diagnosed a few days ago

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diagnosed a few days ago

Postby nexus123 » Sun Aug 09, 2015 8:07 am

Hi,

I'm a 28 year old from New Zealand. On Wednesday last week I developed a fever and headache -went to the doctor and was given antibiotics & paracetamol. I had Wednesday and Thursday off work. However, on Thursday I woke up in the night with my heart beating fast and when I got up I felt dizzy and had chest pain. I know something wasn't right so drove to the Emergency Department at 1:30am in the morning. I have never done this before - I've visited others in hospital before but have never have been a patient myself. I thought I might have meningitis which is why I went.

They did an ECG which came back abnormal and then asked if anyone in my family had suddenly died at a young age which I replied 'not that I know of'. The doctor then told me that I was showing a sign of brugada syndrome on my ECG, either that or I had had an acute heart attack. Neither of those options sounded particularly appealing! They also took my temperature and I was surprised that it was normal as I had woken up feverish however I had taken a couple of paracetamol before leaving for the ED.

I was then admitted to the cardiac ward where they did further ECGs and blood tests. They did 3 ECGs in total and each one showed the same thing - brugada. The bloods and chest x ray came back - no heart attack or structural damage. By this time my brother and mother were there which was good. A cardiologist came to talk to me with a couple more standing round taking notes. He explained that fever can unmask brugada and said that this was an incidental finding and that the chest pain I had was not related to brugada. He also talked about genetic testing and then cascade testing for the family. He said even if they couldn't find the genetic mutations they look, I definitely had brugada based on my ECG. Once he explained brugada and sudden death I didn't know what to think. He suspected that because there was no family history of sudden death, that I might be the first in the line as the genetic mutation responsible has to start from somewhere. They gave me information on drugs to avoid and how I should always treat fevers aggressively with paracetamol.

After that, my mother and I had a meeting with the genetics counselor/nurse I think she was. She said that I was in the 'low risk' category because I don't have a family history of sudden death or history of fainting and that I should go on living my life as normal. However, she showed me that my ECG showed classic brugada. I was then discharged.

Now that I've had a few days to process all this information I have some questions I wished I had asked:
Do I have type 1 brugada?
I was told by the cardiologist that the risks outweigh the benefits of having an ICD implanted. However what I want to know is are there any other options? Is there something I could buy which would monitor my heart and I don't know set off an alarm or something when my heart rhythm was going funny? Even for a bit of peace of mind this would be worth it. I was actually scared to go to bed last night as they info they gave me said this usually strikes at night in your sleep.
Do I need to have a further ECG?
Should I pay some money and see a cardiologist privately?
How do I know when I should go to the hospital? I felt dizzy yesterday but this might have just been psychological.

I spoke to the cardiologist for about 10 minutes. They are going to arrange a family meeting at the hospital but that probably wont be for another 6 months as it will take between 3 to 6 months to get my genetics test done - I think they said they send it to the UK. Then they can test the rest of family if they want and also do the ajmaline challenge for my family.

My mum was saying that it was a condition just like asthma or diabetes. However, I feel differently - I don't mean to discount other life-threatening conditions - however currently I feel as there is not much I can do. Please someone correct me if I'm wrong. For example, a diabetic can monitor there blood sugar levels and take insulin and an asthmatic can carry an inhaler.
Last edited by nexus123 on Fri Aug 28, 2015 1:22 am, edited 1 time in total.
nexus123
 
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Re: diagnosed a few days ago and scared

Postby Chas » Mon Aug 10, 2015 4:59 pm

Hi, and welcome to the forum and the "low risk club".

Unfortunately there is very little that can be done for those of us considered to be at " low risk" other than avoid drugs and fevers as far as possible.(see http://www.brugadadrugs.org). It would be worth having a medical alert bracelet or similar in the hope that it would avoid being given the wrong drugs if you were ever found unconscious. You could also consider buying an external defibrillator but this would need someone available willing and able to use it on you.

I did not think that family history was considered to be a good indicator of risk. The only sure indicator of increase risk is to have a documented arrhythmia event. On this basis we are all low risk until we have an event. Some doctors think that an EP study can help predict risk but other studies have shown no correlation with risk and it has gone out of favour. It appears that doctors are now more reluctant to fit AIDs. With more people being diagnosed, there is more evidence that many people do not need them and I would expect costs to have an influence?

I agree that BrS is not like diabetes etc but it does have one up side, i.e. provided you do not have an attack it has no affect one your general health.

Please remember that we are not doctors on this forum so be sure to check any opinions with your doctors. It is always worthwhile trying to get the opinion of a doctor who has wide experience with BrS if you can find one.
Chas
 
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Re: diagnosed a few days ago and scared

Postby nexus123 » Mon Aug 10, 2015 9:45 pm

Hi Chas, thanks for your response. Looking at my original post I think I just freaked out - now I'm thinking more clearly. Point taken and apologies for asking for medical advice on the support forum.

I'm of 2 mind about it all. On the one hand, ignorance is bliss but on the other I am thankful for knowing as now I know what drugs to avoid and that I should manage fevers and take these seriously. I was actually taking one of the drugs on the probably should avoid list - 'doxepin' at a low dose as a sleep aid. From the doctors advice I've stopped taking this. So something good has come out of it all.

As you mentioned I have ordered a medic alert bracelet. I think I will see a cardiologist privately as well - probably can't hurt, except my wallet.
nexus123
 
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Re: diagnosed a few days ago and scared

Postby Chas » Tue Aug 11, 2015 5:43 pm

Hi,

No problem in asking for advice and opinions, just so long as you remember we are not doctors. That said many doctors have little or no knowledge of BrS so a well read patient can know better than some doctors. It is always worth seaking out a doctor who has experience of several patient. The more you read about BrS, the more obvious it becomes that even the "experts " have differences of opinion and approach, so it is good to find out as much as you can from all sources and be ready to ask questions of your doctor.

It is natural to be a bit freaked out at first, so I would suggest a bit of research and time before deciding what will be best for you and your family.
Chas
 
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Location: UK

Re: diagnosed a few days ago and scared

Postby nexus123 » Tue Aug 11, 2015 11:21 pm

I went to the doctor yesterday and I see what you mean about doctors having little or know knowledge of BrS - he had to google it. However the doctor was good he gave me an ECG. The ECG still came back abnormal and even I could see the ST elevation on leads V1, V2 and V3 - type 1. The thing is my fever has long since gone. Haven't had a fever since last week yet my ECG still hasn't gone back to normal.

I spoke to a nurse at cardiology on the phone this morning and she said this is not cause for concern and that my ECG may always have the brugada pattern. Does anyone also have a persistent brugada ECG not just when they have a fever? I really want to get a second opinion because I've just watched a YouTube lecture video by Josep Brugada where Josep described how the title of their initial paper Brugada Syndrome was incorrect in the part where it said "persistent ST segment elevation" he said this was definitely not (the case) as almost everybody has a normalization on their follow up.
nexus123
 
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Re: diagnosed a few days ago and scared

Postby Keeptikin » Sat Oct 31, 2015 8:06 pm

nexus123 wrote:
> I went to the doctor yesterday and I see what you mean about doctors having
> little or know knowledge of BrS - he had to google it. However the doctor
> was good he gave me an ECG. The ECG still came back abnormal and even I
> could see the ST elevation on leads V1, V2 and V3 - type 1. The thing is my
> fever has long since gone. Haven't had a fever since last week yet my ECG
> still hasn't gone back to normal.
>
> I spoke to a nurse at cardiology on the phone this morning and she said
> this is not cause for concern and that my ECG may always have the brugada
> pattern. Does anyone also have a persistent brugada ECG not just when they
> have a fever? I really want to get a second opinion because I've just
> watched a YouTube lecture video by Josep Brugada where Josep described how
> the title of their initial paper Brugada Syndrome was incorrect in the part
> where it said "persistent ST segment elevation" he said this was
> definitely not (the case) as almost everybody has a normalization on their
> follow up.
Hi, you replied to my post but only just seen it. In my case I too have a Brugada ECG all the time. I was considered low risk as like you I have no symptoms, however, what also shows up on my ECG are what the doctor calls Fragmentations. These are tiny spikes hardly noticeable caused by tiny scarring to the heart muscle caused by Brugada. Because of the my doctor felt I was just over the line in terms of risk. I have my ICD fitted on the 8th of December. I am from the UK and am under a fantastic doctor called Dr Behr who is a leading expert on inherited heart conditions. I do sympathise with your position and up until reading your post I wasn't convinced having an ICD was necessary however looking at things from your perspective has made me think I am luck to be having one fitted in that at least I know if my heart did stop I would get a jolt and off I go again. My wife worries more than me and it is hard for her because she feels the need to poke me in the ribs during the night if she can't hear me breathing. I wish you all the very best and please if you want to get in touch by email please just reply with your email address and I will get in touch. Kind regards Trev.
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Re: diagnosed a few days ago

Postby nexus123 » Mon Nov 30, 2015 6:19 pm

Hi Trev. I've read how QRS fragmentation is a risk marker. However, from what you have described you don't currently meet the 2013 expert consensus recommendations for ICD implantation. The guidelines I'm referring to are 'HRS/EHRA/APHRS Expert Consensus Statement on the Diagnosis and Management of Patients with Inherited Primary Arrhythmia Syndromes'. Priori et al., Heart Rhythm Vol 10 No12, December 2013.

Basically ICD implantation is recommended in BrS patients who are either survivors of cardiac arrest and/or have documented spontaneous sustained Ventricular Tachycardia (VT) with or without syncope (i.e. fainting). ICD implantation may be considered in patients with a diagnosis of BrS who develop VF during programmed electrical stimulation (inducible patients). However, the usefulness of programmed electrical stimulation has been challenged in more recent studies and is being debated by some of the experts.

If you get a chance to read this post before your ICD fitting in a weeks' time I personally would get a second opinion from another electrophysiologist before getting an ICD fitted. If you do get one fitted, I really hope that everything goes well for you. Getting an ICD is a major decision with the main risk being inappropriate shocks which can weaken the heart over time. On the other it may just save your life one day. But this isn't always the case either.

In my situation, I did end up going privately to an electrophysiologist - they did another ECG which still showed the Brugada type 1 pattern although he did say that it did not look as dramatic as the ECGs from when I was in hospital when I had a fever. He wasn't too concerned about my situation and said I had a less than 1% chance per year of having an event. I've done some research and for asymptotic spontaneous type 1 Brugada patients the risk in one large study using the FINGER registry was 0.8% per year of having a lethal or near lethal cardiac event. In saying that, this would mean there is an 8% risk over the next 10 years based on this study. The EP cardiologist did say he could implant a Linq recorder which is a very small cardiac monitor which records a single lead ECG and has a battery which lasts about 3 years. It's used as a diagnostic tool for arrhythmia. Apparently it takes only a few minutes to implant under the skin and is a very low risk procedure. About a quarter of patients with BrS will develop Atrial Fibrillation (AF) and a cardiac monitor such as the linq recorder would diagnose this as well as other types of arrhythmia.

However it costs a bit of money (but nowhere near as much as getting an ICD). The EP doctor said that he would be happy to implant a linq recorder however he said if he was in my shoes he wouldn't have one given my situation. I'm going to wait a while because I'm still under 30 years old then reconsider. I asked the doctor if there was QRS fragmentation on any of my ECGs and he said there was none. In the meantime I've spent some money and bought an AED as well as a medic watch where I can push a button on it anytime and it will call an ambulance to my house. I pay about $20 a week to have this service. I know that neither of these things may actually not protect me but it has given me some peace of mind.

There is some exciting research on using ablation to treat Brugada and think this therapy might be available to us in the future. All the best!
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