My POTS story pt 4
I have wanted to write out my POTS story from start to, well, today, for a long time. I wrote out parts one, two, and three in the past but the momentum stopped for a couple of reasons. For one, writing out part three of my POTS story was really hard because of how much trauma it included. In addition to that, I've also realized that I've forgotten a lot of the important details over the years. The other day I thought I had developed POTS at 19 years old but a Facebook memory reminded me that I was actually 20 at the time. All the years have merged together and I have forgotten the small details. I wanted to give my story justice, and finally have it written out on here for my followers and for my own future reference, but felt overwhelmed by the thought of putting all the pieces together. I didn't take a ton of pictures back when I was bedridden and housebound, but I took enough that I can put the pieces together by the years they were taken/uploaded.
In part three I shared my one month hospital stay that resulted in me receiving a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) but leaving a lot worse than when I arrived. I left with what would turn into PTSD, multiple seizures a day, and severe muscle atrophy in my right leg and hip. On the ride home from the hospital, I remember staring out the passenger side window and feeling disoriented by the lights and movement. "Red light, sky, cloud" I actually thought to myself because I wanted to make sure my brain fog wasn't that bad. I only had a room with a window for a few days in a row when I was in the hospital, and it didn’t hit me until I saw the sky on the drive home.
When I got home I had to walk more than I had in the past month: up the stairs to the room I was staying in at my mom's. I got upstairs and as soon as I lay down I realized how deconditioned I had become. It hit me like a semi-truck and I felt absolutely terrified by the weight of the fatigue, pain, and weakness I was experiencing.
I had only showered once in the 1 month I was in the hospital. The other days I used wipes and my mom washed my hair for me over a sink while I was sitting in my wheelchair in a hospital bathroom. So after napping, and letting my reality sink in, I decided to have a shower. Before I was hospitalized, I could shower for 1-2 minuets standing (the quickest shower ever). Now, I stood up for less than 30 seconds and my legs started wobbling like a cartoon character. They were too weak to hold up my weight which caused me to fall. After that I would use a chair in the shower a couple times and then just choose to sit on the floor of the shower instead.
My mom had bought a used oxygen machine (it isn't 100% oxygen) while I was in the hospital because I had severe shortness of breath and my o2 would randomly drop. I was assessed by a doctor in the hospital for this that said using oxygen for short periods would be okay but my o2 wasn't low enough to use 100% pure oxygen for longer than an hour at a time. My most common side effect I'd experience when trying new medication was also shortness of breath; it's what I experienced when I first tried Lyrica and it's why I ended up in the hospital for this 1 month stay in the first place. So after I got out of the shower, I was put on oxygen for around an hour and couldn't stop crying and shaking. I didn’t even have the strength to get out of the towel I was wrapped in to get changed. So I just lay there shaking, wet, and terrified. That evening I had a seizure and then rocking vertigo until I fell asleep. My legs hurt and were shaking so much that I tied ice packs to them, something I would have to do for years to come just to be able to fall asleep.
This is the oxygen machine I had and still do to this day. I haven't had to use it much since 2014.
The next day I had an appointment with my naturopath. Looking back, I should've taken a week or two to work up the physical strength to get to a doctor's appointment because of how deconditioned I was, but I was desperate for help. I remember walking down the stairs (the only time I would walk was up and down the stairs at my mom's house and then I would go into my travel wheelchair). When I got to the bottom of the stairs, I distinctly remember panicking telling my mom "I smell burning, what's burning mom?" and her looking around and telling me it was a skunk outside. I was crying and freaking out at my mom because I would smell burning every single time before I had a seizure. This was the first time I had a PTSD flashback. I went to my naturopath's office in which we tried a Myer's cocktail vitamin IV for the first time. We had to stop when it got to the Magnesium because it made me faint so she switched it to just saline. I went home. 2 seizures. Rocking vertigo. Sleep.
I saw my family doctor that week and she saw that I was weaker than before that hospital visit. When she walked in, I was lying on the exam table unable to lift my head properly. I'll never forget the look on her face- she was angered by the medical system for the first time. She asked me why they let me leave and what they expected me to do now that I was out but still not functional. She kind of took it out on me. She didn't know what to do, she didn't know what POTS was, and she was in over her head. She had no idea how to help.
When I had my 1 month hospital stay, I was put on both Florinef and another dose of Gabapentin. Unfortunately trying a 3rd dose of Gabapentin made my BP too high- so high that I couldn't speak for a few minutes and the nurses in the cardiac ward came in when they saw it on their screen. That third dose of Gabapentin literally stopped all seizure activity though. No doctor understood how that could be possible since I was on such a low dose and usually another anti-seizure med is used to stop seizures, but it worked. However, I didn't want to have another high BP-can't talk-frozen in fear-moment so I was back on two doses of Gabapentin instead but then the seizures caused by Bisoprolol continued. When I got home I decided, with the help of my mom, to slowly introduce that third dose of Gabapentin into my life again when I couldn't handle the seizures anymore. So first we started with less than a quarter. By the time I was on half of a 3rd dose of Gabapentin, the seizures stopped and I had no side effects. So we stayed on this 3rd dose for a while until we eventually increased it.
Gabapentin ended up completely stopping over 30 symptoms. No exaggeration. We had to write out all my symptoms for a doctor once and that's how we know. Gabapentin took away all the weird, random symptoms that were hard to explain and gave doctors a blank look. "Sometimes I have random numbness in this spot, it feels like acid in this other spot, this finger twitches but not this one, sometimes I lose my peripheral vision, sometimes I can't lift my left arm" symptoms. The ones that terrified and traumatized me.
A few weeks after the seizures stopped, I was completely bedridden, weak, and hopeless. The doctor who diagnosed me with POTS had told us that he only learned about POTS at a conference and knew of no doctors who actually treated it. Day in and day out my mom spent her time researching, contacting doctors across the continent, and trying to find doctors, answers, and hope. My mom and I spent hours on closed Facebook support groups asking for advice, the names of doctors, tips on elevating the head of my bed to increase blood volume, vitamins, and everything. The closed Facebook support groups “POTS” and “POTSRecovery.org” were lifelines for us
My mom's an author but didn't write that year because she spent all of her waking hours caring for me and doing research for me. I wouldn't be where I am today if it wasn't for her.
My mom and I felt stuck. We found out that there were a couple of doctors who treated POTS at B.C. Children's Hospital but they refused to see me because I was over 18 which meant that the government wouldn't pay them to see me. I distinctly remember my mom on the phone with a doctor saying "what happens when someone with POTS hits 19 then? They're kicked to the curb with nowhere to go? There must be somewhere you guys refer them to after" and they gave us no help. We searched everywhere for autonomic testing. There used to be a tilt table test where I used to go to (and currently am at) University for a study, but it was no longer there. The only other tilt table any doctor could tell us of was at a Geriatrics clinic in Vancouver. It took me over a year to get into see him in which he told me he wouldn't use it on me and that I should see a psychiatrist because "if you aren't depressed now, you will be."
My mom ended up paying for me to see a private neurologist. I couldn't wait 6 more months and my family thankfully had the money. The neurologist sent me to a Neuromuscular disease unit that eventually performed many tests on me including EEG's, EMG's to rule out large fiber neuropathy, and MRI's to rule out M.S. (my great grandma on my dad's side had M.S.). The EEG's showed seizure-like activity, my brain waves weren't normal but they didn't know what they were. The EMG's ruled out large fiber neuropathy, and the neurologist didn't see a need to order an invasive skin biopsy to test for small fiber neuropathy when they would treat me with Gabapentin either way. The MRI showed no signs of M.S.
I started acupuncture, and seeing my old chiropractor, again weekly in May but neither were of much help but for temporary pain relief. I had seen a acupuncturist before developing POTS and it was helpful for temporary relief of neck pain, but never helped with my other symptoms. I was desperate at the time and tried everything: osteopathy, acupuncture, chiropractic, physiotherapy, naturopathy, aromatherapy, homeopathy..you name it, I tried it, and it usually didn't help.
At this point in my life, I really started losing hope. I realized there was no doctor that would cure me anytime soon. I had tried all the medications online that POTSies swore by: Midodrine, Florinef, and beta-blockers. I was still bedridden, I was still suffering, and I had no specialists I really trusted to followup with me or do what they could to ensure I was cared for. One night I didn't remember if I took my 3rd dose of Gabapentin or not. I had taken every single medication on time for months but I randomly forgot. I was so scared because if I didn't take my 3rd dose then I'd have 2 seizures the next day, but if I ended up taking a 4th dose I could have severely high BP that would make me unable to call out for help from my mom. I ended up having my first ever panic attack.
I ended up having multiple panic attacks a day from this point forward. Something in my body switched and I was no longer able to keep up with the intense fear of medical decisions, the hopelessness of not having proper treatment, and the desperation. I started trying multiple naturopathic remedies for anxiety and depression: St. John's Wart, "calms," Rescue Remedy, etc. My mom bought be Cognitive-Behavioural Therapy notebooks and I prayed and prayed and prayed. I was so anxious and began getting angry. I would yell and throw things after every disappointing doctor's appointment that my health depended on. Once I yelled at my mom for most of the car ride home and we got in a big fight and I didn't yell at her again after that because I realized I was using her as a punching bag. My mom told me I should see a counsellor but I couldn't sit up at the time.
I became terrified of my mom leaving our house to go pick up my brothers (who couldn't yet drive) from high-school. So I'd go with her to pick them up, recline the seat back all the way, and experience car sickness and rocking vertigo just so I wouldn't have to be alone. She once needed to go out to do an errand and I thought I'd be able to stay home alone but had a severe panic attack and called my dad to come over (which he did). I became really attached to both my mom and my boyfriend at the time because they were my "safe people" in the midst of trauma- they were the ones who saw it all, knew as much as I did about my condition, and knew how to detect my seizures and syncope episodes at the same time I did but before I'd be able to speak out and say something. I didn't want to be in a room with anyone besides them. It got to the point where my mom couldn't even go out and get groceries so she decided to hire a homecare nurse to come once a week. I fought and pleaded for her not to go, I was like a child having a temper tantrum. I was not myself, I felt so far gone and so desperate.
While my homecare nurse was at my house for 2 hours a day, I tried to sleep until my mom got back because I was so anxious. I ended up needing to try a quarter of Ativan for the first time ever. My family doctor prescribed it to me in the beginning "in case I needed it" even though I insisted I wasn't anxious (I wasn't at the time) and didn't need it (I didn't at the time). I held off because I had tried it in an IV in the hospital before I was diagnosed, and after my first seizure, and it made me feel like a zombie. The Ativan helped but if I took a whole dose it made me feel uncomfortably sedated. I was already extremely exhausted and didn't want anything else adding to that. At this time, I had also become severely depressed, started fighting a lot with my boyfriend at the time, and had become suicidal.
Eventually my family doctor put me on Cipralex and referred me to an at-home mental health program called the "Bounce Back Program." At this time, my family doctor and I both realized that I am hypersensitive to medications so she told me to start on a quarter of a dose and work my way up. 5mg gave me bad insomnia so I ended up on a final dose of 2.5mg 2x a day (which I am still on). My panic attacks slowly went away and my PTSD was mostly under control after months on this medication. The Bounce Back Program mailed me workbooks to do in my own time while the mental health worker would call me every 2nd week to check in with me how I was doing. They weren't a counsellor, but this free program kept me going.
At this point, my symptoms were still really unpredictable and I often found myself in the ER with severe chest pain, dehydration, uncontrollable pain, and many other issues. But slowly getting my PTSD under control, being on Gabapentin and Metoprolol, having occasional saline infusions at my naturopath's office, and being taken off of Florinef helped my symptoms calm down a bit.
I realized that I had reached the end of the medical system's ability to help me at this time. I was still being sent from doctor to doctor but I would react to medications, become hospitalized on them, and feel worse. My muscle atrophy still rendered me weak, but the couple months after being out of the hospital and walking back and forth from the bathroom made me a little less deconditioned. I started doing wrist and ankle rotations and trying to prop myself to eat instead of just lying down with pillows behind my back to eat. But I couldn't live like this.
So I started my own "exercise program."
Sometime around June I went outside and sat on the grass to read my Bible in the frontyard of my mom's house. It was the first time I had been outside (besides to just get in my mom's car to go to an appointment) since I got sick. I remember what a huge milestone this was. I took a picture of the tree and sunshine in my front yard. I only stayed outside for 15 minuets, got a reaction all up and down my legs from the grass (something I never reacted to before). But it was a big step for me.
If you're reading this right now, feeling hopeless, thinking you'll never be able to do x, y, or z because of your illness, please remember not to dismiss the small steps. It was the hundreds of thousands of small tiny, terrifying, frightening, and seemingly small milestones that got me to where I am today. It was the times I sat up for 30 seconds intentionally, or went outside for 15 minutes, or did ankle rotations that brought me to where I am today. Don't resent the small beginnings because that's where you'll get your power back. That's where you'll get your life back.
I often get asked what symptoms I've experienced/currently have. When I was trying to fit the pieces together into a neat timeline to help me write this blog post, I found this old Word document I wrote up before seeing a new doctor. I wrote my health history, medications I've tried, family history, and current (at the time) symptoms. Word for word, copied and paste, these are the symptoms I was experiencing in July 2014. Some symptoms have improved and some symptoms have worsened since then, but I thought it would be useful to share this for those putting the pieces together in their own health journey. I'll share the vitamins, supplements, and medications I was on, how much activity I was doing at the time, and what my symptoms looked like, according to this word document:
"Current vitamins and supplements: Daily:
Cod liver oil
GABA 2x a day
L Theanine 2x a day
Alpha Lipoic Acid
Vegetarian diet with minimal dairy and minimal processed food.
I used to only drink plain water but now drink lots of Gatorade and put Nuun tablets in my water to increase my sodium levels (as recommended by the person who diagnosed me with POTS).
Previous to January 20th 2014: I would work out (elliptical, stretching, weight training) for half-an-hour to an hour 2x a week. I would also walk to and from school (a 20 minute walk each day) from Monday to Friday.
Since January 20th: almost entirely bedridden. Since May 14th I’ve started an exercise program (including simple exercises involving minimal exertion) and have continued it daily ever since. I now do leg raises, recumbent bike training, and a bit of walking upstairs, but I am mainly bedridden.
Brain fog: poor concentration, terrible memory, feeling confused, difficulty finding the right word, and constantly over-stimulated. I get pain around my eyes and forehead when I am over-stimulated. I feel like I've been in a dream since I got sick and I'm waiting to wake up but nothing's helping.
Severe exhaustion including random periods where I can’t even sit up. There is nothing I’ve noticed that causes this and is a very unpredictable symptom. Sleeping 10-11 hours can sometimes reduce this but if I sleep 9 hours I’m still severely exhausted.
Lightheadedness and pre-syncope episodes
Ringing in my ears constantly and worse before I'm going to faint. My fainting episodes feel like torture because they don't include just fainting and being over with it. They include going in and out of consciousness and that's the scariest thing for me.
Internal tremors and feeling like I’m moving back and forth (possible “rocking vertigo”?). These are worse at night and the tremors are mostly in my right leg. Wearing compression knee-high socks at night sometimes help with this. I also sometimes feel like I’m falling (when trying to fall asleep) and will open my eyes to see if I am because it’s so realistic.
Postural tachycardia. Average HR lying down (on 12.5mg metoprolol): 90, standing up: 125, walking upstairs: 150.
Shortness of breath (especially when trying a new medicine or when I’ve been talking quite a bit)
Extreme sensitivity to all medications
Feeling exhausted after taking any b vitamins (oral and injections)
Neuropathic pain (more specifically on the top of my head). Gabapentin helps with this
Migraines (pain on my eyebrows which I think is caused by my neck pain because whenever I have these “migraines” my neck hurts in a specific spot. Chirorpractor agrees that this is probably referred pain). These migraines get worse when standing
Neck pain (which I’ve realized has gotten better now that I’m bedridden. Possible postural cause to my neck pain?). Neck MRI shows a protruding disk
Frequent dehydration which results in excessive drinking and urination
Visible tremors (different than just feeling my muscles shake, they are actually visible)
Heat intolerance and excessive sweating
When I scratch a part of my body, that hand will become numb for a while, and when I use a vibrating toothbrush that hand will be internally vibrating for a bit
Teeth chattering. Especially when yawning, having a presyncope or syncope episode, or crying.
Extreme shakiness of my whole body, especially when yawning.
Inappropriate change in pupil size, sometimes one pupil is a lot larger than the other
Clamy mottled hands
Visible shaking of my limbs whenever I faint
2 seizures a day since trying Bisoprolol once. Gabapentin amde these go away
Burning auras after trying Bisoprolol both before seizures and not before seizures but an increase in Gabapentin helped those go away
Numbness in certain body parts. My left hand goes numb when I deeply exhale (accompanied by palpitations)
Chest pain. I have 3 types of chest pain: one where my chest just feels tight, one where I have pain on the left side of my chest, and one when my stomach is bloated.
Pain all around my head and a sensitive scalp
Right side of my body seems to be affected more than left: right leg has neuropathic pain and experiences internal tremors, my right eye will often feel tired and droopy and will have a different pupil size, and the right side of my head will hurt. My right ear will also always ring a lot more. I experienced vertigo for the first time only when lying on the right side.
Bloating stomach and sensitivity to many foods (including dairy, eggs, bananas, pineapples. And a suspected allergy to cilantro). Also recently developed a rash when lying on the grass, and when wearing new compression stockings before they’ve been washed.
Night sweats occasionally. I need a fan on me at all times
Anxiety (I was never an anxious person before my 3 week stay at Surrey memorial, but now I am terrified to try new medications or treatment). My body no longer responds well to stress.
Loss of appetite and excessive bloating
For the first few weeks (after January 20th) my head was completely numb (like when your foot falls asleep). Then once I drank a Gatorade really quickly and it went away and never came back once I started drinking Gatorades and Nuuns instead of just plain water (which is what I drank my whole life).
A couple times I’ve had random bursts of tachycardia that were not postural, however, this rarely happens. When this has happened, I’ve been lying down with nothing to provoke it.
Blood pooling which results in red and somewhat swollen feet
Eyelids twitch a lot
Sensitivity to light
Visual snow (white dots falling from the sky). I first experienced this after taking Florinef but it never went away. I also have black lines in my vision
Sometimes my fingers randomly spread out (my pinky and ring fingers) and I’m unable to bring them back in.
When my hands are at the level of my head, my fingers go completely numb (possible blood pooling? Because when I put them back down the numbness goes away).
I’ll be really exhausted but it feels like I have an adrenaline rush inside my body"
Thanks so much for reading! I believe there's healing power in sharing our stories with others. Stay tuned for part 5 of my story next week!