Advances in Community Defibrillation ......Tuesday 20th October 2009

COMPLETE AGENDA NOW AVAILABLE!!!

***Free of Charge - to all those who register prior to the event*** 

Hello, i have just joined this group. My husband David, who is 50 had a heart
attack in june, and has had a ICD fitted, does anyone else on here have one
fitted. look forward on hearing from you. Jackie.

Hello Everyone!

I just wanted to keep you up to date on forthcoming events. The FIRST Arrhythmia
Alliance Patient Newsletter has just gone to print and should be posted to all
A-A patient members by the end of next week. This will share with you fellow
patient news, campaign updates, the most up to date publication list and
information on the Arrhythmia Alliance Patient Day being held on SUNDAY 18th
OCTOBER in  conjunction with the Heart Rhythm Congress. Booked through A-A,
tickets are 50% cheaper- just £25.00 per person. The agenda includes
presentations from leading arrhythmia medical experts and fellow arrhythmia
patients.

To reserve your place, order an agenda and registration form or to sign up for a
copy of the A-A Patient Newsletter please email me at
heather@...

I look forward to meeting many of you in October.

Best wishes

Heather

Calling all supporters…

We are campaigning to ensure pulse checks are taken during routine visits to a GP surgery, to promote timely diagnosis and treatment of heart rhythm disorders.

Arrhythmia Alliance has tabled an e-Petition on the Downing Street website.

Please take a couple of minutes to sign the petition. 

You can sign by going to http://petitions.number10.gov.uk/KnowYourPulse/ 

We need as many signatures as possible to show how important this simple health check is for people with potential heart rhythm disorders. With enough signatures the government has to respond to everyone who signs!

Please ask your colleagues, friends and family to sign the petition.

To sign the petition, go to http://petitions.number10.gov.uk/KnowYourPulse/ 

Thank you! Hope you're having a good weekend

Can anyone tell me if there are any contraindications with having an MRI scan
and arrhythmia ... i have "inappropriate tachycardia syndrome" i also have svt
events and i have ventricular ectopic beats ......

I was once given a "Tens machine" to use for pain releif and this sent my heart
rate soring off to 200 bpm in an instant .....

I am needing to go for a MRI or maybe a CT scan .....

With the MRI being an electrical and magnetic field i was a little, no not a
little a lot aprehensive about having it done .... with my history of this
chronic type of rhythm problem i am always uneasy about having anything done
...... please can anyone lend any info on this subject .....

many thanks kate

Hi

Has anyone had experience of taking amiodarone and warfarin at same time as just
started amiodarone today prior to internal cardioversion?

I am 64 year old male in UK, first diagnosed with PAF in 2000. I now have long
standing persistent AF, diagnosed as such in March 2006. Due to increasing
symptoms my EP and I have decided to attempt an internal cardioversion. If I
feel better when in NSR after cardiovarsion, we may then proceed to a catheter
ablation. To give me a better chance of achieving NSR at cardioversion I have
started amiodarone this week (short-term only) and of course I have already
started warfarin (two months ago). My two questions are:

Is reversion to NSR at cardioversion likely as I have been in persistent AF for
over three years? It will be an internal cardioversion to give me more of a
chance.

Is amiodarone the drug of choice for this (to mitigate arrhythmia prior to
cardioversion), or are other anti-arrhythmics more suited?

Thanks for any information and input that can offered.

Regards, Harry

Thank you for your kind words of support  It was a complete surprise but a very
nice one!

Hope you are all enjoying the good weather
Trudie

Trudie/Francesca

Many congratulations on your MBE, it is well deserved. All your hard work and
the success of STARS has helped so many and been an inspiration, to me too.

Many thanks and keep up the hard work and enjoy your day at the palace when it
arrives.

Alison

Congratulations to Trudie and a big thanks for all you have done for the
healthcare services :)

Thought I would let everyone know that my Mum / Trudie Lobban has been recognised in the Queens Birthday Honours list 2009 - she has been awarded an MBE for services for Healthcare as Founder & CEO of STARS.

Well done Mum! You really deserve it

Francesca

Hi to everyone and thank you for your messages. It is lovely to know there is
people out there to talk to. This in itself is very reassuring. I went ahead
last night with the appointment with the reflexologist, but we decided on having
Reiki, until I have confirmation from the Cardiologist (appointment to be taken
place within the next 3-4 months)that the Ablation was successful. Reiki is also
very relaxing something I would highly recommend. As for the Anxiety, I have
often wondered whether it is the cause of the AVNRT or visa versa. I have been
on Paroxetine for 11 years and am now wondering if I may have been misdiagnosed.
The anxiety attacks only ever seem to occur when I am aware of my heartbeat.
Unfortunately, I didn't ask the Cardiologist if he found the cause behind the
AVNRT. However, I have asked his secretary to forward me a copy of my discharge
notes which might enlighten more info. As for the gentleman who has posted about
his AF, oxygen levels do drop quite substantually, whereas with SVT's, etc it is
not so prominent. Have you been to your Doctor about it? You may need to have
extra oxygen given to balance the levels. This was the first thing (besides
putting me on the heart monitor)I was put on when I had AF at the hospital. Like
I mentioned in my previous message, if you know in yourself that something is
not right with your body, persist with your doctor. As for information on
leaflets, I gladly welcome any extra information. Many thanks again to all.

Hi Sharon

I have just read your story - thank you so much for sharing it with everyone.

Following an ablation, it is quite common to be aware of extra or'missed' beats.
I know it is easy to say, but try not to worry about these symptoms because they
should begin to settle down as time goes by.  However, if you do experience
palpitations or your heart starts racing, then you should report this to your
doctor in case the procedure has not been completely successful.

You were asking about reflexology.  Lots of people talk very highly about this
therapy but do be sure you are going to a very experienced therapist who
understands the procedure you have had and ensure she avoids the pressure points
that affect the heart.

I am sure you will receive lots of good advice from all our 'friends' on the
board!  If you wish to talk to me or receive our booklets, I am available on
jenni@...



Regards

Jenni

Hi there i suffer from A.F.and have good and bad days today being a bad day as i
sit here on the sofa my chest feels wierd i feel as though i can hear my heart
beating and my breathing does not feel right on occasions my chest also aches
does anyone have the same symptoms thanks mick.

Hello sharon

   I am a relatively new member,  i suffer with a constant tachyarrythmia
and have not been offered any of the treatments that you have had .... i
am sure there will be others on this site that are familiar with the
AVNRT i am sure i have seen it written somewhere, i have had the
ectopics and the missed beats and they are concerning even though we are
told they are harmless i try to ignore mine as best i can ....

kate .....


--- In heartrhythm-AA@yahoogroups.com, Shaz (new) wrote:
>
> Hi, I'm Sharon and am new to this forum. A great forum at that and
hopefully will help myself and others. Here's my story. My anxiety
disorder started 11 years ago due to the tragic death of my grandad. 6
years ago I had an AF which fortunately went back to normal without
intervention. The cause was never found, but the doctors put it down to
stress, due to the fact I had just lost my mum to cancer. Over the past
2 years I had been suffering with missed/skipped/erratic heart
beats.(does not help with the anxiety one bit). I had been in and out of
hospital like a yoyo and each time, as soon as I mentioned I had an
anxiety disorder, the doctor's weren't interested. It got to the point
where I even bought an Omron Heart Monitor, end of last year. It picked
up several irregular heartbeats, which I then took down to my local
doctor who then referred me to a Cardiologist. My appointment was just
before Christmas. Again, as soon as I mentioned Anxiety disorder, he
didn't even bother to look at the results on the monitor and told me to
go home, don't panic and flog the monitor on Ebay. I was rather
disgusted and thought,ok, maybe it was all in my head and will have to
live with it. Missed/skipped/erratic beats carried on occurring and I
tried to ignore them. Until the week before Easter, where I was sitting
calmly, and very relaxed, watching tv in the evening and suddenly my
heart went into overdrive (very rapid, regular beats). I tried to stay
calm but after 10 minutes got the hubby to phone the ambulance. Within 5
minutes a Paramedic arrived and put me straight onto the heart monitor.
Evidence showed a rapid, regular heartbeat of 300 bmp. Halleluhah, it
was confirmed that there was a problem after all and not in my head. I
was directed straight to a Cardiologist in Liverpool(albeit, not the
previous Cardiologist I had seen) where I was advised to have an EP
study and possible Catheter Ablation. Risks, extra were explained to me.
I felt that medication was not an alternative and agreed to go ahead
with the operation. The op took place last Wednesday whereby, the rapid
heartbeat was found within 5 minutes of the procedure (it didn't take
much to start it off), ablation was then taken place and diagnosis was
confirmed as AVNRT in the left Atrium. Quite unusual I was told.
Operation went extremely well and nothing to worry about at all(even
though I didn't sleep at all the night before - Anxiety kicking in
again). I was fully sedated but well aware of what was happening. Quite
an experience and very interesting at that.
> I was told that the operation was 95% successful. However, the first
few days after the operation everything was fine and I was on cloud nine
but the third day I had several missed/skipped beats which produced
symptoms of dizzyness (and panic). I rushed off to the local hospital
where my blood pressure had shot upto 159/98 but pulse rate was 80 bpm.
I was told to go home and relax and wait and see if anymore beats
occurred or if my blood pressure went any higher to go back to the
hospital. I am now here sitting at home on the computer, writing to you
all, asking for any advice on post-op info. I have booked myself in for
some Reflexology (to calm my nerves). However, is it safe to go ahead
with Reflexology or any alternative treatment? Also, if anyone would
like to talk please do, I gladly welcome all chats. All in all, besides
asking for a bit of advise, I recommend that, if your body is telling
you that something is not right, keep going back to your Doctor, whether
you are being classed as a Hyperchondriac/manic depressive or whatever.
Only you know what is right and what is wrong. Well, I shall finish now
before I bore you all. Thank you for listening and I look forward to
hearing from any members
>

Hi, I'm Sharon and am new to this forum. A great forum at that and hopefully
will help myself and others. Here's my story. My anxiety disorder started 11
years ago due to the tragic death of my grandad. 6 years ago I had an AF which
fortunately went back to normal without intervention. The cause was never found,
but the doctors put it down to stress, due to the fact I had just lost my mum to
cancer. Over the past 2 years I had been suffering with missed/skipped/erratic
heart beats.(does not help with the anxiety one bit). I had been in and out of
hospital like a yoyo and each time, as soon as I mentioned I had an anxiety
disorder, the doctor's weren't interested. It got to the point where I even
bought an Omron Heart Monitor, end of last year. It picked up several irregular
heartbeats, which I then took down to my local doctor who then referred me to a
Cardiologist. My appointment was just before Christmas. Again, as soon as I
mentioned Anxiety disorder, he didn't even bother to look at the results on the
monitor and told me to go home, don't panic and flog the monitor on Ebay. I was
rather disgusted and thought,ok, maybe it was all in my head and will have to
live with it. Missed/skipped/erratic beats carried on occurring and I tried to
ignore them. Until the week before Easter, where I was sitting calmly, and very
relaxed, watching tv in the evening and suddenly my heart went into overdrive
(very rapid, regular beats). I tried to stay calm but after 10 minutes got the
hubby to phone the ambulance. Within 5 minutes a Paramedic arrived and put me
straight onto the heart monitor. Evidence showed a rapid, regular heartbeat of
300 bmp.  Halleluhah, it was confirmed that there was a problem after all and
not in my head.  I was directed straight to a Cardiologist in Liverpool(albeit,
not the previous Cardiologist I had seen) where I was advised to have an EP
study and possible Catheter Ablation. Risks, extra were explained to me. I felt
that medication was not an alternative and agreed to go ahead with the
operation. The op took place last Wednesday whereby, the rapid heartbeat was
found within 5 minutes of the procedure (it didn't take much to start it off),
ablation was then taken place and diagnosis was confirmed as AVNRT in the left
Atrium. Quite unusual I was told. Operation went extremely well and nothing to
worry about at all(even though I didn't sleep at all the night before - Anxiety
kicking in again). I was fully sedated but well aware of what was happening.
Quite an experience and very interesting at that.
I was told that the operation was 95% successful. However, the first few days
after the operation everything was fine and I was on cloud nine but the third
day I had several missed/skipped beats which produced symptoms of dizzyness (and
panic). I rushed off to the local hospital where my blood pressure had shot upto
159/98 but pulse rate was 80 bpm. I was told to go home and relax and wait and
see if anymore beats occurred or if my blood pressure went any higher to go back
to the hospital. I am now here sitting at home on the computer, writing to you
all, asking for any advice on post-op info. I have booked myself in for some
Reflexology (to calm my nerves). However, is it safe to go ahead with
Reflexology or any alternative treatment? Also, if anyone would like to talk
please do, I gladly welcome all chats. All in all, besides asking for a bit of
advise, I recommend that, if your body is telling you that something is not
right, keep going back to your Doctor, whether you are being classed as a
Hyperchondriac/manic depressive or whatever. Only you know what is right and
what is wrong. Well, I shall finish now before I bore you all. Thank you for
listening and I look forward to hearing from any members

Hi Chris ...

Yes i know it sounds a little confusing doesn't it ! ... i live in North
Wales and you don't get the luxury of this choose and book scheme that
you have in England ... i can only be guided by what i am being told ...
as far as i am aware it has been a difficult case and a rare one ....
the name being given to my type of rhythm problem is  "inappropriate
sinus tachycardia"  i have had two 24 hour tapes and two three week self
activating monitors for which i am told show fast rates not equal to my
activity and i have been monitored in the hospital and the same
information has been gathered ...... here you have to wait to be
referred to Liverpool to see a Electrophysiologist ... I was sent to see
one and there they did a ecg and i was reffered back ...... i was never
offered any further tests .... as far as accepting the diagnoses  i have
no alternatives i'm afriad .........

In heartrhythm-AA@yahoogroups.com, Chris H wrote:
>
> Dear Kate,
>
> Don't worry about "going on" a bit: this group is one place where you
are welcome to "go on" as much as you like!!
>
> Well, I am not a cardiologist or an electrophysiologist.
> But I would not accept the diagnosis you have had thus far.
> Don't accept the comment that an ablation of the AV node "usually
results in permanent pacing" i.e. a pacemaker. Frankly, that is absolute
... no, I won't print the word ...
> When I was offered an ablation of the AV node last year by the John
Radcliffe, the likelihood of ending on a pacemaker was given as 1 in
200, 0.5%, which is a worldwide average and is the same figure that
Sandra was given.
> You really need another opinion: somewhere on the AA website is a list
of prefered hospitals, but I can' find it!
> Where do you live? Examples are the BRI, Bristol, the John Radcliffe,
Oxford, St. Marys Paddington, Papworth near Cambridge. People on this
site can recommend somewhere where we've had a good experience if we
know roughly where you are. And you should then PUSH your GP for an
appointment under choose-and-book. Sounds like you've not even got a
proper diagnosis yet ...
>
> Regards, Chris H
>
> --- In heartrhythm-AA@yahoogroups.com, Kate wrote:
> >
> > Chris H..
> >
> > And thanks for joining in with the hormone debate Ha! ...... a brief
> > outline of my story is this ... two years ago i woke up with a
severe
> > chest cramp, silly me did nothing about it and got ready for work,
and
> > then became ill during the day, tired and just wanted to sleep felt
ill
> > ... went to the gp he said he thinks i had angina ... go home and
rest
> > .... next day i was sent into hospital with a heart rate of 170 that
> > would not stop they thought it was a lung/clot, did CT all clear,
they
> > did a 24 hour urine test all clear this was for something called
> > peocromocytoma .... through out i had an inccessant sinus
tachycardia
> > that seemed to baffle ..... tried me on two beta bockers they did
not
> > work .... (something happened to change the way my heart is
bahaving)
> > ... my heart now gives huge exagerated burst of tachycardia every
time
> > i move, it goes 130 -160 just having a wash and getting dressed and
is
> > up and down all day at high figures .... the cardiologist is not
> > concerned about it because they say it is in sinus rhythm he say's
what
> > is happening is rare ...... he has just sent me to see a
> > electrophysiologist who did an ecg and says he won't recommend me
for
> > an ablation because it is the SA node and is difficult to treat and
> > ablation normally results in permantly paceing the heart .... and
now
> > wants to try me on another medication ....
> >
> > sorry if i have gone on abit .....
> > kate
> >
>

Hiya Mike

    I do think there is a bit of a mix up going on ..... ( was this
message meant for me? ) .... anyway sorry your cardiovertion was not a
success ....  i have no idea what the next step would be for you,  i
have not had any experience of this before ... i bet it as been
frustrating and stressful for you
.... i hope that whatever your next step is it sorts things out for you
.... all the best ...kate ..



--- In heartrhythm-AA@yahoogroups.com, Mike wrote:
>
> I have just had a cardioversion for the first time at my local
hospital and it was unsucessfull they tried three times now i wonder
what the next step will be mike.
>
> --- On Fri, 5/6/09, Kate@... Kate@... wrote:
>
>
> From: Kate@... Kate@...
> Subject: [heartrhythm-AA] To Sandra - re ablation
> To: heartrhythm-AA@yahoogroups.com
> Date: Friday, 5 June, 2009, 6:36 AM
>
>
>
>
>
>
>
>
> Hi sandra
>
> I am glad that your ablation went well for you , i have heard that it
is
> sucessful for the svt .. i was not offered this, when i saw the
> electrophysiologist he said he would not be recomending this for me as
> my problem is in the sinus node and they normally end up having to put
a
> permenent pacemaker in .... i don't know if i will be going down this
> path in the future ... it is stressful i have had severe rhythm
> problems for just over two years now ... and get very tired and
fatigued
> with it .....
>
> kate
>

Dear Kate,

Don't worry about "going on" a bit: this group is one place where you are
welcome to "go on" as much as you like!!

Well, I am not a cardiologist or an electrophysiologist.
But I would not accept the diagnosis you have had thus far.
Don't accept the comment that an ablation of the AV node "usually results in
permanent pacing" i.e. a pacemaker. Frankly, that is absolute ... no, I won't
print the word ...
When I was offered an ablation of the AV node last year by the John Radcliffe,
the likelihood of ending on a pacemaker was given as 1 in 200, 0.5%, which is a
worldwide average and is the same figure that Sandra was given.
You really need another opinion: somewhere on the AA website is a list of
prefered hospitals, but I can' find it!
Where do you live? Examples are the BRI, Bristol, the John Radcliffe, Oxford,
St. Marys Paddington, Papworth near Cambridge. People on this site can recommend
somewhere where we've had a good experience if we know roughly where you are.
And you should then PUSH your GP for an appointment under choose-and-book.
Sounds like you've not even got a proper diagnosis yet ...

Regards, Chris H

--- In heartrhythm-AA@yahoogroups.com, Kate wrote:
>
> Chris H..
>
> And thanks for joining in with the hormone debate Ha! ...... a brief
> outline of my story is this ... two years ago i woke up with a severe
> chest cramp, silly me did nothing about it and got ready for work, and
> then became ill during the day, tired and just wanted to sleep felt ill
> ... went to the gp he said he thinks i had angina ... go home and rest
> .... next day i was sent into hospital with a heart rate of 170 that
> would not stop they thought it was a lung/clot, did CT all clear, they
> did  a 24 hour urine test all clear this was for something called
> peocromocytoma  ....  through out i had an inccessant sinus tachycardia
> that seemed to baffle ..... tried me on two beta bockers they did not
> work .... (something happened to change the way my heart is bahaving)
> ... my heart now gives huge exagerated burst of  tachycardia every time
> i move, it goes 130 -160 just having a wash and getting dressed and is
> up and down all day at high figures .... the cardiologist is not
> concerned about it because they say it is in sinus rhythm he say's what
> is happening is rare ...... he has just sent me to see a
> electrophysiologist who did an ecg and says  he won't recommend me for
> an ablation because it is the SA node and is difficult to treat and
> ablation normally results in permantly paceing the heart .... and now
> wants to try me on another medication ....
>
> sorry if i have gone on abit .....
> kate
>

Dear Kate

I quite understand. I know my pathway was very near the SV node and
they were worried about burning away too much and damaging the SV
node. As I signed the consent form my doctor told me I had a 1 in 200
chance of having a pacemaker by the end of the day. This seemed VERY
huge at the time but I signed anyway, sometimes you just have to go
with their advice, don't you. Anyway, thank God it didn't happen.
But they did say a pacemaker is not the end of the world and life can
go on as normal.

I really sympathise with the tiredness, fatigue and stress. You will
just have to be really good to yourself, give yourself treats and make
sure you get time to relax (I know this can be easier said than done).

Good luck.

Sandra


2009/6/5  <Kate>:
>
>
> Hi sandra
>
> I am glad that your ablation went well for you , i have heard that it is
> sucessful for the svt .. i was not offered this, when i saw the
> electrophysiologist he said he would not be recomending this for me as
> my problem is in the sinus node and they normally end up having to put a
> permenent pacemaker in .... i don't know if i will be going down this
> path in the future ... it is stressful i have had severe rhythm
> problems for just over two years now ... and get very tired and fatigued
> with it .....
>
> kate
>
>

Chris H..

And thanks for joining in with the hormone debate Ha! ...... a brief
outline of my story is this ... two years ago i woke up with a severe
chest cramp, silly me did nothing about it and got ready for work, and
then became ill during the day, tired and just wanted to sleep felt ill
... went to the gp he said he thinks i had angina ... go home and rest
.... next day i was sent into hospital with a heart rate of 170 that
would not stop they thought it was a lung/clot, did CT all clear, they
did  a 24 hour urine test all clear this was for something called
peocromocytoma  ....  through out i had an inccessant sinus tachycardia
that seemed to baffle ..... tried me on two beta bockers they did not
work .... (something happened to change the way my heart is bahaving)
... my heart now gives huge exagerated burst of  tachycardia every time
i move, it goes 130 -160 just having a wash and getting dressed and is
up and down all day at high figures .... the cardiologist is not
concerned about it because they say it is in sinus rhythm he say's what
is happening is rare ...... he has just sent me to see a
electrophysiologist who did an ecg and says  he won't recommend me for
an ablation because it is the SA node and is difficult to treat and
ablation normally results in permantly paceing the heart .... and now
wants to try me on another medication ....

sorry if i have gone on abit .....
kate

Hi sandra

I am glad that your ablation went well for you , i have heard that it is
sucessful for the svt .. i was not offered this,  when i saw the
electrophysiologist he said he would not be recomending this for me as
my problem is in the sinus node and they normally end up having to put a
permenent pacemaker in .... i don't know if i will be going down this
path in the future ...  it is stressful  i have had severe rhythm
problems for just over two years now ... and get very tired and fatigued
with it .....

kate

Hello Ladies:

As a 63 year old male with AVNRT (AV node re-entry tachycardia), I would
conclude that it's not necessarily hormonal, although that could be part of the
trigger.
With AVNRT, you have an additional electrical path in your heart which short
circuits under some circumstances to cause the fast heart beat. See the
Arrhythmia Alliance's excellent series of booklets at
http://www.heartrhythmcharity.org.uk/html/booklets.html
I regularly get both ectopics and missed beats which are all part of my AVNRT. I
also get lots of other interesting things as well: with arrhythmias, in the end
we often have our own unique set of symptoms as well as the common-to-all
symptoms.
Kate, did your consultant give you any options in terms of treatment, and was
your consultant an arrhythmia specialist or a general cardiologist at a district
hospital? If the latter, you may not realise that you are entitled to go direct
to a hospital which specialises in "our" kind of problems.

Best wishes and good luck, Chris H.


--- In heartrhythm-AA@yahoogroups.com, Jackie wrote:
>
> Hi Kate,
> When I was admitted to hospital last year with the rapid heartbeat I was
diagnosed as having AVRNT which they told me was a type of SVT.
> My normal heart rate is usually between 68-72bpm resting.
> As I say I have not had any further episodes of SVT's since but for last 4
months have been getting ectopic beats which the consultant said is all part and
parcel of AVRNT.I have read up a little on the internet and this type is
supposedly the most common form and is more common in women than men,with 75% of
cases occurring in women, is this because it is hormonal? I wonder.
> Jackie
>