Decades of unexplained blackouts and how TikTok helped me clear it all up

The Unknown Dysautonomia

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The Unknown Dysautonomia

I wanted to write this article because, like me several years ago, many people are unaware of this condition that could greatly limit their lives, and which is very difficult to diagnose. Perhaps you or someone you know has this condition and has no idea what is wrong with them.

Here is my story

30 years without an answer

I was born prematurely, asthmatic, and only 3.5 pounds. However, according to the doctors, this had nothing to do with the constant but seemingly harmless fainting spells that started before I took my first steps.

Since I was a baby I was taken to different specialists due to several fainting spells, which occurred for no apparent reason. Internal medicine doctors, cardiologists, neurologists, and endocrinologists are some of the specialists I have visited more than once in three decades.

It was common for me to have electrocardiograms, echocardiograms, encephalograms, and diabetes tests but the results were always the same: I was a child and then a seemingly healthy adult, so why did I keep passing out?

Having ruled out any physical health problems, I made it a habit to sit in a safe place when I felt like I was going to pass out and thus avoid hitting the ground or anything nearby, even though I didn’t always have time to protect myself.

The fainting spells were not that frequent. I could say that it happened to me an average of three times a year and, although it did continue to worry me a bit, I stopped going to the doctor. They even went so far as to insinuate that it could all be in my mind.

Things started to get worse

When I was beginning my 30s, things began to get complicated. I was no longer it two or three times a year; it was becoming much more frequent. In fact, I started to faint once a month to have the feeling of fainting every two weeks.

I was scared. I thought that whatever I had it was getting worse, and it wasn’t as harmless as I thought. But what put the cherry on the cake was that on an occasion I was watching a movie sitting at my desk with my laptop and I began to feel the sensation that I would pass out.

At that moment my mother entered my room, saw me in bad shape, totally pale, and grabbed my head. At that point, I passed out and convulsed a bit. Upon waking up, I started vomiting and then passed out again.

That scared me a lot since it was the first time it had happened to me at that level, so I decided to resume my visits to the doctor and discover, once and for all, what was happening to me.

I’ll explain later why I went from having one or two fainting spells to getting considerably worse.

First steps to the first diagnosis

I started looking for recommendations from the best doctors in my country and made an appointment with a renowned neurologist.

In the first consultation, he asked me dozens of questions, did reflex tests, and even made a call to my mother so that she could tell him what my lips and skin color were like when I lost consciousness. He also asked her if my recovery after fainting was late or not.

And finally, after that first visit, which took about two hours, I came away with an idea of what I might have: Vasovagal Syncope.

Vasovagal syncope occurs when you faint because your body overreacts to certain triggers, such as the sight of blood or extreme emotional distress. It may also be called neurocardiogenic syncope”. The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly. That leads to reduced blood flow to your brain, causing you to briefly lose consciousness.” — Mayo Clinic

Vasovagal syncope is caused by events as common as standing still for a long time, extreme heat, and everyday activities. To reconfirm that it was not another condition, I had to undergo all the tests I had done since I was a child to rule out any tumor, heart problem, etc., etc., etc. As expected, the results were the same: perfect health.

The tilt test or as I call it “the torture chamber

How is it performed? The patient lies on a stretcher, to which he remains attached. After a period of rest, it is raised to an angle of 70°, where it is maintained for a determined period (up to one hour). During the exam, the person is permanently monitored through an electrocardiogram and blood pressure measurements by a specialized nurse to analyze their variations.”- Clinica Alemana

The medical study basically replicates all the conditions under which the patient could pass out.

The test confirmed that my blackouts were known as vasovagal syncope. The doctor did not prescribe any medication, rather he informed me that it was a chronic condition for which there is no cure so far and that the treatment consisted of avoiding, as much as possible, what triggered the fainting spells.

What should be avoided to reduce syncope?

• Wear compression stockings up to the waist (always).
• Do not eat low in salt.
• Avoid standing or sitting for long periods of time.
• Avoid very closed places, due to high heat.
• Avoid weight gain.
• Avoid stress.
• And above all, if I feel that presyncope (the feeling that I was going to faint, also known as aura) I had to quickly lie down and try to place my legs about 30 degrees on some object so that the blood begins to circulate at the same time to the brain.

Do you remember that I told you that when I was 30 years old, fainting increased significantly? Well, this happened due to two triggers: I was going through a period of excessive stress at work, and at the same time I had gained a lot of weight.

I was happy with the diagnosis; after three decades I had a response and, although it was something without a cure, it could be prevented.

So, What does TikTok have to do with all this?

Well, until now I only knew half of my situation.

5 years after my diagnosis, thanks to the famous social network TikTok, I found a video of a Tiktoker who talked about various symptoms with which I identified, but the magic word that kept me watching his videos was “syncope.”

In the video, the young man explained that the fainting spells were only one of the reactions of a more complex condition: Dysautonomia.

Now finally, after 35 years, everything in my life made sense."

Since I was a child I always felt that I did not I wasn't as physically resistant as other people: I got tired quickly, and it took much longer to adapt to exercise routines and sports compared with other people. routines, and sports. I also used to have anxiety attacks that were reflected in tachycardia. But…

What is Dysautonomia?

Let’s simplify it.

According to The Website of Dr. Ponce, Dysautonomia is an alteration of the Autonomous Nervous System (ANS), which controls the involuntary functions of the internal organs. Regulates temperature, heart rate, sweating, blood pressure, or breathing."

Of these, the most obvious and symptomatic is blood pressure, which in cases of low blood pressure manifests as tiredness, fatigue, exhaustion, dizziness, instability, loss of consciousness, sweating, headaches, low heart rate (bradycardia), etc.

Important note. It is still not really known why some people have this alteration of the Autonomic Nervous System.

Aurora Health Care details some of the symptoms that dysautonomia can cause and that, for this reason, can be confused with much more well-known diseases such as epilepsy or thyroid problems. These symptoms are:

• Fainting.
• Abnormally fast or slow heart rate.
• Anxiety.
• Excessive sweating or not being able to sweat.
• Fatigue.
• Feeling short of breath (especially when you exercise).
• Being thirsty all the time.
• Have difficulty swallowing.
• Headache.
• Insomnia.
• Nausea and diarrhea.
• Vision problems.

Not everyone who suffers from dysautonomia presents all these symptoms and dysautonomia can also arise due to a previous disease, such as cancer. Some people even presented symptoms of dysautonomia after having suffered from Covid-19.

My experience of all this

• It took 30 years for a diagnosis that would help me understand fainting.
• 35 years to understand that they were not just simple fainting spells but a set of symptoms that can limit a person’s life to different degrees.
• It is a very difficult condition to diagnose since it shares many symptoms with other very common diseases.
• Although very few people know about this condition it is estimated that there are more than 70 million people in the world who suffer from it.

And finally, we need to spread the word so that more people know about this condition and know that they are not alone.