Brugada Girl ™

Most of us know that a fever is used to to help diagnose Brugada. Many people who are symptom free may all of a sudden have symptoms and an abnormal EKG while they have a fever. That is because heat in the form of your core body temp can alter your heart rhythm. Many people found out they had Brugada when they were sick with a fever. When a doctor suspects that you MAY have Brugada they also want you to get an EKG when you have a fever. If there is a change to your EKG with fever it helps them diagnose you and find your risk. But what if you already have Brugada? Should fevers be a concern? ABSOLUTELY!! It may be used as a diagnostic tool but it doesn’t change the fact that even if you already know you have Brugada, a fever can change your rhythm and may cause Vtach or Vfib. That may not always happen but its best to be prepared. If you have Brugada and your getting sick, treat the fever non stop. It may land you in the hospital if you don’t. I had a fever from strep throat and it didn’t make my heart go out of control terribly but it aggravated it enough that I had to call m EP and take Cardizem, a calcium channel blocker, while fevered to keep the palpitations at bay and keep my heart rate down. So always be aware of sickness and ANYTHING that can raise your temp. Even being out on a hot beach, doing yard work,etc can aggravate your heart.

I do want to mention an episode my 4 year old had. She is positive genetically for Brugada. She is asymptomatic and all her tests are normal. Brugada generally gets worse with age so this is no surprise that for now everything is normal. Just because your safe in childhood doesn’t mean you will be safe in adulthood. But her EP, although she knows she already had Brugada, still wants an EKG with fever. I was confused thinking that was only a diagnostic tool to see if you have it. But thats not the case. Even if you have it they want to know your risk. She had a fever and off to the hospital we went. She had an EKG that indeed showed minor signs of Brugada!! Otherwise her EKG is normal. This is proof further that Brugada CAN cause symptoms in her and is reason for the EP to watch her even closer. 

So my dear readers, please use a fever to your benefit, whether waiting for a diagnosis, already have it or assessing risk. And either way, no matter what category you are in, treat the fever right away. Once its reduced the symptoms go away. Make sure you always get an EKG with fever UNMEDICATED to see how your heart truly reacts 🙂

Anyone take Topomax/Topirimate for migraine prevention or seizure? I was put on it for migraines a week ago because its one of the only drugs safe for migraine prevention as we cant take tricyclics, beta blockers, triptans or SSRIs. So my doctor prescribed it. Within a week I had chest pain, doubled heart rate, flashing lights, weakness and a near fainting spell that required my husband to catch me mid fall. I contacted a Brugada expert I talk to. He informed me this particular drug, although not listed on brugadadrugs.org, disturbs the current in the sodium channel and can be problematic with Brugada patients. He is contacting the doctors in Netherlands who maintain the drug database. Anyone else take this?

I realized I havent been on my blog for almost a month!! I say sorry to my dear readers that look forward to what I have to say. Do you know what the problem is? There is only so much that can be said about Brugada, only so much I can talk about. Just the same as the doctors are still learning and dont know much, we as the patients dont know much. All I really need to know is I have it, Im protected with a defibrillator, I know which children have it and a plan is in action to monitor them every 6 months. From there what can I do? Not much but live my life. Its been 6 months since my defibrillator has been put in. Im at a point now where I dont think about it much. Ive become accustomed to it. I dont stare at it all day in the mirror, google everything I can about Brugada or talk about it non stop. I dont fear death. Is it coming? Probably but Ive come to respect that this little machine in my chest will take care of that. So what else can I do? LIVE MY LIFE! Brugada is extremely scary because it takes you without notice. It happened to my father. But thats not going to happen to me. I feel blessed. Yes, I said BLESSED.Lucky enough to find out I have Brugada AND receive treatment. This means I will live, I will watch my family grow, I will have time with everyone.I cant sit and wait for a shock though. I cant wait on edge for V Fib. You have to learn to ignore it. Take the precautions your doctor said but in the long run ignore it. If brugada wants to steal me it will. But my ICD will change that fate. My life now is getting my kids off to school, waiting for autumn and the cool days and buying pumpkins. Planning Thanksgiving dinner and I cant wait for Christmas. I wake up with all the plans I used to have. I think about all the weeks and months ahead with things to do. Brugada no longer invades my thoughts. Why should it? It will be reversed in about 8 seconds from an ICD. I got an ICD to live, to be free, to not be scared. We all have to come to that point where we spread our wings and fly and accept what we have and live life normal. It takes time.It really does. But it will come. One day you will realize the whole day went by without thinking about it.Then a week went by without a thought. I’m not quite at that week or month mark yet, but I WILL get there because I WANT to get there. Dont obsess!

I am pleasantly surprised every day with how many people message me on Facebook and Twitter with their personal stories. And alot of them have the same question and concern…when will we accept it? Its not just the patients themselves that contact me but also their spouses who are scared to death of losing their loved one because they almost did.Thats not surprising either being a new study came out that said the spouse of a person who has an ICD is more anxious than the person who has the actual ICD.Anyhow, they want to know when will they accept their diagnosis and the fact that they have an ICD in them and will, forever more. This is the million dollar question. And its a difficult one for me to answer because I was only diagnosed in February and got my ICD in March. This is all new to me as well! I just became a “brugada guru” because I need to understand whats happening to me, what will happen to my children, and my biggest driving force is figuring out my fathers death. He was alone when he died and I became obsessed with whether he had pain, did he know he was dying, was he scared, etc. I set out to learn everything I can. Ive emailed experts from all over the world to the point that I felt like I can be charged with harassment lol. I follow hundreds of doctors on Twitter who luckily converse with me about Brugada. I read medical journals that are accessible. I can go on and on with how much time and effort I put into understanding this demon that plagues my family. Anyhow, whats my point? My point is I may seem to know alot but I am also newly diagnosed and struggle to find the answer of acceptance. It is the greatest hurdle we endure.

Brugada doesnt have many physical limitations besides avoiding activities or items with high amounts of electric and magnets, watching how high your heartrate goes, and keeping note of what feelings/symptoms you have to notify your EP about. There isnt much pain or fuss or pills with this defect. There isnt a million doctors visits. ITS ALL WORRY! ITS ALL MENTAL! When is the next shock? What if it doesnt work? How much will it hurt? What if I really die over and over? How will all these shocks affect my heart muscle in the long run? Can I exercise? What if Im shocked while driving? What if my kids see it and are terrified! What about lead fracture? Will I get electrocuted to death? Who else has it? Will they get an ICD!? Will they find the gene responsible? And on and on and on….Am I right?

So the biggest battle is calming the mind. My method is my faith and Catholicism. Others have different methods. Just know your safer than you were before. Brugada is most deadly in rest, not activity. You can control your heart rate to avoid inappropriate shock.A lead fracture or near fracture gives up signs to your EP that they may discover before its an issue. Nobody wants Brugada.Nobody wants an ugly ICD bulging out with a scar. Will you ever fully,fully accept it? Maybe not. Nobody wants to be sick. I think you get more to a point of acceptance that you dont think or obsess about it. You carry on with life and live. YOU GOT AN ICD TO LIVE! NOT TO WAIT FOR DEATH IN FEAR! You will accept this is needed and be damn happy you have it because there are people who werent given that option, like my father. The real acceptance is not being happy or OK with your diagnosis. The real acceptance comes with feeling safe and feeling lucky. It will come and go and some days will be happy days and other days you’ll be pissed. Its all fine and normal. Give yourself time. Give yourself a chance. But most important LIVE! LIVE! LIVE!!

So its been awhile since I wrote last. It was when I found out 2 of my kids have Brugada like me. It was also the day I got my mothers test results confirming she was negative and it was my father who gave me the Brugada gene, which took his life. I already had figured that out being he died suddenly at 55 and his mother, my grandmother, had several fainting episodes. But finally knowing after all these years what ended his life was nice closure. So where am I at now? Well I know my grandmother fainted a lot. She must have had Brugada and passed it to my father, although she did live to be 86, so that is promising. My father, unfortunately must of had the gene and it didnt end well at all. These are just pieces to a puzzle Ive been working on for years. We know Brugada doesnt skip generations so thats why I am lining this up. Then comes me.I test positive for the gene, have a Type 1 EKG and now an ICD. So that is 3 generations of BrS I know of. Now I am entering the 4th generation with my children. I have 5 children so it would have been catastrophic if they all had it. But it still hurts just as much that any have it. It has a hereditary rate of 50% which is very high. So I wasnt surprised. My family was optimistic to the point of it angering me because I have researched and researched this and knew how likely it is to be passed down. I told them all, “I bet 2 or 3 have it” and damn it, I was right. No one listens to me.

So now what? Well, they have normal EKGs and no events came up on monitoring. Isnt that good news? Well, most kids have no symptoms. So, again, Im not surprised. Brugada sneaks up on you later in life. Symptoms and bad EKGS come out later. Its possible to come during youth, but not as probable. Is it good news they dont need an ICD right away? Sure it is! Does it mean they will never need one? Not at all. I was also a healthy 4 and 17 year old with no symptoms.So this is a waiting game. Wait for them to get older, monitor them over the years, and wait for the symptoms to show up and they will be in the same spot as me. All I can say is thank God for ICDs. My 17 year old will end up with an ICD sooner because of her age and because my symptoms showed up in my early 20s. She is perfectly fine with it because she knows its needed and it will save her life. My 4 year old knows nothing. I told her nothing and dont plan on it until shes older. Why bog her down with serious matters she could never grasp? My hope is being she is so young, at some point, there will be a cure or a pill and an ICD wont be needed. A day when Brugada is conquered.

For now, we go to the doctor every 6 months and get EKGs and holter monitors and EKGs while they have a fever to see if they can uncover a bad EKG. We follow the rules….watch the heat, look out for fevers, keep hydrated, mind your electrolytes, stay active and heart healthy. Thats about it. Of course if symptoms show their ugly face sooner, intervention is needed. For now, follow the rules, take an external defibrillator where ever we go, keep an eye on the medicinal ” do not take” list and see the doc.

All thats left to do is let go and trust God. Let go of the thought that its my fault, “cant I change it? Why did it hapoen? What if this happens? What if they die? What if it happens in their sleep?” If I can throw all that shit out of my head Ill be better off. Thats where God comes in. I have Brugada and have 5 kids, a home, a wonderful husband and a happy life. Brugada didnt defeat me and God has held my hand through it all. He is right next to my children holding their hands as well. Let go, and let God!!

Being Im depressed and in a state of shock and anger and in disbelief, I will keep this short. 2 of my 5 kids have Brugada. My 4 year old and 17 year old have it.I dont want to hear that Im lucky they dont all have it because it hurts just as bad to know ANY of them have it. Ill post more when I calm down. I also found out my mothers test is negative confirming my father DID die of Brugada at only 55 of cardiac arrest.He died so we can live…

Alot of people ask me how I knew something wasnt quite right with my heart health. Its hard to answer because Ive suffered with palpitations, chest pain and preventricular contractions for years but they didnt concern the dcotor. They always bother me, especially at night, when laying down and for some reason when Im on my left side. Maybe thats because I have a right bundle branch block? It is a typical sign in Brugada.My EKG also says I have an axis deviation so maybe thats why symptoms can be positional? Who knows? Just speculating

Im asking people what was that main clue, that defining moment when you said “I think I need to see a doctor and talk about this” for me it was when I was on vacation and we went to a waterfall. You have to walk about a half hour down stairs to see the whole thing and get to the bottom to see the beauty of it. But guess what? That means you have to walk UP STAIRS for a half hour. It was also August and very hot. I had just come from horse back riding on a trail for an hour and that takes alot of muscle, strength and stamina. Most think horse back riding is just sitting there lazily doing nothing while the horse moves. Well if your doing it for real, thats not the case. You are controlling the horse with your body, mainly squeezing your legs together as tight as you can around its body to cue the horse what to do. And you kick it in the side to cue it. They weigh around 1200 pounds so you can only imagine how hard of a kick and squeeze you need to do to get this animal to do anything. They probably think a fly landed on them. My point is for one hour I was getting a muscle workout and riding up and down rocky paths. THEN, went right to the waterfall when I was already taxed physically. At the bottom of the waterfall I was already exhausted from riding, being dehydrated and hungry. But the only way out of there was walking up the stairs in the sweltering heat. Every couple of steps my heart was pounding, flipping, turning…I was dizzy and couldnt breathe. I felt weak and faint (fainting is a huge sign in Brugada) but I kept going. I had no choice. 3/4 of the way I just stopped. The kids were leaps and bounds ahead of me but I couldnt move. I was scared to move. What I was feeling in my chest was not right. My husband came over to me and I started crying a little. I knew right then and there something was wrong. There is no reason a 33 year old woman should be reduced to tears because shes afraid to climb any more stairs. I eventually made it to the top and was very close to fainting.I was sweating so much, which causes you to lose electrolytes like potassium, sodium and magnesium, which causes arrythmias. The mix between dehydration, over heating, physical activity and low blood sugar was almost a lethal mix for me but at the same time my cue from my body telling me “get your ass to a doctor ASAP!”

A few days ago my kids genetic tests were sent out to the lab. I should know in 4 weeks who has Brugada and who doesnt. All 5 kids were checked out by electrophysiologists. All 5 so far are asymptomatic and have normal EKGs. That doesnt mean much because Brugada is a problem later in life. Its great that,as children, they dont have to be burdened but it doesnt mean things wont change with age.And problems in childhood are possible but not probable

So as I shipped out the genetic kits to the lab I had mixed feelings.I felt like I was at the end of this long road.But I felt like I was at the very beginning. And at the same time felt both ha ha!

I felt like it was the end of the journey because I was diagnosed, my ICD is in place, Im healthy and moving on with my life. I will find out if any of my kids have it but in the mean time they only need to be evaluated every 6 months with an EKG. No ICD or intervention needed at this time.So in essence, all of us with Brugada in my house, will just spend time here and there at the doctor with, God willing, no emergencies. I will very soon know what Im up against, who has it, who doesn’t and can move on once again.That is why Im feeling like Im wrapping up the end of a night mare. But not really…

Technically its the beginning for myself and my kids.Yes, I have an ICD but symptoms and events can be on their way. Yes, Ill be safe but it doesnt change that something could be coming. My kids, I could only hope none have Brugada. But if some do,although its just routine visits, what IF they turn asymptomatic? What about the trips to the ER to get an EKG every time they have a fever (as ordered by the doctor) Will they need an ICD in childhood at some point? What if they are adults and need it but dont want it? From now on I have to tote around an AED (automated external defib) IN CASE they have symptoms. What will that be like? So this is why it feels like the beginning of a life long journey…

So is it the end or the beginning or middle of the road? Or a chapter done in a book and Im starting the next chapter? Day by day the answer changes and my feelings about it…

There is a definite link between a Brugada event happening during sleep and rest. Ive read so many articles that said its been called the “sleeping death”. Not that Im encouraging insomnia or for people to stay up all night but I had a thought.As I talk to more people, so many say they had a loved one who died during sleep or a nap. Many, many people!And even my doctor told me stay as active as I can because its REST that brings on Brs events. So that gives no excuse to sit around afraid. Being active can save you. Anyhow, of course this brings me back to my fathers death and the mystery of it. As youve read, he was mowing the lawn. Some say it could have been a heart attack, some say he might have felt something that made him sit in the chair he was found dead in. But I thought of something today…whose to say he wasnt taking a nap? I know my father. He worked VERY hard and napped often. Sometimes in the most odd places and could fall asleep in seconds.I always admired that about him…he can fall asleep like a narcoleptic! Not me! So my family and I assumed he was mowing the lawn, felt pain, or dizziness or fluttering and sat down and died. But maybe, being he worked the night before (he started his day at 2 AM) by time he was mowing the lawn he was just tired. Maybe mowing the lawn had nothing to do with it AT ALL! Maybe he mowed a couple of strips of grass, sat down for a rest or a little nap after being up all night and day and THAT triggered Brugada. My step mother who found him always said “he looked like he was taking a nap” meaning how peaceful he looked and his positioning. Maybe he REALLY was asleep and napping like he always did. I can go around and around with it and will never know. Its just a thought…