Brugada Syndrome and Covid19

[RobertW213]

Hi there I’ve been diagnosed with Brugada Syndrome after having Covid19. I was I’ll and lost a month of my life. Now I’m adapting to having this problem and it’s quite scary. What does anyone know about Brugada Syndrome and do people live okay with it? Rob

[MichaelJH Heart Star]

Hello and welcome to the forum! My knowledge is more about the plumbing (hearts and valves) than the electrics. Brugada Syndrome is hereditary and caused by a faulty gene. It causes issues with the electrical signals causing arrhythmia. It can be fatal and is responsible for some sudden deaths young adults. Often it is asymptomatic until triggered by something like stress, excessive alcohol consumption and some prescribed medication. There are documented cases of it being triggered by a CovID infection as in your case.

The good thing is you are on the cardiac radar. Some people are fitted with ICDs.

Good luck and try not to worry!

[RobertW213 in reply to MichaelJH]

Thank you MichaelJH, it’s quite life changing I’ve been given colchine for the pericarditis. Told about lifestyle changes and told about appointment with my cardiologist which was July and now moved to September.

My GP has told me to get a blood pressure machine. Keep in touch and report any extreme irregularities. Which is quite scary. I just hope I get checked out soon.

Thank you for your post: it’s refreshing to hear from people who are aware of heart conditions and things as no one I know has anything like this.

[MichaelJH Heart Star in reply to RobertW213]

I would recommend the Omron M3 BP monitor. Besides measuring and, storing BP and HR it warns of an irregular heartbeat. Many GP use Omrons.

[Hidden in reply to RobertW213]

Hi Robert, sorry you’ve had this shock. I know how hard it is, not knowing anyone with similar issues. I’d suggest, persist with internet searches, because as well as here, there are many online patient forums. I used Ben’s Friends, & now Facebook groups.

I have a friend who has Brugada. She has known for about 2 yrs & is adapting & found she learned to accept it. I’d certainly say acceptance is really hard but is a great first step for finding your path.

Do you have post-covid pericarditis? In case no Dr’s knew enough about Peri to tell you, you need to rest almost constantly for several months (I’m taking it easy for 6m), and take your colchicine, as this should help prevent it becoming chronic. No exertion that takes HR over 100 (when I first came home, my HR was 130 going up the stairs; now I can walk 8km with average HR 105, so it does improve).

So with patience & a careful recovery, it should be possible to find a slightly adjusted life that’s still rich & doing many previous activities. I’ve been able to return to hiking (albeit reduced currently whilst I finish Peri recovery) after heart surgery for a birth defect last year. I often get anxious, or frustrated, but have found more patience & gratitude for what I do still have. Best wishes

[RobertW213 in reply to Hidden]

Hello TealGreen

It is post pericarditis I’ve managed to stay active but it hurts some times. I’ve not really reached out before but I’m a therapist/counsellor myself and my supervisor said it might be a good idea as I’m having akin to ptsd symptoms, with nightmares and things.

I just hope things get better.

Can honestly say it’s not been fun.

Warmest regards

Robert

[Hidden in reply to RobertW213]

Ah that’s tough. I had flashbacks for a while, I do agree there’s a medical type of ptsd, I certainly got stuck in fight/flight. Counselling helped me enormously, I’m a psychologist & coach and i saw that even if I can help others, that doesn’t mean I can necessarily do it for myself.

Things will get better I’m sure. No it’s not fun at all. My counsellor helped me integrate the good/bad that is serious illness (& life I suppose). Eg Whilst I’ve lost some confidence in my body’s capability, I’ve learned more patience than I ever thought possible! Hang in there.

[SarahJLD]

Being given a diagnosis out of the blue is frightening especially if you are given little information. Have you looked at the information/downloaded the Brugada from the BHF website? I found their info on the condition I’m diagnosed with clear and concise for both myself and family.

Have you got a cardiology follow up appointment?

I’ve never used the BHF nurse helpline but they may be able to answer some of your questions or may know if peer support.

[RobertW213 in reply to SarahJLD]

Thank you SarahJLD as well for your kind comments. I’m seeing my cardiologist in September. They want to test my heart and check with ECG. It’s not been a great experience at all. And I’m pretty scared tbh.

It’s nice that there is people out there aware of the condition to ask them about it

So thank you

[MichaelJH Heart Star in reply to SarahJLD]

The BHF nurses are very experienced and knowledgeable. It is well worth calling them. They are available 9:00 - 5:00 weekdays and 10:00 - 4:00 weekends.

[Brandibell]

Hi, Brugada syndrome is a genetic disorder that can causes a dangerous irregular heartbeat. In many cases, a defect in the SCN5A gene causes the genetic form of this condition. When this defect occurs, it may cause a ventricular arrhythmia. This is a type of irregular heartbeat. Basically faulty electrics. The thing to watch for is a temperature anything over 37.8 needs monitoring and paracetamol. It can cause SCA or SD syndrome. Treatment tends to be an ICD of some sort if you start fainting/dizziness etc..if not they tend to leave you to it. I am in the process of trying to get a diagnosis of this but Covid is stopping all my appointments at present. My electrics have been backfiring for years but unfortunately I have to have a heart scan of my structure beforehand. There is a Brugada support group on FB. It is Brugada diaries all information is on there and members from all over the world. It is rare. Take care.🤗

[Beverley25]

Hi rob I have brugada syndrome and I have ICD implanted I also have unstable angina but I am well I am breathless on times of exertion I use my gtn spray maybe 1 or 2 times a month my cholesterol level is under 5 but 2.9Is made up with bad cholesterol so I take 80mg statin but I'm under control how are you x

[Beverley25]

Just something else that may be helpful type in mayo clinic brugada some good info on there x