My POTS Story
This February marks 5 years since I got sick. In this time I’ve gone from completely debilitated to stronger than ever and now I help other sick people regain their health and manage chronic illnesses. It’s been a long journey and the road hasn’t been clear or easy or quick. It took almost two years of Acupuncture, Chinese Herbal Medicine, nutritional therapy, exercise and yoga to get to where I am today. Whether you’re reading this because you’re my patient, you follow me on Instagram, or you found me through a chronic illness support group, I want to share my full story with you (for the first time ever!) from what happened when I got sick, to how I was diagnosed, and eventually how I started back on the road to recovery. If you’re my patient, I hope my story opens your eyes to the power of Traditional Chinese Medicine (TCM). If you follow me on Instagram, this is the story of how I became “Rachel.Acu.Yogi”. And if you’re currently struggling with chronic illness, I hope my story helps you find the courage to believe that you aren’t stuck feeling how you feel right now, that you can and will feel better, and that you are capable of drastically improving the state of your health.
Before I Was Sick
When you have a chronic illness, your whole life changes. Who you are changes. There is a Before and an After to your identity. You remember the time Before you were sick, the things you used to be able to do, or eat, and how much easier everything used to be. It is not uncommon to go through the stages of grief as you come to terms with your new life. This might sound dramatic or grim, but it’s true.
Before I got sick, I had recently turned 25. I lived with my boyfriend, J, and our two cats and worked as a regional director for a national environmental nonprofit organization. After being vegetarian for a year or so, I’d become vegan in an effort to be healthier. I went to Bikram yoga class once a week, the gym a couple times a week, and walked a few miles a day. I was past my partying phase but still drank alcohol, went out with friends, stayed up late and worked long hours. Although I was generally and somewhat vaguely trying to “live healthier”, the actual state of my health was never a real concern to me or even something I was consciously aware of. And then one day everything changed.
February 15, 2012
For some people, chronic illness slowly creeps in over time, but for me it happened on one specific day. I went from being a normal, relatively healthy, active person to completely debilitated in what seemed like a brief moment. That day was February 15, 2012. I was relaxing after work, having a beer with J, laughing about something, when suddenly I felt severe, stabbing pain in the left side of my chest. The intensity of the pain took my breath away mid-laugh. I tried to breathe through it, but the pain didn’t go away and it traveled down my left arm. My instinct was to get up and move away from the pain. When I stood up, my vision blurred and I felt shaky. I only made it a few steps before I collapsed, losing consciousness for a few seconds. J helped me sit up, and I could see he was concerned. Although I felt dizzy and weirdly weak, I tried to laugh it off as too much beer and not enough food after a long day of work. Eventually the chest pain dissipated. I was sure I’d feel fine the next day.
I didn’t feel fine the next day (obviously, or you wouldn’t be reading this!). I went to work but was dizzy, needing to sit down halfway up the stairs to the office. And then I had to half-sit/half-collapse again on the short walk from the stairs to the office door. I had palpitations and that chest pain came and went. I called my mom and told her I wasn’t feeling good, that I thought I was having a panic attack. A coworker found me sitting in the hallway and talked me into going to the ER. The ER didn’t know what to do with me and basically accused me of being a drug-seeker. I didn't even have a regular doctor at that point; I hadn't been in a few years. They gave me a referral to see a local doctor the next day, who luckily and thankfully turned out to be wonderful and became my main point-person for the next couple years.
I liked my primary care doctor (PCP) the first time I met him. He shook my hand and looked me in the eye and actually listened. I told him I believed I was having panic attacks, because I was dizzy and having severe chest pains and had fainted. I knew I wasn’t having a heart attack because I hadn't died yet, so I figured it must be a panic attack. He told me this didn't seem like any panic attack he'd seen before because I was so calmly sitting there as I described my symptoms. He ordered some tests that day, scheduled me to see a cardiologist, and gave me Ativan in the meantime just in case it was anxiety (it wasn't, but the Ativan made me not care about the otherwise scary situation). I went home to bed, but got a call later that day saying my blood work showed an elevated d-dimer and the echocardiogram showed a slight deviation, both signs of possible pulmonary embolism. I had to rush back to the hospital for further testing. This ended up NOT being my issue whatsoever, but I was then referred to a pulmonologist for follow up, in addition to the cardiologist.
And there you have it: my health saga had officially begun. I was sick, no one really knew what was wrong, and this was the first of almost endless examples of being tested for one thing, getting strange or unclear results, and then needing to test for something else. I went from doctor to doctor (primary care, countless ER visits, rheumatologist, pulmonologist, cardiologist, gastroenterologist, naturopath, neurologist, different cardiologist, different neurologist, and on and on) collecting diagnoses from each one as I went through my first year of being chronically ill.
My first diagnosis came about 1 month into being sick. This is actually something I’m deeply grateful for, as many people with my condition wait up to 6 years for an accurate diagnosis. Many are told it’s “all in their head” and that they should seek treatment for anxiety…I’m lucky that both my PCP and initial cardiologist never questioned the integrity of my symptoms and took me seriously from my first visit. The cardiologist sent me to have a Tilt Table Test (TTT). What is the TTT, you may be wondering? Well, they hook you up to a bunch of monitors to track your vitals and strap you to a special bed/table. The table then lifts up from lying flat to holding you upright, with your vitals being tracked the whole time. As soon as the table tipped upright, my hands started to go numb, I got really cold and then really hot, my vision started to blur, I was fighting waves of dizziness…and I heard the nurse saying “POTS, she has POTS” to the attending cardiologist. I thought they were accusing me of being ON pot at first! I'd never heard of it (and, as it turns out, many of my doctors hadn't heard of it either!). After the test, I had a follow up with my cardiologist who explained to me that I had POTS, or Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia. Dysautonomia is a category of illness in which your autonomic nervous system, responsible for subconscious physiological actions like breathing, heart rate, blood pressure, digestion, temperature regulation, pupil dilation, etc., doesn’t work correctly. My case was “idiopathic”, a medical term I’d come to know all too well over the next several years, which is a fancy way of saying “we have no idea why this is happening to you”.
So, I had POTS. This means that when I stand up, blood doesn’t go to my brain and my heart beats faster and faster in an attempt to get it there, although this actually causes even less blood to go to the brain, causing dizziness, exhaustion and fainting. I’m not going to go into detail about POTS/Dysautonomia here-- I will write a separate blog about it in the future. But why did I have POTS? I had every blood test possible, had every cardiology and neurology test and work up you can imagine, and tried every medication available, all of which were being used off-label as there’s no medication specifically for POTS or Dysautonomia. None of the medications worked and most of them caused terrible side effects like crawling skin, worsening of dizziness and fainting, severe muscle cramps and twitching, and even a round of antibiotics that put me in the hospital. I devoted myself to research, building binders full of studies and scholarly articles and I diligently studied the autonomic nervous system as well as all of the medical tests, results and medications I’d received.
My symptoms continued to worsen over the first year and a half. Basically every three to six months I developed new issues, in addition to the original dizziness, chest pain, palpitations and fainting I’d started with. Fatigue and brain fog came quickly after my diagnosis. I was incredibly weak…I went from active and strong to barely being able to walk around. I had to start a graded exercise program prescribed by the cardiologist which began with 5 minutes per day on the recumbent bike. I was embarrassed to go to the gym, ride the sit-down bike for 5 minutes, and leave exhausted. Then a few months later came the pain…my joints hurt, my finger tips were so painful I couldn’t text with most of my fingers, my muscles ached and cramped, and I had paresthesia all over my body (weird sensations like pins and needles, feeling as if water was dripping on me, shivery sensations and random streaks of goose bumps, as well as patches of numbness on my thighs and legs, all caused by misfiring nerves). Three months later came the digestive symptoms. I noticed I was getting full really quickly after eating, and bloating severely. The fullness got worse over time- I’d only get part of the way through a meal before feeling too full to eat, despite being hungry. The bloating became so painful that I became scared to eat. I can remember eating a salad (my last for several years) and then lying on the floor in the fetal position, crying and shivering from the severity of the shooting pain. At first I gained weight (due to the bloating) and hit my highest weight ever, 130 lbs. But after a few months, I was physically able to eat less and less, and my weight slowly crept down to an unhealthy 105 lbs.
My diagnoses, with dates, doctors and medications prescribed:
1. POTS (cardiologist, 2012. Meds: betablockers, Florinef, prescription salt tablets).
2. Fibromyalgia (naturopath and PCP, 2012, both at a loss for how to diagnose the pain. Meds from PCP: gabapentin, cyclobenzaprine. Meds from naturopath: too many supplements to list!).
3. Generalized Dysautonomia, including Orthostatic Intolerance & POTS (neurologist, 2012, 2013. Meds: Florinef, Midodrine twice, Mestinon three times).
4. A 3 page document detailing my “food intolerances” (naturopath, 2012. No meds, but incredibly strict diet).
5. Idiopathic Ischemia & Coronary Vasospasm (neurologist, attempting to diagnose the various muscle and chest pain).
6. Autonomic & Small Fiber Neuropathy (neurologist, 2013. Meds: antidepressant, gabapentin, neurontin).
7. Gastroparesis, & then SIBO due to gastroparesis, both due to Dysautonomia/autonomic neuropathy (gastroenterologist and neurologist, 2013. Meds: Zofran, Reglan, two rounds of antibiotics).
8. Hashimoto’s Thyroiditis (PCP, 2016. Meds: levothyroxine).
My First Taste of "Alternative Medicine"
I’m the first to admit I have never liked needles. In fact, I still faint when I get blood drawn at the hospital, so I had initially resisted when my mother suggested I try acupuncture. But, I was out of options and on a trip to visit my parents down south, she finally dragged me to see her acupuncturist. This was about 9 months into being sick, before my digestion had really gotten unbearable and about halfway through my list of diagnoses. The acupuncturist was very nice, listening to my entire health saga, asking tons of questions and then feeling my pulse and looking at my tongue. I was amazed at her analysis of my tongue and pulse—she seemed to have a better grasp at what was going on than any of the doctors I’d seen. She was also the first health practitioner who seemed to care about the big picture of what was going on with me. The treatment itself was relaxing and not painful. She didn’t promise any miracles, and told me this would likely take a long time to treat, but that with diet and lifestyle changes, regular acupuncture and herbal medicine, she believed I would be able to recover a lot of my health. I was immediately in love with Traditional Chinese Medicine (TCM) and started applying to graduate schools that weekend. When I went home I found an acupuncturist near me and went for most of the following year, finding it helpful to manage my pain and sleep issues. I usually went weekly, but sometimes every other week, and I took a month off entirely here and there. I made some minor dietary changes (adding meat back into my diet) and stepped up my exercise program. I was prescribed herbal formulas but ended up not taking most of them for one reason or another (they tasted bad, I was busy or forgot, blah blah). In hindsight, I believe I could have gotten much healthier, much faster, if I'd been consistent with my treatment. But hindsight is 20-20, I was still seeing tons of doctors and everyone was telling me to do something different.
The Lowest Point
I’d had just about every test there is, for every disease I didn’t have. I had tried all of the medications available, and nothing had worked. My favorite cardiologist had left the practice, and the new one completely wrote me off (“have some French fries and get on with life”, he said), my gastroenterologist had told me there’s nothing more she could do for me (have you ever been dumped by a doctor? It's a strange feeling), and I was on my second neurologist. I could barely eat anything anymore, and I had to leave my job because I was too dizzy and weak and in pain. I was sitting in a neurology appointment and the doctor was trying to get me to try a medication that didn’t work and caused bad side effects, for the third time. I refused. I can’t remember if it was me, my mother, or J who asked, but someone asked what could done about the digestive issues. “Gastroparesis is common with POTS,” she said, “There’s no treatment. So you need to start eating baby food, or Pedialyte. If that doesn’t work, we are probably looking at a feeding tube within the next year.” I cried in the car on the way home. I was just months away from starting my graduate program at the New England School of Acupuncture, and I was sicker than ever.
What Finally Worked
It was that neurology appointment where I was cavalierly told I’d end up on a feeding tube that finally made me say, and excuse the language, “F*** This Shit” to the standard western/biomedical treatment for POTS/Dysautonomia. I'm not anti-doctor or anti-medication, but nothing was working. I was miserable: now 26 years old and unable to work, wearing a medical alert bracelet and compression stockings, unable to do any of the things I enjoyed doing, and in possession of both a handicap placard and not one but two plastic pill organizers. I decided to ditch the medications, devote myself to TCM and dive in 100%. Over the next 3.5 years while I was in Chinese Medical School I steadily got better and better. Even though my life is totally different than it was before, I’m healthier, stronger and happier now. Here’s the top 5 key things that made all the difference in my health:
Acupuncture: I went once a week for the entire first year. We decided to focus the acupuncture on treating my pain and dizziness, and to use herbal medicine to focus on my digestion. It took a couple months but I got to a point where I’d be pain free, or almost pain free, between my appointments. It was a three week break from school at the one year mark when I realized—“I haven’t had acupuncture for three weeks now, and I still have no pain!” At that point I shifted to a maintenance treatment schedule of once or twice a month until I graduated.
Chinese Herbal Medicine: I went to a separate weekly appointment for herbs. It took a month or two to really tweak and fine-tune the custom formula to fit my TCM patterns, but once we got it right, it was amazing. I was slowly able to eat more and more food at one sitting with less bloating, pain and nausea. By the end of that first year, I was comfortably eating normal size meals again.
Nutritional Therapy: The more I learned about TCM, the more I realized I’d been eating the exact-wrong way for my body. As a “healthy” vegan, I’d been eating lots of raw fruits and vegetables and cold smoothies. With the restrictive diet from the naturopath, I’d had to cut out tons of vegetables, and was resorting to pre-packaged “gluten-free, dairy-free, soy-free, nut-free” snacks and meals. Because of POTS, I had been told by my doctors to drink 4 liters of water per day. From the TCM perspective, all of this was deeply damaging to my digestive system. I got rid of anything raw and anything cold from my diet. I started cooking all my meals in advance. I added meat to my diet and instead of three meals/day I switched to 5 smaller ones to give my body good energy without overloading it. My diet now consisted of lots of cooked vegetables, high quality meats, cooked grains, lots of soups/stews (easiest to digest), and plenty of healthy fats. This is basically the same plan I stick to today, although I’m now gluten-free. My digestion is strong enough that I can have a “cheat meal” if I’m out at a restaurant, and I can tolerate occasional salads and fruit again.
Exercise: By the time I had started school I had increased my exercise from 5 minutes/day on the recumbent bike to 30-40 minutes of daily cardio, as is standard in POTS treatment. Around this time I started using Instagram as inspiration for healthy eating and fitness and stumbled into the yoga community. Instagram yoga challenges got me doing daily yoga, which built up so much strength- both mental and physical. After a year of cardio and yoga, I added HIIT into my weekly fitness plans, as well as some weights, which continued to strengthen my body. I was exercising 4-6 days per week doing a mix of yoga, cardio (usually walking/hiking) and HIIT. The strength I’d built increased my endurance so that even if I was feeling dizzy I could fight through it, and the regular physical movement helped me to further manage my pain levels.
Lifestyle Changes: Having a chronic illness has taught me to listen closely to my body. I have learned to stop before overdoing it which has been one of the hardest lessons for me. I have a tendency to “push through”, but that often left me with a flare up of symptoms the next day (or week). So now I listen, and I don’t do things that will make me feel worse later. I try to eat healthy, clean, balanced food. I very rarely drink (we are talking a couple times a year). I have learned to prioritize regular exercise, sleep and recovery time. I try to meditate regularly, and go for walks in nature. Illness is your body telling you (screaming at you, really) that something is wrong. Not evaluating your lifestyle and not making the necessary changes will prevent you from regaining your health. Being so sick, for so long, at a young age, has made me really appreciate the health and the body that I have, and it is so important to me to take care of it.
Where I Am Today
Today I am living a healthier life than I was before I got sick, and I’m stronger than I’ve ever been. I have finished grad school with my Master’s degree and now have a career where I can help people regain their health, just as I have. Am I “cured”? No. I still have symptoms, which I manage with the tips above. I suspect I will always have Dysautonomia, although my life is no longer ruled by it. I have occasional flare ups, but I know how to get back on track. I estimate that on any given day, I am 80-90% symptom-free and normal. I’ve wanted to share my health story for years, but it seems fitting to finally share it on my 5th “anniversary”, and I hope it helps someone feel better about dealing with chronic illness or inspires someone to appreciate the health they do have. At the very least, whether you are a current or future patient of mine, a fellow “POTSy”, or just follow me on Instagram, I hope this helps you understand a bit more about who I am and what my journey has been.