Seven Years of Searching.
My Story
By, Olga
I get asked all the time, “How did this suddenly happen to you?” No it didn’t just happen, I was just good at hiding it.
My symptoms have slowly progressed and got worse over the course of many years. If I look back hard enough, I can take it back all the way to my teen years. I was actively trying to find answers for 7 years.
I’m a mom of two, and wife to the most amazing, supportive husband. I’m a wellness coach and work from home mama. I’ve always enjoyed being active, working out and doing yoga. I love traveling and trying new foods. I enjoy drawing, baking and I couldn’t wait for my kids to be old enough to take them on outdoor activities. I have always had health struggles and symptoms, but they were always short lived and far between.
But after I had my daughter 8 years ago, I had sepsis post delivery. When I came home was when I knew I was no longer the same. For years I experienced uncontrollable fatigue, pins and needles, sharp pain and numbness. I always attributed these symptoms to being a mom of two and working late nights for more than 50 hours a week.
The time that stands out to me most is the holiday season of 2019. I recall going up our stairs and feeling dizzy and winded. I thought maybe I was doing too much yoga and should probably increase my cardio. I love doing Christmas activities for my kids, but I struggled and felt more fatigued when I did. In January of 2020, I was having constant nausea, vomiting and a sudden onset of migraines - which was weird because I could usually feel a migraine coming on. On MLK day, I remember telling my husband I didn’t feel well so I decided to go to urgent care. The doctor said I looked fine and suggested I take magnesium and sent me back home.
Later that night, as I was coming out of the restroom all I could think of was, “I’m about to pass out,” and I unlocked the door and screamed for my husband. Next thing I know, I’m on the floor. I felt weak and everything felt blurry and slow. I saw my husband freaking out, calling 911 and my kids watching from the doorway. By the time the paramedics arrived I was coming to and my vitals were all normal. I remember one of the paramedics saying, “you may have endometriosis, so make sure you go to the doctor.” I wanted to stay home but my husband wasn’t having it, so he took me to the emergency room only to have the doctor brush me off once again.
Two weeks later, I had another sudden migraine,I felt out of my body , was vomiting, and blacking out. By morning, I looked in the mirror and saw half of my face drooping. My husband saw me and said, “we have to go to the ER!” but by the time we arrived I looked fine again. The doctor did say “you have tachycardia, but it looks like white coat syndrome, so it’s probably just anxiety.” She even suggested my husband was abusing me.
After getting all the tests back, she finally said, “you are not crazy. Your potassium levels dropped very low, likely causing a mini stroke.”
After that last visit, I felt like I was done with doctors. I didn’t want to go back. But in March of 2020 I caught the flu-initially thought to be Covid, but after getting tested, nope it was the flu. I was beyond sick. Everything I felt previously just seemed worse. I couldn’t go up the stairs and I felt like I couldn't breathe. Two months later I was still struggling. So I went back to my doctor and she said the dizzy spells were vertigo and the shortness of breath was walking pneumonia. I thought, ok we can fix this. But by September I didn’t feel much better and I was still struggling to even walk my dog. Everytime I stood up I felt faint, I was constantly grabbing walls or chairs just to get through the house.
I had a follow up phone appointment, when I explained I didn’t feel much better, just to have the doctor say, “there isn’t much more I can do for you.” I broke down crying and just couldn’t believe that there wasn’t a doctor willing to help me.
I struggled for seven more months. I was managing the best I could, and fortunately my husband was still working from home so he was doing the heavy lifting. I thought, I can figure this out, I’m a healthy person. But I kept getting worse, so I went back to my neurologist in April of 2021. She had MRIs done and suggested I go back on gabapentin for pain and lack of sleep. I learned I had cervical stenosis and arthritis on my spine so that explained my pain, numbness and migraines which might explain everything else I was feeling. But for some reason that didn’t feel right.
That summer, I kept getting worse. I couldn’t be out at the pool for more than 30 minutes before I started to feel faint. Then I started having vision problems- black tunnel vision, black spots, blurry and trembly vision- but the optometrist said my eyes looked fine. I was also having chest pain and pressure, a hard time breathing, struggling to workout, I felt weak and was constantly trembling.
Here I am, hunched over, taking a needed rest at Disneyland, only shortly before I was laid out on a bridge in the park.
By September of 2021, I was deteriorating. I could hardly walk to the restroom, I was crawling up the stairs, I constantly felt I was going to pass out and was always falling over. My husband was pushing me to go back to see a new doctor. Finally I went back, but with my husband doing most of the talking. I saw a new doctor and she seemed to listen. She didn’t say much, but took me seriously. She sent me to get more labs and this time I was referred to a cardiologist. He said she would call me in a few days to see how I was doing. By then I had dove into research. I came across a girl sharing about POTS on social media. I thought “this is it” and showed it to my husband immediately, and he agreed. I started checking my heart rate and saw how abnormally high it was. At that point I knew.
So on that phone appointment, I told her I was still feeling terrible and she said to go into urgent care. There I was better able to explain my symptoms. They checked my orthostatic vitals and told me my heart rate was too high, so they sent me to the emergency room. It was there where the doctor told me he didn’t know what was wrong with me, but he would continue to search for answers. I only explained my symptoms but never brought up POTS of fear of getting shot down. Hours later he came back, he said he explained my symptoms to a cardiologist and said “we think you have Postural Orthostatic Tachycardia Syndrome.” I felt a huge sense of relief because only days before I had come to the same conclusion. Unfortunately, I had to get very sick for doctors to finally listen to me.
I finally met with my now cardiologist. He sent me out for multiple tests including a tilt table test and a heart rate holter monitor. I was diagnosed with Supraventricular Tachycardia(SVT), Orthostatic Hypotension (OH) and Postural Orthostatic Tachycardia Syndrome (POTS) in February of 2022. I felt relieved, but at the same time devastated, because I knew there was no cure. I knew I most likely had to live with this for the rest of my life.
It’s been a year since I’ve been at my worst. I’ve improved very little, and it has been a struggle and a fight. I feel like I take one step forward and three steps back. I’m a mom and a wife, and it’s hard not being able to be the mom and wife I want to be. Before getting a diagnosis, I always thought whatever this was it would go away. I went from being a planner, fast paced, hard worker, control freak with a great memory, able to do it all, to now saving every ounce of my energy just to wash dishes or put a load of laundry in the washer. But, I’m adjusting and learning to manage. I’ve accepted I’m disabled and I have to do things differently.
The hardest part is not knowing how I am going to feel day to day. Every day, every moment is different. I’m back to working out consistently every other day, grateful I can work from home. I use disability aids to help me through the day. I now have a team of doctors working with me to find the right treatment for my body. I hang onto hope that I will go back to where I can manage this more easily, and still be able to do the things I used to do. But for now, I take it slow, I give myself grace and find gratitude in all that I do have. I continue to educate myself, work on my mindset and find new ways to cope. This experience has given me a new outlook on life, I see the world differently and I don’t take the ability to move and stand up for granted.
Thank you to our primary sponsor, Vitassium® by Salt Stick.
Audio Accessibility Feature brought to you by Nurse Mates®.