Re: Greetings from Norway: I'm back

[Guest guest]

OMG I usually only listen. But had to chime in. I have LQTS also and was implanted in 2005 and no more pro blems...I take Toprol XL. Until you find out if u have LQTS be very careful of meds, talk to ur docs. If you DO have LQTS, Coradrone is an absolute no no. Go to www. arizonacert.org. There is a list of known drugs to avoid. They can actually put you in Torsades. There are very few docs that are good at detecting this....I had some wrong diagnosis lucky to be here. I finally found specialist in NY to look at my records and that is how they finally got me fixed. I had to take charge of my own health. Your immediate family should be checked as it is genetic. Sometimes a good elp can see it, sometimes they can't tell, and sometimes it hides. It may not present on all EKG's. Be sure to get an electrophysiologist that is VERY familiar with this stuff, I was seen by 5 docs and told possible LQTS to being cleared of it from some good docs in Houston until I found the right team of docs that knew what to look for. . I continued to faint and even had some VT that they missed! Good luck in diagnosis....once you get it diagnosed (if it is LQTS) it is fairly easy to regulate. I would discuss the meds asap with doc just in case it is, this could be causing this! Glad you have ICD.Judi in LouisianaSent via BlackBerry by AT&TFrom: "Janne" Date: Sun, 14 Dec 2008 23:23:30 +0100< >Subject: Greetings from Norway: I'm back Hello, I’m Janne, I joined the Zap list after I had my ICD implanted in March 2006. Unfortunately I dropped out shortly after because of other health issues comimg up (sudden & seriously) in my family. I've had a full time job lately and didn't need any treatments from my ICD until a few weeks ago, when I experienced an " electrical storm " due to lots of VTs and VFs, the latter of type Torsades de Pointes. I was put on Cordarone, at first IV and then pills. After staying at home for two weeks I had another defib event, so I had to double the Cordarone to 400 mg pr. day… My cardio probably was redusing the dose too fast, all when I was hospitalized, at least that was the explanation given by the el-phys. I was never anxious before about having this device in my body (though I’m living alone), but now the thought of another el storm scares me. Being alone at nighttime is the hardest thing… I also don’t know why it happened. I have no ischemia/vascular heart disease (EF good, 67). May be LQTS or ARVD/C. Gene tests are pending. I am so glad to know about this group and all you wonderful people! When lying there at the ER - feeling shaky while getting Cordarone IV to stable my heart rhythm - I managed to calm down by thinking of Stacie’s “shocking life for shocking people” – and it even made me smile a little. Thank you, Stacie! And thanks to those of you who replied to my messages more than two yars ago, I am sorry for not writing back. I have to admit though that I have been lurking a few times during this period - without participating, partly because it’s hard and takes time to write in English (I have to use my brain, LoL). That’s all for now, I’ll try to read some new & old group messages today. Thanks for listening Best wishes, Janne

[Guest guest]

aww janne your welcome but i am sorry to hear you had a "shocking exprince" but sometimes those are needed it is scarey none the less but sometimes all things worth while scare us a bit ! i think we all have fears of shocks but i dont thnk we always veiw thim as good things the thing that mostly runs through are mnds is what if it dont work ? what if the firsted shock sdont work will i need another? whys it shocking me ohmy gosh it really needed i could have die these are very scarey thoughts but they are natural and beig shaky after a shock is to what you have to remindber is it did it's job it saved your life be prould to have a icd not scared of it yesbif you where shocked then it had to be a reason good or bad but be thinkful it was there but dont be ashamed

to be scared just remindber being scared is normal and is okay i think we all are i know i get scared alot when i get shocked but my mian wonder is how minny wil it take will it shock me enough will it work but i'm always always thinkful and it does scared everyoen to a point but it's soemthign that will happen and you are lucky enough honored enough to have a icd with you 24/7 365 (that dont take holidays off ) there to save your life it's a gift a honor something that should be respected and treated like a hero where all scared to a point of die but being scared is normal i truley hope they find a treatment for you and truley home the meds adjustment works i'm on 400mg of cordrone as well ad three ther antiarythmia meds it's hard to control the uncontrolible and unfornatly arrythmias and icd shocked are both there and uncontrolible but when faceing fear fac it knowing that without what you fear mosted you would not stil be here !

sorry for going on and on i truely do hope that the med change helps you you will be in my thoughts glad your back

staccie shocking life for shocking people ! and kira service dog and here (leanign cardica alerting )

From: Janne <sjoskog@...> Sent: Sunday, December 14, 2008 5:23:30 PMSubject: Greetings from Norway: I'm back

Hello, I’m Janne,

I joined the Zap list after I had my ICD implanted in March 2006. Unfortunately I dropped out shortly after because of other health issues comimg up (sudden & seriously) in my family.

I've had a full time job lately and didn't need any treatments from my ICD until a few weeks ago, when I experienced an "electrical storm" due to lots of VTs and VFs, the latter of type Torsades de Pointes. I was put on Cordarone, at first IV and then pills. After staying at home for two weeks I had another defib event, so I had to double the Cordarone to 400 mg pr. day… My cardio probably was redusing the dose too fast, all when I was hospitalized, at least that was the explanation given by the el-phys.

I was never anxious before about having this device in my body (though I’m living alone), but now the thought of another el storm scares me. Being alone at nighttime is the hardest thing… I also don’t know why it happened. I have no ischemia/vascular heart disease (EF good, 67). May be LQTS or ARVD/C. Gene tests are pending.

I am so glad to know about this group and all you wonderful people! When lying there at the ER - feeling shaky while getting Cordarone IV to stable my heart rhythm - I managed to calm down by thinking of Stacie’s “shocking life for shocking people” – and it even made me smile a little. Thank you, Stacie!

And thanks to those of you who replied to my messages more than two yars ago, I am sorry for not writing back. I have to admit though that I have been lurking a few times during this period - without participating, partly because it’s hard and takes time to write in English (I have to use my brain, LoL).

That’s all for now, I’ll try to read some new & old group messages today.

Thanks for listening

Best wishes,

Janne

[Guest guest]

Thanks Judi, I apprecciate your information. I actually had most of

the TdP (Torsades) before I started the Cordarone. I was on

beta-blockers (metoprolol) already, continueing the same dose: 100

mg/day. But back in 2006 when I had non-sustained VT at >300 bpm and

got my ICD (I need the pacemaker part as well because of concominant

AV block)- and this time too - I was taking anti-histamines:

Loratadin. The docs did't comment it.

BTW, I found this article at PubMed (2000): " Dramatic inhibition of

amiodarone metabolism induced by grapefruit juice. " Anyone on

Cordarone being warned about this?

I am to see my cardio on Thursday, I hope the LQTS result will be in

by then. The ARVD testing are done in Canada and will probably need

more time. Fortunately I use no other drugs from the lists at www.

arizonacert.org. I'm lucky to be seeing the regarded best el-phys in

my country.

My eldest brother died suddenly at nighttime many years ago at the age

of 53 (I am 59). He suffered from syncope for many years and was on

some sort of heartmeds. Docs said it wasn't dangerous... Autopsy was

not performed, his wife was in shock and didn't allow it. Now she regrets.

Thanks again, glad to hear you're doing fine!

Janne

>

> OMG I usually only listen. But had to chime in. I have LQTS also

and was implanted in 2005 and no more pro blems...I take Toprol XL.

> Until you find out if u have LQTS be very careful of meds, talk to

ur docs. If you DO have LQTS, Coradrone is an absolute no no. Go to

www. arizonacert.org. There is a list of known drugs to avoid. They

can actually put you in Torsades. There are very few docs that are

good at detecting this....I had some wrong diagnosis lucky to be here.

I finally found specialist in NY to look at my records and that is

how they finally got me fixed. I had to take charge of my own health.

Your immediate family should be checked as it is genetic. Sometimes a

good elp can see it, sometimes they can't tell, and sometimes it

hides. It may not present on all EKG's. Be sure to get an

electrophysiologist that is VERY familiar with this stuff, I was seen

by 5 docs and told possible LQTS to being cleared of it from some

good docs in Houston until I found the right team of docs that knew

what to look for. . I continued to faint and even had some VT that

they missed! Good luck in diagnosis....once you get it diagnosed (if

it is LQTS) it is fairly easy to regulate. I would discuss the meds

asap with doc just in case it is, this could be causing this! Glad

you have ICD.

> Judi in Louisiana

> Sent via BlackBerry by AT & T

>

> Greetings from Norway: I'm back

>

>

> Hello, I'm Janne,

>

> I joined the Zap list after I had my ICD implanted in March 2006.

> Unfortunately I dropped out shortly after because of other health issues

> comimg up (sudden & seriously) in my family.

>

>

>

> I've had a full time job lately and didn't need any treatments from

my ICD

> until a few weeks ago, when I experienced an " electrical storm " due

to lots

> of VTs and VFs, the latter of type Torsades de Pointes. I was put on

> Cordarone, at first IV and then pills. After staying at home for two

weeks I

> had another defib event, so I had to double the Cordarone to 400 mg

pr. day.

> My cardio probably was redusing the dose too fast, all when I was

> hospitalized, at least that was the explanation given by the el-phys.

>

>

>

> I was never anxious before about having this device in my body

(though I'm

> living alone), but now the thought of another el storm scares me. Being

> alone at nighttime is the hardest thing. I also don't know why it

happened.

> I have no ischemia/vascular heart disease (EF good, 67). May be LQTS or

> ARVD/C. Gene tests are pending.

>

>

>

> I am so glad to know about this group and all you wonderful people!

When

> lying there at the ER - feeling shaky while getting Cordarone IV to

stable

> my heart rhythm - I managed to calm down by thinking of Stacie's

" shocking

> life for shocking people " - and it even made me smile a little.

Thank you,

> Stacie!

>

>

>

> And thanks to those of you who replied to my messages more than two yars

> ago, I am sorry for not writing back. I have to admit though that I have

> been lurking a few times during this period - without participating,

partly

> because it's hard and takes time to write in English (I have to use my

> brain, LoL).

>

>

>

> That's all for now, I'll try to read some new & old group messages

today.

>

>

>

> Thanks for listening

>

>

>

> Best wishes,

>

> Janne

>

[Guest guest]

Stacie, thanks for your reply! I've always looked at the ICD as a

security item and I'm really glad it did it's job as a lifesaver when

needed. But as you mensioned, the scary thoughts are " will it work

next time? " " will it manage to control an eventually new storm? "

Anxienty is difficult controlling too... But when I read about all

your events through so many years I realize one can live a long time

with the device. You are a brave person and you're giving a great

support to us newbees to these experiences, thank you once again, Stacie

I'm so sorry for the loss of your former service dog. It's hard to

lose a loved animal whatsoever. Glad you have Kira now.

Janne

>

> aww janne your welcome but i am sorry to hear you had a " shocking

exprince " but sometimes those are needed it is scarey none the less

but sometimes all things worth while scare us a bit ! i think we all

have fears of shocks but i dont thnk we always veiw thim as good

things the thing that mostly runs through are mnds is what if it dont

work ? what if the firsted shock sdont work will i need another? whys

it shocking me ohmy gosh it really needed i could have die these are

very scarey thoughts  but they are natural and beig shaky after a

shock is to what you have to remindber is it did it's job it saved

your life be prould to have a icd not scared of it yesbif you where

shocked  then it had to be a reason good or bad but  be thinkful  it

was there but dont be ashamed to be scared  just remindber being

scared is normal and is okay i think we all are i know i get scared

alot when i get shocked but my mian wonder is how minny wil it take

will it

> shock me enough will it work but i'm always always thinkful and it

does scared everyoen to a point  but it's soemthign that will happen

and you are lucky enough honored enough to have a icd with you 24/7

365 (that dont take holidays off ) there to save your life it's a gift

a honor something that should be respected and treated like a hero

where all scared to a point of die but being scared is normal i truley

hope they find a treatment for you and truley home the meds adjustment

works i'm on 400mg of cordrone as well ad three ther antiarythmia meds

it's hard to control the uncontrolible and unfornatly arrythmias and

icd shocked are both there and uncontrolible  but when faceing fear

fac it knowing that without what you fear mosted you would not stil be

here ! sorry for going on and on i truely do hope that the med change

helps you  you will be in my thoughts glad your back

>

> staccie shocking life for shocking people ! and kira service dog and

here (leanign cardica alerting )

>

>

>

>

> ________________________________

> From: Janne <sjoskog@...>

>

> Sent: Sunday, December 14, 2008 5:23:30 PM

> Subject: Greetings from Norway: I'm back

>

>

> Hello, I'm Janne,

> I joined the Zap list after I had my ICD implanted in March 2006.

Unfortunately I dropped out shortly after because of other health

issues comimg up (sudden & seriously) in my family.

>  

> I've had a full time job lately and didn't need any treatments from

my ICD until a few weeks ago, when I experienced an " electrical storm "

due to lots of VTs and VFs, the latter of type Torsades de Pointes. I

was put on Cordarone, at first IV and then pills. After staying at

home for two weeks I had another defib event, so I had to double the

Cordarone to 400 mg pr. day…  My cardio probably was redusing the dose

too fast, all when I was hospitalized, at least that was the

explanation given by the el-phys.

>  

> I was never anxious before about having this device in my body

(though I'm living alone), but now the thought of another el storm

scares me. Being alone at nighttime is the hardest thing… I also don't

know why it happened. I have no ischemia/vascular heart disease (EF

good, 67).  May be LQTS or ARVD/C. Gene tests are pending.

>  

> I am so glad to know about this group and all you wonderful people! 

When lying there at the ER - feeling shaky while getting Cordarone IV

to stable my heart rhythm - I managed to calm down by thinking of

Stacie's " shocking life for shocking people " – and it even made me

smile a little. Thank you, Stacie!

>  

> And thanks to those of you who replied to my messages more than two

yars ago, I am sorry for not writing back. I have to admit though that

I have been lurking a few times during this period - without

participating, partly because it's hard and takes time to write in

English (I have to use my brain, LoL).  

>  

> That's all for now, I'll try to read some new & old group messages

today.

>  

> Thanks for listening

>  

> Best wishes,

> Janne

>  

>  

>  

>  

>  

>  

>

[Guest guest]

>

> Hello, I'm Janne,

>

Hi Janne,

I'm so sorry to hear about your electrical storm. They are terribly

scary, especially when alone. It sounds like you may be developing

what is called post traumatic delayed stress (PTDS)It's common for

people which have ICDs who have experienced shocks. Talk to your

primary care doctor about it. It may be you need to follow-up with a

therapist. Don't let your fear and anxiety get a hold of you too

strongly before getting help.

I was alone when I had my electrical storm and in my case there was no

one in our whole neighborhood. I was shocked 10 times in 20 minutes

and I had felt fine. That's the hard part is feeling fine and getting

shocked. There is no way to plan or prepare for it.

Good luck

> I joined the Zap list after I had my ICD implanted in March 2006.

> Unfortunately I dropped out shortly after because of other health issues

> comimg up (sudden & seriously) in my family.

>

>

>

> I've had a full time job lately and didn't need any treatments from

my ICD

> until a few weeks ago, when I experienced an " electrical storm " due

to lots

> of VTs and VFs, the latter of type Torsades de Pointes. I was put on

> Cordarone, at first IV and then pills. After staying at home for two

weeks I

> had another defib event, so I had to double the Cordarone to 400 mg

pr. day.

> My cardio probably was redusing the dose too fast, all when I was

> hospitalized, at least that was the explanation given by the el-phys.

>

>

>

> I was never anxious before about having this device in my body

(though I'm

> living alone), but now the thought of another el storm scares me. Being

> alone at nighttime is the hardest thing. I also don't know why it

happened.

> I have no ischemia/vascular heart disease (EF good, 67). May be LQTS or

> ARVD/C. Gene tests are pending.

>

>

>

> I am so glad to know about this group and all you wonderful people!

When

> lying there at the ER - feeling shaky while getting Cordarone IV to

stable

> my heart rhythm - I managed to calm down by thinking of Stacie's

" shocking

> life for shocking people " - and it even made me smile a little.

Thank you,

> Stacie!

>

>

>

> And thanks to those of you who replied to my messages more than two yars

> ago, I am sorry for not writing back. I have to admit though that I have

> been lurking a few times during this period - without participating,

partly

> because it's hard and takes time to write in English (I have to use my

> brain, LoL).

>

>

>

> That's all for now, I'll try to read some new & old group messages

today.

>

>

>

> Thanks for listening

>

>

>

> Best wishes,

>

> Janne

>

[Guest guest]

> >

> > OMG I usually only listen. But had to chime in. I have LQTS also

> and was implanted in 2005 and no more pro blems...I take Toprol XL.

> > Until you find out if u have LQTS be very careful of meds, talk to

> ur docs. If you DO have LQTS, Coradrone is an absolute no no. Go to

> www. arizonacert.org. There is a list of known drugs to avoid. They

> can actually put you in Torsades. There are very few docs that are

> good at detecting this....I had some wrong diagnosis lucky to be here.

> I finally found specialist in NY to look at my records and that is

> how they finally got me fixed. I had to take charge of my own health.

> Your immediate family should be checked as it is genetic. Sometimes a

> good elp can see it, sometimes they can't tell, and sometimes it

> hides. It may not present on all EKG's. Be sure to get an

> electrophysiologist that is VERY familiar with this stuff, I was seen

> by 5 docs and told possible LQTS to being cleared of it from some

> good docs in Houston until I found the right team of docs that knew

> what to look for. . I continued to faint and even had some VT that

> they missed! Good luck in diagnosis....once you get it diagnosed (if

> it is LQTS) it is fairly easy to regulate. I would discuss the meds

> asap with doc just in case it is, this could be causing this! Glad

> you have ICD.

> > Judi in Louisiana

> > Sent via BlackBerry by AT & T

> >

> > Greetings from Norway: I'm back

> >

> >

> > Hello, I'm Janne,

> >

> > I joined the Zap list after I had my ICD implanted in March 2006.

> > Unfortunately I dropped out shortly after because of other health

issues

> > comimg up (sudden & seriously) in my family.

> >

> >

> >

> > I've had a full time job lately and didn't need any treatments from

> my ICD

> > until a few weeks ago, when I experienced an " electrical storm " due

> to lots

> > of VTs and VFs, the latter of type Torsades de Pointes. I was put on

> > Cordarone, at first IV and then pills. After staying at home for two

> weeks I

> > had another defib event, so I had to double the Cordarone to 400 mg

> pr. day.

> > My cardio probably was redusing the dose too fast, all when I was

> > hospitalized, at least that was the explanation given by the el-phys.

> >

> >

> >

> > I was never anxious before about having this device in my body

> (though I'm

> > living alone), but now the thought of another el storm scares me.

Being

> > alone at nighttime is the hardest thing. I also don't know why it

> happened.

> > I have no ischemia/vascular heart disease (EF good, 67). May be

LQTS or

> > ARVD/C. Gene tests are pending.

> >

> >

> >

> > I am so glad to know about this group and all you wonderful people!

> When

> > lying there at the ER - feeling shaky while getting Cordarone IV to

> stable

> > my heart rhythm - I managed to calm down by thinking of Stacie's

> " shocking

> > life for shocking people " - and it even made me smile a little.

> Thank you,

> > Stacie!

> >

> >

> >

> > And thanks to those of you who replied to my messages more than

two yars

> > ago, I am sorry for not writing back. I have to admit though that

I have

> > been lurking a few times during this period - without participating,

> partly

> > because it's hard and takes time to write in English (I have to use my

> > brain, LoL).

> >

> >

> >

> > That's all for now, I'll try to read some new & old group messages

> today.

> >

> >

> >

> > Thanks for listening

> >

> >

> >

> > Best wishes,

> >

> > Janne

> >

>

[Guest guest]

Hi Bonnie,

Thank you for your advice. I wonder if my " sleep apnea " like episodes

also are kind of PTDS? When I'm about to go to sleep I wake up

repeatedly with the feeling that I have stopped breathing for a

while... I otherwise sleep well with no need for sleeping pills etc.,

despite the anxiousness.

I too live alone countryside with no close neighbours. It's ok when

I'm feeling well. But nowadays I'm not. I really don't understand my

breathlessnes for notthing when my heart function is supposed to be

good. Especially bending and walking stairs bothers me a lot. I will

discuss this with my cardio.

I don't know your background but I wish you good luck too

Janne

>

> > Hi Janne,

>

> I'm so sorry to hear about your electrical storm. They are terribly

> scary, especially when alone. It sounds like you may be developing

> what is called post traumatic delayed stress (PTDS)It's common for

> people which have ICDs who have experienced shocks. Talk to your

> primary care doctor about it. It may be you need to follow-up with a

> therapist. Don't let your fear and anxiety get a hold of you too

> strongly before getting help.

>

> I was alone when I had my electrical storm and in my case there was no

> one in our whole neighborhood. I was shocked 10 times in 20 minutes

> and I had felt fine. That's the hard part is feeling fine and getting

> shocked. There is no way to plan or prepare for it.

>

> Good luck

>

> > I joined the Zap list after I had my ICD implanted in March 2006.

> > Unfortunately I dropped out shortly after because of other health

issues

> > comimg up (sudden & seriously) in my family.

> >

> >

> >

> > I've had a full time job lately and didn't need any treatments from

> my ICD

> > until a few weeks ago, when I experienced an " electrical storm " due

> to lots

> > of VTs and VFs, the latter of type Torsades de Pointes. I was put on

> > Cordarone, at first IV and then pills. After staying at home for two

> weeks I

> > had another defib event, so I had to double the Cordarone to 400 mg

> pr. day.

> > My cardio probably was redusing the dose too fast, all when I was

> > hospitalized, at least that was the explanation given by the el-phys.

> >

> >

> >

> > I was never anxious before about having this device in my body

> (though I'm

> > living alone), but now the thought of another el storm scares me.

Being

> > alone at nighttime is the hardest thing. I also don't know why it

> happened.

> > I have no ischemia/vascular heart disease (EF good, 67). May be

LQTS or

> > ARVD/C. Gene tests are pending.

> >

> >

> >

> > I am so glad to know about this group and all you wonderful people!

> When

> > lying there at the ER - feeling shaky while getting Cordarone IV to

> stable

> > my heart rhythm - I managed to calm down by thinking of Stacie's

> " shocking

> > life for shocking people " - and it even made me smile a little.

> Thank you,

> > Stacie!

> >

> >

> >

> > And thanks to those of you who replied to my messages more than

two yars

> > ago, I am sorry for not writing back. I have to admit though that

I have

> > been lurking a few times during this period - without participating,

> partly

> > because it's hard and takes time to write in English (I have to use my

> > brain, LoL).

> >

> >

> >

> > That's all for now, I'll try to read some new & old group messages

> today.

> >

> >

> >

> > Thanks for listening

> >

> >

> >

> > Best wishes,

> >

> > Janne

> >

>

[Guest guest]

Hi Janne,

Welcome back! I was diagnosed with LQTS after 2 syncope spells in a week. I had the defib implanted in Feb, 06 (I am now 26, had just turned 24 at that point).

Back in October of this year my defib went a little nuts and shocked me 4 times in 5 minutes, woke me up from a very deep sleep! I had one of those defective wires so the shocks were not necessary.

The cardio/EP at the hospital had never seen me before but said he would never have given me a defib, that I was borderline LQT and that there are other therapies available. He then called my regular cardio/EP and she said the same thing. The odd thing to me was, why had she never said this to me before?

I was VERY fortunate to already have an appointment set up with a LQT/sudden death specialist at the Mayo clinic here in Rochester, MN. He suggested I do the genetic testing. I really trust this doctor because it is his specialty and he is a pioneer in this field. He said he had no doubt that I have LQT, and he was pretty sure I had LQT1. I was unaware that there are several types of LQT and that there are different therapies available for each one. I completed the genetic testing (took 7 weeks for my results and it cost $5,400 - thank goodness for insurance)! I do have LQT1 and I know it for sure.

The doc at the Mayo said with LQT1, he would never have suggested a defib either, that it is the toughest therapy there is. His first choice is a beta blocker, Nadolol. I have been taking this since October and hate it. His second option is a deinervation (spelling?) surgery where they basically destroy the nerves that work with adrenaline. His third option is to turn the ICD back on and fix the lead. I am still not sure what I want to do. I live in fear of unnecessary shocks but I also live in fear of death that might have been prevented. The genetic testing is a wonderful tool and a good doctor is key!

It took me a long time and a lot of therapy to get over the anxiety that I first had. Ever since my last episode the anxiety has returned in a harsh way but I know I still have to work and go to school so I just mentally try to deal with it. When I have a panic attack there is nothing more that I want then to hide. I really hope the genetic testing gives you answers and I hope that you can overcome the fear! I know it's easier said then done! I certainly look up to people like Stacie for their strength and courage!

Best of luck and I wish you good health and happiness for the New Year!

in Minneapolis, MN where it was -5 this morning!! Brrrrr!!

From: Janne <sjoskog@...>Subject: Greetings from Norway: I'm back Date: Sunday, December 14, 2008, 4:23 PM

Hello, I’m Janne,

I joined the Zap list after I had my ICD implanted in March 2006. Unfortunately I dropped out shortly after because of other health issues comimg up (sudden & seriously) in my family.

I've had a full time job lately and didn't need any treatments from my ICD until a few weeks ago, when I experienced an "electrical storm" due to lots of VTs and VFs, the latter of type Torsades de Pointes. I was put on Cordarone, at first IV and then pills. After staying at home for two weeks I had another defib event, so I had to double the Cordarone to 400 mg pr. day… My cardio probably was redusing the dose too fast, all when I was hospitalized, at least that was the explanation given by the el-phys.

I was never anxious before about having this device in my body (though I’m living alone), but now the thought of another el storm scares me. Being alone at nighttime is the hardest thing… I also don’t know why it happened. I have no ischemia/vascular heart disease (EF good, 67). May be LQTS or ARVD/C. Gene tests are pending.

I am so glad to know about this group and all you wonderful people! When lying there at the ER - feeling shaky while getting Cordarone IV to stable my heart rhythm - I managed to calm down by thinking of Stacie’s “shocking life for shocking people” – and it even made me smile a little. Thank you, Stacie!

And thanks to those of you who replied to my messages more than two yars ago, I am sorry for not writing back. I have to admit though that I have been lurking a few times during this period - without participating, partly because it’s hard and takes time to write in English (I have to use my brain, LoL).

That’s all for now, I’ll try to read some new & old group messages today.

Thanks for listening

Best wishes,

Janne

[Guest guest]

Thank you, , for sharing your story. It must be so difficult

for you to make up your mind about what to do. I just know that for

two and a half years I didn't know if I really needed the device,

though I still regarded it as a security. Having the ICD made it

easier for me living alone.

I didn't see my ordinary cardio as she's sick (!), and unfortunately I

din't feel comfortable with the one I got to see. He told me not to

ask too many questions... I have to continue the 400 mg /day

Cordarone dosage, and also wait for the gene test results, until my EP

scedule in February.

I haven't replied until now because I have been careing for a very

sick pet, a cat who has been with me for more than 14 years. A most

loving creature, It was so awfully sad to let him go, but finally I

had no opportunity.

Otherwise I feel better now, it's even ok to be alone at night... But

I don't know why I'm experiencing shortness of breath and sweating for

almost notthing. Out of shape, but still... I don't think it's panic

attacs because i have no other such symptoms and it happens even when

I feel calm and safe. May be side effects from the meds.

I wish you a happy new year and the best decision for yourself

regarding the ICD!

Janne in Norway

--- I have to stay on the In , Crone

<marshmello1982@...> wrote:

>

> Hi Janne,

> Welcome back!  I was diagnosed with LQTS after 2 syncope spells in a

week.  I had the defib implanted in Feb, 06 (I am now 26, had just

turned 24 at that point). 

> Back in October of this year my defib went a little nuts and shocked

me 4 times in 5 minutes, woke me up from a very deep sleep!  I had one

of those defective wires so the shocks were not necessary. 

>  

> The cardio/EP at the hospital had never seen me before but said he

would never have given me a defib, that I was borderline LQT and that

there are other therapies available.  He then called my regular

cardio/EP and she said the same thing.  The odd thing to me was, why

had she never said this to me before?

>  

> I was VERY fortunate to already have an appointment set up with a

LQT/sudden death specialist at the Mayo clinic here in Rochester, MN. 

He suggested I do the genetic testing.  I really trust this doctor

because it is his specialty and he is a pioneer in this field.  He

said he had no doubt that I have LQT, and he was pretty sure I had

LQT1.  I was unaware that there are several types of LQT and that

there are different therapies available for each one.  I completed the

genetic testing (took 7 weeks for my results and it cost $5,400 -

thank goodness for insurance)!  I do have LQT1 and I know it for sure. 

>  

> The doc at the Mayo said with LQT1, he would never have suggested a

defib either, that it is the toughest therapy there is.  His first

choice is a beta blocker, Nadolol.  I have been taking this since

October and hate it.  His second option is a deinervation (spelling?)

surgery where they basically destroy the nerves that work with

adrenaline.  His third option is to turn the ICD back on and fix the

lead.  I am still not sure what I want to do.  I live in fear of

unnecessary shocks but I also live in fear of death that might have

been prevented.  The genetic testing is a wonderful tool and a good

doctor is key! 

>  

> It took me a long time and a lot of therapy to get over the anxiety

that I first had.  Ever since my last episode the anxiety has returned

in a harsh way but I know I still have to work and go to school so I

just mentally try to deal with it.  When I have a panic attack there

is nothing more that I want then to hide.  I really hope the genetic

testing gives you answers and I hope that you can overcome the fear! 

I know it's easier said then done!  I certainly look up to people like

Stacie for their strength and courage!

>  

> Best of luck and I wish you good health and happiness for the New Year!

>  

> in Minneapolis, MN where it was -5 this morning!!  Brrrrr!!

>

>

>

> From: Janne <sjoskog@...>

> Subject: Greetings from Norway: I'm back

>

> Date: Sunday, December 14, 2008, 4:23 PM

>

>

>

>

>

>

>

>

> Hello, I'm Janne,

> I joined the Zap list after I had my ICD implanted in March 2006.

Unfortunately I dropped out shortly after because of other health

issues comimg up (sudden & seriously) in my family.

>  

> I've had a full time job lately and didn't need any treatments from

my ICD until a few weeks ago, when I experienced an " electrical storm "

due to lots of VTs and VFs, the latter of type Torsades de Pointes. I

was put on Cordarone, at first IV and then pills. After staying at

home for two weeks I had another defib event, so I had to double the

Cordarone to 400 mg pr. day…  My cardio probably was redusing the dose

too fast, all when I was hospitalized, at least that was the

explanation given by the el-phys.

>  

> I was never anxious before about having this device in my body

(though I'm living alone), but now the thought of another el storm

scares me. Being alone at nighttime is the hardest thing… I also don't

know why it happened. I have no ischemia/vascular heart disease (EF

good, 67).  May be LQTS or ARVD/C. Gene tests are pending.

>  

> I am so glad to know about this group and all you wonderful people! 

When lying there at the ER - feeling shaky while getting Cordarone IV

to stable my heart rhythm - I managed to calm down by thinking of

Stacie's " shocking life for shocking people " – and it even made me

smile a little. Thank you, Stacie!

>  

> And thanks to those of you who replied to my messages more than two

yars ago, I am sorry for not writing back. I have to admit though that

I have been lurking a few times during this period - without

participating, partly because it's hard and takes time to write in

English (I have to use my brain, LoL).  

>  

> That's all for now, I'll try to read some new & old group messages

today.

>  

> Thanks for listening

>  

> Best wishes,

> Janne

>  

>  

>  

>  

>  

>  

>