I have to say hands down , when people contact me about BrS, it almost never has to do with the physical aspects of this syndrome. Id say 7-8 times out of 10, its about coping, anxiety, depression, etc. Does the medical field realize this? Or care?
Its just something I want to bring up quickly. There isn’t much to do about BrS. There are a couple of rules to follow and maybe we have ICDs but for the most part, its a “sit and wait” type of life. Wait for a shock, wait for an arrhythmia or worse. There isn’t a ton of doctors appointments. There isn’t a bunch of tests to run or prescriptions to write out. Its, in all essence, a rather simple syndrome, as long as you don’t die. Save a life and thats about it.
So what makes it so devastating? Besides the fact that your heart is a time bomb with an undetermined timer and countdown on it. Its not physical, its MENTAL. This is something people have to grasp. And most importantly DOCTORS have to grasp. Don’t just throw this diagnosis peoples way and then yawn and walk out. Take a minute to realize what you just told them…”I know you are completely healthy with a normal life, but sorry to say you will drop like a fly at any moment. But hey! It may happen in your sleep and you won’t even know about it so don’t fret!” That deserves a nice punch in the face if you ask me! We have to bear that burden, carry that cross and even worse tell our family members. Talk about walking on eggshells. I walk on them and my family walks on them even more so. Yeah, yeah, I get it…we all have to die someday. I just want to smack people when I hear that. I really do. I know, we are mortal. Thanks bud for that gentle reminder. But for the most part, many people will grow old. Something we might not get the opportunity to do. Most people will have a disease that winds down and slowly and surely takes your life away. You as the patient will get to grasp and cope with it day by day knowing slowly your time will come. Not with Brugada. That is why its so scary. There is no winding down. There is no warning. Picture walking through life with someone having a gun to your head. When will he pull the trigger? Will he ever pull the trigger? Or maybe he will just knock you out with it but you won’t die and will recover. Thats Brugada…walk through life holding your breath and blue in the face.
Now please tell me, enlighten me, how that is easy. How do you NOT have anxiety or mental wear living like that? Anyone that tells you they don’t live in fear is a liar. Ok, maybe some cope better and stopped worrying but rest assured at some point in their diagnosis they were scared to death. Don’t deny it. Brugada can cause arrest of the brain….Life stops, care free living stops, looking forward to the future stops, its like on certain days you are brain dead. Dead with fear. But its not always like that. I can go days or weeks without thinking about it. But I can have periods that it pulls me to the bottom of the sea like an anchor. My point is, please be aware of the mental aspect. Please be aware of the mental strain on your loved ones. And if any Doctors should ever read my blog, PLEASE be aware of this when you nonchalantly tell your patient they have this…
If you would like more insight into the emotional toil please read my other post https://brugadagirl.com/2015/02/15/brutally-honest/
Brugada Girl ™ 
Jul 19, 2018 @ 14:04:29
My daughter sent me this link and all I can say is WOW! I have polio for 75 years, my right ankle was operated on and now gives me fits, my right knee is shot, had 5 rotor cuff surgeries and a bad back (L something or other) but I would rather have these than what I have read here. Makes tears come to my eyes. Love.
Jul 20, 2018 @ 06:57:06
Hello Ron. I can say that since I wrote that post,things have improved. My blog is the good and the bad. That is the nature of Brugada Syndrome. Days you accept and days you hate. One day at a time, is my motto…
Jun 12, 2015 @ 10:46:50
I’ve been a mess lately so I figured this is the best place to go for understanding. I was diagnosed with Brugada last Thanksgiving of all days, and my ICD implemented just before Christmas. I’ve never had any reason to worry about my health (till now) nor have I ever spent any time in the hospital.
The fact of the matter is I’m not healing physically the way I expected myself to. I’m 33 years old and have reserved myself to the fact that cutting the grass is enough to kick the crap out of me for the day. My sweet 5 year old daughter off course wants me to play afterwards. I’ve tried before but I just can’t, at least not the way I used to or she wants me to. I’m tired – tired of feeling this way physically, tired of feeling this way mentally, tired of feeling scared, and just tired of being tired of it all!
There are days where I do t want to get out of bed, where I get this funny feeling that this the the day, today I’m going to get zapped. Then that opens the flood gates to the imagination which, as we all know, can be the worst thing when contemplating the consequences of getting shocked. My wife does the best she can to understand, I know this. She mentioned therapy but I feel I could spend 10 minutes in here and get more relation and understanding than by going to someone I don’t know who can’t relate for an hour.
I’m in complete ramble mode here, so forgive me. Does anyone else have trouble sleeping because of Brugada? Although the physical takes it’s toll, the mental is a juggernaut and one I can’t seem to conquer. I’ve only been aware of Brugada for 6 months now, but it feels like years. I hope this doesn’t make me a bad parent but I know I need to get my daughter checked for Brugada but honestly, I AM TOO DAMN AFRAID OF WHAT THE ANSWER MIGHT BE. Friends have told me there’s a good chance she won’t have it, but they don’t really know what they’re talking about and just doing their best to make me feel better. Plus, you can throw that whole what are the odds card out the window, right? We all lost out on that. Anyway, I know I’ll get her checked out, but it scares the shit out of me. Thanks to all who post in Alicia’s blog; I value each and every comment as if it were my own. We’re in this together so if I can ever help out, please reach out to me. Thanks again for letting me rant and rave.
Jun 12, 2015 @ 13:53:48
Oh Ryan. I feel for you I really do. This is so very hard to live with. Yes we have protection from death but it’s more than that. We are now afraid of our own shadows.But listen…you have to live. You have an ICD to live. If you have cardiac arrest it will save you. You can’t live as if you have no protection. I just want to mention real quick mowing the lawn…I was told no lawn/ landscaping equipment allowed because it can interfere with the ICD. Check into it. Anyhow, it will get better. 6 months is not enough time. I know people who have had it for years and struggle mentally. So please be patient with yourself. One day a time. Do little things…take short walks, ride a bike leisurely, bring your daughter to the park. Honestly, the more you do, the more you will realize you don’t have to be afraid. I dance, workout, swim, ride my bike….i get scared while doing it but I push the demons away and keep on living. As far as your daughter, yes absolutely get her tested, but it’s totally normal to want to wait. Juts start the process if you can. It takes awhile anyhow so it won’t all happen in one day. Also…I’ll share something. I was put on an anti depressant and anxiety meds. And you know what? I feel much better. There is no shame. Its hard to walk this walk alone. I’m here for you..
Jun 12, 2015 @ 02:11:29
I found your blog during my nightly search for information. I do not have Brugada but my husband does. He was dx 3/19/15 had his ICD in on 4/14/15 got positive genetic test back 3 weeks ago and sent of my kids genetic test last Friday. Since my husband was dx our world has fallen apart. We don’t talk we just go through motions. Some days weeks I’m ok but this week im a mess. My question how did your husband deal with everything. I know this is my husbands dx but I fully feel the weight of it. My husband no longer does the things he use to with me and the kids. He is always tired and spends so much time in bed. I feel like an ass when I’m uoset or crying but I can’t help it. I’ve only started to read your blog but the night is young and I don’t sleep much these days so maybe by morning I would have read it all.
Jun 12, 2015 @ 09:01:22
Hi Ellen!! Rest assured what your husband is feeling and what you are feeling are TOTALLY normal. I actually am going to write a blog post about this, this weekend. You have no idea how many family members contact me who have trouble coping with their loved ones diagnosis. Please send me an email to talk…brugadagirl@yahoo.com
Jun 12, 2015 @ 10:39:12
I emiled.. Thank you
Jun 12, 2015 @ 16:56:33
I’ll check now. 🙂
May 13, 2015 @ 22:19:33
New to the family, got semi-diagnosed in 04′ but the dr.s were split, and said not to worry, well I just got my ICD put in last week, looks like they didn’t know, or care. never really read up on it until a week ago, when I was laying in the hospital waiting for my ICD after an “episode” my 5th one that I can recall. You hit the nail on the head. Your words are the ones I can’t think of… you will forever have a follower In me, and would love to share my story
May 14, 2015 @ 07:46:10
Hi Brandon! You are lucky to be alive!! In 5 of your episodes what happened? Was it fainting? Cardiac arrest or arrythmia? You can email me to talk in depth if you want to. I love to talk to everyone and remember each of you and your story. Its brugadagirl@yahoo.com
May 14, 2015 @ 22:03:36
Yes I passed out all but 1 time. Wrote you a letter lengthy email lol
Jun 04, 2015 @ 12:05:16
One thing I’m lucky about is my husband is a police officer and trained in first responding. I have a CPR pro with me at all times.Hang in there Jocelyn!
May 14, 2015 @ 22:04:57
I wrote you my story! Feel free to email me with any ?s you might have!!!
May 15, 2015 @ 08:57:31
I just emailed you!
Apr 26, 2015 @ 07:34:43
Brilliant post and I totally agree. I’m waiting for tests and such but chances are I have it and I have to say I’m petrified. Scared to be alone or go to sleep a lot of the time, but your blog has helped humanise this whole scary scenario so for that a massive thank you!
Apr 26, 2015 @ 07:40:42
Hang in there Tom. Its extremely scary, I won’t lie. But knowing, makes you live. I hold onto that when its overwhelming. Just keep telling yourself that you are saving your own life and can now cheat death.
Apr 10, 2015 @ 11:42:07
Alicia, you are right on the money. Physicians too often undervalue the overwhelming mental health fallout that comes with any life-altering cardiac diagnosis. Whether we carry an internal defibrillator in our chests, or have survived a heart attack that terrifies us into being hypervigilant about every single subsequent twinge, or have ever heard those awful words “heart failure” lightly tripping from the lips of a doc who then (as you say) seems to yawn and walk out the door on to the next patient – as if the bomb they’ve just dropped hasn’t detonated yet…
We know that post-diagnosis depression and anxiety are very serious issues with many heart patients, and can worsen our longterm outcomes (depressed/anxious people tend not to take their meds, exercise, or do many of the other heart-healthy things our doctors tell them to!) Yet as Mayo Clinic cardiologists suggest, mental health issues are correctly identified in fewer than 10% of heart patients – even those with significant symptoms. Doctors rarely even mention them.
And it’s not only the patient who can suffer. There’s some interesting research on symptoms like death anxiety, shock anxiety, general anxiety and marital adjustment among the spouses of those with ICDs who experience their own high anxiety. More on this at: http://myheartsisters.org/2012/04/01/your-partners-icd/
Best of luck to you, Alicia – keep up the good fight.
regards,
C
Apr 10, 2015 @ 11:52:04
I’m glad the word is getting around that people suffer mentally. All my readers are silent. They read and don’t comment. They email me privately. I’m not sure why they are so secretive.The more we speak up the more we will be heard…
Apr 10, 2015 @ 13:15:32
And the more patients themselves speak up, the less reluctant others will be to share their own emotional/psychological struggles, too!
Apr 10, 2015 @ 13:25:20
I think people are afraid when it comes to speaking about the psychological aspect. In every facet of life there is a shame about mentioning you are struggling emotionally with something. I am actually a lot like that. I have the type of personality that I don’t need help nor do I want it. I struggle with this diagnosis everyday and have yet to tell my doctor or seek help. I will fix it myself. And I have a very strong Catholic faith so that is my healing route. But just because people don’t share it doesnt mean its not there. Thats what doctors have to keep in mind. A little common sense goes a long way. Tell someone they will die in their sleep = tremendous anxiety and panic. They shouldn’t have to be told.
Apr 09, 2015 @ 16:53:35
Hi Alicia, nicely written – I sometimes had to laugh out loud. You’re so right. I think somehow they got it a little bit here, as there are some sessions with the psychiatrist coming with the ICD implant. However, most of the stuff you have to work out yourself (like what’s the best Meditation etc.). However, I saw a lot of Parallels to Walter White in ‘Breaking Bad’. Not that I cook ‘Meth’ now, but it kind of confronts you with death and thus you start doing and saying things immediately rather than waiting or putting it off.
Apr 09, 2015 @ 17:24:24
I can definitely see a psychiatrist being needed for all of us!
Apr 09, 2015 @ 16:00:42
“To me, living with Brugada ánd an Implantable Cardioverter Defibrillator is like living the life of a parachute jumper. A parachuter jumps out of his aircraft, knowing his chute will open before he hits ground, and therefore he will know he’s safe. For me it’s exactly the same. I know my icd will fire, and will keep me alive (experienced that 3 times!). The only thing is: I never know exactly when I will be in free-fall… Simple as that!”
Apr 09, 2015 @ 16:26:09
Good analogy! It’s not knowing that is frightening. Knowing you can cheat death still makes you afraid of death. At least it does for me.I think I’m also mainly afraid of how being shocked can be bad for your heart in general. Yes it will save you but at the same time an electric current into the heart repeatedly can’t be good for it either.
Apr 09, 2015 @ 18:29:56
Great analogy indeed! I’ve actually had a pretty rough day, both physically and emotionally. Reading these posts and being able to respond of them have really helped out a lot. It’s frustrating more often than not because I can barely make sense of my feelings. Sometimes, hearing from another who just gets it helps me to better sort things out, even if only momentarily. So for what it’s worth, thanks everyone!
Apr 10, 2015 @ 08:00:06
Don’t worry Ryan. I think we are all a little nutty after diagnosis. Just let your feelings run where they may. It’s absolutely normal.And even if others don’t understand it, all us BrS patients DO!
Apr 09, 2015 @ 13:53:05
Alicia,
You are SO SO right; this is an extremely mentally taxing and devastating situation. Even after my ICD implementation, when I was “supposed to feel better,” NO WAY DID THAT HAPPEN. Did I notice the physical differences, the limitations I now feel when playing with my daughter or exercising…sure. Do I mind them? Yes, but it’s par for the course and I realize that. What I CANT wrap my mind around is the sit and wait mentality you were speaking of Alicia. At LEAST once a day, I’m thinking to myself, “is this it for me? Am I going to be shocked driving to work or experience an arrhythmia at any given time?” I struggle maintaining A healthy outlook on my life and despite the fact I’ve taken the one and only preventative measure at reducing the risk. The mental any motional baggage that comes with Brugada is far greater than I ever could have imagined.
Alicia, I don’t think there’s much more I can add to your original post, because I think it was worded perfectly. I guess in reiterating some of your points, i’m trying to convey just how much I can relate to what you’re saying and feeling. You told me from the very beginning this was an emotional rollercoaster. True words were never spoken. I’m sure you already know this but it always helps each of us to hear it from time to time: you are not alone! 🙂
Apr 09, 2015 @ 14:26:23
Ryan all I can say is it DOES get easier with time. I don’t feel like the anxiety will ever pass, even with time, I find it impossible to totally forget Brugada. Its like your own shadow….most times you never see or even pay attention to your shadow. But at times you notice it and it’s very dark and tall and strong looking and you can’t help but notice. I do hate how I can be having a normal day and the thoughts attack me without warning…like I’m driving and listening to music and all is right in the world. Then out of the blue I’ll say to myself ” what if I faint right now this very second!” I HATE those random thoughts that come and go like someone is whisepring in your ear. I’m positive you know what I’m talking about
Apr 09, 2015 @ 15:59:21
I absolutely understand the constant “whispering” in the ears. It’s not something to be tuned out forgotten throughout the course of the day, no matter how hard we try. Suffice it to say, the damage being done is far more mental and emotional than anything, and yes, the doctors with this mind-numbing matter-of-fact attitude bother me as well. I know it’s just another day at the office for you and you’ve seen it all, but guess what? We haven’t! A little compassion and empathy will go a long way as opposed to getting this devastating news with a “just deal with it” attitude. Oy vey!
Apr 09, 2015 @ 16:28:32
Very true! I really truly believe Doctors need to realize BrS is a physical AND mental problem. Granted everyone can say that about any illness but what makes BrS so terrifying is its silent AND it’s unfixable.We are merely relying on something to bring us back to life
Apr 09, 2015 @ 10:19:11
You’re so right. I got the diagnosis, went back three months later for a follow up and then told to just have annual checks. No one, not even my GP has discussed what it may have done to my mind. No one has asked if I’m having trouble sleeping. No one has asked if I spend time wondering if I am just going to drop down dead one day on my way to work. I have learned to cope but in the beginning I felt so lost and hopeless. You’ve really summed up what I feel and have felt. I just hope some doctors out there read this and think about the other impacts upon our health this diagnosis has. I could have done with some support. Thankfully, my boss was very sympathetic and patient and understood if I was falling asleep at my desk because I’d been too scared to sleep in the night, or if I ended up with a migraine caused by exhaustion. Without a caring boss I dread to think what life would have been like. I consider myself lucky in that respect. I did find some comfort from reading your blog posts and some of the posts in the Brugada forum. Thank you for all you do.
Apr 09, 2015 @ 10:24:02
It’s definitely a part of the syndrome many don’t talk about.Maybe they don’t know about it.The patient certainly knows about it. But the doctors dont. That really bothers me. Its chilling to see how some can destroy your life with a diagnosis and not blink.I understand they get burned out . But even a little attempt at caring goes a long way. This diagnosis is not easy to swallow. I think it’s essential that the mental turmoil of it is brought to light…