Hi everyone,
My name is Jane and I have SVT and Angina, my daughter
Jennifer has NCS.  I am on medication which controls
things most of the time, and Jennifer is on the road
to better things, we hope.  I am on the STARS board as
well as here, and if I can make more friends here then
that would be good.
Jane


       ___________________________________________________________
Yahoo! Answers - Got a question? Someone out there knows the answer. Try it
now.
http://uk.answers.yahoo.com/

hello,
my name is suzanne and i am 45 yrs old. i had sick sinus syndrome before 2002
but then we got into a terrible auto accident in aug 2002. i got hurt bad and
had some heart trauma and a head injury. i got something called "dysautonamia"
which made my brain not tell my hr and BP what to do...also i have NCS
(neurocardiogenic syncope) and then atrial fib since i had a mild heart attack
in 2005. i am on coumadin. i get blood draws often. I am just trying to make a
friend, someone else that goes through some of the same things i do....??? i
would love to get to know someone here?? suzanne

Hi my name is Julie

I am 43 and a mother of 3 grown up daughters.  I have suffered with
blackouts for many years and eventually I was diagnosed with
temporal lobe epilepsy in my early teens.

In 1995 my youngest daughter aged two years old also started to have
seizures but wasn't diagnosed with epilepsy but with a condition
call Reflex Anoxic seizures.  Eventually we found the patients
support group STARS which has been a great source of support.

In 2001 I went through a particularly difficult period with my own
seizures and my husband felt it was time I was reviewed. My husband
felt that perhaps I had RAS and not epilepsy, so with the help of
STARS I got a referral to an adult specialist in London who
confirmed that I didn't in fact have epilepsy but RAS, 28 year after
I was told it was epilepsy.

In 2004 I was fitted with a pacemaker and I have had no further
attacks.  My daughter now 15 has also been fitted with a pacemaker
after an ILR reveal recorded that her heart stopped for 45 seconds
during one of her seizures.

I also have other heart rhythm problems; I also have promoximal
atrial fibrillation and more recently non sustained ventricular
tachycardia which I now take medication for.

I hope to be able to chat to other sufferers with any heart rhythm
disorders.

Best wishes

Julie

Dear Trudie

Thanks for your welcome to the message board. It seems a good idea and
I wish you success with it.

Alan









--- In heartrhythm-AA@yahoogroups.com, "tcasl" <trudie@...> wrote:
>
> Welcome to all who have registered as members in the last day or so
>
> Please post a message ontroducing yourself and sharing your diagnosis
> etc.
>
> Look forward to hearing from you and if you experience any problems
> please contact me at trudie@...
>
> Welcome
>
> Trudie
>

Welcome to all who have registered as members in the last day or so

Please post a message ontroducing yourself and sharing your diagnosis
etc.

Look forward to hearing from you and if you experience any problems
please contact me at trudie@...

Welcome

Trudie

Hi Trudie and all
Yes we have such a lot to learn from each other ! When you've to have
procedures done like electro physiology study and ablation you can read
up about it on the AA site but its so much better to be able to share
experience with someone who's gone through it!! We may not always get
the technological terms right but we make ourselves understood AND the
help and support is always there from the team and from and each other!!
For those who don't know me I started experiencing feelings of
nausea ,dizziness and migraine many years ago !! I suffered my first
TLoc/ seizure in 96 and I was diagnosed as epileptic!! I've been
diagnosed by two different doctors and lately by a third as suffering
from vaso vagal syncope of unknown origin but the epilepsy card still
hovers in the background!!
I currently have a Reveal ILR but so far I've not had a successful
reading!
Welcome all!
Joan -usually to be found on the STARS board!!

Please post your message, share experiences, ask questions or generally
chat - the one thing we all have in common is heart rhythm disorders!

hi Matt

I have been on flecainide in the past, it was the very first med ever
tried for my SVT and worked very well for me for 2 years.

For one of my EP Studies / Ablations they used the ESI non-contact
mapping array, which is where they use a specialised catheter to build
a 3D colour map of the inside of the heart chamber they are studying.
They used this because that arrhythmia they were trying to locate was
a focal tachycardia, very very close to my sinus node and was
aparently very difficult to map with conventional EP techniques.

If your specialist was having trouble locating your pathway
successfully or identifying a focal spot causing the arrhythmia, it
might be worth asking them about the non-contact mapping.
(depending on the type of SVT you have, I have had both arrhythmias
generated by 'focal' areas in the heart, others of mine have had
'pathways' that they use in a type of feedback loop, called re-entry).

Ending up in A&E is pretty horrible, fortunately most of my tachys
have stopped before that point or I have managed to stop them myself,
but I'm glad at least I can go in for them to stop the arrhythmia if
it comes to it, still I am afraid to push myself during exercise these
days as that is the main thing that triggers my symptoms. I used to go
swimming 3 - 5 days a week and I am trying to lose weight, so now I am
having to be more careful, many days I cannot exercise at all without
triggering off palps.

I haven't really heard of many arrhythmia support groups, some heart
support groups are attached to local hospitals, I tried to join one
once, but they suggested I might not find the group useful as it was
all coronary patients with most being over 60 (I did not see that as
being a problem, I was 22 when I approached them, but none of them
seemed to have experience with arrhythmias so it wasn't of much help).

There do seem to be groups for pacemaker and ICD (defib) patients, but
support for arrhythmia patients is lacking at local level in most places.

The support group I run is for a specific type of SVT called
Inappropriate Sinus Tachycardia (IST), but unfortunately we only
'meet' online in chat room and on our forum as most of our members are
widely spread throughout the world (IST is one of the rarer types of SVT).

If I had more time I would love to set up a local support group for
arrhythmia patients, I'm sure people would come to it.

I wonder if any other Arrhythmia Alliance members know of local
support groups for people with arrhythmias?

take care,

Fran

--- In heartrhythm-AA@yahoogroups.com, aUser wrote:
>
> Fran,
>
> Thanks very much for your reply.
>
> My last ablation was exactly one year ago now. I have been on
> flecainide (2x50mg) plus a low doseage of antenolol for this
> period and have for the most part been fine. I still get the
> occasional flutter of which there seem to be different types - they
> feel different - some are palpatations and others more like "pops". I
> have managed to ignore these.
>
> Because I had 3 ablations last year, the first two of which were
> clearly unsucessful, I have not had the nerve to come off the
> medication. I am told I have simple SVT but the pathway is in a very
> tricky place.
>
> I have not had the sickness and fainting you have had but the few
> occasions last year when the tacycardia didn't stop really freaked me
> out. I really do not want to be in A&E again!!
>
> I am hoping the SVT will be sorted one day and know I will have to
> pick a time to come off the medication.
>
> I hope your EPS and ablation go well.
>
> And thanks again for your postings to this group. I agree that it
> will become really useful.
>
> Do you know of any patient support groups out there that organise
> meetings? I still feel
> quite isolated in this respect.
>
> Matt

Fran,

Thanks very much for your reply.

My last ablation was exactly one year ago now. I have been on
flecainide (2x50mg) plus a low doseage of antenolol for this
period and have for the most part been fine. I still get the
occasional flutter of which there seem to be different types - they
feel different - some are palpatations and others more like "pops". I
have managed to ignore these.

Because I had 3 ablations last year, the first two of which were
clearly unsucessful, I have not had the nerve to come off the
medication. I am told I have simple SVT but the pathway is in a very
tricky place.

I have not had the sickness and fainting you have had but the few
occasions last year when the tacycardia didn't stop really freaked me
out. I really do not want to be in A&E again!!

I am hoping the SVT will be sorted one day and know I will have to
pick a time to come off the medication.

I hope your EPS and ablation go well.

And thanks again for your postings to this group. I agree that it
will become really useful.

Do you know of any patient support groups out there that organise
meetings? I still feel
quite isolated in this respect.

Matt
>
> Hi Matt
>
> I've had 3 different arrhythmias ablated: IST/Atrial Tachycardia,
> Atrial Flutter and AVNRT. I now have a pacemaker due to sick sinus
> syndrome too. I get some occasional AF as well, also hundreds of
> ectopic beats each day (although fortunately I dont feel them all!)
>
> I'm waiting for another EP Study at the moment, I seemed to do well
> for about 18 months, but I have had a significant recurrence of
> palpitations, dizziness, fainting and chest pain, so I am back on
> verapamil and a beta blocker, which is controlling things so far
until
> my study. Some of my arrhythmia episodes have caused heart rates
over
> 270bpm and I have been worried that that has returned, but hopefully
> it is not that arrhythmia this time.
>
> are you due for another EP Study / ablation at all?
>
> I am waiting to have my 4th, I hope it will be my last one!
>
> take care,
> Fran
>
> --- In heartrhythm-AA@yahoogroups.com, aUser wrote:
> >
> > hi - my name is Matt and am new to the group. I have suffered
from
> > tachycardia for 15 years since college. Initially the trigger was
> > strenous exercise which I subsequently avoided and had no major
> > problems up until a year ago when I started getting episodes at
rest
> > (probably stress induced). Last year I had 3 ablations. After the
> > initial unsucessful one, I intermittently went onto flecainide. I
> > lasted 5 weeks after the second ablation before I had another
episode
> > that didn't stop and ended up at A&E. Before the third operation
and
> > coming off the flecainide I was back in A&E twice. Since the
third
> > operation I have been on flecainide and have not had the nerve to
> > come off!
> >
> > A relatively low dose of flecainide (supplemented by antenolol
when
> > needed) is keeping things under control with no obvious side
effects.
> > I still have occasional flutters and other bumps and thumps....
> >
> > I'm interested to hear from other SVT sufferers particularly
those
> > who have been through ablations both sucessful and unsucessful!
(all
> > of my ablations were termed "sucessful" post operation).
> >
>

hello everyone, my name is Fran, I have had arrhythmias for well over
15 years. I'm 30 and live in the UK with my husband.
I have had ablations for IST / Focal Atrial Tachycardia, AVNRT and
Atrial Flutter. I also have PAF (paroxysmal AFib) and have an AAIR
(atrial) pacemaker due to Sick Sinus Syndrome (sinus node dysfunction).
I am due to have a 4th EP Study and Ablation at some point, but am
currently waiting for more outpatient tests to evaluate what
arrhythmias I am currently having.

I run the patient support organisation called "IST - Info & Support".
IST is Inappropriate Sinus Tachycardia. We provide free information to
patients, relatives, medical staff and anyone who has an interest in
IST.

I hope this forum can grow, it will be an excellent resource for
arrhythmia patients.


Fran

hi Melanie

I have some information on Cryoablation, if you need more info, please
let me know.

in the mean time, you may wish to check out the Cryocath website at
http://www.cryocath.com/
they are the manufacturers of some of the cryo equipment and they have
an excellent Patient information section on their website. They also
have video interviews with patients on there.

I hope that helps,


Fran

--- In heartrhythm-AA@yahoogroups.com, "ecoangel77" wrote:
>
> Dear Kathleen,
> Thank you for your message, can you tell me a little more about
> yourself, what age your svt started etc, whatever you are willing to
> share?
> So many questions, when you had the electropysiology study, how did
> they do it, did they need to thread the wires into your heart?
> So what did they mean that they couldn't find a pathway, does that
> mean that you don't have one, does that mean that you don't have
> svt, it all seems very confusing?
> I think that this condition is very confusing, seeing that doctors
> don't know what causes it.
> Cryoblatation is freezing instead of heating the problem area, it is
> meant to be a safer option but not always sucessful. There isn't
> much info on the subject, even the AA don't have anything, which is
> great because I really need to prepare myself before I have it done.
> Has your tiredness started since you have had svt or do you think it
> is due to stress and worry, perhaps adrenal fatigue. I am sure that
> I worried myself to exhaustion, but I don't know for sure. I don't
> know what scares me more sometimes, the tiredness or the svt:)
> I hope to hear from you soon,
> Kind regards,
> Melanie
>
> --- In heartrhythm-AA@yahoogroups.com, "kathleen" wrote:
> >
> > ---Hi Melanie,
> > i have always complained about utter fatigue beyond belief along
> with
> > suffering from arrhythmias.....i dont think people truly understand
> > when your tired like this, actully how awful you feel...i've never
> > felt tiredness like it, but my doctor cant explain it....i have now
> > started working with my condition and dont push myself like i used
> to
> > as it is not worth feeling much more unwell.....i also go for an
> > alternate therapy called "shen" which can raise energy levels and i
> > believe this to be of a great help to me....I understand when you
> say
> > you are worried about your next run of fast heart rate, i to worry
> all
> > the time but i have learned over time to cope better each time...i
> > practice deep breathing to stay calm and this helps a bit.....can i
> > ask what is "cryoblation"? is it the same as radio frequency
> ablation
> > or is it a particular area being ablated?
> > I went into hospital last April with the view to ablation but after
> > having an electrophysiology study done there was no visible, safe
> > pathway that suggested i had SVT (which is what my diagnosis had
> been
> > for years).....However, the girl in the next bed to me had
> successful
> > ablation and honestly looked fine when she come back to the ward
> and
> > said it was ok and not painful...you should get something to calm
> you
> > while they are doing the EP study in the first instance and the
> only
> > thing i felt during that was as if there was something in my throat
> > but it was not sore...I wish you all the best and hope you have a
> > successful ablation and your quality of life increases as a
> > result...please let me know how you get on!
> > Best Wishes,
> > Kathleen
> >  In heartrhythm-AA@yahoogroups.com, "ecoangel77" wrote:
> > >
> > > I was wondering whether anyone else suffered with fatigue as
> well as
> > > SVT, not when there is SVT occuring but as well as having the
> > > condition.
> > > My name is Melanie and I had my first episode when I was 19, I
> am now
> > > 29. For the first 7 years, I didn't worry too much because it
> only
> > > occured a few times and would stop. The last 3 episodes were very
> > > unpleasant and involved me going to hospital, the first 2 times
> they
> > > stopped after an hour to a half, the last time they continued
> for 2
> > > hours and I had to be injected to stop them. The last episode
> was in
> > > April and it has really affected me, I worry a lot about a repeat
> > > episode, which led to sleep problems, but this is improving.
> > > I am considering and have been booked in for a cryoblation, has
> anyone
> > > had ablation on this site?, I am very nervous but I thought it
> would
> > > be the safest option as the affected area is so close to the AV
> node.
> > > If any of this sounds familiar to you please get in contact.
> > >
> >
>

hi Julie

I also went to the Heart Rhythm Congress and found it excellent, both
as a patient myself (& patient group representative) and as a Cardiac
health professional (retired).

I'm very much looking forward to the next one!


Fran

--- In heartrhythm-AA@yahoogroups.com, Julie Fear wrote:
>
> Hi Everyone
>
>   I am new to the group, my name is Julie and I have suffered with
Reflex syncope for the last 30+ years.  I consider myself very lucky,
as I am very fortunate to now have a pacemaker.
>
>     I thought I would use this opportunity to tell you about the
wonderful 3 days my husband and I had, when we attended the first ever
Heart Rhythm Congress 2006 in Birmingham.  It was very tiring and
sometimes emotional, I also felt that my head would explode with the
amount of information I was taking in.
>
>   When Trudie first had the idea of bring together patients,
Doctors, Nurses and industry  she thought it would just be a meeting
of about 150 people.  Trudie was so very wrong over 800 delegates
attended, it exceed every ones expectations and it was wonderful to
see such a mixed bunch, all coming together for the same reason, to
provide a better service for patients/carers with arrhythmia's.
>
>   On Thursday it was patients day, so in the morning I attended the
STARS (Syncope Trust And Reflex anoxic Seizures)group and listened to
the Doctors present their latest finding on syncope, they also talked
about the treatment options.  It was extremely interesting, I feel the
Doctors were very brave to talk openly about their findings with
patients in the room.
>
>   In the afternoon we had the opportunity to ask the Doctors
questions and share our experiences, this was extremely valuable to
all of us, some had had a rather long journey to diagnoses and for
some the treatment wasn't what they hoped.  Both STARS members and the
Doctors went away with a little more understanding of each other and I
believe this will help build a better relationship for the future.
>
>
>   It was a great opportunity for me to meet up with some new STARS
memebers and to catch up on the progress of some that I have know for
some years, it was great to be able to talk to each other and share
our experiences.  We were of a mix age group with different views on
dealing with syncope, some of their ideas I have come home with and am
going to try.
>
>   It was a huge shame that more patients could not attend, I know
Trudie would have like to meet you all, may be next time it could be
organised to fall over a weekend.
>
>   I would just like to thank Trudie for a fantastic Congress and to
thank her for all her hard work, without Trudie some of us would not
have a diagnoses or treatment and would not, now, be living a
fulfilled life  THANK YOU TRUDIE!
>
>   Julie Fear
>
>
>
>
> ---------------------------------
>  All new Yahoo! Mail "The new Interface is stunning in its
simplicity and ease of use." - PC Magazine
>

Hi Melanie

I appreciate that you have probably had your ablation by now, but
wanted to let you know that you are not alone; I have had a number of
arrhythmias ablated, all of which were types of SVT.

When an ablation is successful (and these days the success rates are
really excellent, >99% for AVNRT in many centres, AVNRT is the most
common type of SVT), it can truly change your life. When I had my
first Atrial Tachycardia ablated it was amazing, I had had a
constantly high heart rate for years and after the ablation it had
gone down to a normal rate, what a difference!

I have had so many tests, EP Studies, Ablations etc, now I have a
pacemaker and life is a great deal better for me. I'm waiting to have
another EP Study at the moment, so I know how you feel.

take care,
Fran

--- In heartrhythm-AA@yahoogroups.com, "ecoangel77" wrote:
>
> I was wondering whether anyone else suffered with fatigue as well as
> SVT, not when there is SVT occuring but as well as having the
> condition.
> My name is Melanie and I had my first episode when I was 19, I am now
> 29. For the first 7 years, I didn't worry too much because it only
> occured a few times and would stop. The last 3 episodes were very
> unpleasant and involved me going to hospital, the first 2 times they
> stopped after an hour to a half, the last time they continued for 2
> hours and I had to be injected to stop them. The last episode was in
> April and it has really affected me, I worry a lot about a repeat
> episode, which led to sleep problems, but this is improving.
> I am considering and have been booked in for a cryoblation, has anyone
> had ablation on this site?, I am very nervous but I thought it would
> be the safest option as the affected area is so close to the AV node.
> If any of this sounds familiar to you please get in contact.
>

Hi Matt

I've had 3 different arrhythmias ablated: IST/Atrial Tachycardia,
Atrial Flutter and AVNRT. I now have a pacemaker due to sick sinus
syndrome too. I get some occasional AF as well, also hundreds of
ectopic beats each day (although fortunately I dont feel them all!)

I'm waiting for another EP Study at the moment, I seemed to do well
for about 18 months, but I have had a significant recurrence of
palpitations, dizziness, fainting and chest pain, so I am back on
verapamil and a beta blocker, which is controlling things so far until
my study. Some of my arrhythmia episodes have caused heart rates over
270bpm and I have been worried that that has returned, but hopefully
it is not that arrhythmia this time.

are you due for another EP Study / ablation at all?

I am waiting to have my 4th, I hope it will be my last one!

take care,
Fran

--- In heartrhythm-AA@yahoogroups.com, aUser wrote:
>
> hi - my name is Matt and am new to the group. I have suffered from
> tachycardia for 15 years since college. Initially the trigger was
> strenous exercise which I subsequently avoided and had no major
> problems up until a year ago when I started getting episodes at rest
> (probably stress induced). Last year I had 3 ablations. After the
> initial unsucessful one, I intermittently went onto flecainide. I
> lasted 5 weeks after the second ablation before I had another episode
> that didn't stop and ended up at A&E. Before the third operation and
> coming off the flecainide I was back in A&E twice. Since the third
> operation I have been on flecainide and have not had the nerve to
> come off!
>
> A relatively low dose of flecainide (supplemented by antenolol when
> needed) is keeping things under control with no obvious side effects.
> I still have occasional flutters and other bumps and thumps....
>
> I'm interested to hear from other SVT sufferers particularly those
> who have been through ablations both sucessful and unsucessful! (all
> of my ablations were termed "sucessful" post operation).
>

Hi Matt, apologies for replying earlier but I was on holiday. The
ablation I had was done during heart surgery and has been referred to
as a "mini maze" procedure.  It was not a great success. Afterwards I
had AF and atrial flutter too. I had to have a pacemaker and then was
given a new one last December.  There are a few things wrong with my
heart. I don't know if the surgeon I had is still doing the ablation
I had.  They did do a survey of all the people who were treated but I
couldn't find the results anywhere on line. I take Verapamil which I
am not happy about as I have read it can make heart failure worse but
I don't think they want me to have any other drug.






--- In heartrhythm-AA@yahoogroups.com, aUser wrote:
>
> hi - my name is Matt and am new to the group. I have suffered from
> tachycardia for 15 years since college. Initially the trigger was
> strenous exercise which I subsequently avoided and had no major
> problems up until a year ago when I started getting episodes at
rest
> (probably stress induced). Last year I had 3 ablations. After the
> initial unsucessful one, I intermittently went onto flecainide. I
> lasted 5 weeks after the second ablation before I had another
episode
> that didn't stop and ended up at A&E. Before the third operation
and
> coming off the flecainide I was back in A&E twice. Since the third
> operation I have been on flecainide and have not had the nerve to
> come off!
>
> A relatively low dose of flecainide (supplemented by antenolol when
> needed) is keeping things under control with no obvious side
effects.
> I still have occasional flutters and other bumps and thumps....
>
> I'm interested to hear from other SVT sufferers particularly those
> who have been through ablations both sucessful and unsucessful!
(all
> of my ablations were termed "sucessful" post operation).
>

hi - my name is Matt and am new to the group. I have suffered from
tachycardia for 15 years since college. Initially the trigger was
strenous exercise which I subsequently avoided and had no major
problems up until a year ago when I started getting episodes at rest
(probably stress induced). Last year I had 3 ablations. After the
initial unsucessful one, I intermittently went onto flecainide. I
lasted 5 weeks after the second ablation before I had another episode
that didn't stop and ended up at A&E. Before the third operation and
coming off the flecainide I was back in A&E twice. Since the third
operation I have been on flecainide and have not had the nerve to
come off!

A relatively low dose of flecainide (supplemented by antenolol when
needed) is keeping things under control with no obvious side effects.
I still have occasional flutters and other bumps and thumps....

I'm interested to hear from other SVT sufferers particularly those
who have been through ablations both sucessful and unsucessful! (all
of my ablations were termed "sucessful" post operation).

I had one of these implanted last December and after a few months have
decided that it has probably improved my condition.  This subject may
already have been covered but I wondered if any one else here has a Bi-
vent.  They are said to be quite a new thing in the UK.  Unfortunately,
I still have problems, particular with climbing or walking any distance
and have been told my Tricuspid valve is leaking quite badly. It has
been suggested that an operation may be necessary. After having MV
surgery in 2002 I find the thought of further surgery quite daunting.
Who can give me courage?

--- In heartrhythm-AA@yahoogroups.com, "hrt_rhythm" <heartrhythm@...>
wrote:
>
> Hello my name is Pauline and I am the helpline operator and
> administrator for the Arrhythmia Alliance.
> Welcome to this new Arrhythmia community for everyone to share their
> experiences, views and information.
> I hope that you will all make use of this new facility and find it
> helpful.
>
> Kind regards, Pauline

Hello Pauline, I am pleased to have been lead to this group through the
Emails I receive from the AA but I hope you don't mind my saying that
the site needs tweaking a bit (like my pacemaker?) in that I could not
find the date when you posted your message.
>

Dear Kathleen,
Thank you for your message, can you tell me a little more about
yourself, what age your svt started etc, whatever you are willing to
share?
So many questions, when you had the electropysiology study, how did
they do it, did they need to thread the wires into your heart?
So what did they mean that they couldn't find a pathway, does that
mean that you don't have one, does that mean that you don't have
svt, it all seems very confusing?
I think that this condition is very confusing, seeing that doctors
don't know what causes it.
Cryoblatation is freezing instead of heating the problem area, it is
meant to be a safer option but not always sucessful. There isn't
much info on the subject, even the AA don't have anything, which is
great because I really need to prepare myself before I have it done.
Has your tiredness started since you have had svt or do you think it
is due to stress and worry, perhaps adrenal fatigue. I am sure that
I worried myself to exhaustion, but I don't know for sure. I don't
know what scares me more sometimes, the tiredness or the svt:)
I hope to hear from you soon,
Kind regards,
Melanie

--- In heartrhythm-AA@yahoogroups.com, "kathleen" wrote:
>
> ---Hi Melanie,
> i have always complained about utter fatigue beyond belief along
with
> suffering from arrhythmias.....i dont think people truly understand
> when your tired like this, actully how awful you feel...i've never
> felt tiredness like it, but my doctor cant explain it....i have now
> started working with my condition and dont push myself like i used
to
> as it is not worth feeling much more unwell.....i also go for an
> alternate therapy called "shen" which can raise energy levels and i
> believe this to be of a great help to me....I understand when you
say
> you are worried about your next run of fast heart rate, i to worry
all
> the time but i have learned over time to cope better each time...i
> practice deep breathing to stay calm and this helps a bit.....can i
> ask what is "cryoblation"? is it the same as radio frequency
ablation
> or is it a particular area being ablated?
> I went into hospital last April with the view to ablation but after
> having an electrophysiology study done there was no visible, safe
> pathway that suggested i had SVT (which is what my diagnosis had
been
> for years).....However, the girl in the next bed to me had
successful
> ablation and honestly looked fine when she come back to the ward
and
> said it was ok and not painful...you should get something to calm
you
> while they are doing the EP study in the first instance and the
only
> thing i felt during that was as if there was something in my throat
> but it was not sore...I wish you all the best and hope you have a
> successful ablation and your quality of life increases as a
> result...please let me know how you get on!
> Best Wishes,
> Kathleen
>  In heartrhythm-AA@yahoogroups.com, "ecoangel77" wrote:
> >
> > I was wondering whether anyone else suffered with fatigue as
well as
> > SVT, not when there is SVT occuring but as well as having the
> > condition.
> > My name is Melanie and I had my first episode when I was 19, I
am now
> > 29. For the first 7 years, I didn't worry too much because it
only
> > occured a few times and would stop. The last 3 episodes were very
> > unpleasant and involved me going to hospital, the first 2 times
they
> > stopped after an hour to a half, the last time they continued
for 2
> > hours and I had to be injected to stop them. The last episode
was in
> > April and it has really affected me, I worry a lot about a repeat
> > episode, which led to sleep problems, but this is improving.
> > I am considering and have been booked in for a cryoblation, has
anyone
> > had ablation on this site?, I am very nervous but I thought it
would
> > be the safest option as the affected area is so close to the AV
node.
> > If any of this sounds familiar to you please get in contact.
> >
>

---Hi Melanie,
i have always complained about utter fatigue beyond belief along with
suffering from arrhythmias.....i dont think people truly understand
when your tired like this, actully how awful you feel...i've never
felt tiredness like it, but my doctor cant explain it....i have now
started working with my condition and dont push myself like i used to
as it is not worth feeling much more unwell.....i also go for an
alternate therapy called "shen" which can raise energy levels and i
believe this to be of a great help to me....I understand when you say
you are worried about your next run of fast heart rate, i to worry all
the time but i have learned over time to cope better each time...i
practice deep breathing to stay calm and this helps a bit.....can i
ask what is "cryoblation"? is it the same as radio frequency ablation
or is it a particular area being ablated?
I went into hospital last April with the view to ablation but after
having an electrophysiology study done there was no visible, safe
pathway that suggested i had SVT (which is what my diagnosis had been
for years).....However, the girl in the next bed to me had successful
ablation and honestly looked fine when she come back to the ward and
said it was ok and not painful...you should get something to calm you
while they are doing the EP study in the first instance and the only
thing i felt during that was as if there was something in my throat
but it was not sore...I wish you all the best and hope you have a
successful ablation and your quality of life increases as a
result...please let me know how you get on!
Best Wishes,
Kathleen
  In heartrhythm-AA@yahoogroups.com, "ecoangel77" wrote:
>
> I was wondering whether anyone else suffered with fatigue as well as
> SVT, not when there is SVT occuring but as well as having the
> condition.
> My name is Melanie and I had my first episode when I was 19, I am now
> 29. For the first 7 years, I didn't worry too much because it only
> occured a few times and would stop. The last 3 episodes were very
> unpleasant and involved me going to hospital, the first 2 times they
> stopped after an hour to a half, the last time they continued for 2
> hours and I had to be injected to stop them. The last episode was in
> April and it has really affected me, I worry a lot about a repeat
> episode, which led to sleep problems, but this is improving.
> I am considering and have been booked in for a cryoblation, has anyone
> had ablation on this site?, I am very nervous but I thought it would
> be the safest option as the affected area is so close to the AV node.
> If any of this sounds familiar to you please get in contact.
>

I was wondering whether anyone else suffered with fatigue as well as
SVT, not when there is SVT occuring but as well as having the
condition.
My name is Melanie and I had my first episode when I was 19, I am now
29. For the first 7 years, I didn't worry too much because it only
occured a few times and would stop. The last 3 episodes were very
unpleasant and involved me going to hospital, the first 2 times they
stopped after an hour to a half, the last time they continued for 2
hours and I had to be injected to stop them. The last episode was in
April and it has really affected me, I worry a lot about a repeat
episode, which led to sleep problems, but this is improving.
I am considering and have been booked in for a cryoblation, has anyone
had ablation on this site?, I am very nervous but I thought it would
be the safest option as the affected area is so close to the AV node.
If any of this sounds familiar to you please get in contact.

Just confirming that I may wish to send messages to
the group.





___________________________________________________________
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Hello

I hope this helps someone: I was 18 when I experienced my first
palpitations on nights as a policeman, eventually I lost my job as a
policeman and became a house dad (1987). Health continues to be a
problem but more on the gastric / bowel side as I had an ablation in
1993 which stopped the long periods of palps but not the dropped beats
and strange feelings of panic. I felt very alone back then 1987 -
1995. I am now 48 and as my youngest is 12yrs old I am back in
employment. I have theories but no time to research them or to see who
is researching what. I have problems swallowing, bloating and with
acid. I have become allergic to a number of things like sticking
plaster, creosote, modern perfumes and recently wheat. When I was
really ill back in 1993 eating food would trigger runs of palps
lasting for hours. One such run lasted for 24hrs and I was admitted,
the docs tried allsorts even stopping my heart but I obviously had a
bug or a reaction that had irritated my heart, nothing worked so they
gave me strong anti-bioctics and within a 8 hours they had stopped. I
was sent for the ablation soon after at London. Since avoiding wheat
the ectopics have really faded out. After my ablation it was six
months before I got my first run of ectopics, all the trauma of the
previous 12 months came back and i was really ill. Stress or nervy
situations really brings on the ecotopics but I could'nt sleep because
if I lay down the 'runs' would start and I thought my heart was just
going to loose its rhytmn and that would be it. I sleep in a chair for
12 weeks. The lack of sleep caused more stress so it was a vicious
circle. On one visit to the emergency doc he took pity on me and
prescribed me Diazepam. It broke the circle and things improved. It
may be psychological but I have kept them in for years, I proberly get
through 20 tabs a year but it is a comfort to know that I can have a
good nights sleep if 'the ectopics' are lurking! I was alone, I rang
the british Heart Foundation but they had never heard of the Wolfe
Parkinson Whyte syndromeyou. When i went for my abaltion it was great
to speak to other people with the condition but it was only brief as I
was about to give my bed to them. i sadly looked forward to the little
surveys that the department used to send me, sending a little note
back hoping that I would be put in touch with other sufferers. But
life has moved on, I cope better now and avoiding stress and certain
foods has helped. I am very pleased the AAA is up and running, just
being there helps and remember, you folks are not alone.

Hi
I am 43 year old female who started experiencing different arrhythmias
in November 2005
So far they have confirmed premature atrial and ventricular
contractions and some very short episodes of atrial flutter
I also get bouts of slow beats and fast beats - my heart will beat
between 50 and 56 beats per minute for hours and then change for no
reason to somewhere in the 90's going up to around 120 beats per min
for hours!! The high rates don't happen as often as the low rates
though and these have not yet been captured on ecg - they never happen
when im near an ecg machine lol!
I also take thyroxine hormone for underactive thyroid and the doctors
at the moment think this maybe a factor in my problem and keep
altering my dose - things get better for a while but it never lasts -
and as you say mine are worse week of ovulation not week of my period
- so hormones are involved for me too
It has totally changed me and my life - I am no longer the carefree
individual I used to be and constantly dread bouts of ectopic beats
etc - for me the ectopics are the worse - I hate the sensation and the
awful pause then thud in the chest they produce - my doctor thinks
they are also stress related but wont give me anything for the
stress!! Very helpful lol! I have told him that the ectopics come
first - stress afterwards - they cause the anxiety for me
I have had many ecgs - trips to A & E - stress test - all come out
fine - havent had an echocardiogram yet as they don't think its
necessary and im not insured so cant afford private
I also have a constant lump in my throat and lots of phlegm - docs
said it was gerd and gave me proton pump inhibitors to reduce stomach
acid - this had no effect - so they sent me for an endoscopy - my
oesophagus in normal - so I am going to ask for my thyroid to be
scanned next
Anyway it is always good to talk to someone who has similar symptoms -
so you don't feel like you're the only one living their life around
their irritable heart!!
Take care
Lynne

Hi
I am 43 year old female who started experiencing different arrhythmias
in November 2005
So far they have confirmed premature atrial and ventricular
contractions and some very short episodes of atrial flutter
I also get bouts of slow beats and fast beats - my heart will beat
between 50 and 56 beats per minute for hours and then change for no
reason to somewhere in the 90's going up to around 120 beats per min
for hours!! The high rates don't happen as often as the low rates
though and these have not yet been captured on ecg - they never happen
when im near an ecg machine lol!
I also take thyroxine hormone for underactive thyroid and the doctors
at the moment think this maybe a factor in my problem and keep
altering my dose - things get better for a while but it never lasts -
and as you say mine are worse week of ovulation not week of my period
- so hormones are involved for me too
It has totally changed me and my life  - I am no longer the carefree
individual I used to be and constantly dread bouts of ectopic beats
etc - for me the ectopics are the worse - I hate the sensation and the
awful pause then thud in the chest they produce  - my doctor thinks
they are also stress related but wont give me anything for the
stress!! Very helpful lol! I have told him that the ectopics come
first - stress afterwards - they cause the anxiety for me
I have had many ecgs - trips to A & E - stress test - all come out
fine - havent had an echocardiogram yet as they don't think its
necessary and im not insured so cant afford private
I also have a constant lump in my throat and lots of phlegm - docs
said it was gerd and gave me proton pump inhibitors to reduce stomach
acid - this had no effect - so they sent me for an endoscopy - my
oesophagus in normal - so I am going to ask for my thyroid to be
scanned next
Anyway it is always good to talk to someone who has similar symptoms -
so you don't feel like you're the only one living their life around
their irritable heart!!
Take care
Lynne

--- In heartrhythm-AA@yahoogroups.com, "hrt_rhythm" <heartrhythm@...>
wrote:
>
> Hello my name is Pauline and I am the helpline operator and
> administrator for the Arrhythmia Alliance.
> Welcome to this new Arrhythmia community for everyone to share their
> experiences, views and information.
> I hope that you will all make use of this new facility and find it
> helpful.
>
> Kind regards, Pauline
>
Hi Pauline,
I registered with the yahoo messaging board afrer your email saying
there had been a good response to my bit in the AA ebulletin this
month...but there seems to be no postings?? Im not quite sure how this
site works...any ideas?
Kind regards,
Kathleen

Hello my name is Pauline and I am the helpline operator and
administrator for the Arrhythmia Alliance.
Welcome to this new Arrhythmia community for everyone to share their
experiences, views and information.
I hope that you will all make use of this new facility and find it
helpful.

Kind regards, Pauline