Home Lifestyle POTS: My Invisible Illness

POTS: My Invisible Illness

by wildnorthernbeauty

What was your victory today? Or yesterday? Or this week? Mine was tying a scarf around my ponytail, a gesture that seems miniscule in the grand scheme of things. It was a multi-step process to reach that point. I had to stop snoozing my alarm. Pull the covers down. Drag my feet to the floor. Search for my slippers and robe. And move each foot – one at a time – to reach the bathroom. Then grab the dry shampoo, comb, hairspray, and elastic. Assemble. Finish with a scarf for good measure. Boom.

I have had a few setbacks this week. For one, my TMJ has been acting up and my jaw has been stuck for three days. My bite doesn’t feel aligned, chewing feels weird, and hydrating is a miserable challenge. Second, I shared something personal with the young ladies that I work with on Wednesday night (I’m a small group leader) to show them that I can relate to things they are going through. I’m feeling self-conscious for sharing my life slash awkward for being myself. 

The challenge this week was staying hydrated. As I mentioned above, TMJ has made it nearly impossible to open wide and chug. Dehydration has triggered ‘the crappy feelings’ related to POTS, my February diagnosis that I mentioned in last week’s post. Postural Orthostatic Tachycardia Syndrome (POTS) affects between 1-3 million Americans.  I just so happen to be one of them.

This post touches upon my POTS story. 

The Body's Physical Response.

Postural Orthostatic Tachycardia Syndrome (POTS) is an orthostatic intolerance condition where the body’s circulatory response (blood flow) changes with the body’s positioning. For example, moving from the sitting to standing position can cause the individual to feel dizzy, lightheaded, or can induce fainting. In my case, from sitting to standing or standing for periods of time causes my heart rate to become elevated and my blood pressure to drop. The end result: passing out. 

Confirmation Test.

My POTS diagnosis was confirmed this past February. I was very fortunate to have a well-informed primary care physician who suspected POTS when my symptoms commenced in January. This diagnosis was confirmed via a Tilt Table Test (TTT) at my local hospital. The test was under the administration of my cardiologist.

The test was simple: I was strapped to a table (with Velcro straps), my blood pressure and heart rate were monitored, and the table was tilted from the horizontal to vertical position. It was strange! Thankfully the nurse thoroughly described the test before we began. Strapped down, the table was positioned at sixty degrees for 45 minutes, in a dark room, whilst a team observed me from behind a glass wall. All I had to do was lay there. They closely monitored my heart rate (with a continuous EKG) and the blood pressure cuff went off every five minutes. I floated in and out of consciousness three times but didn’t fully pass out. I made it through the first portion of the test. Next, they administered a drug through my IV that simulated an adrenaline rush. A few drips of the medication passed through the IV every five minutes. After the first dose, I felt my heart rate rapidly increase. I called over to the nurse to take off the blankets that were under my straps because my skin was boiling hot. My heart started thumping harder and I thought my chest was exploding. As the nurse took off the blankets, I blacked out.

Positive test.

Instructions for Further Care.

My cardiologist came in and explained my test results. In the three instances where I came close to passing out, my heart rate had shot up over thirty beats per minute and my blood pressure dropped. When the drug was administered, my heart rate was around 70bpm and jumped up to 139bpm. This 30+ beat change in combination with passing out was a positive test for POTS. Unfortunately the blood pressure cuff had gone off one to two minutes before I passed out and they couldn’t get a reading. His theory is that my foot injury (a high ankle sprain) and 8-10 weeks of recovery messed up my circulation. I’ve likely always had POTS, but I was able to manage it with distance running, mountain biking, and staying very active. Here were his thoughts in regards to my personal treatment.

INCREASE FLUID INTAKE

When my cardiologist suggested upping my fluid intake to 1-2 liters of water per day, my jaw dropped. I have liter-sized water bottles at home… and they look enormous. My eyes nearly fell out of my head when I filled two one-liter water bottles and placed them side-by-side. That is SO MUCH FLUID. 

EXERCISE

Alright, something I know how to do. I began physical therapy four weeks ago and my ankle feels much stronger. I’ve been averaging 3-5 walks and/or runs per week. Plus three strength workouts a week, focusing on: full body, upper body, abs, and lower body. Slow and steady. 

MEDICATION

The medication is designed to decrease the loss of sodium (in urine) and increase blood pressure. I haven’t had any noticeable side effects (yet). One of my doctor’s goals is to ween me off of the medication within five months if I’m able to get back into distance running.  

INCREASE SODIUM INTAKE

I didn’t grow up with salt. My mother had a heart condition and had to be cautious of her sodium intake. We kept very little salt in the house. I didn’t know how to add sodium to my meals! My dietician has been amazing at providing me options and helping me piece together meal ideas.

THE DESK JOB LIFE

Yes, I was shocked. With POTS, standing for extended periods will make the symptoms worse. Any activity that causes blood to pool in the legs and blood pressure to drop was instantly out. I knew that for my health and recovery, change would be crucial. And yes, I was mad about it for a few weeks.

 

Sweet Relief.

The medication, diet, fluid, and lifestyle changes have relieved some of my symptoms. It is getting easier to move from sitting to standing without feeling dizzy, little by little and day by day. My concentration has improved significantly. When I talked to my grandmother last week, I told her, “My brain works! My body just doesn’t!” 

One of my friends had a lead for a desk job. It would be Monday-Friday from 8am-4:30pm with consistent work and within fifteen minutes from my house. It would be accommodating for my health needs. I could have a dependable schedule and time to focus on my recovery. I wouldn’t be on my feet, trying to make people feel beautiful. Instead I would be responsible for taking care of myself. 

I was overwhelmed about talking to my bosses about leaving… in my heart I knew that they would be supportive. They have been beyond incredible and considerate for my needs. In our meeting, we talked about burying the things of the past and staring out into the horizon at new opportunities. To look up from the floor of the valley and see the light ahead. Valleys have a beginning and an end; we aren’t stuck in these rough spots forever. We might not know why things happen, so it could mean that there are better things waiting for us. Thank you Hilary and Veronica. Your shared knowledge has been precious in my personal growth and my heart is filled with much love for you both.

Life happens. You never know what God’s plan is for you or the path life will take you down. And it will all be okay. 

Because we are given grace.

All the best,

Alexi

You may also like