My Life Living With POTS or Postural Orthostatic Tachycardia Syndrome

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I have been going back and forth on how to talk about this. Pondering whether I should or shouldn’t say anything. To be honest, I’m a little scared as to how you may react. Oh well, screw it here goes to me being honest and vulnerable.

Before I begin to share my experiences, let me clearly state that I was NEVER officially diagnosed with POTS. Honestly, I just didn’t want to go to the doctor. I was so tired of being poked with needles and treated like some test rat. Please understand that this wasn’t one of those illnesses where you just take a blood test and get the results. At that time, there was only one method to diagnose it. That method was to take a ton of tests to eliminate possible factors that could cause me to feel lightheaded. The role of the tests were mainly to rule out all other possible illnesses or reasons for my symptoms.

Another reason why I feared going to the doctor was because I was deathly afraid of actually being diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS for short. So let me share the terrifying experiences of how this all started.

How it all Started

Back in August 2015 I was walking to work and suddenly out of no where I began to see stars. Then I got tunnel vision, followed by rapid heart rate, and tightness in the chest. I fought so hard to remain conscious. Doing everything I could to prevent myself from fainting in the crowd of people. I made it to work but the tightness in my chest and feeling faint just would not go away. Thinking I just needed to sit and drink some water I went to the employee lounge. As I sat there I experienced my first anxiety attack, along with shortness of breath. Guess what the first thing I thought I was experiencing…. a HEART ATTACK!

I raced home to determine if I really needed to call the ambulance or not. I know what you are thinking…why would I even think twice if I thought I was having a heart attack. Oddly enough, I wasn’t experiencing any of the main symptoms associated with a heart attack. Which was the reason I chose to just stay home and rest. Within an hour I was completely fine. So I took the next day off of work to rest. I honestly assumed that all of my symptoms were either from me being exhausted or from my poor diet.

Things Turned for the Worse

Life went on as usual until I had another episode 2 months later. The same thing happened but this time it was much more intense. One night I had tightness in the chest while taking a hot shower. Another time I woke up in the middle of the night with my chest feeling tight and I had a full anxiety attack.

That next weekend I had one of the most scariest episodes. I was at the gym, on a seated stationary bike and I almost fainted. Now this all happened while I was seated…isn’t that crazy? I literally had to stop all physical activities because any exertion caused me to feel faint. More and more things began to trigger the symptoms of feeling lightheaded and faint. Things like being in crowds, standing in lines at the grocery store, looking at soup cans, being in the sun, walking, or even talking to people.

It was safe to say I was extremely terrified and completely lost. So I did what every person does when they want answers….I GOOGLED my symptoms. That’s when I learned about POTS.

Symptoms of POTS

Sadly, I had almost every symptom they listed….

• blurred vision
• lightheadedness from prolonged standing in one position as well as long walks
• near fainting
• headaches
• chest pain
• shortness of breath
• exercise intolerance
• anxiety
• coldness in the extremities
• nervous/jittery feeling
• temperature deregulation
• brain fog
• lack of sweating
• racing heart rate during sleep
• and shaking/tremors especially with adrenaline surges.

There’s Hope

I read that these symptoms can come and go over spans of years (which held true with my symptoms) and that the root cause was unknown at this time. The most heartbreaking thing was that there was no cure or remedy. You just had to do your best by eating a balanced diet, eat foods to prevent sugar spikes, and consume enough salt to keep pressure up. Basically you just have to live with it. What was so scary to read was in some cases symptoms got worse over time. Some people lost the ability to do daily tasks by themselves and eventually needed assistance. The one that totally devastated me were the stories of people not being able to stand for long without fainting so they needed to be in a wheelchair to get around.

Learning that there was a possibility my future could look like this, broke me into a million pieces. A plethora of questions flooded my head: How am I going to handle this? How can I prepare myself to live life with this mysterious syndrome? What if I can’t work? How will I share the news with my husband? And then sadness came over me because I didn’t want to be a burden to anyone.

The Moment Things Changed

Luckily, I came across Anthony William (you can read about how I discovered him here). Through his books, blog posts, and radio shows I learned about the root cause of POTS as well as many other symptoms I was experiencing. When I read this I saw that the root cause to my symptoms were the same as the one that causes POTS. This lead me to believe that I too could have been suffering with POTS. Now I’m not stating that I had it nor do I recommend self diagnosing yourself by just reading symptoms off the internet. More than likely it will be incorrect AND you probably will diagnose yourself with something worse. Just wanted to make that clear before we move on.

The Root Cause of Pots

So what is the root cause of POTS? I have learned it is NOT an autoimmune disease. Our bodies are constantly working to keep us healthy and is definitely not attacking itself. POTS is caused by neurotoxins swelling the nerves and floating around making it difficult for the liver to pump blood to the heart. This is what causes the lightheaded feeling and all the other “nerve” related symptoms I listed above. These specific neurotoxins are created by a particular variety of Epstein Barr Virus.

Reading this information brought me to tears as it opened the door to the idea that I could actually heal from this. It felt like this ray of hope shined a bright light over my entire body. To read that there was a real reason for all the symptoms I was experiencing felt like someone finally understood me. For the first time, in my 4 year search for natural ways to heal, did I read words that EXPLAINED what was happening to my body. The beautiful thing….was that it wasn’t attached to a program or a product you needed to purchase in order to heal. Helpful tips on what to eat and suggestions on supplements were discussed in his books (which are available at most public libraries), his website, or his radio shows.

Steps I Took to Recover

Right away I jumped into applying the recommendations. I began with drinking 16 ounces of plain celery juice first thing in the morning on an empty stomach. I then slowly changed my diet over a span of 3 months, each time adding more and more recommendations (you can read about my beginning experiences here). The last and most important one I feel for someone dealing with POTS is to eat every 45 minutes to an hour. I know this sounds crazy but hands down this prevented me from feeling lightheaded or faint.

Grazing or eating every 2-3 hours is a healthy habit I have learned to do. It is a way to sufficiently supply the body with energy. So every 2-3 hours (45 mins-1 hour for someone with POTS) you eat a meal or snack that contains glucose, potassium, and mineral salts (for more details on grazing click here).

How Long Did I Take to Heal

I’m going to be completely honest with you, the combinations of inflamed nerves, along with weak adrenal glands, and an overburdened liver created a pretty bad environment. It took about a year before I saw even a glimpse of progress. I went from being able to walk for only 10 minutes at 1 mph to walking about 20-30 mins at a normal pace on good days. Fatigue did follow for the next 3-4 days but that didn’t bother me as I was celebrating the fact that I could actually walk for a longer period of time.

I am not completely healed quite yet, but my symptoms have definitely improved since 2015. The nerves have calmed down and I believe the neurotoxin load decreased as I am now able walk at a fast pace without feeling faint. I even am starting to exercise once again and break a little sweat which are something that are a fairly new improvements.

Does This Method of HealingReally Work

I have tried so many different diets from being vegan, to gluten free, to even paleo and none of them have been able to help me heal. You see it’s not just the diet that saved my life. It’s the information and knowledge I learned about the root cause of my symptoms that strategically placed me on a successful path to heal. So if you are looking to heal I highly recommend taking the time to fully understand the root cause of your symptoms because it will be able to literally save your life.

To the beautiful soul reading this… know that even if you are diagnosed with POTS there is still hope that YOU too can experience healing. I know it may feel impossible to heal but don’t lose hope. I didn’t and look how far I have progressed! This is not a paid promotion nor do I get any form of monetary gift for sharing my story. I share this with one intention and that is to give hope to those who may have lost it.

Sending tons of healing love and light to you ALWAYS,