Symptoms and Triggers #Meg'sLongQTJourney

This is the next installment of my Meg's Long QT Journey Series. To follow will be the symptoms and symptoms associated with Long QT Syndrome. To read from the beginning, click the links below:

1. The First Seizure
2. The Second Seizure
3. The Third Seizure
4. Getting the Diagnosis
5. What is Long QT?
6. Types and Genetics

Symptoms:

• Fainting
• Seizures
• Sudden Cardiac Arrest

These are the only and main symptoms of long qt syndrome. They can occur with very little to no warning; they can be brought on suddenly.

Long QT Faint vs Vanilla or Common Faint vs Other Faints

Long QT Faint:

• a sudden drop or loss of consciousness 
• the actual faint occurs in mere seconds
• little to no warning that a faint will happen - won't last more than a second or two

Vanilla (or Common) Faint:

• presents with warning signs
• takes longer to actually lose consciousness

Vasovagal syncope is the most common cause of fainting. It occurs when there's a sudden drop in heart rate or blood pressure. It can be caused from: standing too long, being in an overcrowded environment, being overheated, dehydration, fatigue, stress, the sight of blood, etc. Symptoms usually involve dizziness, lightheadedness, feeling nauseous, blurry vision, paleness, and sweating.

And then there's POTS, which is also known as postural orthostatic tachycardia syndrome. A faint from this occurs from a lack of blood flow when a person goes from a reclining position to an upright or standing position too fast. It produces a rapid heartbeat and lightheadedness that can cause a person to faint. There are other symptoms of this, but I only wanted to mention the most common ones.

Seizures

There are multiple reasons for seizures to occur: epilepsy, head injury/trauma, brain tumor, and for the sake of this, long qt syndrome.

A seizure happens when there is a lack of blood flow to the brain.

Long QT vs Epilepsy

When someone has a seizure, one word comes in mind: epilepsy. While epilepsy is the most common cause of seizures, it is not the only reason for seizures to occur, as I mentioned above. However, Long QT patients can often get misdiagnosed with epilepsy for this very reason. I had three tonic- clonic seizures, also known as grand mal. For me, I felt normal after coming around (the seizures lasted a few minutes and it took a few minutes for me to come to fully - I believe they would last 5-7 minutes) except for being fatigued. By the next day, I was fine in that regard.

Since fainting and seizures can occur from a number of things, it is crucial to get a thorough evaluation if you experience either a faint or a sudden onset of a seizure. When I was going through my seizures, the possibility of epilepsy came up after all three, more so after my second one. If it wasn't for my pediatric cardiologist after my third one, I could have been diagnosed with epilepsy myself.

Cardiac Arrest vs Heart Attack

The last symptom I'm going to mention is cardiac arrest. Cardiac arrest often gets mistaken for a heart attack, but there are difference between the two.

Cardiac Arrest:

• electrical problem
• occurs when the heart malfunctions and stops beating unexpectedly
• Cardiac arrest is triggered by an electrical malfunction in the heart that causes an irregular heartbeat. With its pumping acting disrupted, the heart cannot pump blood to the brains, lungs, and other organs.
• Seconds later, a person becomes unresponsive, is not breathing, or is only gasping. Death occurs within minutes if not treated.
• It can be reversible if treatment is started within minutes. Proper treatment is CPR and the use of an AED, automatic external defibrillator. 
• In some rare occurrences, the heart will return to its normal rhythm without intervention.

Heart Attack:

• circulation problem
• occurs when blood flow to the heart is blocked
• A blocked artery prevents oxygen-rich blood from reaching a section of the heart. If the blocked artery is not reopened quickly, the part of the heart normally nourished by that artery begins to die.
• Symptoms of a heart attack may be immediate, but more often symptoms start slowly and can persist for hours, days, or weeks before a heart attack. 
• Unlike with cardiac arrest, the heart usually does not stop beating during a heart attack. 
• Symptoms can be different for men and women and they include: chest pain or discomfort; shortness of breath; cold sweats; nausea/vomiting; back or jaw pain; or pain radiating down the arm, in particular the left arm, but can be either side.
• The longer the person goes without treatment, the greater the damage.

Most heart attacks do not lead to cardiac arrest. But when cardiac arrest occurs, heart attack is often the common cause. Other conditions may also disrupt the heart's rhythm and lead to cardiac arrest.

Credits:

https://cpr.heart.org/AHAECC/CPRAndECC/AboutCPRFirstAid/CardiacArrestvsHeartAttack/UCM_473213_Cardiac-Arrest-vs-Heart-Attack.jsp cardiac arrest vs heart attack

Triggers

In a previous post, I mentioned that there are three common types of Long QT Syndrome. I believe the triggers that will be brought up can be for any of the types. The triggers can cause irregular heartbeats or arrhythmias that result in the symptoms of Long QT

Long QT 1

• physical exercise, particularly swimming
• emotional stress
• torsades de pointes, a fast heart rhythm caused by the ventricles, occurs more often in type 1
• Patients with type 1 may have more arrhythmias that can cause symptoms, but the episodes usually stop on their own.
• the symptoms/episodes are less likely to be fatal

Long QT 2

• startle or surprise
• sudden loud noises such as an alarm clock, car horns, a doorbell, or a siren
• emotional stress

Long QT 3

• rest
• during sleep
• arousal from sleep
• Type 3 is often association with having bradycardia, or a slow heart rate, which cause the arrhythmia and symptoms to occur.
• Patients with type 3 have fewer episodes of arrhythmia.
• Symptoms/episodes are more likely to be fatal.

While type 3 can be more fatal and type 1 less fatal, all three of these types and the other genetic types can have sudden cardiac arrest and can be fatal. While not all triggers may be known, they share common ones. For instance, type 5 triggers are similar to that of type 1.

Triggers can overlap. For instance, someone with type 3 can experience symptoms during sleep and with startles. Likewise, someone with type 1 may experience symptoms from exercise and startles as well.

More information will be provided in later posts on how all this effects lifestyle, especially when it comes to sports and exercise. After all, it is still important to stay fit and healthy despite having a heart condition.

~Meg~

The Third Seizure Part 2 and Diagnosis #Meg's Long QT Journey

I ended the last post stating that long qt syndrome was a possible diagnosis. Here's the rest of how that became official.

Getting a second opinion meant going through another round of tests for both cardiology and neurology. On one side, my cardiologist needed to make sure it was long qt and not anything else heart related. At the same time, my neurologist still had to rule out epilepsy and anything else brain related. Most of the tests were what I had before: EKGs, echo cardiogram, EEG, a sleep deprived EEG, stress test, and an hour long MRI of my brain. Not that it matters (and this won't be in the published book form of my story), I had the MRI on my 14th birthday. The results pointed to the long qt and proved that I didn't have epilepsy.

That would've been great, if only my doctors could agree on a diagnosis. My cardiologist wanted to diagnose me with long qt, but he couldn't until my neurologist ruled out anything brain related. Even though I was cleared from having epilepsy, my neurologist wasn't satisfied and wasn't going to be satisfied until she could come up with some way to diagnose me with it. No lie, it's what she actually told us. All of the tests were done in March and April. May came around and we were still waiting on an official diagnosis. On May 14, my neurologist wanted to do another test: a 24 hour in-hospital EEG. That was my first ever night I spent in the hospital - hooked up with wires connected to my head with a monitor watching my every move at the bottom of the bed. It would've been okay if I had actually needed it done. It was all worth it because when I got discharged the following evening, I had what I needed: answers.

May 15, 2001 was the day I officially got diagnosed with Long QT Syndrome. It was, once again, a bittersweet moment. I was relieved that I finally had an answer after a two year battle that included having three seizures and what seemed like, endless tests. However, it became real. I was beginning to understand what it meant and how it was going to affect the rest of my life, as I was only 14. I was supposed to be looking forward to graduating eighth grade in June and starting high school in a few short months. Instead, I had to accept the fact that I had a heart condition and would have to take medication for the rest of my life despite that I looked and felt perfectly normal.

Coming up next: what exactly is Long QT Syndrome?

❤Meg❤

The Third Seizure Part 1 #Meg's Long QT Journey

I've decided to divide this in two parts. This first part will cover my third seizure and what led to a possible diagnosis. The second part will be the follow up testing and getting answers to a two year battle.

Once again, things went back to normal, well kind of back to normal, for a few months. Anxiety attacks were becoming the norm, however. My third seizure happened on February 23, 2001, a mere seven months after my last one. I was still 13. This is the seizure I remember the least about. My mom and I were at a local pizza store, waiting for our dinner to get done on a Friday night. It was always busy on those nights so we were just standing there, for how long, I cannot remember. I had glanced at the clock and that undescribable feeling came over me. I simply told my mom I wasn't feeling good. I know she asked for one of the workers to help me to the sitting/dining room since the actual seizure hadn't started yet. That's all I remember until I got to the hospital. They did manage to get me there and sit down, but I wasn't acting right and stood up right before the convulsing started. By the time the medics got there, the seizure had stopped, but I was stiff on the left side. The medics attempted and succeeded in walking me to the ambulance and put me on the stretcher, even though I had been dragging my left leg. The medic tried to administer oxygen, but I fought it and wanted nothing to do with it. Since I was still out of it, I was taken to the local hospital as supposed to the children's hospital due to the fact that the other one was closer. Once at the ER, I was placed into a wheelchair and admitted right away. On the way back to the room, I was able to answer basic questions and only got one wrong - questions like where was I, my name, the year, date, etc and at one point I was crying hysterically. I was transferred to the bed and that's when I started to become more aware. I remember resisting a bit when the nurse was trying to put a gown on. Once that was done, I was given oxygen and that's when I started to feel normal. Before the medic left, he stopped in to check on me and it took me a few seconds to realize who he was. I was monitored for a couple hours. My parents were given the option to have me admitted for observation overnight or get discharged. I was discharged with orders to follow up with my doctors.

I believe we first met with my pediatrician. As we were getting frustrated from not getting answers, we made the choice to get a second opinion at a better hospital, the Children's Hospital of Philadelphia. I saw a neurologist first and then the cardiologist. At the first appointment with my new cardiologist, I had an EKG done and based on that and my other records, he gave us a possible answer: long qt syndrome. It was a bittersweet moment. I felt relieved we were finally getting somewhere, but on the other hand, I was scared, based on that I had never heard of the condition before. Looking back, I don't think I really listened as my doctor went on to explain what it was. It may not have been final, but I was just glad that we had something to go with, a piece to a puzzle that had been missing for two years.

I'm going to end this post here as I don't want it to get really long. The second part will be up soon.

#Meg's Long QT Journey: The Second Time's the Charm (Or Not)

The Second Seizure

At the end of my last post, I finished by saying that life returned to normal. And it did for awhile. That all changed sixteen months later on July 8, 2000 when I was13. My family was down the shore for the day. Sometime in the afternoon, we had been watching the rides for a couple before we turned around to continue on our way. As soon as we had turned around, I felt a seizure coming on. You may be thinking how did you know that? With each of my seizures, I experienced this feeling that's undescribable (maybe if you're someone who's had seizures, you know what I'm talking about). Anyway, I grabbed my mom's arm and simply said I didn't feel good; I didn't want to fall and hit my head since we were on a boardwalk. We had just passed a bench and she tried to lead me to it. Tried, I say, because I couldn't move. My legs went stuff and yes, I felt it. It was like my brain was telling my body to move, but I just couldn't. Imagine telling yourself to do something and you can't - it was one of the scariest things I have ever been through. I did go into the seizure a few seconds after that, with my parents laying me down and my dad cradling my head. A pier attendant administered oxygen to me until the medics got there. Now, this is where it gets interesting. Obviously, I was taken to the hospital. However, I can remember some things before coming completely to. I was able to feel them rolling the stretcher across the boardwalk (in taking me to the ambulance) and people talking, but it didn't make sense to me. While I was experiencing this, all I saw was white. This sensation didn't last long and then I went back out. I came to sometime in the ambulance on the way to the hospital, which was like twenty minutes away. Once again, I was observed for a couple hours before getting discharged with the orders to follow up with my doctors. This time around, I only had two tests: an ambulatory EEG and a tilt table test. The ambulatory EEG was like a regular one, except that it was done outside the hospital for 24 hours; the two differences are that the wires attached to your head are wrapped in gauze so they don't fall off and attached to a box that had to be plugged into a wall. The purpose of the tilt table test is to recreate an event - to try to make you faint, etc. You're strapped to a table that's then tilted to an upright position (almost as if you're standing but not quite). The first twenty minutes or so is spent to see if something or any symptom will happen on its own. In my case, nothing did. Once back down, I was given a drug to accelerate my heart rate and then it was back to the tilted position. It was supposed to feel as if I had been running. It was much worse. The pounding sensation was the most uncomfortable feeling in the world. It's the same amount of time each round, but within ten minutes, I started to feel lightheaded and like I was going to faint. After a couple minutes, I was told that my blood pressure dropped really low and despite how I was feeling, there was talk about doing it again. It wasn't and once I was free and able to sit up, I was given juice and crackers, which helped me feel better. At the same time, my parents who weren't in the room were told I had had an event. This was a test I don't ever want to experience again. After all was said and done, my family and I still didn't have answers.

It was around this time that I knew something had to be wrong with me; I just didn't know what it was. Seizures are most common in epilepsy and even though I was cleared from having it, I couldn't help but wonder if I had that anyway. I started having trouble with anxiety, but more on that later. At 13, I didn't want to be going through any of this; I just wanted to be a normal teenager. And since I was going through such a hard time, I just wanted and needed answers.

The much needed answers would be coming in a few months. But first, another seizure would occur. I'll be writing about my third seizure in the next post and then finally I will be explaining what long qt syndrome is.

~Meg~

#Meg's Long QT Journey: The First Seizure

When I was 14, I was diagnosed with Long QT Syndrome and this is my story. In a later post, I will elaborate on what my heart condition actually is.

Every story has a beginning. It all started on March 10, 1999. It was a Wednesday and I was in school. Not long before lunch, I was in the  language arts class and we were conjugating verbs. Everything was normal until my vision started to get blurry. No big deal as I thought maybe dust or something got on my glasses. It only got worse, though, and I started to worry. Do I say something to the teacher or the kid next to me? The answer would be no only because it felt like I couldn't talk. I probably did feel lightheaded or dizzy, but I can't really remember. The next thing I remember is coming to on a stretcher as the medics were carrying me to the ambulance - I came to on a flight of stairs and knew where I was and everything like that except for what happened. At worst, I thought I had passed out. As you have probably guessed, I was taken to the local children's hospital. The ride was quiet as I didn't know what had happened - my mom was in the back with me which brought me some comfort. Once at the hospital, I got admitted to the ER right away and an IV was started just as a precaution. What followed was several hours of laying there and eventually I went for a CT scan of my head and despite it being loud, I fell asleep. Soon after, I got discharged with no real answers. I was told I had an innocent heart murmur which was nothing to worry about (unrelated to the seizure) and to follow up with cardiology and neurology. I don't remember when I found out that I had a seizure, but I'm guessing it was some time when was I in the ER.
Over the next couple of weeks, I was evaluated by both a cardiologist and a neurologist. I underwent a battery of tests including the following: EKG, EEG, stress test, and an echo cardiogram. After all was said and done, we still didn't know what caused the seizure. It wasn't epilepsy or some other brain issue and no heart problems came up either. This kind of started a back and forth thing between both doctors as when nothing was found cardiology wise, we were told it had to be brain related, and vice-versa.

I was 11 at the time, but turned 12 amidst when I was getting the tests done. Since no explanation was given, my life slowly returned to normal. It was a little scary knowing I had had a seizure, but I ended up thinking that it was just something that would only happen once and that I never would have another seizure. And if I didn't have another one, it was okay that we didn't have an answer. Unfortunately, I would be wrong. But that's for my next post.

~Meg~