Arrhythmia Awareness

[butterflymum]

I noticed a few mums mentioning on another thread that they suffered from Arrhythmia. Hope you don't mind, but I thought it would be a good opportunity to let everyone know about an Arrhythmia Awareness Week being planned for 12th -18th May.

Details can be found here .

For those interested, why not contact your MP and have them write to the Minister responsible asking for the National Service Framework to include targets for the diagnosis and treatment of arrhythmias. Full details and sample letters are available from the above link.

butterfly

[zebra]

How do you know if you have it? What are the symptoms? My half-brothers have a very minor heart abnormality, but they are twins, & twins tend to have slightly more tweaked anatomy.

[expatkat]

zebra--usually you'll feel palpitations, skipped beats, or runs of fast heartbeat that come out of nowhere and then disappear again. Sometimes you'll feel breathless, faint, and sometimes you'll actually pass out. Sometimes it will be related to a slight heart defect (eg mitral valve prolapse) but sometimes they'll be no particular reason behind them. Caffeine can exacerbate some arrhythmias; alcohol others. I'm not exactly an expert, but I know a bit about them.

[zebra]

But what's a palpitation feel like? Does everyone else know these things?

[noddy5]

I have a thickening in the left side of my heart causing palpitations and dizziness.This is generally well controlled with medication but too much of anything can trigger it off eg alcohol coffee stress late nights.It is v scary but you learn to live with it.

[expatkat]

zebra, not everyone feels palpitations but most everyone apparently gets them at some time or another. I guess palpitations are defined by either sudden fast heart beats when your heart appears to race out of nowhere; or the sensation of skipped beats. It's a general term. I guess my chest wall is built in such a way that I feel practically everything my heart is doingbut then I also have a heightened awareness b/c of my history of arrhythmia. Some get palpitations but don't feel them, and then suddenly pass outand that's the first clue they might have arrhythmia.

By the way, there are lots of different kinds of arrhythmia including something called bradycardia when your heart starts slowing down out of nowhere and you can pass out. That's the kind of arrhythmia that apparently gets treated with pacemakers.

noddy, I agree about learning to live with it but I have to admit that sometimes I feel annoyed by having to give up things that at one time really improved my quality of life (such as caffeine and really vigorous exercise). Do you feel that way sometimes?

[noddy5]

I no longer work because of mine.But recently I have felt that I have eliminated too many fun things from my life and am slowly gaining the confidence to restart them(in moderatuion)I am planning to volunteer a couple of mornings at a local womens centre with a view to going back to part time work.But I agree sometimes the slower pace of life is s00000000000 frustrating!

[expatkat]

noddy I'm so happy to hear you plan to volunteer and then work part time. Did you used to have a very high pressured job which made your condition worse? Or was your condition so bad at one time that working became imposssible in any capacity? It sounds like you've had a hard time of it.

[noddy5]

I didnt have a high pressure job I was working in interiors and loving it.The condition left me so exhausted and stressed I just couldnt cope with a job and a family life so the job went

[butterflymum]

Zebra, this link here , from the Arrhythmia Awareness Week website, may help you understand better, just click on the different conditions on the left hand side and an animated diagram and written info should appear (ps, can be a bit slow loading but will do so). The labels button at the top of the page can also be clicked for more details on the diagram.


expatkat and noddy5, thanks for adding to the thread - it would be great if you felt you could also support the forthcoming awareness week by letting others know about it. Thanks in anticipation.


butterfly

[misdee]

my dh was tach-ie when he was taken to hospital. a mis-mash of symptons that didnt add to anything revelaed an enlarged heart when he had an x-ray and revealed his condition. he still has palpatations at times, but is generally controlled by medication.

[butterflymum]

The awareness week is not that far off now.

An arrhythmia is an abnormality of the heart beat.
The heart could beat too fast or too slow or beat irregularly.

Arrhythmia Awareness Week aims to improve Awareness, Diagnosis and Treatments
leading to a better Quality of Life for those with Cardiac Arrhythmias.

See first post below for link.

[tigermoth]

thanks for the information. MY dh has this condition from time to time. He has occcasionally mentioned it to the doctor, but so far hasn't wanted to get his hearbeat measured or take medication. I would really like to know what treatments are available.

[Evita]

butterflymum, I've looked at your link a couple of times now. How best can one 'support' the week?

[butterflymum]

Hello Evita,

Thank you for your interest again and hoping your own condition is not giving you too much trouble at the moment.

Arrhythmia Awareness Week will begin with a lunch and seminar in the House of Commons Terrace Marquee from 12:15 to 3:00 pm on Wednesday 12th May 2004. You could encourage your own local MP to attend this event and to write to the Minister responsible, Melanie Johnson, asking for the National Service Framework to include targets for the diagnosis and treatment of arrhythmias. A sample letter is available from the site.

butterfly

[popsycal]

I think my dh may have this - just going to have to nag him to go to the docs now

[butterflymum]

"The campaign (known as AAAW) is gathering pace, over 70 MPs have accepted an invitation to attend the launch together with many leading medical professionals."

A reminder that the awareness week is just over a month away. Do visit the site via the link in my first post.

butterfly

[butterflymum]

An easy to read NHS Patient Information Leaflet (PIL) on Arryhthmias can be found at:

/linkwww.prodigy.nhs.uk/clinicalguidance/releasedguidance/webBrowser/pils/PL619.htm/PILS{}

[butterflymum]

Oops, should be:

PILS

[butterflymum]

The awareness week is almost here. Do visit the AAAW site ( see link in first post) for more info and helpful links for those with any such condition.

butterfly

[butterflymum]

The Awareness Week will be launched on Wednesday -keep a lookout in newspapers and on television for items about Arrythmias.

butterfly

[butterflymum]

Oops, should have said Arrhythmias.

[butterflymum]

Times Online Article about Arrhythmias and the Awareness Week.

Hope this helps someone.

butterfly

[lemonice]

I picked a leaflet up about a year ago about SADS i think which is connected to this i believe and it made me think perhaps my dd1 might have some aspect of it. But on the other hand i think i'm just reading her into it wrongly.

She is now 20, but not so much recently as far as I know but she had a syndrome whereby after a sudden shock usually a minor accident of some kind eg falling off bike, crashing into chair arm, a kick during play etc she passes out and comes round very confused. Around the age 10 to 14 this happened quite regularly to the extent that I described it on school trip medical forms etc. we used to carry rescue remedy around with us Is this like this heart arrythmia and if so can you grow out of it?

[triplets]

Hi everyone, As I sit here I am wired to a Novacor monitor to record my heart for the next few days, I had it fitted yesterday and also did an exercise ecg. As the last time I was fitted with one the stupid thing keeps going off when its not supposed to making me feel very jumpy and nervous, like at 1am, 4am, and 6am today! I phoned the cardiology unit and she told me to take it off until she spoke to my consultant and got him to look at my ecg. She has phoned back and said he wants mt to persevere with it for another 48hours, I put it back on and BEEP BEEP BEEP! Has anyone worn one of these? I am beginning to think it is me. Some of you will know that the reason Harry and I are having our tests done is because our beloved Matthew died 10 years ago and no medical explanation was ever found, his heart simply stopped. Now that we have these three we are naturally worried, and there is so much more awareness of possible causes like Long QT that are unfortuneatly hereditary. Also about 6 months ago I started to feel very dizzy. had plalpatations and almost passed out twice, they tested and found nothing, I still sometimes get the symptems, so we need to find out as much as we can. I get alot of info from Anne Jolly of SADS, but I find in my case the more I know, the more I think about it and get myself upset. Life can be so stressful!

[butterflymum]

Lemonice, yes, SADS do also have an input into the Arrhythmia Awareness campaign, as the condition responsible for Sudden Adult cardiac Death is in itself a type of arrhythmia.

What you describe as having happened when your daughter was younger sounds very much like the condition my middle son suffers from ie Reflex Anoxic Seizure (RAS), which is another type of arrhythmia. If it was this, then yes, it is possible that she has grown out of it, although adults can continue to suffer.

Triplets, I hope my postings have not added to your feelings of stress. Indeed, I was sorry to read about your history and hope that the tests you are having done provide the doctors with the corrrect info to help you. I think the fact that all forms of arrhythmia are being highlighted in this important campaign will only serve to improve information/diagnosis/treatment for a great number of individuals suffering from conditions accross the whole spectrum. The new charity which has been set up to forward this is Arrhythmia Alliance . Their website me be of some help to you.

butterfly