Brugada ... so scared

[Lucygrif]

Hi im new to all this , havnt had a diagnosis having test on the 31st , all started with a trip to the doctors for heart palpitations and now they think I may have brugada syndrome , my dad died when he was 28 from a cardiac arrest and im 25 with two small children , 3 months on I get palpitations every day , im so scared ...... does this effect your life after your diagnosis ? Thankyou

[Guy_Smiley]

Hey Lucy. Hopefully I can help a little! I've been diagnosed with Brugada a few years ago after my father died suddenly in his sleep aged 67. I've been placed as "low risk" due to many factors such as my heart rate is normal, I don't have a history of black-outs, etc and only show Brugada when forced.

I went to St Thomas' in London and the normal tests are Electro-CG and Echo-Cardiogram just to check normal heart function like wall thickness, size, etc. I'm normal with the exception of early repolarization (that can be an indictor of Brugada although I'm no expert at all!). I then had the Ajmaline test which is used when people don't show Brugada under normal circumstances. I don't know what tests you are going to have so please don't assume you will have this test. But they link you up to an ECG and then inject a drug called Ajmaline that forces the Brugada symptoms to show on your heart trace which they did with me. This used to be a direct definite Brugada diagnosis but is now downgraded as an "indicator" alongside other things like family history and your symptoms which are then scored to determine your treatment.

How has it affected my life since diagnosis?

Positive - at least I know! I can manage it through being very careful on my lifestyle - avoiding certain drugs (legal and illegal), being very careful with fevers (I take paracetamol every 4-hours and constantly when suffering from flu) and be very wary of dehydration through vomiting, etc. Because I am "low-risk" I haven't had an ICD fitted which is both good and bad for me.

Not so positive - I can't get life insurance now and my holiday insurance has increased massively. Without an ICD I worry I may be more at risk but I am reassured by my consultant that the risks from ICD outweigh the risk of me having a problem through Brugada.

But, in summary, for me being diagnosed is the main thing - at least then you know and can either change your life to suit (not massive at all) or have an ICD fitted which at least means you are protected.

There's nothing to worry about, you are due a test and the diagnosis either will reduce your worries as you will then get the treatment you need!

[luvmyself]

Hi Lucygrif I do realize you are already scared so this is not to scare you further but to provide you with information and my experiences.

I have been diagnosed with Brugada syndrome and was implanted with an ICD two years ago. I do have a history of syncope (black-outs, fainting, passing out) and heart palpitations since the age of 13 yo. I have had fainting spells throughout the years (not frequent) that went undiagnosed until two years ago when I was admitted to the hospital after one of my syncope episodes, I was unconscious and with fever of 105 degrees. Brugada was confirmed after the hospital conducted an EKG during this visit to the ER by ambulance. (I was not aware as I was unconscious).

To my knowledge no one else in my family has this specific genetic disorder. My mother had a triple by-pass due to heart attack in her early 60s and my paternal grandfather who was fitted with a pacemaker in his 70s.

Since the placement of the ICD I have not been required to take any additional medications other than my high blood pressure meds that I was taking for years prior. I have not had any syncope episodes nor has my ICD delivered a "shock" since implant.

Brugada diagnosis has not affected my life negatively. I have peace of mind now knowing what was wrong with me all those years before. I am required to follow up with my doctor for checkups every 6 months to make sure I am properly managing my condition.

Please try not to worry too much about your upcoming appointment.

Try not to be scared. Let us know how you are doing.

[Guy_Smiley in reply to luvmyself]

Hey there.

If you don't mind me asking - did you have any other tests or was it your black-outs and a positive trace on ECG that was your diagnosis?

Guessing you were not diagnosed via Ajmaline or similar?

Thanks

Guy

[luvmyself in reply to Guy_Smiley]

Hi Guy_Smiley you are correct. I did not have any additional tests. The ICD was placed based on my syncope history and the EKG results. I am not sure where you are. I am the US do you suppose the criteria for ICD placement is different?

[Hidden]

Have you seen the Arrhythmia Alliance Genetic Testing for Inherited Heart Conditions booklet which might help you understand some of the tests you are going for. You can download it from heartrhythmalliance.org/aa/...

We wish you luck for your appointment on 31st. If you have any questions or concerns, please do not hesitate to get in touch - [e-mail] or 01789867501

Regards

Rachel - Arrhythmia Alliance Patient Services Associate

[Lucygrif]

Thankyou both so much !! This has been an on going investigation since a few months ago for palpitations , but iv also had 2 black outs before and since the investigation , also been admitted to hospital for tachycardia... but all ecg results has come back ok except showing spouts of tachycardia & yes ill be having a ajmaline test aswell as having a loop recorder fitted underneath my skin the same day , im worried that ill have this condition and not have a ICD fitted , I lay in bed every night not wanting to fall asleep as im scared I wont wake up .... my biggest worry ... what if my kids got this too ... sorry for the essay & thank You for sharing your storys it really has helped x

[Guy_Smiley in reply to Lucygrif]

Hey Lucy,

Pleased to be of help, in a small way. Please do let us know how you get on. We're here for you.

I know exactly how you feel with sleep. I sometimes lay at night on the pillow and all I can hear is my heart in my ears and worry like mad about going to sleep just in case. The more you focus on it, the more spaced out you get. But shortly you will know and be reassured that if they suspect anything then you will get the ICD and that is your insurance policy! In some ways, I feel I should get one so that I am protected but I trust my consultant 100%. You will be looked after the same.

Not long now and you will be more informed and on your way to treatment. Whatever way it goes, you will feel reassured I'm sure and will be best placed to manage your condition or take out the ICD insurance!

I go to St Thomas' every year (in October) and am able to see my consultant, get my full check-up (just amazing people in there) and I leave confident that if I look after myself then my condition will not catch me out like it did my dear Dad. But then, I am low risk......but you only control the risk when you know the risk. So if they determine you have a higher risk then take their advice.

Get yourself diagnosed, take the right treatment and then continue to live your life!

I do!

xx