Brugada's syndrome

[pete275]

Hi all, I have recently, week and a half, been diagnosed with Brugada's and also have Prinzmetals Angina. Am feeling very anxious/upset. My consultant has refered me for an urgent sub-cutaneous ICD. Sounds odd but I really do not want one, but also know what not having one fitted means to my family. Anyone else with these thoughts. Pete

[Wodney1966]

That's what I've got a s icd it's like having a paramedic with me all time in case a have a cardiac arrest

[pete275 in reply to Wodney1966]

What was it like having it fitted and is it uncomfortable?

[Wodney1966 in reply to pete275]

It takes a bit of getting used to but now I don't even know it's there they are taking mine out though cause I need one with a pacemaker built in

[kel55 in reply to Wodney1966]

hi pete, please excuse me if im incorrect but l thought brugada was a form of prinzemetal only its a dysfunction and related to scloradermia and lupus rather than Microvascular or macrovascular disease (auto imune rather than chemical) it seems a vague area of definition?

[pete275 in reply to kel55]

Hi Kel55, as far as I know they are different but both are affected by sodium channel functioning.

[kel55 in reply to pete275]

A few years ago l came across a classification table that has been put forward, pitty it wasnt taken up:

Area1 MVD, Syndrom X

Area2 CAS, Prinzemetal

Area3 hormane diffiancy, menapause

Area4 dysfunction Allurgy

I assumed Brugada came under area 4. The table was shunned by by many patients who didnt like area 3 being on its own

Kaski in his book etal, c2015 said:

if you have area1 then you can have area2 as well but if you have area2 as a primary then you cannot have area1, So if your diagnosis stands its seems as if you can have area2 and 4 together?

I had a conversation with a lady from canada a while back whos doctor was looking at brugada because she was alurgic to aspirin and it may have been this that was setting vaso spasms off?

Please let me know as it develops that overall picture

[pete275 in reply to kel55]

Hi Kel, I really do not know about the areas you mention. I was originally diagnosed with Prinzmetals and then 4 years later with the Brugada's. I was due to have a scicd fitted but failed the screening. So yesterday I had a transvenous ICD fitted. am very sore and feel like I have been hit by a bus. From my understanding the prinzmetals is calcium channel and the brugada is sodium channel problems. I have been told that the meds for the angina are contraindicated for the Brugada's. As it is the angina that causes me the pain and discomfort i hope they can manage that for me.

[kel55 in reply to pete275]

It seems to be a canadian ilness with not much information coming out of there? One lady who l have spoken to said that her cardio thought it was aspirin that was setting the spasms off? I had a quick read up and it suggested that autoimune problems, like allergies could be one of the causes or it is more endothilia dysfunction rather than endothilia reaction ie too much Ca++ and too little NO++. thats was what l understand. If the 4 areas of this syndrome are 1. MVD/CSX 2. CAS/PA 3. Hormoanal and 4. Endothilia dysfunction then surely Brugada fits there?

One of the problems lm coming across on a regular basis is the not knowing which is the coverall condition and which are the conditions/diseases, in my opinion some of the head ponchoes are deliberately cocking the terminology up for their own benefit, power and glory = financial comfort. this playing with words doesnt help us who suffer.

do you know anyone outside canada that is being diagnosed with this? thats not saying it not bonefidie but an observation. l have recently read an open letter from a japanese MD to the American society of cardiologists (thanks to the original poster) were they basically say that they are not doing enough in this area and that they are behind the times?

If hes saying this to them weres this leave us brits?

have youheard that l am trying to organise an infomation website, not a forum, to give us a chance of understanding ourselves. lm waiting for a senior player to come forward as an advisor, I would love to stop this speculation of is it this or that and yes to stop the play on words for self gratification. same principle is the celeb chief who recently said he was making jerk rice until he was asked 'how do you BBQ rice? he now says jerk spice flavoured rice

[pete275 in reply to kel55]

Hi again, where in the UK are you based? I have found my consultant Dr Field in Essex to be really helpful. He directed me to several studies but the most pertinent is the MADIT CRT study. What he has said is that there is a lot more work needed to fully understand what is a rare condition. Another study I have looked at, but please accept that I do not fully understand them, is Outcomes of Brugada Syndrome Patients with Coronary Artery Vasospasm cited in Intern Med. 2017 Jan 15; 56(2): 129–135.

One thing I do know is that I feel very differently now that the ICD has been fitted. I am still a little anxious but I know that is to be expected. (I was a mental health nurse for 20 years). But as others have said, the reassurance factor of having the ICD far outweighs the pain, discomfort and the loss of a number of activities I used to enjoy. I just hope that I will be able to get back to things with engines, cars and motorbikes, as these are my passion. I am very interested in your idea of a website but isn't that what the Arrythmia Assoc is for? All the best. Pete.

[kel55 in reply to pete275]

hi, im in the west midlands. l think l may be heading the way of ICD, since May l have started to black out with a good vascular spasms, on a weekly basis. l havent gone out completely every time. Sometimes its just for a second or two but in May we estimate it was for a couple of min and then a couple of min coming round and they couldnt get a bp or pulse 30 min later. l still think lm in the getting over it stage. my local cardiologists are baffled but my cardiologist professor peter collins thinks it is VasoVagal Syncope bought on by vasospasm as he calls it. it seems they are more interested in whether l had some kind of arithmia between the vasospasm and the vasovagal syncope?

I dont think collins likes the idea of an ICD because I think he thinks that it revolves around the vasospasm ie when it comes off then all is fine again, ive read both sides of the arguement with more in favour than not.

It really is a confussing area