Everyday Life with HyperPOTS Finding Hope After a Life Changing Diagnosis

Five years ago, my life split into two parts: the person I used to be, and the person I am still learning how to become.

Before HyperPOTS, I was an Intensive Care, Trauma ICU, and Cardiovascular ICU registered nurse for about 15 years. Before that, I worked as an EMT for about 8 years in prehospital care and ski patrol. I was used to emergencies, monitors, medications, crashing patients, long shifts, and high pressure.

I was also used to movement.

I ran marathons. I trained for triathlons. I traveled the world. I grew up playing sports and kept playing, running, riding, hiking, and pushing my body until my body would not let me anymore.

I had no allergies. I did not take daily medications. If I took anything, it was usually an occasional Advil or Aleve after a hard workout or race.

Then everything changed after a COVID infection and later an MMR booster. My body began reacting to almost everything. Foods, smells, movement, products on my skin, and even simple daily tasks started to trigger symptoms that felt impossible to control.

This is the beginning of my story. It is also the reason I created this space.

This is the Everyday Life with HyperPOTS, and I hope it helps someone feel less alone.

Some days, a short walk is a major victory.

My life before symptoms took over

For most of my life, I trusted my body.

I could work long shifts in critical care, then still find energy to train. I could travel, eat freely, be around people, wear normal products, go into stores, smell food cooking, pump gas, and live without thinking about every exposure.

As a nurse and EMT, I understood illness from the medical side. I had taken care of people in their worst moments. I knew how serious illness could be. I knew what it looked like when the body was struggling.

But knowing illness and living inside it are two very different things.

When my symptoms began, I did what many patients do. I tried to explain them away. I thought maybe it was stress, post-viral fatigue, deconditioning, inflammation, allergies, or something temporary. I kept thinking I could push through.

That had always worked before.

This time, pushing only made me worse.

HyperPOTS changed me mentally, physically, and emotionally. It took the version of myself I knew and forced me into a life with new boundaries, new limits, and a new kind of grief.

I was no longer the person who could run through pain, work through exhaustion, or train my body into strength. My nervous system had become overactive and unpredictable. My body was sounding alarms all day long.

When the world became a trigger

The hardest part to explain is how small things became big things.

Perfume could set me off. Cologne could set me off. Gas fumes, dust, food cooking, shampoo, conditioner, lotion, makeup, deodorant, and even toothpaste became potential triggers.

Anything that touched my skin had to be questioned. Anything I breathed in had to be considered. Anything I ate could become a problem.

My life became smaller because my triggers were everywhere.

I could not simply “go run errands.” I had to think about smells in the store, how long I could stand, how far I had to walk, what products other people might be wearing, and whether the lighting, heat, noise, or movement would overwhelm my system.

Even simple activity could cause a crash.

At one point, if I tried to stretch or do 5 minutes of gentle floor yoga, my POTS symptoms could flare. Something that used to be part of healing became another thing my body could not tolerate.

Food became one of the biggest battles. I developed severe food sensitivities and spent a long year relying on tube feeding through a PEG tube for nutrition. I am now working on increasing my food intake again, one careful step at a time.

Right now, I am up to 6 foods I can safely tolerate.

For someone who once traveled, trained, worked in high-stress medical areas, and lived independently without fear of food or products, that number carries a lot of weight. Six foods may sound small to someone on the outside. To me, it is progress.

The isolation of living with severe HyperPOTS

Chronic illness can take away more than health. It can take away roles, routines, identity, friendships, confidence, and freedom.

I had to live a more isolated life. I could not participate in life the way I used to. Social plans became complicated. Going into public spaces became risky. Eating with others became nearly impossible. Exercise, the thing that once helped my mental health, became something I had to approach with caution.

That kind of loss affects every part of you.

There is the physical suffering, the racing heart, weakness, dizziness, adrenaline surges, shaking, nausea, blood pressure changes, and the feeling that your body is stuck in emergency mode.

There is also the mental and emotional suffering.

You grieve the body you had. You grieve the career you loved. You grieve the athlete you were. You grieve the ease of walking into a store, eating a meal, washing your hair, or making plans without calculating the cost.

For me, one of the hardest parts was knowing how much medical knowledge I had and still feeling lost. I had spent years caring for critically ill patients. I understood labs, monitors, protocols, and medications. Yet I still had to fight to understand what was happening inside my own body.

That experience changed how I see patients forever.

Recovery often starts with gentle, careful movement.

The diagnosis that finally made sense

I was first diagnosed with Mast Cell Activation Syndrome. At the time, that seemed to explain some of the reactions I was having. I reacted to foods, smells, skin products, and environmental triggers, so it made sense on the surface.

But treatment was not helping the way it should have.

My symptoms kept getting worse over time. My body felt more reactive, more unstable, and harder to calm. I reached a point where I felt like I was on my deathbed.

Then I saw an autonomic neurologist at Mayo Clinic.

That changed everything.

Getting the right diagnosis and the right treatment plan was key. For me, the missing piece was HyperPOTS, also called hyperadrenergic POTS. POTS stands for postural orthostatic tachycardia syndrome. In simple terms, it involves problems with the autonomic nervous system, the system that controls things like heart rate, blood pressure, digestion, sweating, temperature regulation, and the fight-or-flight response.

With HyperPOTS, the body can act like it is stuck in high alert. Standing, movement, stress, food, heat, smells, or other triggers may cause an exaggerated nervous system response.

That explanation finally matched what I was living.

Once I started medications aimed at calming my central nervous system, my life changed drastically. My body began responding in a way it had not before. I was not cured, but I finally felt like I was treating the right problem.

That difference matters.

For anyone reading this who is still searching, I cannot diagnose you, and this is not medical advice. This post is for information and personal experience only. But I can say this: the right specialist, the right diagnosis, and the right plan can change the direction of a life.

What progress looks like now

My life today does not look like my old life, but it is no longer only survival.

I can walk my dog short distances. I can ride a recumbent bike. I can do daily yoga within my limits. I can stand long enough to go to the grocery store.

These may sound like ordinary tasks. For me, they are milestones.

Progress with HyperPOTS is not always dramatic. Sometimes it looks like:

• Standing in line without needing to sit on the floor

• Tolerating one more food

• Taking a shower without crashing afterward

• Walking the dog a little farther than last week

• Riding the recumbent bike for a few more minutes

• Going into a store and making it back home safely

• Recovering faster after a flare

• Learning when to stop before symptoms spiral

  
  

I am learning my new boundaries every day. Some days, I accept them. Other days, I fight them emotionally. That is part of the process too.

Healing is not always a straight line. Managing HyperPOTS can feel like a constant negotiation with the body. There are better days, worse days, setbacks, and small wins that no one else sees.

But those small wins matter.

For a long time, my body felt like an enemy. Now I am trying to work with it, even when I do not understand it. I track patterns. I respect limits. I build slowly. I celebrate progress that my old self might have ignored.

Adding safe foods back can be slow, careful, and deeply personal.

Why I created this website

I created this website because I needed something like it when I was at my sickest.

I had very limited resources. I had to figure out much of this on my own by reading medical literature, articles, books, and listening to anything I could find about HyperPOTS. I searched for answers while living symptoms that made searching hard.

That should not be the only option.

There are many people struggling with HyperPOTS who do not know where to go, what to ask, what kind of specialist to look for, or how to make sense of symptoms that seem to affect every system in the body.

I want this space to be honest. I do not want to pretend this condition is easy. I do not want to make recovery sound simple or sell false hope.

But I also do not want people to believe that severe symptoms mean their story is over.

There is hope.

Sometimes hope looks like finding a physician who understands autonomic dysfunction. Sometimes it looks like getting a diagnosis that finally fits. Sometimes it looks like a medication that calms the nervous system enough to breathe easier. Sometimes it looks like tolerating a food, walking to the end of the block, or sitting outside in the sun for 10 minutes.

I also hope to learn from others. I know I do not have every answer. I have my experience, my medical background, my research, and my day-to-day life with this condition. Other people have different stories, different treatments, different specialists, and different lessons.

By sharing, we can build something useful.

What I wish more people understood

HyperPOTS can be invisible, but that does not make it mild.

A person may look fine while their heart rate is climbing, their body is surging with adrenaline, their blood pressure is unstable, and their nervous system is reacting to the environment like danger is everywhere.

Sensitivity is not weakness. Needing accommodations is not drama. Resting is not laziness. Avoiding triggers is not being difficult.

When someone reacts to perfumes, foods, heat, products, or movement, they are often trying to prevent a cascade of symptoms that can take hours or days to calm.

I also wish more people understood the identity loss that comes with chronic illness. When you go from critical care nurse, EMT, athlete, traveler, being a mother, and active person to someone measuring life in symptoms and safe foods, it changes how you see yourself.

But illness is not the whole story.

I am still a nurse at heart. I am still an athlete in spirit. I am still curious, determined, and stubborn in the best way. I still want to help people. I still want to learn. I still want to live.

HyperPOTS changed my life, but it did not erase my purpose.

A slower life can still hold hope, purpose, and forward motion.

Finding hope in a different kind of life

I believe I can beat this, or at least manage it well enough to have a somewhat normal life.

That belief did not come all at once. It came through tiny signs that my body could respond. It came through the right diagnosis. It came through medications that helped calm my central nervous system. It came through short walks, gentle movement, safe foods, and days when I could do a little more than before.

My life is not what I planned. It is more limited, more isolated, and more carefully managed than I ever imagined. But it is still my life, and I am still here.

If this story sounds familiar, please know this: you are not alone.

There are many of us living the everyday reality of HyperPOTS, quietly managing symptoms, searching for answers, learning our limits, and hoping for better days. My goal is to make this website a place where that reality is seen and where useful information can be shared.

I hope my story helps guide your day-to-day life as I continue to guide mine.

This is the Everyday Life of Hyper-POTS. And this is only the beginning.

My name is Sarena Humbert- Writer, blogger, and owner of Hyper-POTS Everyday Life, And this is my story.