Dont Forget Mental Health and Brugada

I was talking to my mother recently because I wasnt feeling well and also very sick of talking about my heart. She is a registered nurse. She knows as much as a Doctor, I swear! I always bother her with my medical questions and needs. She knows all about Brugada, my diagnosis and the ups and downs that come with it. Wait, what the hell “up” goes with Brugada? Anyway, where was I? After all, she is also a mother who has children with Brugada…me and my sister! She is very familiar with the worries us patients have. And do you know what her theory is? She believes that therapy or mental help should be mandatory with this diagnosis. I think thats an amazing idea!! The mental aspects of this syndrome are major points that I drive home. I let all the people who contact me know, that this is a heavy mental struggle as well as cardiac. What do I always say?…. Afraid to die but now afraid to live! Its not easy going through life afraid of your own shadow, or heart. Its not easy having this knowledge at all. Ive said knowledge is power? Yes, the knowledge to save a life.Your own life. But with that knowledge is sitting and waiting for that same life to be taken abruptly.Minute by minute, second by second, night after night, etc. Ive pondered many times whether life would be better if I invented a time machine, traveled into the past and decided to never seek out a doctor for my heart. Maybe dying young is in fact better than living old, neurotic and full of fear, afraid to move or breathe. I absolutely do agree that mental help/health should be an obligation. I think every person diagnosed and even family members should be told about the mental torment it brings on. We should be warned of this in advance. I think if patients knew it is completely normal and acceptable to be scared, angry, sad, crying, full of denial… maybe it would be a bit better. Maybe if we were told “Go right ahead and purge all those crazy emotions out! Its supposed to happen!”, we might feel better. What do you think? Do you think the psychological aspect of this diagnosis is forgotten? Do Doctors or the medical field even realize this is a problem? I wrote about it before in Brugada Makes You Mental. It is my most successful post and Im happy about that. But I believe more should be done. I believe patients and family members need to speak up and tell their Doctors “Hey this news is depressing! It is hard to swallow! Im scared to death!” Pun intended! How many patients wish they were never diagnosed in an attempt to save their sanity? I do! Isn’t that sad? You get to a point where you think a short life is better than a long life full of angst and despair? I was wondering what everyone thinks about this? Do you feel mental health should be addressed? Have you needed therapy or medication? Anti depressants or tranquilizers to cope? Speak out about it! Don’t suffer physically and emotionally. Claim as much of your life back as you can…

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23 Comments (+add yours?)

  1. Grant
    Nov 02, 2015 @ 16:31:24

    I have Brugada and I struggle with the mental daily. I was in denial at first but now I know that sometimes I bring on my own anxiety. I take adavan which helps but when I have an episode it seems like my body is in overdrive and I get dizzy and my chest burns, cold hands and feet. I also have a rapid heart beat. I wish there was some drug I could take to make me relax.

    Reply

    • AliciaB
      Nov 05, 2015 @ 12:48:59

      Ativan is a tranquilizer used to help you relax. Its usually taken as needed. The mental struggle is a real battle that most of us weren’t prepared for. It gets a little easier over time though and some days you may even forget about it 🙂

      Reply

  2. Anonymous
    Oct 22, 2015 @ 21:37:52

    This forum is helpful and terrifying. I just said the word Brugada aloud for the first time yesterday. I live in Tulsa, even work in a hospital. I’m convinced I am the one who must lead the Drs.. And I’m likely to be diSmissed at that. Any input would be great. This is my story. I will start with family history.
    My daughter, age 12 has fainted twice. She is now 17, no cardio work up or rhythm monitoring.. I didn’t know, still don’t
    My son, age 16, diagnosed with a myocardial infarction at age 16, (heart attack) with extreme chest pain while playing basketball at school. They couldn’t find a cause so said it was an unusual type of vasospasm.. He only saw a cardiologist twice. He had a normal angiogram and Echo Doppler. His rhythm wasn’t monitored. He is 30 now, says he has palpitations.
    My mom had presumed SCD at age 55, no autopsy to confirm anything.
    My maternal uncle died with SCD at age 48.
    My other maternal uncle died last month at age 69 with a pacemaker and ICD in place.
    My brother had an “unexplained event” 2 years ago with dizziness and was told first that he had a heart attack and then that he didn’t, that it was from high blood pressure. He was seen in a rural hospital in Arkansas.
    My biological father has had a pacemaker for 7 years. He is 70.
    So.. That was exhausting.. And I’m sure boring to read. But I ink this is helping me. Maybe someone else, too?
    As for me, the first time I fainted, I was 15. Then I had a bout of fainting 5-7 times in my mid to late twenties. I did go to the Dr, normal ECG in office.. Told it was vasovago syncope. Once in my early 30s I had terrible chest pain, lasted a minute or so and resolved. I went to the Dr a couple of days later and was told it was indigestion, no testing was done.
    When I turned 40, I hooked up with a Dr. I had seen in the last and really trusted. I explained the cardiac history and that I would like to be thoroughly checked out. He did an EKG in his office, which was abnormal. He told me it looked like part of my heart wasn’t working right. He referred me for the myocardial perfusion scan.. The stress test w/ dye.. Normal results for my age and it was decided the EKG was a fluke of some sort, everything was fine.
    I’ve almost always had insomnia, multiple sleep mess as long as I can remember and palpatations, which I convinced myself and had been told it was just anxiety.
    A year ago, in October, then age, 48, I had a terrible almost complete loss of consciousness fainting event, first time in 20 some odd years.
    I see my PCP, who is great, a few days later. I had been taking Lisinopril 10mg 2x daily at that time for almost a year and metroprolol due to blood pressure. PCP thinks the metroprolol have bradycardia.He did and EKG in the office. I’m not sure what it showed. he ordered the Holter monitor, which I wore for 2 days. I’m guessing most people reading this have been through these similar tests. There were abnormal results with this monitor. He also discontinued the metroprolol I had been taking and referred me to a cardiologist.
    This cardiologist is pretty nonchalant. He re orders the myocardial perfusion scan that had been done almost 10 years before, decreases my Lisinopril in half. Then I begin wearing 21 day external 5 lead monitors.the first round I’m told I have sinus tachycardia.. No biggie, I knew that without being tested.. Right? My heart beat has ALWAYS been fast, my whole life. he also tells me that I had 7 beats of non sustained ventricular tachycardia. WHAT? I become quite alarmed and more anxious as I read about this.. So, we do a second round of 21 day external monitor. ( I work full time.. All of his as you all know is so hard on the psyche and sleep.. Impossible.) round 2 again of course, sinus tachycardia and also supra ventricular tachycardia.. WHAT? So now the cardiologist tells me we can do nothing, do more external monitoring or implant a loop recorder. I opt for insertion of the loop recorder, this happened on April24,2015. I carry a symptom tracker on me and a base on my nightstand. I was very poorly educated on this device, which was 30,000.. I’ve been told conflicting info on how it works and how to use. No one seemed to be monitoring it. I tell my cardiologist my blood pressure is still high, we go back to the same dose, same medicine I was taking when I started with him.
    I’ve had some difficulty tolerating the med with fatigue and big variability in heart rate. I thought it had evened out after a couple of months. I turned 49 on April 27
    So, a week and a half ago a hot day at the state fair, my heart rate started going high again 110 or so. It never came down below 105 that day, this persisted on and off for a couple more days. Then, 9 days ago the rate kept staying between 110-130. I felt panicky, chest tightness and shirt of breath. I called for an appointment for my PCP and cardiologist. ( I had never asked for anon scheduled appointment with the cardiologist) neither had appointment availability. So, I decided to calm myself down and deal with it.i did push the button on my tracker to send a record of the image that day.
    As I was boarding an airplane to go visit my sweetheart, two days later, I get a call from the cardiologist office saying he wanted me to come in the office then for an EKG. Apparently the clarity of data with the loop recorder is questionable. They tell me they think I’m having extra beats from my atrium or just fast sinus tach but that I should come in. I told them it couldn’t be an emergency as I called about in two days before. This was last weekend. I use an accurate phone ap that records my heart rate. Twice last weekend at 6 ish in the morning a recorded a rate of 205 and 209. The rate had remained 100-110 at all times for days.. On Monday,3 days ago, I see the cardiologist in his office. he does an EKG.. Says yes it’s fast in the 130s at that time. He explains so wing about dome shaped something in my EKG and that he needs a better picture. So orders the Holter monitor again. I’m wearing the Holter and have a loop recorder. He thinks I maybe having atrial flutter..come back in 2 weeks. I turned the Holter monitor in yesterday.
    I do feel these arrhythmia so. And I’m anxious and annoyed. I go see my PCP on Tuesday. He adds another bloop pressure med.. Cardizem 120mg. We talk. I had read info on this site before. I ask him if this could be Brugada. he says, I would have had early manifestations. I reminded him of my history of fainting starting at 15. he says it could be.
    Yesterday I call the cardiologist and say I want to have blood work done for genetic heart conditions and Brugada. His nurse relays to me the Dr says there is no family history or reason to do that testing. He had never documented any of the history I had given. Geez I go through it again over the phone with the nurse.
    No. They won’t order generic testing, but they will refer me to a cardio electro physiologist… I’m waiting for that phone call. I’m self absorbed, anxious, freaked out. My heart still has a mind of its own and I keep trying to find my baseline where it doesn’t keep changing. Thanks for letting me rant here. I’m scared for my family and me…thank you again for this forum.

    Reply

    • AliciaB
      Oct 22, 2015 @ 21:59:41

      Hi there! So from what you’ve said you’ve never had a Brugada sign on an EKG? Brugada has a distinct abnormal EKG pattern. Its isn’t always present. Unless it’s spontaneous, like myself, and is abnormal all the time or manifest abnormally on its own, without fever or sodium channel blockers. Genetic testing is expensive and they never order it done unless they have possible proof of Brugada. As long as your EKGs have been normal, they wouldn’t have much to go on with Brugada. There are many issues that can cause fainting, SVT, VT, etc. The way it’s differentiated from other heart ailments is with the distinct abnormal EKG, known as the Brugada sign. If you have a normal EKG, they sometimes administer a sodium channel blocker, to see if they can bring out that abnormal “sign”. But again, they would not do elaborate testing like that or genetics without some sort of proof that you may have Brugada. Also, genetic testing is not conclusive because only about 30% of BrS patients come back positive. You can have a negative genetic test and still have Brugada. Science has yet to discover ALL the genes responsible for causing BrS. This is why genetic testing is only a piece of solving the BrS puzzle. You can be negative and have Brugada. You can have Brugada and be negative because science has much to research. Unfortunately, without that distinct EKG doctors don’t usually investigate Brugada further. You can always get a second opinion though 🙂

      Reply

      • Anonymous
        Oct 23, 2015 @ 07:39:13

        I’m not sure if I have the sign or not. I’ve had “abnormal” EKG before in the past, but didn’t know what they were seeing. This was a long time ago and then sometimes my EKG would look normal. Too me when I look at the rhythms and patterns on my phone ap, at times it looks like what is described as the Brugada sign, but I’m not sure. When the cardiologist referred me to EPT, he said he didn’t think he saw a Brugada pattern but it wasn’t his area of specialty and EPT is more trained. I don’t know, I’m scared and pretty sick of it. I have apparently 4 arrhythmia so in a structurally normal heart. I truly question the investment of my cardiologist in my case. He seems pretty nonchalant about life and death. I still work full time, changing next week to a less stressful job setting. I tire easily and I never know when my heart is going to start trilling and going outta pattern.. Seems to be more frequent. Do you think they could just be missing it? PCP has seen my various EKG from time to time and said it could be Brugada.. Not that I want it to be. I would like, though to have a diagnosis if it could help me and my family or anyone else. Thank you for replying to me. I appreciate it and all the info you have on your site.

      • AliciaB
        Oct 24, 2015 @ 08:50:47

        I would definitely see an EP because this is their specialty. They generally don’t miss Brugada. They know what they are looking for. Maybe you can copies of your old EKGS that may show the Brugada sign?

  3. Marie
    Oct 04, 2015 @ 03:21:03

    Hi Alicia,
    The thing is that the Dr’s explained to me that only 1 in 3 has the gene..
    And that if you don’t have the gene it doensn’t mean that you don’t have BrS.
    And that not everyone with the gene or with BrS get’s symptoms!!
    So the Dr’s think that there is a inherited problem, however since i did have a negative ajmaline challenge my risk for SCD is low….
    I do have a terrible fam history. ( they all died suddenly of SCD )
    Almost all of them where male, only one female and she died around 60!
    So to cut a long story short.
    I need to come to terms with it all and continue with life!
    I cannot do that if i keep on going in circles with all of this. I need to get some closure and move on. I am not prepared so sit around, stressed and waiting for
    SCD to happen.

    Reply

    • AliciaB
      Oct 06, 2015 @ 14:53:11

      They are correct. Not all the gene mutations responsible for BrS have been discovered. There are only a few discovered which they test for. So technically its possible to have a gene mutation that is still unfound by science.Over time more genes will be discovered. And even if do come back positive for the gene, that doesnt mean it affected the sodium channels. I have the gene and symptoms. My sister has the gene but is fine. Thats why genetic testing isn’t a total means to diagnosis because they still have research to do AND it may not bring about symptoms

      Reply

  4. Marie
    Sep 28, 2015 @ 10:31:22

    Hi Alicia,
    So true… unfortunately in one way or another arrhythmia patients are still being taken for granted. Even the ones with malignant arrhythmia’s.
    Being a woman absolutely still doesn’t help either.
    It is very difficult and nearly impossible to fight this. It is a combination of a medical problem and unfortunately becomes a mental problem as well, simply because the Dr’s cannot handle young women with heart disease. For them it is a unnatural thing and they are simply not designed to handle it very well. Also the impact of
    heart disease ( of any kind ) is severely underestimated..
    For myself i can say that it has been really a difficult time handling all of the cardiac problems i have had over so many years.
    It started all in my childhood where i never got to meet any grandparents ( they all died suddenly of cardiac arrest ) . My dad died at an age of 48 ( i was 14 at that time ). For me as a child that was normal because I simply didn’t know better.
    It turned out much later ( 40 years ) that a lot of family members from my fathers side died suddenly and quite young. ( ages ranging from 34 to 60 ).
    When I was 25 i suddenly experienced severe tachycardia, but was never really taken seriously. ( stress ). At that time there was not much knowledge about ablations or inherited cardiac issues…
    Time went by and by the time i reached 40 , the attacks became unbearable.
    I could not function anymore but i had to. The mental part of waiting for another attack was terrible. At age 43 i had my first ablation. It failed terribly, was extremely
    painful and left me in shock. After 2 weeks i was rushed to hospital because when having diner at moms i became unwell ( mom said later.. you looked like you’re going to die.. ).I spent 11 horrible days in hospital where i had a CT scan,
    a CAG,and second ablation…..and as the icing on the cake, a thrombosis…
    I did not felt any better and a 3th ablation was planned ( this all in 7th months time ).My primary care doctor felt this was all strange and sent me to a facility to get tested for brugada. ( i never heard about this before ).
    I got an MRI, ajmaline test and special ECG and genetic testing.. And guess what
    they suspected a ION channelopathy..but where not able to diagnose it.
    Leaving me with the fight against a undiagnosed unknown enemy.
    Now i still have arrhythmia’s and the EP want’s to do a 4th ablation.
    I am left with half of my job, half of my pension, half of my endurance and I am
    really having a hard time dealing with it all. I really feel so much anger towards
    the DR’s . None of them ever asked me if i could cope.. No one asked what they could do to help me. I am angry with my dad
    because of having the heart problems of which I am sure I inherited those from my fathers side. And I feel that whilst making up the balance , this all has costed me dearly.
    I decided that i am not going to be longer in the usta mode.
    I will not be having a 4th ablation. I will accept the way it is now and i have to live with it at age 44….. Having the arrhythmia’s and coping fighting the ” unknown enemy “..

    Reply

    • AliciaB
      Sep 28, 2015 @ 13:05:52

      Hi Marie! What a story! Do you have Brugada or are they unsure? Are all these ablations for tachycardia? I feel so bad for all the early death in your family and all you had to go through. I understand that frustrating feeling of wanting to throw your hands up and say “Who cares!? I don’t care anymore, Im done with all of it!” I get like that. Sometimes Im convinced that when I need a new ICD I just won’t get one. The whole thing is frustrating and scary. At least we have people online in similar situations to talk to because Doctors are just to busy to care. Or maybe most don’t know what they are talking about and cant admit it lol

      Reply

      • Marie
        Sep 28, 2015 @ 14:09:16

        Hi Alicia,
        Yes all the ablations are for tachycardia and I was told that i have a arrhythmogenic heart…..what could be called a syndrome. Those where the exact words from the EP. In other words i will always have rhythm problems. ( what a blast! ) I had 3 different EP’s ( same hospital ) and a Professor who specializes in Brugada looking at my case.
        They highly suspected Brugada but could not confirm/diagnose it …but the fact that they could not confirm it doesn’t mean that i don’t have it! Got it?
        So that does leave me with a terrible fam history and the rest..
        fighting the unknown enemy. That really is a tough one. It is really hard to come to terms with something like this. It is like the sword of Damocles hanging above my head…
        My own theory is that i definitely inherited something…

      • AliciaB
        Oct 03, 2015 @ 10:07:08

        Marie I’m so sorry it took so long to answer you! Anyhow, have they given you a drug challenge? They administer a sodium channel blocker and if your ECG gets really bad , it helps confirm diagnosis. Do you have an ICD?

      • Anonymous
        Oct 03, 2015 @ 11:41:12

        Hi Alicia,

        Yes I had a drug challenge ( ajmaline ) and it was negative…
        They could not believe that as they where convinced that it would be positive…
        So , no ICD…since the Dr’s consider me not a high risk case….

      • AliciaB
        Oct 03, 2015 @ 12:23:52

        Well that’s very promising that is was negative. Brugada is a defect and malfunction of the sodium channel. Usually a sodium channel blocker would always make problems much worse. So they assume if you didn’t react to ajmaline, your sodium channels must be functioning correctly. Have you ever emailed one of the Brugada brothers? You can scan and email an ECG and ask them questions…

  5. Anonymous
    Sep 28, 2015 @ 09:07:07

    Hi Alicia

    Reply

  6. carla
    Sep 28, 2015 @ 04:55:45

    ciao Alicia, sono Carla, la mamma italiana …so che e’ difficile con traduttore parlare con te ma ci tengo a dirti di cercare il professor Pappone in italia. studio rivoluzionario su sindrome di brugada , pare ci sia una cura ,,,,,io sto aspettando contatti per portare mio figlio. fammi sapere se ricevi questa mail. forse la stada e’ ancora molto lunga e difficile ma almeno ora c’e’ una strada e una nuova speranza. fammi sapere cosa ne pensi. un abbraccio.
    Carla.

    Reply

    • AliciaB
      Sep 28, 2015 @ 13:00:34

      Ciao Carla. Capisco un po Italian.Molto po! Doctors credono abalation è la possibile cura. Devono ricerca.Ma ho speranza per una cura e futuro migliore. Spero che tuo figlio e bene. Dio benedica! Pace!

      Reply

  7. Carolyn Thomas
    Sep 25, 2015 @ 09:47:21

    Such an important message, Alicia! No matter what the cardiac diagnosis, in fact, (whether it’s an “electrical” issue like yours or a “plumbing” issue like mine!) ALL heart patients before being discharged from hospital should be told that depression and anxiety are very common, and more importantly, that they are treatable and temporary when appropriate help is provided.

    Mayo Clinic cardiologists predict that up to 65% of patients who have experienced a significant cardiac event will experience debilitating mental health symptoms (all of which affect our longterm outcomes!) yet fewer that 10% will be appropriately identified and offered any real help. So the vast majority live in quiet desperation, trying to cope while feeling like they’re going crazy.

    Personally, I found that talk therapy with a professional counsellor literally saved my life. I believe that all heart patients should be offered a number of follow up counselling appointments after hospital discharge as the reality begins to sink in. I’ve written a lot about cardiovascular disease and mental health issues, as well as this post about “hypervigilance” (that horrible sense you mention when you’re living with the chilling fear that something bad is about to happen any minute now): http://myheartsisters.org/2014/06/22/hypervigilance/

    This post quotes studies that actually remind us that this physiological response of hypervigilance is a useful biological response – it’s basically meant to help increase humans’ odds of survival by enabling the brain to perceive potential threats before they hurt us. Trouble is, this “normal” response is useful if we’re out in the woods being stalked by a wolf, but damaging if we’re safe at home but obsessed with our hearts!

    Best of luck to you…
    C.

    Reply

    • AliciaB
      Sep 25, 2015 @ 10:11:52

      Let me go read your article. Your such a great help Carolyn and so right!! Hyper vigilant to the point that we can ruin our own lives…

      Reply

  8. Ryan Deckert
    Sep 25, 2015 @ 09:08:48

    Alicia,
    I must reiterate, I cherish the thoughts, feelings, and emotions you share most due in part to the fact that nearly all of what you say I too feel. I am a writer of sorts, so words have never been an issue for me, in any capacity. Brugada has been my kryptonite, however, making it nearly impossible to formulate my thoughts and emotions. Instead of writing something like you, I feel I’m more like THSKXNFJSKDDMSK!!,.?@$)

    Regardless, mental health definitely plays a part here. One could make themselves sick with worry over the what ifs and imaginations or dreaded possibilities. Thank you for your post and for continuing to help through your shared feelings

    Reply

    • AliciaB
      Sep 25, 2015 @ 09:15:48

      Ryan I love your articulation. I wish I can talk as fancy as you lol! I rarely pay attention to my words on paper but whats in my head I manage to get out. So many people have said I speak for them, I read their minds and get it out on paper for them. And I love that! I love that whatever I write, Im speaking for all of us. We are a community and our voices should be heard but many are afraid to speak or simply cant. Im happy to help with that.

      Reply

  9. Charlotte
    Sep 25, 2015 @ 08:03:43

    Hi Alicia, as always you have hit the nail on the head. I felt the same. I’m in Britain and wasn’t offered any support for my mental health. Everything I have clawed back in terms of sanity has had to be done on my own. Sleep evaded me for some time after diagnosis. I was too scared that I wouldn’t wake up. I stopped being able to function properly. It was only when I went on a trip to Africa which I had planned before diagnosis and a few days into the trip, I realised for the first time, I hadn’t thought about the diagnosis or what it meant for a day. Just one day, but that was the start of a breakthrough. Sometimes, sleep still evades me but with time I have been able to start functioning again. I still get scared. Scared I shouldn’t exercise too much. Scared if I go away somewhere remote and something happens, I’ll be too far away from good medical help. I certainly would have welcomed more support than being handed a booklet about numerous heart conditions and being told to come back in 3 months and later, a year. I don’t blame the doctors I’ve seen, they have all been great but I do think the system in the UK is flawed. Sorry, I have commented on posts before so I do hope I haven’t repeated myself too much here!

    Reply

    • AliciaB
      Sep 25, 2015 @ 08:13:59

      Hi Charlotte!! You’ve hit the nail on the head as well…it’s a major break through when you have a day you don’t think about it! It does happen littler by little. There will be a day or even several days in a row I don’t think about it or let it bother me. Then I swing back the other way and start noticing again and with that, the anxiety is back. But its a stepping stone. Eventually we will stop thinking as much. I don’t think we will ever get to a point where we stop thinking all togther, but some days of shutting the mind off, are better then none 🙂

      Reply

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