POTS Stole My Energy and Everything That Made Me, Me” takes you on a heartfelt journey through Alyson McNutt English's 15-year struggle with Postural Orthostatic Tachycardia Syndrome (POTS). From the crushing fatigue and misdiagnoses to the emotional highs and lows of finally finding a name for her condition, Alyson's story is one of resilience, adaption, and the unwavering support of family. Moving from Alabama to Michigan brought her a new lease on life, despite the ongoing battle with chronic symptoms. This inspiring narrative reminds you to trust your instincts, seek the right tests, and make the changes necessary to live your best life, no matter the curveballs thrown your way. Have you ever felt like your energy just evaporated overnight, leaving you plagued with exhaustion?
POTS Stole My Energy and Everything That Made Me, Me
About 15 years ago, I got really sick. It started innocuously enough with strep throat, followed by a bout of mono. As a busy mom with two young kids, I tried my best to power through. However, everything changed when a relentless fever struck, lingering for days while I lay in sweat, unable to cool down. Once the fever eventually broke, I thought the worst was over. Little did I know, my struggles had only just begun.
The Beginning of the Mystery
After the fever broke, a sudden heaviness seeped into my limbs. It felt as though gravity had a grip on my muscles, making every movement laborious. An attempt to wash my kids' clothes became an insurmountable task. When my husband saw my condition, he took me back to the healthcare provider's office. Between bouts of tears and frustration, I expressed, “I'm not getting better.” I was only 31. Something was definitely wrong.
Misdiagnosis and Escalating Symptoms
The initial diagnosis was the Epstein-Barr virus. The provider told me that all I could do was wait and hope to get better within a few weeks. But that wasn't the case for me. Weeks turned into months, and I remained bedridden, plagued by relentless fatigue and weakness. It was as though someone had stolen my very essence.
Emotional and Physical Turmoil
I've always been a “go, go, go” type of person. Then, suddenly, I found myself confined to bed, listening to the noises of the life going on around me. The clatter of dishes, my children's laughter — every sound was a reminder of the life I was missing out on. I doubted myself continuously, questioning if I could push through this state by sheer willpower.
The Overlooked and Misunderstood Condition
Years passed, and my health didn't improve. My muscles were so weak some days that even breathing felt like an ordeal. Desperation led me to numerous provider appointments. Everyone told me the same thing: “You're anxious, you're depressed, you need to lose weight.” The cycle of misdiagnosis and misunderstanding continued, leading me deeper into depression.
Heat Intolerance in Alabama
Living in Alabama, with its sweltering heat, posed another challenge. My body could no longer regulate its temperature properly, leading to severe heat intolerance. Just a few minutes outdoors would leave me dizzy, short of breath, confused, and covered in a purple hue. This added another layer of torture and trapped me even more indoors.
Impact on Family Life
The hardest part? Missing out on being there for my kids. They were just toddlers when I first got sick. One day, my young daughter attended a psychiatrist appointment with me and pleaded, “Please help my mom not be so tired.” The helplessness in her voice was heart-wrenching. It wasn't just me feeling the pain; my entire family bore the brunt of my illness.
A Possible Answer
Amid this turmoil, hope came in the form of a phone call from my dad. He suggested I might have lupus given some shared symptoms in our family. I hurried to see a rheumatologist who, while dismissing lupus, flagged my inflammatory markers as severely abnormal. This opened a new avenue for diagnosis.
The Tilt Table Test
I was referred to another specialist who suggested post-viral postural orthostatic tachycardia syndrome (POTS). The diagnostic test was a tilt table test. Strapped to a table and tilted upward, I quickly blacked out as my blood pressure plummeted — the classic sign of POTS.
Mixed Feelings About Diagnosis
Waking up, I felt elated. After years of no answers, there was finally a name for my suffering. My nervous system had been damaged, likely due to the viral infection that caused mono. However, not all news was good. Treatment options for POTS vary widely, and there's no definitive cure.
Adjusting to a New Reality
Learning that my pre-illness life wasn't coming back was tough. Yet, knowing what was wrong allowed me to shift my focus onto living my best life with POTS. A massive change was needed, starting with relocation.
Moving to a Cooler Climate
To combat my heat intolerance, we moved from Alabama to Michigan. The cooler weather was life-changing. For the first time in ages, I could enjoy simple activities like walking my dog or shopping without being bedridden afterward.
Coping Strategies and Treatments
In Michigan, my lifestyle improved. Daily walks, children's outdoor sports, and errands like grocery shopping became feasible. I started taking a low-dose beta blocker and medication for type 2 diabetes, both of which helped alleviate some POTS symptoms. Yet, I must remember my limits and avoid pushing myself too far.
Support Systems
Throughout this journey, my husband has been my rock. His belief in my condition and his support during the quest for a diagnosis kept my spirits from bottoming out. Understanding that many women struggle for years before receiving a POTS diagnosis has made me more thankful for his unrelenting support.
Lessons Learned and Moving Forward
Living with POTS has taught me the value of self-belief and persistence. If you're struggling with unexplained symptoms, don't accept the first answer given, and always trust your instincts. Sometimes it takes turning your world upside down, quite literally, to find the answers.
Advice for Others
- Believe in Yourself: Trust your body and your instincts.
- Persistence is Key: Keep seeking answers even if it takes longer than expected.
- Seek Appropriate Tests: Ask for tests like the tilt table test.
- Make Necessary Changes: Whether it's moving to a different climate or adjusting your lifestyle, find what works best for you.
Summary of POTS
| Aspect | Details |
|---|---|
| Symptoms | Fatigue, dizziness, heat intolerance, weakness, breathlessness |
| Potential Causes | Often follows viral infections such as mono |
| Diagnosis | Tilt table test |
| Treatment | Varies by individual — often involves lifestyle changes, medication, and specialists' input |
| Prognosis | No cure, but management is possible with appropriate strategies |
Reflection and Hope
Every day is a learning experience, and while POTS has changed the person I used to be, it hasn't stolen my determination to live a fulfilling life. My journey has been challenging, but also an eye-opener. It made me grateful for the small victories and the support from my loved ones.
By sharing my story, I hope others can recognize the symptoms sooner, push for the necessary tests, and find a path toward improving their quality of life. Remember, you're not alone, and there is power in persistence.
Conclusion
Living with POTS might mean a drastic lifestyle change, but it doesn't signify the end. With the right diagnosis, support, and adjustments, you can find a way to navigate through it. Keep asking questions, seek the right medical help, and most importantly, trust yourself.
If you have a story of your own you want to share, let us know. Our Real Women, Real Stories are the authentic experiences of real-life women. These stories provide a platform to share, connect, and inspire each other.
Source: https://www.healthywomen.org/real-women-real-stories/postural-orthostatic-tachycardia-syndrome-pots
