Hand hold? Amjaline challenge/Brugada ,shitting myself !!

[WatcherOfTheNight]

Myself & DH are due to go in tomorrow for the Amjaline test & my anxiety is through the roof .
I'm so worried about something happening to me during the test & that my Ds will lose his mum as well as his sister .

I'm also worried that it will show that I carry this Brugada gene ,meaning I passed on the defect that killed my beautiful DD.

I want to cancel(again) ,I don't think I can go through with it .
Talk some some sense into me please !!

Hi I hadn't heard of this before but it sounds like it's essential you get diagnosed and it can then be treated with a device like a pacemaker. So don't put it off.

I didn't know what this was so I googled it, and on an NHS page about the challenge it said ' no cases of death have ever been reported as a result of an Ajmaline challenge worldwide'.

www.ouh.nhs.uk/patient-guide/leaflets/files/101230ajmaline.pdf

With regards to your dd if you did pass on the gene it would be a tragic accident and in no way your fault, as you had no way of knowing.

Thank you so much for replying, @Wenttoseainasieve Thank you for the link,I have avoided google as I don't want to find anything else to worry about .

@XmasPostmanBos ,you are right ,I know we do have to have it . I've had DM here on the weekend reading me the riot act about it.
My anxiety is terrible at the moment so I know I'm probably not seeing things as clearly as I should .
My DSis says that too about the gene ,but I blame myself anyway so if I'm carrying the gene it would just add to it .

You poor thing...I’d be terrified too.

You won’t die. No one ever has so you won’t.

Your heart has never been safer than it will be for those minutes of the test. At no other time will you be in a room with cardiologists and cutting edge technology all geared up to keeping you safe. The reality is, your heart will be less at risk of finishing you off during the test than it is right now - the slightest blip and they’ll deal with it, because they can. If everyone who had an arrythmia or cardiac event was in a room with cardiologists and a machine, no one would die of them.

You’ll be safe & you will not die.

If you do discover that you carry the gene then you’ll need counselling to help you understand that you are in no way to blame for the death of your lovely daughter...because you’re not, biology is.

Good luck & come back when it’s all over to tell us how it went.

Thank you @TwitToWoo ,you have a wonderful way with words & you are right.
I will keep reading your post until it sinks in !

Thankfully our test is in the morning so no hours of hanging around .
Also we've met the cardiac team a number of times for our previous tests ,they know our circumstances & have been very kind & understanding.

I am hoping this will be the last of the scary tests ,blood etc I can handle .

I'm trying to keep busy & control the anxiety but it's not helping .
I've smoked today too
I would love to hear from anyone who's had this test ,I'm not good with the unknown at the best of times .

I'm getting on my own nerves worrying about everything ....leaving the dogs on their own ,Ds & the issues in school as he won't be able to get hold of me ...will DFIL remember to feed the cat ? I'm giving myself palpitations.

Tell me a joke or a funny story , please ?

I had the Ajmaline test just before Christmas, and my Mum actually had hers today. We were both negative.

I lost my brother a few months ago.

The test wasn't too bad. The Ajmaline made me feel weird, the worst bit for me was double vision. But the cardiologist stayed by my side throughout which was reassuring.

I hope you get the answers you need. We are still searching.

Thank you for replying,I'm so sorry to hear about your brother @KittenKaboodal ,it's just awful .for you & your DM.
It changes everything doesn't it.

My Dd was 22, Ds is not old enough to be tested so I know we must have it ,if only for his sake.
They've said be prepared that we may not get answers,we've had none for the last 16 months & now I don't know how I feel either way .

If you don't mind me asking ,they give you results after the test ? It doesn't say on our appt letters .

Scrap that ,I just saw they said negative,I replied a bit hastily & my heads all over the place.
I'm assuming you've had the same protocol as us with Ajmaline being the last test .

Yes, we got the results the same day as soon as they finished the test.

My brother died suddenly, he was found dead at home. Post Mortem was inconclusive really. They can only really say that he died from a seizure. But they didn't keep any material for genetic testing.

I learnt about ion channelopathies at university and after speaking to a lecturer at uni we approached our GP. My mum and I both have a long history of fainting/blackouts, my brother had a couple of episodes in the few months before he died.

So far I've had a stress test, Ajmaline and regular ecg. Apparently the next step is to be fitted with a loop recorder.

It's frustrating. I want answers and I want to know that my children aren't at risk.

Same here ,I need to know Ds will be ok ,I'm worried sick about him.
My Dd also died suddenly at home,she was home from university & I went in wondering why she wasn't up yet ,I found her on the floor in her bedroom. I'll never get over it.

We've had the tests you've mentioned but also had heart ultrasounds .

Were you kept informed by the coroner ? Did they put you in touch with CRY? They are supposed to but we weren't .
I contacted them after finding out about them online .
They do their own extensive research and are very supportive & helpful after sudden deaths .

It was a few days before my brother was found as he lived alone. Yes, we were kept updated by the coroner. It took ages for the toxicology screen, but once they were satisfied that was negative they were just like it was a seizure end of. I don't think they were that interested in determining the actual cause of death.

My Mum and Dad had echocardiograms too. But I've not, although I did have one a few years back so maybe that's why.

I've not been in contact with CRY although we have seen a nurse that specialises in cardiac family history.

Watcher I have no experience so am giving you a gentle arm squeeze. Unmumsnetty kiss too xx

Thank you so much @FlibbertyGiblets ,I will take all the hugs & kisses I can get right now

Kitten have a look when you feel up to it as CRY also provide telephone counselling ,free screening for older children and tests at specialist hospitals if yours isn't one on the list they recommend.

They are also funding extensive studies into hidden cardiac conditions & trying to get the government to admit that there are many more deaths to these conditions than are recorded .

Their pathologist is the world leader in this field if you have any concerns about the coroners report as we do.

Watcher - sincere condolences for the loss of your precious DD. I hope one day that you will find peace with the fact that gene carrier or not, you are not responsible.

If possible, being a dependable sort, (as you are for we nocturnals here on MN), I would come and be your wingwoman tomorrow for dogs, ds and cat. I think all will be well without yours truly though, because it's just one day, and dogs, ds and cat will survive, or at least just about until you're back on duty to pick up the pieces later on!

I think this is one of those situations where you have to feel the fear and do it anyway. Easier said than done, but it's essential, so what choice do you have? If you put it off, you're just prolonging the agony for yourself and the family, and you'll have to go through all this pretest worry yet again. I think you'll feel better with it behind you than in front of you.

The worst has already happened to you with the loss of your precious DD, and you also mention issues with your ds, so I suspect you are no stranger to big girl pants. Hoik them up tomorrow, as high as you can manage, and get it over with.

Your mantra has to be: the test is essential and the test is safe.

Oh, and drink tea - keep off the fags.

Thank you @WatcherOfTheNight we are quite lucky that our local hospital happens to be one of the leading hospitals in the country for its cardiac unit, particularly electrophysiology.

Out of all the medical tests I've ever had the Ajmaline was the one I was I felt the most fear around. Actually the test itself was not bad at all, I didn't feel great but it wasn't as horrendous as my mind had built it up to be.

I realised afterwards I probably wasn't scared of the test itself but the result and what the results might mean.

Do you know for certain your daughter had Brugada? Or are they just going through the list of ion channelopathies? But yes, whatever happens tomorrow you are not to blame.

That is how I feel kitten ,I'm petrified of the unknown yet scared also to know & I don't know which I'm more frightened of.
If it is Brugada I know what that might mean but if it's not how can I ever believe Ds will be ok ?
It's a mess,I'm a mess ,I need to find a way through this somehow.

We don't know if DD had Brugada,the coroner said her heart was structurally normal .
She was a fit ,active,healthy girl,no forewarnings or anything to suggest anything like this . Now of course ,we know that's what happens.

On her death certificate,they've said she died of natural causes,I find that so difficult to accept,it's not natural at all .

@BBInGinDrinking ,thank you for such lovely comforting words,you have made me smile
And yes ,I've got my big girl pants ready,they will be hoiked right up ,ready to do this & get it over with finally ....without the fags !

You are right ,I have been prolonging the agony,worrying myself sick each time then cancelling it . I do feel better after hearing from kitten though ,it's really helped knowing what to expect & that she felt nervous too.

Morning, Watcher

Just checking in to see if I need to trundle over with my pant hoiking machinery this morning, or whether you've got it covered?! Think something invented by Wallace and Gromit - a lot of whirring and clunking.

Thinking of you. Keep your chins up today, lass.

Good luck today, get it done! Then have your favourite treats to cheer you up for me it would be a big cake

@WatcherOfTheNight - my partner had this test last year. She's since also had an EP study.
The test showed she had brugada on an ECG and then had an EP study to try and push her into a dodgy rhythm which didn't happen despite them making her heart race at 300bpm and dropping it to 40bpm.
She said the worst thing about the ajamaline test is that it makes you feel like you're weeing yourself!! They have you all connected up to machines - it's a VERY controlled environment.
I'm so sorry about your daughter.

Morning all ,thank you so much for the words of comfort & positivity ,still bricking it but want to get it over with now .
One less thing to worry about !

BB yes the big ,big girl pants are hoiked right up ,heavy lifting machinery might've come in handy !!

Xmas yes it will be cake ! Always cake

Blue thank you for telling me your Dps experience,I don't know anyone who's had this so it is good to read of others who have been through it .
I hope your Dp is doing well ? I won't ask any more until after the test .

I will come back later & let you all know how we got on x

Will be thinking of you today, Watcher.

x

Thinking of you