Sudden Cardiac Arrest & Heart Attack
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Brugada Syndrome & Hayfever

I was just wondering whether anyone else on here suffered with Brugada Syndrome & Hayfever?

My husband was only diagnosed with Brugada last sept after collapsing in aug, his had a s-icd fitted.

But obviously with Brugada comes a long long long list of drugs to avoid which includes antihistamines....I was hoping someone could recommend a ‘safe’ antihistamine we could get to make our outdoor lifestyle more bare able this Hayfever season

Thanks in advance

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Basically most over the counter drugs are a no no! l have Microvascular disease with prinzemetal and raynauds. we can have Robbie Tussin cough medican as it is not a vasoconstrictor, it helps a bit. Last night l just came down stairs and drank coffee all night. Caffine and morphine we can have dont let others tell you different, they arenot in this situation

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We’ve discovered this & were cautious when the Drs prescribed antibiotics for his scar infection.

We treated colds with paracetamol & lemon ginger tea with manukau honey over winter, but can’t find an alternative Hayfever option & his literally unbearable to be around as he doesn’t do hot weather either....summer is such a joy with my husband 🙈🙈

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I always ask to talk to the pharmasist, sometimes they say sorry! just paracetamol. I have got to go and get some Robbie Tussin today but again l will check with the pharmasist. it helps with the tickley nose and throat. I try to make things fit around me like my drugs, 10/11 at night and morning so l can have a beer at about 6pm

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have they found out what hes alergic to?

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I’m looking into ‘food reliefs’ because the pharmacist & Drs will always go with ‘should be ok’ which isn’t really something you want to trust when it comes down to the fact you have a booklet of over 300 drugs you can’t take...all in pharmaceutical names not names we know things by.

Until he collapsed last year he literally has never bothered with drs and his Hayfever is always worse when we’re enjoying the outdoors...even when he previously took antihistamines before his diagnosis they barely took the edge off.

His also not allowed to consume alcohol as that’s also a trigger factor...

It’s all fun & games here

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All in moderation. l only heard of Brugada syndrome a few weeks ago because someone l talk to maybe having this as her diagnosis rather than Microvascular disease and vascular spasms. they think hers is an allergy to aspirin? no matter how they are caused vascular spasms are not nice, l have had 7 years of it!

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I personally have no problems with the 'it will be alright' to me thats danger! what are the other symptoms?

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Hi Sorry to hear your husband got diagnosed with BRUGADA. Also good to here an ICD in place. BRUGADA is a complicated problems with the electrical system. There is a lot of research going on at present. It is believed to have a strong genetic link (associated the SCN5A gene) and is inherited in an autosomal dominant manner. And there may be many other patients not yet discovered .some estimated of 70%!! Genetics will be the answer You should under no circumstances accept anecdotal evidence of any treatment except advise carefully though out by your electrophysologist. The triggers are documented but not fully understood. ANY advice should be qualified and double checked. Regards to your husband and wish him all the best

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He has under gone blood tests for genetic testing however won’t get any answers until Aug/sept...and even then apparently it could not be definitive.

We have tried looking into literally everything, a Drs at our local gp’s was like ‘over the counter stuff will be fine’ (didn’t believe him, the search continues), we don’t have a electrophysologist that we know of. We was speaking to an arrhythmia nurse before & after his surgery but haven’t heard from her since his wounds healed totally. We see a pacing nurse around January when they checked his s-icd but not due a follow up until possibly sept (we have the Home monitor system he ‘syncs’ to every Monday). His Hayfever has always been quite bad, even when he could take antihistamines, this year I’m trying to get him to go without but being outdoorsy his insufferable...so I need to find someone who is willing to help that has knowledge of Brugada & Hayfever.

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Hi Miss IBS you may find it helpful to research channelopathy which is what BRUGADA in essence is - a suspected channel disorder .

Good luck

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not quite true jamesgui2 it can be because ofmedication it may help if you researched better! you cannot say brugada in essance is and then say: a suspected channel disorder. suspected throws out your in essance? the op's question is about vasoconstrictors and vasodilators which MOST health perfessionals at this time know diddly squash about

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You obviously know what your talking about.

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Sorry I can't really understand your use of the nomenclature in relation to the topic ?

Maybe this may clear up the use of *suspected* as in BRUGADA.

I hope this qualifies the use of the term suspected in any phenotypes

Current diagnostic criteria for channelopathies had low sensitivity in our sample of patients and relatives carrying pathogenic mutations. This finding was more noticeable in the group of asymptomatic relatives, who showed very low penetrance, with a high prevalence of normal baseline ECGs. If channelopathy is suspected (IVF, unexplained sudden death or cardiogenic syncope with no apparent heart disease), the combined use of genetic and pharmacological tests in patients and relatives improves the diagnostic protocol's performance in detecting LQTS and BS in patients with a nondiagnostic baseline phenotype.

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this is how little you know! having just had a cardiac induced syncope with none blockage cardiac disease l can tell you clearly that it isnt what you say it is, there can be more than just two causes. I have Microvascular disease and vascular spasms. Brugada has the same symptoms. like mine there are NO clear pathology routes

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in fact part of MVD and CAS is thought to be endothelail dysfunction. basic info for you nitrate ions dilate calcium ions constrict. patasium ions aid nitrate pick up. so eat more banananas😁 'amines' tend to be constrictors eg antihistamine. decogestants tend to be constrictors so OtCD are in essance all no nos.

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on another note Brugada syndrome as been discussed as being part of MVD? please learn to research. this is now twice you have tried to one up me. please stop

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To be honest I'm have not got a clue what your MO is here . Case dismissed. Please refrain from making any contact with me in future with half baked faults and nonsense .

I will not respond to you again .Grow job and stop hijacking genuine people posts to discuss your own misgivings .Disgraceful !

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We have decided to test one of the ‘no drug’ Hayfever relief options (suitable for pregnant women, no mention of heart problems in leaflet or side affects) after a brief chat with arrhythmia nurse she thinks it’s worth trying and can’t see the harm (which is slightly reassuring in a way) if it doesn’t work she said to read leaflets in antihistamines and call her back with ‘possible safe options’ and we’ll discuss a plan of action....

I have decided that obviously no one else with Brugada suffers from allergies...as no one really knows a definite answer

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I think it was beltrain who came up with a way of cataloging these diseases but was discussed by kaski in a book published in 2016.

area/group 1. CSX, MVD, SVD

area/group 2. prinzemetal, CAS

area/group 3. hormonal

area/group 4. endothelial Dysfunction

james when you know nought shut up

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All the best of luck. I'm sure there are others with B.S. and hay fever. Only follow qualified professional advise on any treatments . Hope you find something safe to get some relief .

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Hi

Hope you and your husband are both keeping well. Both my children and I suffer from various allergies and food intolerances. In some cases severe.

My brother passed away in 2006 from suspected Brugada. I had the flecanaide test but they only found RBBB at the time. I am waiting to see specialist again as I had tachycardia events (possible torsade ses points and prolonged QT) after surgery this spring.

I have always tried to be careful with medications due to underlying suspicions. We use nettle tea. It's a mild antihistamin - takes about five-six days when normal antihistamines take 1-2days - but gives me and my boys sustained relief from hay-fever and eczema. Camomile is stronger, I tend to avoid as you may develop an allergy to it. We also use Piriton (chlorphenamine malate) for more severe reactions.

Then, as I am sure you will know better than me, there's all the actions such as not drying washing outside, using vaselin around your nose (to act as a pollen trap!), shower after school/work etc, etc.

I check medications against brugada.org as well as crediblemeds.org (for long qt syndrome)

Best wishes and good luck

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Sorry should be 'chlorphenamine maleate'

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PS completely agree with Jamesgui to check advice with qualified professionals before going forward. Take care x

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Qualified professionals don’t really want to offer a great deal of help....we have tried several...they obviously don’t want to commit to anything.

We have found loratadine (which is the lowest you can get) that seems to be ok for us...fingers crossed x

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Hi

Yes, we use loretadine (Clarity usually) as well. Piriton however will relieve a more acute reaction, if required.

Allergy advice is tricky to get through NHS - so few specialists and so many sufferers. I had to fight to get my children seen. But ended up with an excellent clinical dietician (our main issues are with food allergies and eczema) who taught me a lot. We have since had to become our own experts. Granted my husband is a clinical specialist nurse (in another field) and one of my parents is a retired hospital pharmacist, so we are not unfamiliar with medical literature and research. However it is a complex field (and I studied economics and law 😂) .

You may want to look into 'Oral Allergy Syndrome'. In essence certain foods (mainly proteins) may contribute to, and make the allergic reaction to a certain pollen temporarily more severe. For example birch pollen allergy may cross react with apples. For each pollen allergy, there is a list of foods that may interact with that particular pollen (=the allergic reaction to it). By excluding apples (for example) from the diet during birch pollen season, the birch pollen allergic person may suffer less severe reactions. Most people are then able to re-introduce the foods after the pollen season.

It is important to identify your allergies as it is kinder to our systems to avoid triggers rather than having to medicate. My pollen allergy (against which a well-meaning GP prescribed Beconase) turned out to be mold allergy. And it disappeared when we bought our first house - and left the rented accommodation which later turned out to have a long standing, but hidden, leak in the kitchen...

So when my children grew up, I insisted on allergy testing.

Best wishes

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That guys a maniac

There is a forum inspire.com there are different communities. a few under brugada but it is also worth looking under

WomenHeart Support Community

and then under understanding microvascular disease off the left hand side. I am on there under notwell but there are a few more with the same or similar. it may be a womens forum but they reluctantly accept men

One thing is true: be your own judge and jury and check things out before you accept them

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