I don't know what this is, that's your job, but I study psychology, and that's my job. So I know this isn't anxiety." He said "well if it's something else then I don't know what." That's when my mom brought up POTS. His response was one of the most frustrating responses I've heard,
"POTS is a diagnosis we give when we don't know what's really going on (wrong). Your blood pressure doesn't drop low enough for it to be a diagnosis of POTS (wrong). No one knows anything about POTS (wrong) but that you'll grow out of it (wrong). I could send you to an electrocardiologist but they'll just want to run a bunch of tests on you and stick a camera in your heart, and to be honest, all these tests you're having done are probably causing more harm to you than what all this is about. Seriously though, stop having x-rays, it's causing you a lot of radiation. You'll most likely grow out of this."
Well, what the hell was this?
The only hope I had I lost. I had never felt so ultimately hopeless than I did in that moment. For someone who vowed to do no harm he not online presented me with inaccurate and outdated information, denied me treatment, encouraged me to not seek any further course of action, but he broke my spirits. That was the beginning of a long line of breakdowns in which I cried and screamed and threw things in my room with the door closed and b e g g e d God for relief.
In early March I developed severe nerve pain. There have been very few times where I've literally screamed because of pain, but this was one of them. Crying and screaming I said "it feels like acid is being poured on my head." Thankfully, my mom knew what was going on (which will continue to be a theme and my saving grace during my POTS journey). She explained how my grandma developed nerve pain because of her shingles and that she'd go to the health store to get something that helped her (pictured here). This Neurogen oil was extremely helpful with scalp neuropathy but not neuropathic pain anywhere else, which I developed in the middle of the following night. I went to the ER and they gave me T3s and sent me home. The T3s put me to sleep until I saw my family doctor the next day. She prescribed me Lyrica.
Lyrica provided some relief but immediately caused extreme shortness of breath and low oxygen levels so my mom had to call 911. That was the beginning of a one month hospital stay that completely changed me, for the worse.
Thank you so much for reading part 2 of my story! As you know, in a world that tries to silence and dismiss the voices and experiences of those with POTS and other chronic illness, it's a breath of fresh air to be able to share my experiences and have someone listen.
I will be posting part 3 within the next couple of days. This will probably end up being a 4-5 part story. I know that's a lot to read but I wanted to be thorough to address both the emotional and physical side of this traumatic battle. I also wanted to address how and when these symptoms came to be for those who are often trying to figure out a "why" behind what they're experiencing. I hope after finishing this series that you can feel like you've gotten to know the person behind Stronger Than Pots, find some helpful tips, and some hope no matter where you are today.