It has been a long road to get here, but after eight months, seven syncopal episodes, a multitude of tests, dozens of hours of work missed, cancelled plans, and 1 major cardiac pause, I finally have come to terms with this new diagnosis of vasovagal syncope (also known as neurocardiogenic syncope). Many are more familiar with postural orthostatic tachycardia syndrome (POTS), but vasovagal syncope (VVS) is another form of autonomic dysfunction that leads to similar symptoms and life altering choices as those diagnosed with POTS. These include extreme dizziness, fatigue, light headedness, chest pains, shortness of breath, and in the worst case fainting, among other things. These are just a few things I wish people knew about life with an autonomic disorder.
1. I carry a blood pressure cuff with me all the time.
Everywhere I go, I bring it with me. It is in my purse, briefcase, backpack, and overnight bag. It accompanies me to work, out to dinner, traveling, running errands, and everywhere in between so that I can monitor my blood pressure if I become symptomatic or have an episode of syncope. Even when I am not symptomatic, I have to monitor it as I am on a medication that increases your blood pressure and if it gets too high, I could be in danger.
Related: Please Stop Telling Me How Sick I Look
2. I wear my Apple Watch or carry a pulse oximeter every day.
In addition to monitoring my blood pressure, I have to monitor my heart rate. Instead of pulling out my cuff every time, I can simply look at my wrist and put my finger in the pulse-ox that I can wear on a lanyard around my neck. With every dizzy spell or walk I take, I know what my heart is doing and can slow down if it begins to climb. If I am ever short of breath, overly tired, or having chest pains, I have to be able to know my pulse at that every moment.
3. I monitor my fluid intake daily.
I have to drink at least three liters of water a day. This can become problematic if it isn’t counter balanced with electrolytes, as you can actually drink too much water and dilute your electrolytes to the point that you become symptomatic. So, in addition to my three liters of water a day, I need a minimum of half a liter of PowerAde or Gatorade a day. Sometimes, I need a full liter depending on if I do any activities that make me sweat, but usually half a liter is my go to. If I drink too much powered, I can get stomach cramping, increased bloating, diarrhea etc… and just make myself miserable. Too little and I become symptomatic or worsen my symptoms which can lead to syncope. The balance of proper hydration and electrolytes has taken me months to figure out.
4. Medications and their side effects suck.
I have to take medications to keep my blood pressure up which involves a whole slew of side effects including weight gain, bloating, food cravings, acne, urinary frequency, increased headaches, and huge swings in my blood pressure. I must take my medication three times a day, but only during waking hours as it can raise your blood pressure too much if you lay down. If I miss a dose, am late taking it, or when my medication wears off, my blood pressure can drop from 110/70 to 80/40 within a matter of five minutes, causing me to completely crash. Currently, I am experiencing increased headaches, increased urinary frequency, and bloating. As a woman, I can tell you that bloating has to be one of the worst side effects as you not only feel crappy, but then your clothes don’t fit quite right which makes you even more miserable.
5. I don’t get a forewarning when my symptoms are about to flare up.
I have been sitting on my couch, cooking in the kitchen, on a walk at work, or even out training my dog and my blood pressure decides to plummet and bottom out for no particular reason. This requires me to lay down with my feet elevated over my heart and monitor my blood pressure until it is high enough for me to do things or until my symptoms subside, which sometimes isn’t for 12 hours or more.
6. I carry salty and sugary snacks everywhere.
Just in case my symptoms become worse, I always have bottled water and plenty of snacks in my purse, desk, car, etc… you never know when some chips or chocolate could help keep you from passing out, so always being stocked with both options and water is key.
7. I shouldn’t drive when my blood pressure is low.
This causes me to be late to work, request rides from others, or just cancel plans completely. I refuse to get behind the wheel until my blood pressure has consistently stayed at 90/60 or higher for an hour or more. 90/60 seems low to many, but that was my average blood pressure before this whole adventure started.
8. I meal plan and prep to accommodate for all nutrients.
I eat very little processed food and meal prep so I ensure I am getting enough protein, fruits, vegetables, and fiber in throughout the week. I strictly monitor what I eat and when I eat it so that my body has time to digest and get what it needs before becoming symptomatic from too little of anything. I also supplement with vitamins and minerals to try and keep my body as healthy and
functional as possible.
9. I eat pickles for breakfast.
Yeah, you read that right. I eat pickles for breakfast. Why? Because my blood pressure is typically very low in the morning, so I immediately drink half a liter of water and scarf down an entire pickle (not a spear) so I can get salt and water in my system quickly and without throwing off my meals.
10. I have to walk frequently during my workday.
Because of blood pooling, I have to frequently leave my desk to take walks and keep my blood moving. However, if I am symptomatic, these walks can be difficult. I don’t typically feel comfortable walking alone in case the worst happens and I pass out, so I have to recruit a coworker to go with me. This can sometimes hinder your productivity, but I usually will stay late or bring work home to make up for the time I am away from my desk. Thankfully, I have an amazing boss who is supportive of my walks and they haven’t hindered my productivity yet.
11. Compression garments are a must (and they are so uncomfortable).
In another effort to keep my blood pressure up, I wear compression stockings and garments, sometimes waist high ones, daily. They are so uncomfortable. They’re hot. They’re hard to put on and get off. They’re itchy. They’re constrictive. I feel self-conscious wearing my flats, dresses, cropped pants, and the like because then people see them and ask questions. Even the “nude” ones aren’t that invisible. But, they help. Tremendously.
12. I hate being alone.
What if my symptoms become worse? What if I actually pass out? Thankfully, I am more than six months out from my last full syncopal episode, but, I still experience pre-syncope type events and symptoms. I never feel like I can be alone because of these what ifs. I could pass out and hit my head, break a bone (already did that, so this fear is rational in my mind), fall down the stairs, injure my dog or others, and someone might not be there to help me. It gives me anxiety daily to think of what could happen if my blood pressure drops suddenly and I lose consciousness.
13. I hate seeing the worry in my loved ones’ faces.
I explain my symptoms to the ones I love and those who spend a lot of time with me and it is a lot to take in. They have to remember what to do if my blood pressure drops. Who to call. Where to take me if I pass out. What medications I take. And the list goes on and on. It is a lot to ask of someone. I know they do it for me because they love me, but, I see their worrisome glances when I tell them I am symptomatic today or that I just haven’t been feeling well. I wish you didn’t have to worry about me so much, I am already worried enough for all of us.
14. I feel like a burden.
Being unable to care for yourself is the worst feeling. When I cant or shouldn’t walk due to low blood pressure, I have to rely on people to bring me food, water, medications, and remind me to continue to take my blood pressure. I can’t drive for six months after each syncopal episode and I refuse to drive when my blood pressure is low, so I have to request rides or bail on people. I call on people to wait on me, serve me, chauffeur me, and it makes me feel guilty.
15. Even with this list of lifestyle changes, it isn’t enough.
I have adjusted just about everything in my life to accommodate for this new diagnosis. I sleep more. Take breaks more often. Focus on hydration and electrolytes. Try to stay moving. Always wear my garments and carry the multitudes of supplies that I could possibly need, but it isn’t enough. I am still symptomatic at least two days a week and this condition keeps me from doing a lot of things. I have yet to return to the gym due to fear of passing out if my heart rate goes up but my blood pressure doesn’t tag along.
This condition is frustrating. It is volatile and unstable. Unpredictable and completely life changing. I have rearranged my life to make it easier and yet, it still feels like nothing is actually working and there isn’t much improvement.