Brugada syndrome, a slow poison!

[heartbt]

Lost a real version of me ! My heart is trying something different when I try to get some sleep. Happens most often while i'm in sleep . The condition was diagnosed in 2018. What is the use of loop recorder here. Pandemic made it worse. Electrophysiology made it so bad , now I cant even walk or exercise with pain getting severe in my groin and legs.

[Midnight21]

Hi....I was diagnosed 13 yrs ago with Brugada and have an ICD which at first scared the life out of me. After a while you accept what you’ve got and get back your life! I’m 73 now and active and otherwise quite fit. I find I’m awakened in the night always around 3am and my heart is beating very fast and I feel breathless. I put my earphones in and put the radio on as a distraction and lie quietly and do deep breathing ......in through the nose counting to 5 and out through the mouth counting to 5 . It helps and eventually slows to normal. I’ve never experienced leg pain withBrugada although at the moment have very bad groin pain ,but unrelated.....it’s arthritic hip and I’m awaiting a replacement. Try distracting yourself from worrying so much. I do gardening or go for a drive .Dont live your life through Brugada ....make it fit in with your life.

[heartbt in reply to Midnight21]

Glad to see few positives out of my negatives!. Thank you. I'm trying my best to be calm and composed but sleeplessness makes me to go out of the boundary. Before the diagnosis of this condition I go to sleep in count of 30 seconds but its the not the same since 2018. Palpitations and chest pain kicks me out of bed in the midnight. I hug my pillows so tight, which has become a new normal way of living. Sometimes I sleep in few mins and many days I will be awake until early mornings. I will be still sitting in bed trying to sleep for some time. Pain in my groin lasts since April 2020 post Electrophysiology procedure. Pain spreads all the way to legs. Unable to walk or exercise as normal as it hurts so badly. Could not make any appointment with cardiologist due to the covid-19 pandemic. Trouble sums up!

[Midnight21 in reply to heartbt]

Hi....glad to hear that you can see the positives.!....that’s progress. Now....for your sleeplessness ,I think a huge part of it is probably anxiety. I have dreadful disturbed sleep. When you have a bad night, get up,make a hot drink ,have a little read or anything to occupy you until you feel drowsy, then go back to bed . Take some painkillers with your drink.I wouldn’t wait for a cardiology appointment ,either ,go and see your GP and have a good chat about all your concerns, including the sleep problem. I don’t know what your financial position is,but if you can afford to ,go privately for one meeting with your cardiologist to discuss your concerns. I’ve done that....it costs about £140 ....well worth it to put you out of your misery,and he/she may be able to give you something for your pain. Sometimes it’s just good to have a chat about your worries,with someone who understands. Brugada is a very nasty diagnosis to be given ,but always keep this thought in your mind......if you were in a room full of people ,you are the safest from the point of view that if your heart misbehaves, your ICD is your guardian angel! Everyone else is on their own. Please seek advice,either from your GP or Cardiologist ,it will ease your anxiety. I hope I’ve helped.

[lappalainennainen]

Hello, I'm sorry that you are having a hard time dealing with Brugada. It's not easy coping with health problems, and the pandemic hasn't helped the situation. I was diagnosed with Brugada three and a half years ago, and was fitted with an ICD on the day of the diagnosis. Just like Midnight21, I was really scared and anxious to begin with.

I also find that deep breathing helps with racing heart, and tends to calm me down when feeling anxious about something.

Other ways of coping that seem to work for me are trying to keep myself comfortably cool day and night, reducing the intake of caffeinated drinks (only herbal tea after 2 pm), and having a walk every day. Also I gave up alcoholic drinks (sob) at the time of the diagnosis as drinking seemed to give me symptoms too.

You are not alone. Hope you can have a little walk every day just to get out of house for a while. All the best and take care!

[heartbt in reply to lappalainennainen]

Thank you for the reply and suggestions. Yesterday I received a call from Cardiologist dept saying my appointment for 24 hrs observation is cancelled today and postponed to next month!. Can't express the disappointment after suffering months of pain and agony!. Psychology team is planning for sessions in the coming weeks to motivate patients like me. Hope the session helps in some ways.

[lappalainennainen in reply to heartbt]

I'm sorry that your appointment was cancelled. It's good to be open to any help that you can get to alleviate your symptoms. I'd have thought that they have some good ideas about relaxation techniques etc. that can take your mind off your health worries.Please stay in touch and tell how you're getting on.

[heartbt in reply to lappalainennainen]

I'm looking forward to see the cardiologist as the pain in my groin area spreads to thighs and legs. There is an acute pain and could not walk properly. As you have mentioned psychology sessions helps to pull me out of mental stress.

[Midnight21 in reply to lappalainennainen]

Hi I just want to say.....I sympathise with the one sacrifice you’ve made......”the abstinence from alcohol!” ....I used to have a small scotch every night as my “treat” but after a very bad episode of bigeminy whilst on a cruise for my birthday (and a few champagnes,AND scotch) I decided that it might be a good idea to give up (huge sobs) !!! My doctor once told me ,jokingly ,if it tastes good or you enjoy it.....no matter what it is .....it’s bad for you. We’re all DOOMED.

[lappalainennainen in reply to Midnight21]

Hahaa! Yes, it does seem like it sometimes. Episodes of bigeminy after an alcoholic drink really put me on the edge, and I'd do anything to avoid that feeling. I have compensated by having a few squares of chocolate at night. Not too dark and not too much as that also gives me symptoms....argh!

[heartbt in reply to Midnight21]

I agree as alcohol consumed in a large quantity in a short span of time makes this condition risky!. Last time when I consumed spirits was last Xmas!.

[Midnight21 in reply to heartbt]

I fel a drink coming on !!!!

[heartbt in reply to Midnight21]

Waiting for Santa's company!!

[Midnight21 in reply to heartbt]

Mince pie and carrots at the ready .....and don’t forget the “Bells“,!!

[heartbt in reply to Midnight21]

Indeed! Santa and Rudolph likes!!

[Midnight21 in reply to heartbt]

CHEERS,!