My POTS story: pt 3
**TW: medical PTSD, medical malpractice**
Hey there! If you haven't heard, January 20th 2018 was my four year anniversary of developing POTS. In honour of that, I've decided to finally share my entire story in hopes that it might help even one person. It's been a lengthy, traumatic, and grace-covered story so I divided it into parts: part 1, part 2 and today part 3.
Today I'll specifically be starting with a chapter of my story that I think many people with POTS will relate to: a lengthy hospitalization, medical trauma, medication side effects, doctors who don't understand, and the relief of finally being diagnosed.
In part two of my story I shared how I reacted poorly when trying Lyrica for the first tome. I was prescribed Lyrica for neuropathic pain (common with POTS) but experienced extreme shortness of breath and was brought to the ER via paramedics. This was the beginning of the worst part of my journey. This hospital visit took place in Surrey Memorial Hospital in BC, Canada. I have received exceptional care at hospitals in the Vancouver area since then and haven't experienced anything close to the neglect and malpractice I experienced at Surrey Memorial Hospital. From my mom's miscarriage in '94 in which she woke up in the hallway of Surrey Memorial with a clip board on her chest, no record of whether or not she had a blood transfusion (before she woke up they told her she needed one but when she woke up all the doctors said they didn't know), and her being kicked out on the streets with no ride home, to my experiences, to the neglect a family friend who recently passed away from Type 1 Diabetes at Surrey Memorial Hospital, it's safe to say that I am not a fan of this hospital whatsoever.
The visit that I'm referring to started off like all my other hospital visits: me desperate for answers, barely able to speak or explain my symptoms, let alone fight for myself, and doctors confused as to what to do. I was hooked up to oxygen when an internal medicine doctor came in who was really passionate about figuring out what was causing all my symptoms. This was the first time I had ever experienced this so I was really hopeful! She ordered 24 hour urine tests and a bunch of other hormone testing as she became convinced that I had a cyst that could be causing all of these issues, or Addison's disease. She said that if it was a cyst then my symptoms would disappear when the cyst was removed- this was the last time I had genuine hope that I had a curable condition. When the ultrasound came back negative I lost all hope. I was exhausted and didn't want to fight any more. They admitted me for what ended up being a month-long hospital visit.
My first official stop was the general ward where I spent 2 weeks of my stay. The hospital was in the middle of renovations so the general ward was technically the old pediatric ward. I would often stare at the ocean scene painted on the wall of my "room" (12 people were in my room separated by curtains) and day dream. They decided to try me on Amitriptyline for my nerve pain. This helped relieve a tiny bit of my pain but made me too sedated so they started me on Gabapentin. I was surprised when I didn't experience any side effects at 100mg of Gabapentin as I was extremely hypersensitive to all medications. However, the pain relief wasn't enough so we increased my dose to 100mg 2x a day (morning and night).
A doctor would come in every morning basically pulling at straws regarding what to test me for. I had CTs, Xrays, multiple EKGs, and a few other standard tests but of course nothing out of the ordinary came up. We suggested POTS a couple times but no doctor really knew what that was. This stay was all a blur- I honestly barely remember much of it because I was so incredibly out of it. I didn't feel like I was in my own body. The symptoms were so severe that I truly was dissociating for the first time. I only left my bed to walk to the bathroom which was right beside me so I became deconditioned quickly, but didn't realize it. I didn't fear a diagnosis, a new medication, or anything besides my daily symptoms. I wasn't fighting for my health because I was too disoriented to speak properly so my mom did it for me.
I remember one time I looked at my reflection in a bathroom mirror and genuinely didn't recognize myself. I just stood there crying in front of it because I felt so confused by the person staring back at me.
Then one day I had an order by a doctor not to drink any fluids that day because of a specific test they were going to run. I have no idea what the test was going to be but an internal medicine doctor I hadn't seen up until that point randomly came in. I don't remember his name but he felt like a guardian angel. He came in and said "Sarah? I've been following your records since you were in Eagle Ridge (3 months prior). I have reason to believe that you have Postural Orthostatic Tachycardia Syndrome..." then my mom and I laughed and had a big sigh of relief (I was also kind of fearful).
If you have POTS you can empathize with the astounding relief that comes with receiving an accurate diagnosis. This is an idea that seems confusing to the healthy world, though: how could we be happy about receiving an incurable diagnosis?
I'm not happy, I'm relieved. I'm already suffering with the symptoms POTS causes, but now I have a name for it. And with a name comes treatment.
He ripped off the paper sign on my wall that said "no fluids for 24 hours" (for the test the other doctor was going to order) and said "you need to be drinking as much fluids as possible and as much sodium as possible." We had a couple more questions for him but he said he didn't know much about POTS but just learned about it at a conference (awareness conferences work people!!). I was so confused that I remember turning to my mom and said "so can I say I have POTS now?" and she said "yes you can."
The internal medicine doctor that diagnosed me with POTS learned what POTS was just a couple months prior from a conference. These awareness conferences do make a difference.
The next few days were a big blur. The internal medicine specialist didn't pop in for a few days which left us so confused: what now? We kept asking the nurses when he'd come in and they didn't know. My daytime doctor came by every morning but the only doctor who could treat me was MIA. He finally came by 2 mornings in a row in which he ordered more testing, put me on Midodrine, then upped my Midodrine, and told me he knew no POTS specialists in BC to refer me to once I were to be discharged from the hospital. This was really concerning to both my mom and I but he promised to contact us if he ever found one. We never heard from him.
The first day I was on 2.5mg of Midodrine 2x a day. I felt the typical pins and needles that are to be expected on Midodrine but didn't feel any better. So the next day the internal medicine doctor upped my dose to 5mg of Midodrine 2x a day which unfortunately left me very nauseous and constantly throwing up. They took me off the Midodrine and put me on Florinef (as I'm writing this I'm currently on half of a 2.5mg tablet of Midodrine 6x a day and no Florinef). I had heard a lot of great things about Midodrine and Florinef from my reading and researching, specifically more positive things about Florinef (I don't know why? I don't know a ton of people with POTS on it. It can be beneficial but I think it's too hyped up) so I was excited. I remember when I was bedridden and my mom woke me up saying "I think I know what you have" because she read about POTS and me thinking (after researching) "oh I just need to go on Florinef then and I'll feel much better" ha! Was I ever mistaken. I remember reading a blog post/picture that said "you know you're a potsie when you have an 'I heart Florinef' poster on your wall." I put all my hope in Florinef. The doctor told me it might not work for a while so I was earnestly waiting (and would continue to for my remaining days at the hospital).
One day a doctor decided to try me on Bisoprolol because they weren't happy with how Metoprolol was controlling my tachycardia. This doctor, like many, fell into the misunderstanding that reducing tachycardia meant reducing symptoms but unfortunately it often doesn't work like that. I took my morning dose of Metoprolol but was instructed to take my first dose of Bisoprolol in the evening. When I took my first (and what ended up being my only) dose of Bisoprolol I had a lot of hope that it would work. I always find it funny when people talk about how 'positivity' will cure chronic illness, kind of like the placebo effect, because every time I had unwavering hope that a medication would relieve my symptoms, I didn't experience anything close to a placebo effect.
When I took my Bisoprolol that evening I was watching a DVD on a portable DVD player my dad bought me for that hospital visit. I don't know how I would've survived that hospital stay without it since there wasn't any wifi at the hospital. Around 15 minuets after taking Bisoprolol I turned to my mom and said "what's burning? I smell burning" and apparently my eyes rolled back and I started seizing. I screamed to the nurses out of fear and they grabbed the night doctor. He came over, didn't look at my chart, looked and saw me acting somewhat responsive and said "it's anxiety" and walked away. While he was walking away I screamed at him but he didn't even look back. I honestly don't know what was worse, how he ignorantly misdiagnosed me or that he didn't look back when I was screaming out of agony and desperation. He told the nurse to give me Ativan before he walked out of the room and I decided to take it because I was afraid. Besides having Ativan once in an IV on my first 3-day stay at a hospital the week I got sick (when it didn't help my tachycardia they knew I wasn't experiencing anxiety), this was my first time having Ativan. My family doctor prescribed me some before then but I never used it nor needed it.
Before that day, I only had the first ER doctor I ever saw, and my family doctor suggest that I must be experiencing anxiety (I wasn't), but I knew that this was a common misconception with POTS. I was already a part of a lot of Facebook POTS support groups before I was diagnosed because my mom and I were certain of my diagnosis. The Facebook support groups (especially the groups titled "POTS" and "PotsRecovery.org") made me feel unconditionally supported, helped me find good doctors in my area, and gave me tips and tricks for anything and everything. I couldn't have gotten by without these Facebook POTS support groups and they're one of the first places I announced my official diagnosis of POTS.
When that doctor looked at my age and saw "anxiety" I empathized greatly with all the potsies on these Facebook groups that shared their similar stories. It was one of the most dehumanizing experiences for me. Not only was I in unbearable pain, bone-achingly tired, just lost my entire life, and the body that homes my soul was starting to betray me, any ounce of hope I did have (because I was still staying "positive") was squashed by that doctor. And it almost seemed like he enjoyed it.
The next day I was on-edge but hopeful that it was a one-time thing. My regular day doctor came by and put me back on Metoprolol and I never tried Bisoprolol again. This regular day doctor knew the Wikipedia definition of POTS but nothing else. I had another seizure that afternoon and that evening. With no doctor nearby, and the nurses instructed only to give me Ativan, I was at the end of my rope. My mom used her twitter account for her author page to call out Fraser Health about what was going on. That next afternoon there was a Fraser Health representative in my room who thankfully witnessed a seizure, ordered an EEG and moved me up to the cardiac ward. I was hooked up to an EKG machine and given saline until I had a seizure the next day and was talking of chest pain and palpitations. They took me off of the saline that was helping me, had a doctor come in and say that it sounded more like anxiety than POTS (because of the seizure which makes no sense whatsoever), I rang that doctor out and never saw her again, they took me off of the heart monitor and did nothing to treat me. Ever since I tried one dose of Bisoprolol once I had 1 seizure in the afternoon and 1 in the evening. With one doctor telling me that there's no way the Bisoprolol could happen in that way (I don't understand it either but news flash, it happened), a cardiologist saying "some doctors don't believe in POTS," and that same doctor later on saying "this isn't typical of POTS, I think there's something more going on" and then eventually sending me to the Geriatrics ward, I was at a loss.
I thought the cardiac ward of the hospital was going to provide me with better treatment but it underperformed the general ward in every possible aspect. The nurses were less friendly, the doctor didn't come by one day at all when I really needed him and the nurses then told me I was a liar and that he did come by (only for the doctor to apologize the next day, when he did come around, for not coming to see me), they knew nothing about POTS (cardiologists are often most educated about POST because even though it is not a problem with your actual heart, it causes cardiac issues), they dismissed and invalidated me, didn't provide me any treatment, and eventually moved me to the Geriatric ward with no warning. One night I was crying because I had a seizure and experienced rocking vertigo (the sensation felt when lying down that you're moving back and forth like you're on a boat) and smelled burning after I had my evening seizure up until I went to sleep. A nurse came by and said (I kid you not) "don't worry, everything will be okay, once I started developing a tremor in 1 hand and was freaking out about it and thought I was developing MS.....eventually it went away." Her intentions were kind and pure but her 1-handed tremor wasn't comparable to my experiences and I didn't relate at all. However, this nurse was the only one who talked to me one-on-one on a personal level like that so I did appreciate that. That night I asked for the first time if I could have a sleeping pill so I could sleep through the aftermath of my nightly seizures. I took a sleeping pill every evening for a week to escape the torturous post-seizure hangovers.
I don't know what I would have done if I didn't have my mom during this hospital visit. When I was denied saline treatment after my seizures they didn't even believe to be were seizures (multiple neurologists I've seen since then have confirmed the epileptic origins of these seizures) my mom posted an article about how saline treatment can be effective in the use of POTS on the bulletin board in my room and asked why it was easier to get crack at Surrey Memorial than saline (lol)! She fought for my health when I was too tired and weak to fight. Looking back, however, I realize how sad it was that we had to fight so hard for my health because providing accurate treatment and diagnoses is literally the doctor's job.
I stayed for a week in the cardiologist ward where I saw a physiotherapist once. During my one month hospital stay I had daily injections of a blood thinner but no physiotherapist after he saw "oh she can walk to the bathroom, she's fine" (I overheard him say to the nurses in the general wad). However, once he came to the cardiac ward and walked me around the small ward and back to my bed. I didn't realize I was deconditioned. Back at home I was completely bedridden besides 30 second showers and walking to the bathroom multiple times a day. When I was in the hospital, however, I was wheeled to the bathroom and my mom washed my hair in the sink.
I had no idea that I was in the process of becoming severely deconditioned, developing muscle atrophy, and developing medical PTSD. How ironic that they caused anxiety, something I never previously had, by inaccurately blaming all my symptoms on anxiety in the first place.
While I was staying in the cardiac ward I brought for an EEG, but not given the results while in the hospital. Weeks later, after my mom requested all of my medical records from the hospital, we found out (through reading my records only) that my EEG showed abnormal epilepsy and/or the predisposition for epilepsy. My EEG results were abnormal and probably why I was predisposed to having a seizure because of the Bisoprolol. EEG scans don't lie, your brain scans don't lie. If confronted with that information, the doctors would have to swallow their pride. But I digress..
I asked the doctor in the cardiologist wing one day if they thought increasing my Gabapentin would help with the seizures if that's what they were (my mom and I were on our phones researching all day and already realized that they probably were seizures) and her response "you can try." So I did. I took 100mg 3x a day instead of 2x a day. I was fine, with no side effects, until I was standing up to hug my boyfriend at the time and all of a sudden couldn't speak and had a ton of pressure in my head. They took my BP and It was something like 160/110 in which they said "we've seen worse." I decided that I wasn't going to increase my Gabapentin but the next day I had no more seizures. However, the day after (48 hours after going from 3x a day to 2x a day) I had 2 seizures again. I was at a loss as to what to do but I had hope that something could stop these seizures. It doesn't make sense to any doctor, nor myself, why going from 200mg of Gabapentin (a very low-risk, mild medication) to 300mg of Gabapentin stopped 2 seizures a day. I have no idea why it happened, but it did. I am hypersensitive to medications and this hospital visit was just the beginning of that.
Then one day, with no warning, I had a staff member come into my room to tell me they were moving me. They brought me to the basement, more specifically, the geriatric ward of the hospital. A 24 year old woman with unexplainable symptoms was literally being pushed into the basement of a hospital to be silenced and forgotten about.
I stayed in the Geriatric ward of the hospital for a couple days. I remember it being cold and dark but the nurses made it friendly. There was a man with dementia who shared a room with me and screamed out for his wife throughout the entire night which made sleep a hard thing to come by. With no light of day, the nurses saying they didn't know why I was down there, and no doctor coming by, I finally asked to go home.
Hey, thanks for reading! Part 3 of my story is being published a lot later than the time it took between posts 1 and 2 so thank you for your patience. This was a hard and traumatizing experience for me to relive but I promise my story gets a whole lot better from here! Stay tuned for part 4 of my story to be published soon.