I Need To Sit Down
The story I’m about to share is not intended to be used as medical advice. I’m sharing it to shed some light on my experience with migraines and POTS which can hopefully help others find their way in the mysterious world of dysautonomia.
You know that feeling right before you’re about to faint? It’s the sensation of the world turning on its axis quicker than you imagined. Suddenly everything is askew and you’re not sure why. That feeling, that exact moment right before you pass out is what it’s like going through a day with P.O.T.S. It's the feeling of being slightly off, just waiting to dip into the other side of unconscious that may or may not come.
Sounds fun right? I was diagnosed with Postural Orthostatic Tachycardia Syndrome in January of this year. After a long two years of mysterious symptoms and being written off by numerous doctors I finally got a tilt table test. I laid down on a table, got strapped in with a heart monitor – all very Frankenstein-esque. After a few minutes of lying flat I was tilted up. Sure enough, the black spots started floating in my eyes, my heart rate quickening then slowing down to a snail’s pace. I could feel numbness in different parts of my body, especially my legs. When they tilted me back down my heart rate spiked and I could feel one brief moment of complete blankness followed by the resuming of normal function.
This simple test confirmed something I had already suspected: I had POTS and no one could tell me why.
POTS is a syndrome that while known to few, exists in many. Prior to the pandemic it was fairly isolated in terms of being linked to certain diseases. Now it feels like it’s everywhere. My experience with POTS symptoms came on the tail end of a hellish year of migraines that came out of nowhere. So to better explain how POTS showed up, I have to take you all the way back to the fall of 2021.
Fall of 2021 was the epitome of my time to shine. It felt that way anyway. I had moved to Boston to finish a master’s program in Mental Health Counseling. I had come off a great summer spent taking classes and going for long walks. I was practicing yoga multiple times a week and it finally (finally!) felt like everything was clicking into place. Prior to that fall, I was in good health. There had really only been two significant blips on the radar when it came to a lurking illness or inflammation in my body. The first being Hashimoto’s Thyroiditis and the second being allergic reactions occurring out of the blue.
I was diagnosed with Hashimoto’s in 2019 after a few periods of extreme fatigue. Essentially I would feel fine for days or weeks and then all of a sudden, I wouldn’t be able to muster any energy. This would look like me being unable to move out of a chair once in it or being unable to lift myself of the ground without exerting all of my strength. Me, the woman who was always doing an activity would suddenly be grounded to a halt. Getting a diagnosis of Hashimoto’s was helpful as it explained the random fatigue and the whirls of energy out of nowhere. It also made me pay more attention to how or when a thyroid storm would come on. I was lucky in the sense that I had a normal thyroid function but I had high thyroid antibodies which fell in the 500s so at the time of a diagnosis, I didn’t need to take any thyroid medication. I just started paying more attention to what I ate and began watching for signs of inflammation.
For me, the inflammatory responses of Hashimoto’s looked like joint pain and brain fog. So when I started experiencing rashes around my eyes and mouth in the summer of 2020 I was thrown for a loop. The rashes would appear out of nowhere and my face would get very hot. Sometimes it would feel like my throat was closing and other times I couldn't feel anything at all until someone would point out to me that something was happening. My dermatologist determined it was perioral dermatitis and prescribed me a topical steroid. The problem being that each time I stopped the steroid, the rashes came back. In my determination to figure out what was really going on, I found a woman’s blog post about a similar experience. She went to the allergist and found the underlying cause of the reactions as opposed to treating the reaction themselves. My trip to the allergist was fruitful because after completing three days of a back panel, I found out each and every thing I was allergic to. I was also given an app that had my allergens listed along with the approved products I could use based on my allergies. Based on that information, I switched make up, soaps, detergents and cleaning products and after a few weeks the red rashes and splotches disappeared for good.
After I had locked down my allergies and reduced my inflammation everything seemed to go back to normal. That is until I moved to Boston.
Now, a few days before I moved to Boston I got my first every UTI. You might think this is TMI but it’s important to the overall story. As you recall, right before I moved to Boston I was physically thriving so a UTI was a nuisance but I did what anyone else would do. I went to urgent care, got a prescription, took it and off I went. In the haste of packing, moving and unpacking I can’t even recall how long I was prescribed the medication for. But a few days after moving I started to feel off.
I was prescribed Ciprofluoxine for my UTI. Cipro has been linked to less than pleasant reactions in people including muscle weakness, fatigue, neuropathy, depression and anxiety. These types of adverse reactions are termed “being floxed.” Now, this does not occur in every person who is prescribed cipro and because I’m writing this four years later, I have no way to prove that this medication caused the onset of symptoms you’re about to read. However, I’m including it in this story because the timing of me taking it and my onset of symptoms is remarkably close. It may be a coincidence. It also may not.
Moving to Boston that September was an amazing point in my life. I felt free and excited for the first time in ages and everything seemed to align. It was one of those moments in life when I thought, “damn this is what it feels like to get everything you’ve ever wanted.” And then it all started to slip away. First, my back started hurting. I had this pain about the size of a quarter between my thoracic and lumbar spine. I figured it was caused by lifting heavy boxes during the move or from doing a yoga move incorrectly. Each time I twisted or rotated my trunk I would get this ice cold pain shoot up my spine causing me to freeze up. I did what anyone else would do, I stopped twisting. I altered my yoga practice to exclude back bending or twisting of any kind and figured it would resolve itself over time. It wasn’t until the fall of 2023 that the pain finally went away.
After the back pain came the general fatigue. I was tired all the time. Yes I was in school and working. Yes I was socializing more than usual. But this level of tired I had never experienced, not even during a thyroid episode. I was bone tired and had difficulty waking up in the morning. I struggled to get the physical motivation to do simple tasks like getting dressed. It’s not that I didn’t want to. Mentally, I did. Physically, it felt like trying to move through sludge. The fatigue continued as I went to work and school. It kind of floated in the background and I ignored it. I wasn't going to let something like exhaustion stop me from embracing a fall in New England.
The next fun symptom that popped up was weakness. I started to feel weak in my legs more often than not. It felt like I was coming down with a flu that was taking it’s sweet time arriving. I went on like this for the better part of six weeks. Towards the end of October I noticed that riding the T was beginning to bother me. The vibrations and the rattling of the train would leave me feeling nauseous and disoriented. I felt like I was in a fever dream all the time with only brief moments of complete clarity. I would spike a fever or run hot every once and a while but nothing would ever be remarkable enough to cause me to worry because not all the symptoms occurred at once. They would ebb and flow throughout the day and while I registered them as occurring they were not significant enough to prompt me to go to the doctor.
In retrospect, not my best move. I had self-ruled out the typical illnesses I tended to have including strep and the flu. I had strep nearly ten times as a kid so I was well-versed in how it presents. I got the flu in 2016 and was in bed for a week. While some of these symptoms were similar in nature, I was still well enough to go to school and work so I foolishly ruled out the flu. I had yet to get Covid but I had to take Covid tests regularly to attend class and never had a positive test. The symptoms I was experiencing were likely caused by a virus similar to the flu or mono. But because I didn’t go to the doctor, it’s nearly impossible to figure out what that original virus was. Over the last three years I have had this exact presentation and onset of symptoms at least three times. The most recent time I had the common sense to go to the doctor and they recommended I get tested for mono. While I was positive for having the Epstein Barr virus at one point in my life, I wasn’t positive for it when I got tested. Thus, the mystery of what this original virus was continues.
Then things started escalating. The sound of a glass being put down on a counter would make me feel like someone had broken the glass in my ear. I would feel the ripple of the sensation through my body as though something had brushed past me. I was noticing the sound of everything around me with much more vigilance. The sound of the radiator hum or the tv’s buzz, the drip of a faucet and my neighbors talking in their apartment all put me on edge. I didn’t realize at the time that my hearing was becoming more attuned. I thought I had really thin walls. After the attuning, my hearing started fluctuating. I would be watching TV and for weeks, I thought my TV was broken because the volume kept going up and down without me changing it. It was only a year after all of this that I realized it was my hearing and not the TV that was changing.
The icing on the cake was my left eye starting to losing vision sporadically around the beginning of October. At first I thought it was caused by stress - like the twitching eyelid I would sometimes get during finals week. Then the vision would go out more frequently for 10, 20, 30 seconds and still I thought, “you’re just exhausted, this will run its course.” After about four weeks of this ongoing physical decline I nearly fainted at work in a meeting with my supervisor. I remember feeling exhausted from the moment I got there. I had sweat through my clothes not because it was a warm day but because my body temperature refused to regulate. In her office, the combination of fluorescent lighting, the sound of the lights’ humming and a hot room caused me to start feeling disoriented. Sweaty palms, flush skin, dry mouth – the works.
When I made it to my university’s health services they asked if I had ever had a migraine. To be perfectly honest I had never even thought to consider a migraine. I had never had headaches growing up so the idea that something could be wrong with my head even though it didn't’ hurt was beyond my comprehension at the time. When they turned the lights off I felt the sweet relief of my body relaxing into some state of okay. I was given Toradol in the form of a shot and I was sent home for rest with the directions to go to the hospital if I lost my vision with more frequency in the near future.
Turns out that near future was only two days later. After university health services I did go home and I did rest. I slept for two days but I still felt exhausted. My vision started blacking out for longer periods of time. On a Sunday morning, I rolled over in bed and opened my eyes only to find that my left eye couldn’t see anything. Fear ran through me cold and quick. Up until now I could handle the exhaustion, the weakness and the near fainting. But losing vision was not on my acceptable list of symptoms. I covered my right eye with my palm just to be sure and there it was, nothingness. I blinked and nothing. I rubbed my eyes and still nothing. I set a stopwatch and watched nervously as the numbers ticked upwards to nearly a minute before my eyesight restored itself.
Nervously I dragged myself out of bed and tried to play it cool. I went so far as to make myself coffee and breakfast before I walked myself to Mass General Eye and Ear for what I was telling myself would be a normal and quick trip to the ER.
You might be wondering why I was acting like this was no big deal. It was my stress response. Weeks of dealing with unknown and unforeseen symptoms had put me in the robotic mode of pretending everything was fine. I recognize now everything was not fine. Ideally, you don’t want your body to be doing any of these things for a two month duration but my coping strategy to handle the stress was to say that I was fine and move on. To anyone who asked how I was feeling I would reply “I’m fine.” When I got to the ER, I didn’t even bother telling my family or my boyfriend until hour three. Masquerading as “fine” at its finest.
Upon my arrival at the ER, I was hopeful. I figured they would tell me it was stress and I would be sent back out into my life to get more rest. But the moment I was brought into the exam room, I started to feel uneasy. The thing about hospital lighting is that it's a migraine sufferers worst nightmare. Fluorescents, heat, humming, the perfect combination for me to become unwell. Waiting for the doctor, I started to get hot and dizzy. The exam room had one of those automatic lights that turned off without movement after 30 seconds or so. When the light turned off and I perked right up like a daisy.
When the doctor arrived he shone a bright light into both eyes. He had me hold my arms out and did what I now know is a standard neurological exam. Then his face changed. I saw fear then I felt fear. My left side was starting to droop. Not so significant that it would present like a stroke but enough for he and I to become worried. My left eyelid, cheek and mouth were slightly askew and my left side was certainly weaker than my right. He left the room to get his colleague and in those brief moments I felt the now familiar sense of panic rise up in my chest. It’s easy to be nonchalant about your eyes bothering you. It’s not easy when you can’t raise your left arm for what feels like forever but may have only been a few seconds of delayed response. After an MRI and some incredible care from the nurses (shoutout to the nurse who gave me an ice pack after I passed out from getting an IV) I was told they suspected a hemiplegic migraine. Hemiplegic is a fancy term that means one side of you is impacted. In my case, the left. I stayed in the ER for a few more hours and was discharged around 9 pm. As I walked myself home, I thought “the worst of it is over” despite the fact that I was physically shaking from anxiety. Now I think, “why the hell didn’t you call someone?” It’s a scary thing to be in the hospital by yourself but my pride and my stubbornness prevented me from calling anyone to come and check on me or come and pick me up. Instead, I chose the more difficult route or perhaps the self-inflicted punishment route and I willed myself to get through this on my own.
By the time I got home, the headache had finally started. The hospital lights had done their job and triggered the full-fledged migraine attack. Up until now I hadn’t had any version of a headache or sensitivity to light. But sitting in a hospital under fluorescent lights with hot air was the perfect trigger and suddenly I was in it. If you’re someone who suffers from migraines my heart goes out to you because the pain I experienced in the days and weeks following this visit I would never wish on anyone. It felt like I was being electrocuted. My right leg muscle cramped so much it caused physical pain in other parts of my body. My joints burned. I tossed and turned in bed trying to find some semblance of comfort but each move set off a cascade of pain. My head felt like someone had put a metal band around it and inside there was a balloon trying to pop. At numerous points I thought I would have die because the pressure in my brain was so great I assumed I was having a stroke or a blood clot. I followed the hospital’s prescribed regime of medication. I took it like clockwork but nothing and I mean nothing would break this migraine. After four days in bed, I dragged myself into work with sunglasses and a baseball cap on. By the end of that day, I had landed myself back in university health services where they gave me a second shot of Toradol and let me know they couldn’t give me anymore. When I went home that day, everything – the days and weeks that followed became a blur. Despite the shot, and trying every over-the-counter migraine medication I could get my hands on my symptoms were getting progressively worse. I developed the hearing of a bat. I could hear the sound of the blood in my own veins, a girl wearing flip flops 2 blocks down from eight stories up (I dragged myself out of bed to confirm her coming) and the sound of a faucet dripping from an apartment below me. I could hear things that no person should be able to hear which is why living in an apartment became almost unbearable. Every single sound of every electronic I owned I could hear. Every movement someone made in another apartment, any vibration or hum that occurred I could feel because my body would physically vibrate in response. I could feel in my physical body jump when the garbage truck showed up because I could feel the trash chute vibrating as it was emptied out on the ground floor eight stories below. I would eventually see an audiologist who would confirm that there was nothing wrong with my hearing. Imagine my frustration when I had the hearing of a bat and was still suffering from intermittent hearing fluctuations and being told that my hearing was in fact, perfectly fine.
I recall one specific instance where the vent in my bathroom had a drip. It wasn’t coming from my apartment but the sound of the drip hitting the metal of the grate made me nearly throw up. I crawled out of bed on my hands and knees and dragged myself into the living room ripping off a piece of cardboard from a stray box. The sound of the cardboard ripping nearly made me pass out. When I finally made it to the bathroom I hoisted myself up onto the tub, grabbing at the wall for support. It was only then that I realized I could crack my head open given my physical weakness. Had I been healthy I wouldn’t have thought twice. But I refused to give up. The drip, drip, drip of the leak I could feel in my body each time the water hit and it felt like my bones were shattering. As I grabbed the cardboard, I ripped off a piece of duct tape and realized my mistake. The sound of duct tape at this exact moment in time made me double over in pain. I had the wind knocked out of me which is astounding considering it’s duct tape but this was a remarkable time. After taping up the cardboard and dulling the sound of the drip mildly, I dragged myself back to bed where I sobbed uncontrollably for the better part of twenty minutes.
I was so tired from the physical pain, the mental anguish and the shear amount of fear I was holding in my body that I couldn’t keep it all in. I recall crying so hard that my body actually hurt more. The typical relief that came from crying never came and instead I was left with a head throbbing more than before and a sense of the room spinning out of control. During this time I had a visit with the ophthalmologist because I was still losing vision in my left eye. After getting my eyes dilated and having a camera pressed into my eye balls (an experience I would not like to have again) they could find nothing wrong with my eyes and thus the mystery of the loss of vision continued.
For the better part of November and December I would try to go to work or school but rarely made it through both. More often than not I would make it through work by the skin of my teeth. But when I would go to class, the bright lights of the projecting screen would send me into a state of quick and swift unease. I would become nauseous, my breathing would change and I would wince my eyes closed. The sound of water flooding into my ears would overtake me and I wouldn’t be able to hear what people were saying. I would heard this very specific high pitched tone and by that point I knew it was time to go. As you can imagine, my social life crumbled. My school and work life suffered and my dating life had to be sacrificed. I couldn’t take care of myself let alone love someone else. The amount of times I would need to leave somewhere because my physical body couldn’t stand it was so numerous I lost count. I would get fight or flight out of nowhere especially if lights were bothering me and I would become so afraid that I actually couldn’t speak. One time, I was trying to get to CVS to buy Excedrin and I had to go outside with earplugs shoved deep into my ears with cotton balls on top of them, two separate wash clothes on either side of my ears, a winter hat, sunglasses and a baseball cap on to make the two blocks. I was trying to shield out the light and the sound. You might say, gee that doesn’t sound feasible. Well, let me tell you – everything is feasible when you’re fighting for survival.
By the time the holidays rolled around I was barely functioning. The sunglasses, hat, medication combination was only getting me so far but my family was worried about me. When I caught the train home, I had to take two Dramamine because the vibration and movement made me feel like I would throw up at any moment. I practiced deep breathing and listened to Evermore on repeat. Something about the tones in that album allowed me to rest even slightly amidst the chaos whereas other music or other songs would cause me to feel anxious and dysregulated. When I was back at home, I felt better. I wasn’t sure why as I still had sensitivity to light and sound but it was less bad. I tried to do all the things they tell you to do for migraines. I stayed hydrated. I tried to avoid processed foods like peanut butter which I now know is a huge trigger for me. I got acupuncture done. I wore sunglasses and set a sleep routine. I sort of pulled it together until I got back Boston.
Turns out, my suspicion about things being better in NY versus Boston wasn’t unfounded after all. In the first few weeks of the new year, I started feeling sick again. I kept receiving acupuncture in Boston and the tension in my body paired with my anxiety was so bad that even electrodes connected to the needles did nothing to provide relief. I started experiencing panic attacks along with paranoia which I had never experienced before. In the month of January alone I must have had no less than five panic attacks that seemed to come out of nowhere. One in particular I had in an Uber on my way home from school. I had to stop taking the T because riding the train was physically unbearable. I had started to have this particular attack waiting for the Uber. When I got in the car it started escalating – shaking hands, rapid heart rate, sweaty palms, not being able to feel my legs and difficulty swallowing. By the time we got to my apartment I realized I couldn’t get out. I physically couldn’t move my body to get out of the car because I was paralyzed with fear. Now, thank god I had a kind driver who saw what was happening to me. He sat outside of my apartment building for twenty minutes and talked to me until it passed.
Sometimes when they would happen I would find myself gasping for air wondering if my throat was going to close out of nowhere. I would later learn that trouble swallowing can be a symptoms of a panic attack. Trouble swallowing can also be a symptom of anaphylaxis which becomes important later on in this story. To calm my nerves about the potential of my throat closing, I started keeping Benadryl on hand everywhere I went. I then began carrying around a small pill box of everything I could potentially need. From Advil to Excedrin, Benadryl to Claritin, I carried doubles of everything just in case something were to happen. I was learning how to live with the expectation that something bad was right around the corner because at the time, it typically was.
Along with the anxiety attacks, the paranoia presented as an extreme focus on my physical safety. From my recollection, the paranoia came on overnight but it’s more likely that I was developing an increased awareness of my physical safety given the problems I was having with my health for quite some time. I was typically paranoid about an intruder. I would listen for my neighbors in the hall and hold my breath when one of them would pass my door. I was afraid someone would come into my apartment and I would be helpless. From a physical standpoint I was laying down on my couch or my bed at all times I wasn’t at work. So the sensation of being helpless increased because I literally didn’t have the stamina to sit up right, let alone stand. On particularly concerning night, I would sleep with a knife on my nightstand because I thought if an intruder got in, I wouldn’t be able to get up and get to the kitchen so I needed something to defend myself with. I would wake up in the morning never quite breathing a sigh of relief but more so anticipating another day and night of paranoia to come.
As I’m writing this, it is astounding to me that I lived like this. But I was so deep in it at the time that I didn’t know what to do. I was meeting with a therapist regularly and had the option to take anti-anxiety meds but I refused. I can see now I was not the best headspace to decide what was a good decision for me but I remember being hell bent on figuring out what was causing the migraines in the first place. I had met with a neurologist in New York in December and I remember fighting her tooth and nail about the fact that I don’t get migraines. She politely told me I do now. I left her office feeling defeated that I wasn’t being heard but even more dedicated to solving this horrible mystery on my own.
Sometime around February of 2022, I woke up in a panic. I had gone to bed early after an anxiety attack that led to a crying episode that exhausted me so much I climbed into bed defeated at 8 pm. I woke up with a start around 10 pm because I couldn’t breathe. This wasn’t a state of not being able to breathe because of hyperventilation. This was full-fledged throat closing anaphylaxis. I lunged out of bed to grab Benadryl from my bathroom and when I opened my bedroom door, my eyes burned. My entire living room was filled with the stench of cigarette smoke.
As I would later find out, my neighbor below me had been dating a man who was a chain smoker. When the weather in Boston got colder around November, he began coming inside and chain smoking in the evenings. The smoke would come up through a vent in my living room but because I had been going to sleep earlier than when he started smoking, I hadn’t noticed it until that night. All of this time that I had been trying to get better I couldn’t because each night when I went to bed, I was breathing in cigarette smoke which is a known trigger for migraines. I also happen to be sensitive to cigarette smoke in general. When I’m around it, my eyelids itch and my throat gets scratchy. It was no wonder my migraine medications weren’t working. Each day I had a brief reprieve from a trigger but at night I was being flooded with eight to ten hours of uninterrupted cigarette smoke.
Eventually my building got rid of the smoking problem but the damage had already been done. At this point I was 5-7 months into this ordeal and the havoc on my nervous system was too intense. I still went to school with a baseball cap on and traveled with ear plugs. I still had sensitivity to light and sound and had my hearing going in and out at random times. I still had a constant sensation of feeling off balance and on edge. But things seemed a little bit better. I spent more time outdoors breathing in fresh air and was able to go to school and work more often than not. By the time I graduated in the Spring, I was having a migraine episode once every three to four weeks as opposed to nearly daily.
Right after my graduation, I got Covid. You might be thinking, damn you can’t catch a break and during this time, you would be right. I got Covid in May of 2022. Having Covid felt like getting electrocuted in a similar way to my migraines but instead of the pain being in my head, it was in my joints. After about two weeks, I tested negative and for the better part of the summer I struggled with respiratory problems and fatigue. At this point I wasn’t too concerned. My body had already been through hell. I took things slower and gave my body time to heal. By the time fall came around, I was getting back into a routine. I had started practicing yoga again – albeit much shorter timeframes given my lack of respiratory stamina and I started taking walks but I couldn’t go as fast as I used to. I began to notice that my heart didn’t quite feel right. When I went for a walk, it felt like my heart had trouble starting. That’s the only way I can describe it. I would start walking and my heart would be sluggish. There would be this moment of suspension where I would feel like I was going to pass out and then my heart would kick back in and settle into its normal rhythm. I started noticing an increase in chest pain but given how much my body had gone through from a nervous system standpoint, some aching in my chest was the least of my problems.
In general, my daily functioning had improved in the sense that I could go to work and go about my day. But I was dealing with constant sensitivity to light, floaters in my eyes and tension headaches. When I would go to work I would need to wear a baseball cap because my office had fluorescent lighting. I would and continue to carry snacks with me at all times along with water and electrolytes because I would get dehydrated easily. Around October, I began noticing that I would get anxious on walks. Not my typical presentation of anxiety either. When I’m anxious I typically present with an increased focus on order. I basically become more regimented with putting things away, knowing where everything is and double checking if I’ve locked the front door or turned off the stove. I’ve been this way since I was a kid so I’m not surprised when I notice an uptick in my controlling behaviors. I understand that it’s anxiety and I try to figure out what made me anxious in the first place.
When I started getting anxious on walks, the anxiety felt completely different. I would start walking my normal route and be unable to feel my legs. I would wiggle my toes but they would feel tingly or numb. I would move my fingers and they too would feel numb, or like I couldn’t quite feeling everything fully. My heart would do it’s routine of taking a few moments to get going but then I noticed a change in its behavior. My heart would start beating too fast and then too slow. I would have chest tension and a rapid heart rate and as suddenly as it came on, it would go the alternate direction. My heart beat would become sluggish. It would become so slow that my entire body would stop moving. I would go from moving at a somewhat normal clip to moving through concrete. On top of the heart fluctuations, everything felt too bright and too loud. I had an increase in hypervigilance about everything and everyone around me. Half of this I attribute to the anxiety I felt about my body being in a state of vulnerability as I walked down city streets. But the other half of this I attribute to the beginnings of POTS
For the majority of the fall and winter of 2022, I struggled with figuring out what my body was doing. When I would go for a walk, I wouldn’t be able to pick up speed easily and on the rare occasions I went for a run, it felt like my entire chest and throat seized up. I would feel like I was having an allergy attack or an anxiety attack out of nowhere. There would have days where I felt completely “normal” in the post-migraine world and I would go outside and feel somewhat okay as long as I brought my “just-in-case” items (i.e. baseball cap, sunglasses, water, and a fanny pack full of emergency medications and snacks). Then I would have days where everything was off. I had gotten Covid for the second time around the end of September. This time I had only a few days of feeling electrocuted versus a good two weeks the first time. But after this time, I started noticing odd things happening. When I would go for a walk, instead of having one anxious day and six normal I started have seven straight days of symptoms. Each day I would go outside and lose feeling in my legs. There were multiple occasions when I would go out and suddenly my legs would stop working or I would try to keep going and would need to immediately sit down. I learned how to walk on blocks that followed the direction of traffic home. I also learned how to not stray too far from home out of fear that my legs would stop working out of nowhere and I would be vulnerable to danger. I kept trying to go outside. Each day I would get up with the intention of doing something, anything to prove that I was capable of overcoming what this thing was. But each day, my world got smaller and my symptoms got worse.
One day, I had gotten out of bed after a migraine episode and suddenly my legs stopped working. I sank to the floor with absolutely no explanation as to why this was happening or how long it would last. My heart rate spiked and I sat on the floor dazed and confused as to what was happening. More frequently, I started noticing difficulty holding onto or reaching for things. My right hand in particular wouldn’t do what I was willing it to do. I would go to pick up a glass and drop it or I would look at something to pick up and my hand wouldn’t move to grab it. Nothing was working quite as smoothly as it used to.
Because my body was experiencing such extreme and sudden difficulty I started cutting back on activity. I stopped going out for long walks because I didn’t trust myself to stay upright. I cut back on time with friends because bars and restaurants were becoming overstimulating when they used to be fine. I was back in a state of fear and anxiety that was being exacerbated by unknown physical symptoms. This combination landed me in the ER not once, but twice. My first trip occurred in January of 2023 when I went to the Museum of Broadway (would still highly recommend) after a night out with friends. Now, I will tell you I was dehydrated. I had drank the night before and despite my best attempts. I was still dehydrated in the morning. Dehydration for someone with migraines is the kiss of death so I certainly had a role in triggering this episode. In the morning, I had tried to go for a walk. I made it approximately four blocks from home before something told me to turn around. When I got to the museum I felt slightly off but not enough to keep me at home. I had walked there slowly, making sure not to escalate my heart rate for fear of having one of those chest seizing moments.
I was doing fine until I went into the room with all the back of house equipment aka a dozen or more computers and switchboards all gathered in one place. Heat. Humming. Bright lights. The trifecta. Within moments of being in that room I knew I was going to faint. I felt my heart rate spike, my mouth go dry and my palms go sweaty. I tugged at my sweater and felt the ground shift under my feet. But when I moved into air conditioning I felt better. As I walked the four blocks to the a restaurant for lunch (not my best move) I felt the waves of almost fainting course through me. I truly don’t know why I didn’t sit down or put myself in a cab. I guess I thought my blood sugar must be low. Over the course of the fall, I had learned that I needed to eat every three hours. Pretty much overnight I stopped getting my normal hunger cues. If I went too long without eating my stomach didn't rumble. I blacked out. So I began eating every two to three hours like clockwork in order to regulate one part of my body in the hopes of staving off the majority of symptoms likely to follow.
The moment I was seated at lunch, I ate everything I could. But as I was eating my body was swaying and I could feel my vision going in and out. I was probably going in and out of consciousness. I tried taking small bites to make sure I didn’t throw up all the while I had my hand wrapped around the table holding on for dear life. I tried bread, a virgin bloody Mary (I thought the tomato juice might held), a Caesar salad, a diet coke. Despite the amount of food I put in my body I still felt faint. It was forty-five minutes of utter fatigue, black spots, sweaty palms and a churning stomach followed an inability to form coherent sentences. I’m honestly surprised I was able to stay in a chair at all. Sometime around the hour mark I revived. Not fully, not even remotely close to fully. But for a solid ten minute there I felt almost normal then it came crashing down again. The second wave of almost passing out was my cue to leave. The moment I put myself in a taxi cab I started uncontrollably shaking. Teeth chattering, arms jerking, legs bouncing - shaking. The important part here is that I was fully conscious during the shaking. Losing consciousness puts us in seizure territory and that is not a good place to be for anyone involved. I shook the entire cab ride home and when I laid down on the couch I immediately thought I was going to throw up. Sitting back up, the shaking continued and after a trip to cityMD and a recommendation to go to the ER I was told once again, “you have a migraine.” The shaking couldn’t be explained. Some scans and fluids later, I was sent home to rest.
A month later, I was back in the ER for the same type of episode. After another round of scans and perfectly normal bloodwork I was told there was nothing they could do. I don’t fault the ER for their response by the way. My labs, scans and exams were all normal and thankfully continue to be. But I remember feeling so frustrated looking at the ER doctor who had just told me there was nothing they could do. I cried as I spoke to them and said “this isn’t normal. Nothing I’m experiencing is normal” and yet, there was nothing to be done. They referred me for a neuropsych evaluation and a cardiology appointment. Now, I was offended when they gave me a neuropsych evaluation. It felt like I was being written off by doctors as someone who was suffering from mental anguish as opposed to any real physical pain. The idea that they wanted me to have my cognitive and emotional abilities evaluated was incredibly demoralizing. However, when I did end up having my neuropsych evaluation completed it was incredibly validating. I did not come out of that with a diagnosis of anxiety which then allowed me to disprove every single doctor that tried to tell me I was anxious after that. During my initial cardiology referral, POTS was floated as a potential diagnosis but at the time my heart's episodes were not routine enough to be of note. I ended up going back to the cardiologist a few months later and she performed a pseudo-version of a tilt table test. Basically they tested my heart rate laying down, sitting up and standing up. My results were fairly normal however POTS considered to be in consideration.
What I would later find out about these two specific episodes was that they were likely triggered by an iodine supplement I had begun taking in back in September. After having Covid for the second time, I began working with a functional medicine doctor. Now, for the record I believe in functional medicine and have had positive experiences before. This particular doctor encouraged me to take an iodine supplement. The supplement and dose I was given was an incredibly unhealthy amount. I only found this out after discussing the supplement and dose with my integrative health doctor for a second opinion.
Too much iodine for someone like me (hypothyroidism) is that it can lead to increases in mental anxiety as well as increases in physical presentations of anxiety. It can also lead to/ exacerbate hypothyroidism, the exact thing I already have. I was taking a supplement that was leading to thyroid storms and increases in anxiety. Oh joy. After I stopped the iodine supplement I really thought everything would go back to normal. I chalked up my two ER visits to me having a reaction to too much iodine which I take full responsibility for. Despite it being a poor recommendation to begin with, I should have done my due diligence before I started taking something that could impact my body in any way. Since then I've become incredibly careful about looking into what I'm taking and how it can affect me.
As a result of these experiences, I decided to switch approaches in terms of how I handled my own care. Instead of treating my migraines solely with medication or supplements, I decided to go to physical therapy. I was still experiencing migraines and I needed an alternate approach to treating them outside of medication because meds weren’t cutting it. I had tried Toradol, Excedrin, and Nurtec. I had gotten IVs during episodes and still the migraine would come back with vengeance. I needed to try something different and the idea of reconditioning my nervous system with physical therapy seemed appealing.
When I began PT my nerves were shot. The best way that I can explain it is that it felt like my nerves were coming out of fight or flight and I had to force them out of it. Remember, I had spent the better part of two years having my nervous system be ravaged by virus after virus with a fun dose of migraines on top. Each time my nerves had a chance to recover they would be hit with a new challenge. It took me nearly six months of twice a week PT to get back to a semi-functional level of movement. The first day at PT, I was asked to do a nerve glide. It looks like holding a pretend tray at shoulder height and moving your arm out away from you and back. I thought I could do this with ease. Boy, was I wrong. When I moved my arm out, I would lose feeling in my legs completely. Certain movements made my back go ice cold. Remember the original back injury from Boston? It never went away. If I twisted to the left or right I would lose vision and my hearing would go out. Some movements would cause my face to go numb or my hands to have a delay in motion. Each time I went to session, I would need to sit down for two hours afterwards because I would feel my nerves continue to remain activated long after I stopped using my muscles. I had to work through the frustration of knowing I used to be able to do things and now the act of trying even a simple walking drill left me riddled with both mental anxiety and the uncomfortable sensations of an overstimulated nervous system.
Yet, despite all of this, PT was helping. It was giving me insight into how my nervous system had been impacted from the last few years. Despite every medical test telling me my body was fine, the physical reactions I was fighting to overcome were telling me something was clearly going on. It was only a matter of figuring out what.
Over time I noticed significant changes including greater gaps between migraine episodes. Some days I was able to move like a used to and others I had to fight through the session not to pass out. But within those six months, I also noticed something else – in all the time I had been focused on healing my migraines, I had been ignoring the symptoms of dysautonomia.
During PT, I was feeling better physically. I was also working with a talk therapist to discuss trauma and process everything I had gone through. I thought of it like peeling off each layer of the experience until I got down to the root cause. I fully thought that the root cause of all of this was the original virus I experienced in 2021. But so much time had passed between then and now that during my PT sessions I began uncovering a whole new batch of symptoms which prevented me from getting to the root at all.
Sometime in the summer, I started having more frequent episodes of autonomic dysfunction. I attribute the uptick in dysautonomia awareness to the reduction in other symptoms. Physically, I was able to do more, like hold a plank or do gentle twisting and because I had stabilized the muscles to some degree, my nervous system had a greater ability to express itself. I also had more time to pay attention to it. The sensation of having difficulty getting my heart to start up and fall into its natural rhythm when walking like I had experienced the summer before was back and occurring more frequently. I started to feel lightheaded when I changed position and felt weakness in my legs more often than not. I noticed that when I would lay down, my heart rate would spike rapidly and standing for normal periods of time was no longer an option. When I would stand, I would get tightness around my eyes, start to see spots and I could feel my heart trying to do its job but the sluggish sensation would take over. I would then need to lay down and put my legs up. I went to my PCP during the summer and was told to put more salt in my diet because I had low blood pressure and in the summer, we need more salt to retain hydration. While all of this is true (I do in fact have naturally low blood pressure), I felt dismissed. I was being written off by doctor after doctor telling me that what I was experiencing was not really occurring or that I was making it up. When I read through my doctor’s notes it’s fascinating to see how I’m described. It’s like I’ve been marked as a patient to write off, not someone to listen to. Despite each rejection and there were many, I kept going to doctors seeking an answer as to why this was happening. Not one could explain it.
The idea that a doctor couldn’t figure out what was wrong with me never really crossed my mind until last year. I know that it’s naïve of me to think that. But prior to last year and the onset of my POTS symptoms, I would have said fairly confidently that I believe in doctors’ abilities to figure out what’s wrong. But for me with POTS, it’s not so much about figuring out what is wrong. It’s about figuring out where the wrong thing is coming from and why.
If you haven’t caught on yet, I’m a big why person. I’m not good at accepting things as they are. I have this natural tenacity for digging deep into something in order to find some semblance of resolution. I really like to know what causes something and when it comes to my health, I desperately want to know why something in my body is occurring. If I can know the why, I can figure out how to treat it. With POTS, I conceptualize it like a waterfall. This is not medical advice and it shouldn’t be taken as it. This is simply the way I make sense of myself:
Something in my body is going haywire and I have to figure out what system is having the first reaction that leads to the rest of them running amuck. Many of my systems from endocrine to gastro to neuro are being impact however one of them is leading the pack. So instead of me treating the symptoms across all the systems at once and doing so fairly poorly, I have taken the approach of finding out where the fire started in the first place by regulating my systems the best I can. I make it a point to not let my nervous system get into a state of discomfort if I can help it because with POTS I don’t have a normal reaction to discomfort. The threshold I used to have for discomfort that would come from going too long without eating, standing in one place, or being thirsty has virtually been eliminated. It feels like that normal window of time is gone and I only have the extreme reaction of fight or flight. For example, pre-all of this, if I was hungry and wasn’t able to eat nothing would happen. I would think, “oh I’m hungry” but I could wait it out until I found food. Now, if I don’t eat when I’m scheduled to (every two to three hours), I don’t get a hunger cue that I can suppress. I get lightheaded with a racing heart and slump down in a chair.
The same thing happens with standing. Pre all of this, I could stand no problem. Stand in line, wait for the train, stand at the street corner or wait to cross the road was all normal and easy. Now, static standing for any period of time that extends past a few minutes results in loss of feeling in my legs, chest tightness and black spots in my eyes. It’s no longer a “oh I could sit down.” It’s “I must sit down right now.” As a result of this, I put a lot of time and mental energy into making sure my nervous system doesn’t get stressed out in any way. I practice meditation daily and do reiki on myself. I build out my schedule specifically so I am never rushing. I’m never rushing because physically I literally can’t accelerate like I used to and the mental stress that comes from rushing I no longer recover from quickly. I used to be able to brush off something like rushing. Now, if I’ve been rushed I spend the next twenty minutes trying to regulate my heart rate back down to normal while fighting off the intrusive thoughts that say “you’re going to pass out” so it’s not worth it for me to pressure test the system like that if I can help it.
Now this method of staying within the healthy space of comfort versus discomfort works most of the time but it’s not perfect. Life is unpredictable so I have needed to create methods to roll with the punches. Sometimes it works, sometimes it doesn't. One time it worked was me being able to wait in line at airport security. It was a ten to fifteen minute wait and the incremental steps forwards were brutal from the mental standpoint of worrying about passing out and from the physical standpoint of feeling all the blood pool in my feet along with my heart slowing down. After going through security I had to sit down and wait for my body to catch up. I feared a fainting and shaking episode would occur but thankfully it didn't so we can take that win.
One time it didn’t work was when I had to fast before getting labs done in the morning. I was already pushing it by skipping breakfast. I tried to get the labs done as early in the morning as possible and I ate immediately following the completion of the draw. But later that afternoon I took the subway. The overstimulation of the train, the rattling, the shaking, the sound of the announcements and the bright lights paired with the stress on my nervous system from the morning resulting in a near fainting on the train. I could feel it start to creep up. The sudden nauseous, my right hand beginning to shake out of nowhere. But what could I do? I was already seated. I had already started to eat something in the hopes of regulating my blood sugar. I was death gripping my Chill Pill, a device a had bought specifically to stave off anxiety attacks. By the time I exited the train we were in urgent territory. Climbing the steps to the subway which on a good day had become challenging, felt like I was putting my heart through one of those cardio stress tests.
In situations like this, my brain goes into one mode: safety. I had to get to where I was going so I could lay down or pass out somewhere safe. By the time I made it to my sister’s, only a four minute walk from the subway I was dripping in sweat and breathing heavily. Three cold glasses of water and elevating my legs did nothing and within ten minutes I knew a POTS episode was going to occur. Laying down with my legs elevated as I fought to stay consciousness was excruciating. It essentially feels like all the parts of my body that are supposed to work stop working at the same time. I was blooded with nauseous, while feeling like my throat was closing. I was ice cold then incredibly hot. My right leg cramping and my heart racing them slowing down and then back up to racing again. The only thing I know what to do in situations like this is eat small things and intake salt. But when that failed after forty minutes, then came the shaking.
By this point, I’m used to it. The uncontrollable shaking is almost a relief in the sense that it feels like my body is expelling all its excess energy and eventually it will stop. It’s slightly more endurable than the near fainting because I’m fully conscious and in my experience, after the shaking I’m somewhat back to normal in the sense that I’m not likely to pass out I just feel utterly exhausted. But when I think back to this moment and other moments that have been similar, I realize just how scary they can actually be. I may be coming across as having a very laissez-faire attitude about all of this but truth be told, it’s scary as hell.
Fear lives in my body and resides next to me as a constant companion I didn’t ask for. It travels with me everywhere I go and my mind has become so accustomed to assessing for potentially fearful scenarios I sometimes forget how unlike me this mindset really is. You see, my normal has become hypervigilance which is natural when you’re dealing with POTS. Of course I would become more attuned to paying attention to my surroundings, what my body is doing and what I require to get through a situation. It’s the act of surviving, not necessarily thriving in every situation.
What makes me sad about the fear is how much I miss simply being somewhere and not thinking about it. I miss the act of sitting at a table and not wondering how long it will take the food to come out because if I don’t eat something within x amount of time I will start shaking. I miss being able to go to a party and not worrying about how long I will be standing for and what happens if I stand too long. I miss being in social situations and not always having to be the one to sit down. I miss being able to get up at a wedding and dance to my heart’s content instead of monitoring how much my heart can take and when I need to sit down and chug water.
POTS has taken a lot from me and the processing of healing from it and with it is something I’m still navigating daily. One of things I’ve learned how to do is live in the in-between. It’s this tiny window of time where everything comes slightly closer to being fine. It’s the moment when my symptoms aren’t flaring and my mind isn’t whirling and I’m somewhat close to my old self. In these moments I can just barely grasp at who I used to be. But just as quickly as they come on, they’re gone and the grief that comes with that is heavy and sometimes all-consuming. I’m not the poster-child for navigating POTS with ease and grace. There have been plenty of times where I’ve said, “I can’t do this anymore.” By “this” I don’t mean life itself. I mean this version of me existing in this version of life. This version of me that is constantly carrying a heavy mental and physical load of worry because she has to and because she’s been conditioned to. In those moments, I feel everything: the anger, the sadness, the bafflement and the disbelief that one day I was healthy and one day I wasn’t. One day I was doing yoga and running around the city and most days I’m staying close to home and trying to find happiness in much smaller moments as opposed to the big, bold and beautiful ones.
Even as I write this, I feel the familiar ache descend on me. This dark cloud kind of settles all around me trying to get me to believe that this is how it is and this is how it always will be. But that’s simply not the case. I refuse to accept that this is how it always will be. In the course of the last four years I’ve been told numerous times that this is just how it is and each time I’ve found a way to change the circumstances. I was told I would need thyroid medication and I changed my diet which helped get my antibodies back down to a healthy level. I was told steroid cream was the only way to treat perioral dermatitis and I changed my products to avoid my allergens and the rashes went away. I was told I get migraines and I went to physical therapy which took my migraine occurrences from weekly down to once every three months at this point. I was told I have POTS and that there’s no treatment for it and yet, here I am finding another way.
It's not lost on me, the power of a resilient soul. My soul has learned how to be resilient even when I haven’t wanted to be. And let me tell you, it can be really annoying. Sometimes, I want my soul to quit. It’s a bold statement but it’s true. Sometimes I want my soul to give up on me because it would give me a reason to sit in self-pity when life becomes a bit too challenging for my liking. When I’ve hit the mat too many times to count and I barely have the strength to sit up let alone stand up for another round I found myself faced with the incredibly daunting moment of wondering if I can do it all over again or if I even want to.
Over the last few years, I’ve hit the mat a lot. I’ve had too many moments to name that have led me to wanting to throw in the towel and say, “ this is how life is now.” Yet each time I’m in that space of darkness, something deep inside me whispers “no, not today.” My soul pipes up exactly when I need it to even if I don’t want it to. In these moments, I want to sit in the self-pity. I want to take stock of every single thing I’ve been through in the last few years and hold the list up for my soul to see. I want it to remember 2021, the year of mysterious viruses and migraines. I want it to remember 2022, the year I lost myself because I had been focused on surviving the year before. I want it to remember 2023, the year that nearly broke me with the countless doctors’ appointments and write offs of anxiety, the year of surprising medical episodes that left me panic stricken and afraid of my own body’s ability to function.
I want my soul to remember each and every one of these things and I want to be able to use them as a reason not to keep trying so hard. I want my soul to feel and relive what we went through so the next time a challenge comes up, it says “You’re right, we have no more fight left in us. Best to just stay down.” But it won’t do that. It will not give me one inch of space to sit in self-pity. Instead of telling me to stay down, it whispers “get up.” Instead of telling me that it’s okay to accept that this is a version of my life, it says “we will find another way.” Instead of allowing me to feel the burning anger that rises up each time I have an episode, it says “this too shall pass” and in those moments, I am equal parts frustrated and relieved that my soul is still there, making an effort.
I’m frustrated that it won’t let me stay in the space of pain and hurt. But I’m relieved at the same time that it continues to shine despite everything. If there’s one thing this medical and sometimes metaphysical journey has taught me, it’s that my soul is indomitable. It can’t be broken and it cannot be suppressed. So even when I’m physically weak and my body is tired, when my mind is clouded by brain fog and my body won’t do what I’m willing it to do, my spirit remains steadfast. I try to do things that I enjoy like singing but even then sometimes POTS wins. The video below is me feeling my blood pressure plummet when I try to sing. I also struggle with pitch and the ability to get air into my body effectively. The result is some fairly poor singing by my standards.
It's a remarkable thing to realize how strong you’ve become even when you don’t want to be and it’s a humbling thing to recognize how much you’ve overcome even if you didn’t want to in the first place. Down below, I’ve included the things I’ve learned about myself on this journey that have been helpful in mitigating my symptoms. These were lessons not easily learned and most of tools I gathered came from trial and error, fighting through my own stubbornness and pulling a rabbit out of a hat. Most of the time they work and sometimes they don't but if you’ve made it this far into this chances are you’re in a similar bought as me, looking for something, anything to help change the course.
First and foremost, the approach I’ve taken to treating and healing from POTS has been to treat my body like I’m taking care of a newborn baby and that means constantly regulating my nervous system. I conceptualize my POTS being triggered from the overstimulation of my nerves on all fronts. The reason I think about it this way is because for me, my triggers are bright lights, loud sounds, changes in movement and vibration which all point to a nervous system response as opposed to musculoskeletal or gastro. When I was in PT I learned about the importance of reconditioning our nerves especially after traumatic events. When we recondition nerves, it has to be done daily for short periods of time. Previously, I had taken the approach of giving it my all when I felt good. If I woke up feeling relatively okay I would do yoga and go for a long walk and then when I would get home I would feel all of my energy drain right out of me like sand in a hourglass.
I changed my approach by focusing on stimulating my nervous system for short bursts followed by moments of calming it down. This looks like going outside without headphones on for 10-15 minutes and then coming back indoors, sitting down and embracing peace and quiet. This also looks like going into a coffee shop where it is noisy and there is a lot of movement and challenging myself to sit there for up to twenty minutes. I focus on regulating my breathing using big deep inhales and exhales and I wait to feel my body acclimate to the environment. The first few moments I pretty much feel awful as though I need to run out of the coffee shop but after about five minutes or so I can feel the physical shift in my body as my muscles release their tension and my heightened sensitivity to everything around me lowers just slightly. Afterwards, I make sure to go back to a somewhat quiet environment and give myself a long period of time (a half hour or more) to recover.
Nervous system stimulation is not for the faint of heart. But doing it daily has led to an increase in endurance. I can now handle stimulation of my nerves multiple times a day for short periods as opposed to only once a day when I began this practice. I’m still working up to endurance in longer periods like sitting in a restaurant for a full meal but slowly we’re getting there.
The other approach I’ve taken to handling my symptoms is keeping track of which system sets off the others. I make it a point to notice all the systems of my body (neuro, gasto, endo etc.) and see how each part is impacted based on an initial trigger. If I have neurological symptoms like loss of feeling in my legs because I’m overstimulated by sound, what happens with my stomach? Do I get a stomachache or heartburn? What then happens with my heart? Does it beat stronger and more rapidly?
If I have cardiovascular symptoms like swelling of my feet or toes, what do my neurological symptoms feel like? The shower is a big trigger for me as something about the temperature and the sound of running water initiates a fear response where it used to be soothing. Part of it is attributed to the fact that my temperature regulation is off. I feel hot showers as cold but that doesn’t mean my cardiovascular system isn’t responding to the heat. So even though I feel hot water as cold, my toes and legs can begin to swell in the hot steam which after a few minutes can lead to me seeing spots, feeling off balanced and my heart rate going out of whack.
Learning how each system triggers the others has given me insight into how to stop a cascade of symptoms in their tracks. I never want to accumulate more than one trigger. Once I know which part is triggered, I can then see the pattern of what happens next and how to put out the theoretical fire where it starts as opposed to having all of my systems go into a full blown response. If and when that happens, we’re back to the near fainting/shaking episodes that leave me in bed for four days unable to do much except wait for my body to recover. So I do my best to avoid those situations as much as possible. Below I’ve listed the steps I take to mitigate my symptoms.
I’m not a doctor. This is not medical advice. This is simply what I’ve learned that works best for me:
1. I have a set sleep and wake time.
a. I don’t mess with them even on the weekends because if I change them, I change my eating times which causes significant physical responses. So I try to go to bed and wake up at the same time each day.
2. I eat every 2-3 hours.
a. This is a non-negotiable for me. I don’t have full meals but I do keep food on hand wherever I go because outside of a three hour window, I tend to have a high escalation of physical responses that jeopardize my well-being including feeling like I am going to pass out, feeling off balance, and sometimes going in and out of consciousness for brief moments.
3. I sit down after I shower
a. This one has been the most helpful. After a shower, I immediately sit down on the floor not on the toilet. What I’ve found is that being fully seated with my legs close to my body as opposed to a typical sitting position as if I’m in a chair allows me to recover from a shower much more quickly. Is it an ideal scenario? No of course not. It’s not my favorite thing to do my skin care regimen from the floor but those few moments of rest mean the difference between me fainting after showering or me being able to go about my day.
4. I don’t cross my legs
a. If there is one thing I learned about POTS it’s that while crossing my legs can be comfortable it can also be detrimental. Crossing my legs helps restore my blood pressure because I’m restricting the flow to one part of my body when I do so. However, the long term impact of cutting off that supply means that when I uncross my legs I’m more likely to feel lightheaded and dizzy. I’ve learned how to challenge myself to sit in chairs with both feet on the floor at all times. This has improved my back and core strength and also reduced the weakness I associate with my legs in general.
5. I stopped eating processed foods and try to limit restaurant foods
a. Part of this was for the migraines and part of it was based on my gastro’s recommendation. I notice a huge difference in how I feel if I eat something processed versus not because processed foods now make me feel sluggish and foggy. I also noticed a big difference in how I feel if I eat food I’ve made at home versus out at a restaurant. Some restaurants use msg, preservatives or salt in their foods which causes me to feel off kilter, lightheaded and dizzy the next day.
6. I went gluten free because I have a gluten sensitivity
a. I’m gluten free because I have a gluten sensitivity. The only difference I notice between going gluten free versus eating gluten is that my stomach is happier because doesn’t need to work so hard to break down food. If it doesn’t need to work that hard, my nervous system can do less which keeps me calmer over all. When I have had gluten, I get a stomachache and massive behind the eyeballs tension headache.
7. I do a POTS exercise protocol
a. Dr. Benjamin Levine’s protocol has been beneficial for me. I found him when I was doing a google search about POTS exercises. One of my problems since being diagnosed with POTS is that my physical body has become weaker due to lack of movement. This protocol has been incredibly helpful in me rebuilding both positive nerve responses and muscle regularly. The program includes “pre-month” workouts as well as the actual program. I originally thought I could jump right into the program and skip the preparation months. Boy was I wrong. When I went back and started with the pre-month protocol I was able to see how deconditioned my muscles actually were. Starting from the very beginning hurt my pride but overall allowed me to stimulate my nervous system for short periods of time in an effective manner that has helped rebuild my stamina.
8. I sing
a. One of the most mentally difficult things I’ve experienced with P.O.T.S. is the inability to sing because the stimulation of the Vagus nerve would cause me to have a fear response. I’ve been singing since I was a kid so the idea that actually singing would cause my entire body to go numb was both incredibly upsetting and wildly frustrating. I took an approach with singing like I did with working out. Short duration (30 min or less) with a focus on stimulating the Vagus nerve until it learns that I’m not in danger. The power of the Vagus nerve is truly under-appreciated and if you haven’t looked into its role in POTS, I encourage you to do so. The Vagus nerve does a whole bunch for our bodies and our emotional regulation and singing/humming stimulates the nerve. When I first took voice lessons again I would have anxiety attacks or become lightheaded due to difficulty breathing. After a few weeks those responses have changed in a positive way and I’m able t now sing with much less of a fear response.
9. I breathe
a. Along with singing, diaphragmatic breathing has become a necessity. One of the biggest things I noticed about the onset of POTS is how my diaphragm worked differently. When I would be at PT it would constantly feel like I couldn’t get enough air into my body no matter how hard I tried. I was lucky that one of the physical therapists was a dancer and she recognized that my diaphragm was getting stuck under my rib cage. She showed me how to release my diaphragm which then allowed me to begin practicing diaphragmatic breathing again. The first few times I practiced it, I felt lightheaded. Now, my muscles feel sore because they haven’t been used like this in a while but they’re getting back into a normal rhythm.
10. I carry salt
a. Now, I am not a daily salt or electrolyte person. I know salt is the number one recommendation for people with POTS but it can make me feel overly jittery depending on the day. Sometimes I feel like I need it, sometimes I feel like I don’t. I carry LMNT electrolyte packets with me wherever I go because dehydration is not my friend and I use them at my discretion. I’ve found that I use them more frequently when traveling but when I’m at home I focus on drinking regular water and bone broth throughout the day which seems to do the trick more effectively than adding salt to my drinks.
11. I use the Chill Pill from Amazon
a. Who knew a tiny gadget that helps anxiety attacks would be a game changer for when I feel faint. I use the chill pill for when I feel overstimulated to the point of fainting. I turn it on its highest setting and hold it in the palm of my hand allowing the pulsations to stimulate a different part of my body. I visualize the gadget helping draw the blood away from the heart (where it goes to when we’re in fear mode) and instead helping it return to other locations where it’s needed.
12. I lay on an Acupressure Mat
a. I started using an acupressure mat because I felt the need to start stimulating my nervous system more frequently and more deliberately. Each night I lay on the mat for about 10-20 minutes and it had done wonders for my endurance the next day. I’ve found that by deliberately stimulating my nervous system each night I’m able to handle changes to environment with much less of a fear response than I would previously have.
13. I meditate
a. Meditation has been the biggest helper when it comes to regulating my nervous system. I began meditating as a way to move my body out of fight or flight for even the briefest periods of time. What I noticed over long term practice is that meditation has given me new insight into being able to separate mental anxiety from a physical anxious response. I can now decipher if my mind is saying “I’m going to pass out” out of fear or if my body is sending me signals that mean I really am going to pass out.
Remember for me with POTS, I lost the interim period between the mind and the body that allows me to judge a situation accurately. Pre POTS I used to do the following:
1. Mind has an experience - mind takes time to identify if experience is a real or perceived threat – body is then notified if it should go into fight or flight or proceed as normal
2. Body feels a sensation – body and mind work together to identify where sensation is coming from and what caused it – Mind provides logical explanation which allows body to calm down
Post POTS my responses look like this:
1. Mind is hypervigilant and views everything as a threat – Mind does not take any time to assess if threat is real or perceived – body responds in fight or flight
2. Body feels every single sensation too stronger and thus feels like it is in fight or flight all the time – Body and mind agree that everything is a danger – body escalates response and mind focuses on getting body to safety
Meditation has helped me build myself back up to the pre-POTS scenario of responses. Yes it takes time and it doesn’t always work but I’ve noticed a remarkable change in how I handle situations outside of my control like needing to walk an extra block because I can’t find a cab to sit down in. Before meditation, my heart would start beating rapidly, my legs would go numb and my vision would black out. My mind would panic and say “we are going to pass out on the street immediately.” Now, I can notice my legs going numb and feel my heart beating but mentally I am able to say I still have time to get to safety.
I hope this list helps you if you’re struggling with POTS. The finally thing I will say about POTS is that getting a diagnosis can be incredibly challenging. If I had to do it all over again, I would start by monitoring my heart rate regularly and tracking it in an app. I would also keep track of the times I eat and what I’m doing when an episode occurs. I would bring that list to either the cardiologist or my primary care physician and request to get a tilt-table test. Doing this would have saved me a lot of time and energy running from doctor to doctor trying to get to the bottom of this. I've seen a neurologist, endocrinologist, ophthalmologist, audiologist, cardiologist, gastroenterologist, integrative health and primary care physician and I've had nearly every version of an MRI/CT there is. Having the quantitative and qualitative data would have prevented me from getting dismissed as being anxious nearly every time I tried to advocate for myself and would have saved me numerous scans/ trips to the doctor that left me feeling defeated and unheard.
I hope something in this story is helpful if you're struggling with POTS and navigating the emotional, mental and physical difficulties this type of syndrome brings on. It's not easy to navigate and it certainly challenges the soul. But remember, the soul is resilient. It's strong and it will keep fighting even when we want to give up.
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