I would love to help out with a support group.

Mike McLane
--- Snowy <akgem@...> wrote:
>  Hi Everyone,  I have started a Support Community
> and was hoping that you
> would check it out and maybe give me feedback about
> it? I would really like
> to move the group to this board. But I won't shut
> this board down yet!
> Anyway I would really appreciate the help!
>
>
>
http://s4.invisionfree.com/mvpafibsupport/index.php?act=idx
>
>
>
-----------------------------------------------------------------------
>
> Visit the Angel's Cafe an online community just for
> us women! Grab some coffee and chat with us!
> http://s4.invisionfree.com/Angels_Cafe/index.php
>
> [Non-text portions of this message have been
> removed]
>
>


__________________________________
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I don't think there are any answers for that. MVP isn't supposed to be life
threatening for those of us who know about it. If you know something is
wrong you do things differently and you feel things go wrong. If your
daughter didn't know anything was wrong then there is nothing you could have
done. Many people have mvp and never know there is anything wrong and then
some people have it and know whats wrong. I am sincerely sorry for your loss
  I wish I had some answers for you but I don't. Living with MVP I live every
day like its my last because you never know what can happen. Wishing you the
best and I hope you find your answers. Colleen


Visit the Angel's Cafe an online community just for us women! Grab some coffee
and chat with us! http://s4.invisionfree.com/Angels_Cafe/index.php

[Non-text portions of this message have been removed]

Thank you for this email. Doctors have told me that
it isn't life threatening and i shouldn't do anything
different. I will now make sure i get a lot more
information on mvp if i dont get answers to my
questions. Was your daughter doing any strenous
activity anytime close to the time of her death? Did
she have any complications with her mvp when she had
her son?




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Hello,   My daughter, Lisa Beth 24,  died 13 years ago from MVP,  the
autopsy said that the valve, deteriorated and burst,  she never had
any problems,   we were always told one in a million chances that MVP
would be life threatning.   I am always wondering if something could
have been done.   It was a sudden death,   no symtoms or anything,
hker husband found her on the floor,  he had been gone for just 20-
30 minutes.   I need answers,  and wonder if there are any answers.
She left a boy Robert who is now 15,  he was almost 2 when we lost
Lisa.

Hi Everyone,  I have started a Support Community and was hoping that you
would check it out and maybe give me feedback about it? I would really like
to move the group to this board. But I won't shut this board down yet!
Anyway I would really appreciate the help!

  http://s4.invisionfree.com/mvpafibsupport/index.php?act=idx

-----------------------------------------------------------------------
Visit the Angel's Cafe an online community just for us women! Grab some coffee
and chat with us! http://s4.invisionfree.com/Angels_Cafe/index.php

[Non-text portions of this message have been removed]

Hi Debra,
I have had a murmur since I was 4 years old. I had
rheumatic fever when I was 4. I was diagnosed with a
leaky vavle about 2 years ago. Appently I have had
this all of my life and is is very slow to progress.
Anyway I have moderate leakage. The cardio said I
would possible face surgery one of these days. If the
echo show any change or if it shows my heart to be
enlarged he said more than likely I would need
surgery. So far there has been no change. I have
basically lived with this all of my life and I am 51
years old. Let me know if I can be of any help to make
you feel better about this condition. I was scared to
death when I first found out and I am still not real
comfortable with it. Hang in there. I really do not
have very many symptoms. No shortness of breath.
Occasionally my chest gets sore in spots.



Mike McLane
--- debrazwilling <debrazwilling@...> wrote:
> Although I was told about 3 years ago I have a heart
> murmur, I was
> never told exactly what was wrong.  I have since
> changed doctors
> because my symptoms of breathlessness and chest pain
> were getting
> much worse.  Found a really great cardio doc.  He
> ran alot of new
> tests including echos, cta and stress.  It seems
> that I have now a
> moderat severe or severe leakage.  Problem is I also
> am in early
> stages of COPD.  I have been put on liptor to get
> the bad stuff
> under 100 and on Altace.  I was told if my symtpoms
> do not lessen or
> if the leakage gets any worse I may be facing
> surgery.  Has anyone
> out there been where I am now.  Please let me hear
> from you because
> I am scared out of my wits.
>
>


__________________________________
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http://search.yahoo.com

Although I was told about 3 years ago I have a heart murmur, I was
never told exactly what was wrong.  I have since changed doctors
because my symptoms of breathlessness and chest pain were getting
much worse.  Found a really great cardio doc.  He ran alot of new
tests including echos, cta and stress.  It seems that I have now a
moderat severe or severe leakage.  Problem is I also am in early
stages of COPD.  I have been put on liptor to get the bad stuff
under 100 and on Altace.  I was told if my symtpoms do not lessen or
if the leakage gets any worse I may be facing surgery.  Has anyone
out there been where I am now.  Please let me hear from you because
I am scared out of my wits.

Hi Annie,
My name is Mike and I have had mvp for about 2 years
now. I have that breath hunger feeling as well. It
feels like I cant get a deep breath. I guess that goes
along with it. It is not constant but just from time
to time.

Mike McLane
--- anniebef1008 <no_reply@yahoogroups.com> wrote:
> I was diagnosed with MVP about 6 years ago.  Since
> that time I have
> suffered from insomnia (somethimes mild, sometimes
> for weeks on
> end).  I also have intermittent occurrences of
> "breath hunger", where
> I yawn constantly or can't seem to take a deep
> enough breath.  I take
> magnesium daily as well as Serax (Oxazepam) for the
> insomnia.  Does
> anyone know of anything that helps with the nervous
> system aspect of
> MVP?  I know I have to watch what I eat and drink
> and take for colds
> but perhaps there is something that minimizes the
> effect of these
> things?  Something so there isn't such an
> overreaction to stimulants.
>
>


__________________________________
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Yahoo! Finance: Get your refund fast by filing online.
http://taxes.yahoo.com/filing.html

I was diagnosed with MVP about 6 years ago.  Since that time I have
suffered from insomnia (somethimes mild, sometimes for weeks on
end).  I also have intermittent occurrences of "breath hunger", where
I yawn constantly or can't seem to take a deep enough breath.  I take
magnesium daily as well as Serax (Oxazepam) for the insomnia.  Does
anyone know of anything that helps with the nervous system aspect of
MVP?  I know I have to watch what I eat and drink and take for colds
but perhaps there is something that minimizes the effect of these
things?  Something so there isn't such an overreaction to stimulants.

Attached is a portrait painting I did as a memorial to Austin's little friend
Aleyna who passed away over the holidays. She was in his Kindergarden class. The
monarch butterfly is a gift to her from Austin, and the morning glories too.


[Non-text portions of this message have been removed]

These links can be helpful for all thoughs suspecting circulations
problems, drug sensativity, extreem temperature sensativity and
hormonal sensativity with MVP. I hope some can take advantage of the
advise to keep up blood volume with drinking lots of clean water and
gentle exersize to strengthen muscles to assist the heart and nervous
system. There is also referance to vitamin supplementation.  All this
info has been very helpful to me with mild MVP of 26 years. Blessings

Lisa

http://www.mitralvalveprolapse.com/
HELP IS AVAILABLE FOR MITRAL VALVE PROLAPSE SYNDROME AND DYSAUTONOMIA!

http://www.ndrf.org/
Welcome

http://www.mvprolapse.com/dysautonomia.html
Dysautonomia

http://www.potsplace.com/what_to_avoid.htm
What to avoid

http://www.mediscene.com/mvp/
MediScene | MVP

http://www.anxietypanic.com/mvp.html
MVP

http://home.att.net/~potsweb/POTS.html
Postural Orthostatic Tachycardia Syndrome, Patient's Report

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=101202
Gender and Cardiac Arrhythmias

http://heartdisease.about.com/cs/mvp/a/MVP.htm
Mitral valve prolapse

http://www.medhelp.org/ccf/arrhythm.htm
Heart Rhythm Disorders

I also have a bad wisdom tooth that keeps getting infected. I take
the same antibiotic as you when it does. I have chosen to not have my
wisdom tooth out, we just treat the infection when it arises. Getting
put to sleep to have it removed is no big deal and you just tell the
dentist or oral surgeon that your allergic to anything  with
epinephrine in it and  they will have to give you something else.

Annya

Actually the doctor heard the murmer on the stethescope, but on the
echo it was not diagnosed, but the echo I had 6 years ago it was
diagnosed. I asked the doc how can that be and he told me the
criteria for diagnosing mvp has changed. They don't diagnose it for
mild regurgitation anymore. Strange eh.

Annya





--- In mvpandmvpssupport@yahoogroups.com, "Lisa"
<msmerlinsmagic@y...> wrote:
> Annya,
>   It sounds like your doctor just gave you the verdict that you do
> have MVP. If the prolapse looks mild on the echo and the heart is
not
> being damaged by it and that is great news. You may never need the
> drastic proceedures to correct anything if you take good care. I
think
> a big problem with you not being informed about alot of the
> uncomfortable nervouse system imbalance symptoms that usually goes
> with MVP is because this area has been under slow study for years
> without alot of conclusions. I have had MVP for 26 years and at this
> point my heart is healthy in structure and my valve still is not
> showing dangerous backflow -meaning surgery to replace the valve is
> not necessary. With MVP you will have palpitations or as I chose
> skipped beats. If your doctor is trying to decide what area of the
> heart is irritated into the skipped beats wearing an event or
episodic
> monitor is the best bet. A 24 hour halter usually is a waste of
effort
> due to the fact that most of the time the events are sneaky and
> unrelible to record in 24 hours. An event monitor you can have at
home
> for a month and wear it when you feel symptoms to record  them.
There
> is a connection between MVP and an autonervous system imbalance
which
> is now called dysautonmia. The nervous system is developed into to
> parts the sympathetic and parasympathetic. The parasympathetic is
the
> brakes to our nerves and sympathetic is the gas petal. The link
> between MVP and  the nervouse system is mostly parsympathetic which
is
> now defined as Dysautonmia. (we have bad brakes). There are many
> irritants with this  caffine, stress, certain meds have
interactions,
> and female hormones can irritate so it is best to read up on what to
> do to assist you body to handle things we can not control. I was not
> that luck  I now have a full time arrhythmia and maintained on
> antiarrhythmic drugs for a full time electronic disturbance in my
> heart. There are many natural substances that can help reduce the
> symptoms (magnessium  omega 3 fish oil, balance potassium and
calcium,
> CoQ10, good multi vitimins with a b complex, 400 to 600 units of
> vitimine E a day helps in many areas and new findings on acetyl
> -l-caritine show it may help repair nerve imbalances. You can also
buy
> a heart rate watch that will show your pulse and help you into a
mild
> exersize routine that can help you nervous system and heart.
Drinking
> lots of water daily is giving you heart the hydration it needs and
> helping to incerse blood volumn so the valve has less room to flap.
> Sleeping on your right side may help reduce the irritation of
presure
> in the vunerable area.  I hope this was helpfull I wish you luck

Luthien,

   Endocarditis is the big concern here. But when having a medical
proceedure if you have MVP there are anesthetic medication concerns.
If you have an irritable nervous system affecting your MVP then
recieving novicaine with ephenephrine could be dangerous. You can ask
for Novicane without ephinephrine. Also Nitrous Oixde gas has shown
bad heart racing affects in some people that are succeptable (like me
lol) so you can ask for another med. to put you to sleep without an
adrenaline stimulating affect. You should probably take antibotics
before the surgery. Good luck.

Lisa

-- In mvpandmvpssupport@yahoogroups.com, annyalioness <no_reply@y...>
wrote:
> Hi ppl, I have an impacted and infected wisdom tooth, they put me on
> clindamycin and now I have to have the tooth removed as soon as
> possible, I am freaking out because they will put me in this twilight
> sleep and then give me novacaine and we all know what that does, he
> says he has to give me novacaine because it helps the bleeding. Now I
> am terrified what if I flip out when i wake up? The infection is bad
> and he is worried about it causing endocarditas so I absolutely need
> it out. Has anyone had anything like this and gotton through it ok?
>
> Luthien

Annya,
   It sounds like your doctor just gave you the verdict that you do
have MVP. If the prolapse looks mild on the echo and the heart is not
being damaged by it and that is great news. You may never need the
drastic proceedures to correct anything if you take good care. I think
a big problem with you not being informed about alot of the
uncomfortable nervouse system imbalance symptoms that usually goes
with MVP is because this area has been under slow study for years
without alot of conclusions. I have had MVP for 26 years and at this
point my heart is healthy in structure and my valve still is not
showing dangerous backflow -meaning surgery to replace the valve is
not necessary. With MVP you will have palpitations or as I chose
skipped beats. If your doctor is trying to decide what area of the
heart is irritated into the skipped beats wearing an event or episodic
monitor is the best bet. A 24 hour halter usually is a waste of effort
due to the fact that most of the time the events are sneaky and
unrelible to record in 24 hours. An event monitor you can have at home
for a month and wear it when you feel symptoms to record  them. There
is a connection between MVP and an autonervous system imbalance which
is now called dysautonmia. The nervous system is developed into to
parts the sympathetic and parasympathetic. The parasympathetic is the
brakes to our nerves and sympathetic is the gas petal. The link
between MVP and  the nervouse system is mostly parsympathetic which is
now defined as Dysautonmia. (we have bad brakes). There are many
irritants with this  caffine, stress, certain meds have interactions,
and female hormones can irritate so it is best to read up on what to
do to assist you body to handle things we can not control. I was not
that luck  I now have a full time arrhythmia and maintained on
antiarrhythmic drugs for a full time electronic disturbance in my
heart. There are many natural substances that can help reduce the
symptoms (magnessium  omega 3 fish oil, balance potassium and calcium,
CoQ10, good multi vitimins with a b complex, 400 to 600 units of
vitimine E a day helps in many areas and new findings on acetyl
-l-caritine show it may help repair nerve imbalances. You can also buy
a heart rate watch that will show your pulse and help you into a mild
exersize routine that can help you nervous system and heart. Drinking
lots of water daily is giving you heart the hydration it needs and
helping to incerse blood volumn so the valve has less room to flap.
Sleeping on your right side may help reduce the irritation of presure
in the vunerable area.  I hope this was helpfull I wish you luck

For 2 weeks I was getting over 100 papls a day and then I went to the
cardio and he did the echo and saw my prolapsed valve. He said it
didn't look bad just mild prolapse. He had me wear the holter monitor
for 24 hours and wouldn't you know it, not one single palp, and none
since I wore the monitor 3 days ago either. What were they, what
caused them? They came on suddenly and went away just as suddenly,
but I am concerned as to how the doc will know if they are pac's or
pvc's if he couldn't see any on the monitor.

Annya

Afib is when your heart beats very fast like 200 to 300 beats per minute and
its very irregular. No it isnt life threatening although if a person stays
in afib they can get blood clots. Docs will put you on a blood thinner if it
happens very often. I know some people who are in afib all the time. That
has not happened to me. I go to the er and they convert me with meds so far.
You would know afib because it makes you very light headed and your heart
feels like it will beat right out of your chest. Pac's are premature atrial
contractions, pvc's are premature ventricular contractions. The pac's are
not life threatening, now the pvc's are dealing with your ventrical part of
the heart and from my understanding that can be dangerous. If you wear a
holter monitor it will tell the docs what kind of palps you are having and
you can go from there. Episodes of afib can be diagnosed by hooking you up
to ekg monitor, i can't think of what they call it. Well anyway I hope this
explains it more for ya. Email me back if you have any other questions, its
a bummer to deal with I know. Hope things get better for you. Colleen



  Visit my MVP Support board at http://alaskagem.proboards21.com/index.cgi
Visit the Angel's Cafe, grab some coffee and chat with us! http://www
theangelscafe.com/phpBB2/index.php
Books just wanna be FREE! See what I mean at:
http://bookcrossing.com/friend/bendmom

[Non-text portions of this message have been removed]

Snowy, what are the symptoms of atrial fib? How is that doagnosed as
oposed to pvc's or pac's? Is that life threating. Thanks

Annya


--- In mvpandmvpssupport@yahoogroups.com, "Snowy" <akgem@c...> wrote:
> In my own personal experience yep! You are fine and all of a sudden
other
> symptoms come up. I was fine for 10 years and when I hit 33 I
started having
> episodes of atrial fibrillation. Never have gotten that under
control
> compeletely and started getting pac's and skipped beats. My cardo
put me on
> Sectrol 200 mg  twice a day and it seems to have stopped the missed
beats
> for the most part. Hope this helps!
>
>

I hope everyone is enjoying a wonderful Christmas. I am disturbed
about something and need some advise or a shoulder... I have had mvp
for 5 years and have had chest pain and palps here and there. I have
all of the nervous system sensitivities that come with it as well as
easily fatigued and exercise intolerance. Recently about 2 weeks ago
I started having pain and about 50 to 100 palps a day and I was
scared. I went to the cardio and he could hear the murmer in my heart
with the stethescope. He is scheduling an echo and the holter monitor
for me on Monday but he doesn't think it's anything dangerously
cardiac related like a blockage or something, he thinks if anything
it may be my valve has worsened some. I am scared because I am not
used to having papls like this and I don't understand why it would
change all of a sudden from an occasional few to 100 a day. Any
comments on this would be helpful. It seems to be worse when my blood
sugar is high or low I am diabetic but not on any meds yet as I am
very med intolerant. Thanks

Annya

In my own personal experience yep! You are fine and all of a sudden other
symptoms come up. I was fine for 10 years and when I hit 33 I started having
episodes of atrial fibrillation. Never have gotten that under control
compeletely and started getting pac's and skipped beats. My cardo put me on
Sectrol 200 mg  twice a day and it seems to have stopped the missed beats
for the most part. Hope this helps!



  Visit my MVP Support board at http://alaskagem.proboards21.com/index.cgi
Visit the Angel's Cafe, grab some coffee and chat with us! http://www
theangelscafe.com/phpBB2/index.php
Books just wanna be FREE! See what I mean at:
http://bookcrossing.com/friend/bendmom

[Non-text portions of this message have been removed]

My opinion would be: unless they diagnosed you with mvp at an early age
after tests, then you always have had it. If they just heard a murmur and
based their diagnosis on that its iffy. You will find out for sure when they
run test. The echo is usually the one that will tell them for sure. Many
people can have the "click" but it doesn't necessarily mean Mitral Valve
Prolapse. I have heard of people being told they have it and then they don't
but I do believe that was because the proper test were not given. Hope this
helps!



  Visit my MVP Support board at http://alaskagem.proboards21.com/index.cgi
Visit the Angel's Cafe, grab some coffee and chat with us! http://www
theangelscafe.com/phpBB2/index.php
Books just wanna be FREE! See what I mean at:
http://bookcrossing.com/friend/bendmom

[Non-text portions of this message have been removed]

I have had mvp for about 6 years now and manage my symptoms well. The
past 2 weeks I have been having palps, skipped beats on an everyday
basis and about 50 a day I have an appointment with the cardio for an
echo to make sure everything is ok, I wonder though can you be pretty
much symptom free for the most part for years to suddenly develop
symptoms like this out of the blue? I am scared.

Annya

I was just wondering if anyone else has experienced this: At the age
of 17 I was diagnosed with MVP...then 9 yrs later, "Un"diagnosed.
Now, about 5 yrs after being "un"diagnosed, I have been having
fainting spells (and near-fainting spells), which I haven't had in
years.  So now I wondered if MVP might have something to do with it.

I'll be seeing my doctor and will likely be tested...don't even know
if anyone will be reading this, but thought I'd see what kind of
opinions/info is out there.

Me.

There is a service available to everyone that the vast majority of people
are unaware of called Life Settlements or Viaticals. A person can sell their
Life Insurance policy and receive up to 85% of its face value, tax-free.
This lump sum cash settlement can then be used as the policyholder sees fit.
Granted this may not be for everyone, but for many people this could be a
real blessing. A person can relieve themselves of the financial burdens that
inevitably mount when dealing with terminal illnesses while living out the
remainder of their life with dignity. These funds can also be distributed as
gifts ($10k/per yr) tax free, to the beneficiaries.

For more information contact Troy@...

[Non-text portions of this message have been removed]

There is a service available to everyone that the vast majority of
people are unaware of called Life Settlements or Viaticals. A person
can sell their Life Insurance policy and receive up to 85% of its
face value, tax-free. This lump sum cash settlement can then be used
as the policyholder sees fit. Granted this may not be for everyone,
but for many people this could be a real blessing. A person can
relieve themselves of the financial burdens that inevitably mount
when dealing with terminal illnesses while living out the remainder
of their life with dignity. These funds can also be distributed as
gifts ($10k/per yr) tax free, to the beneficiaries.

For more information contact Troy@...

Please come and visit a new community forum I set up for MVP and
related conditions. Need suggestions on categories and things to
discuss.

<a href="http://alaskagem.proboards21.com/index.cgi">

HI MIKE, FROM TIME TO TIME I GET LITE HEADED TOO AND PALPITATIONS.  I THINK THEY
HAVE THE ALMOST THE SAME SYMPTOMS

Mike Mclane <mikem53_2000@...> wrote:Hi everyone,
I'm a new member and have some questions.  Really the
only symptoms I have are that I get a little
lightheaded from time to time. I am on 25 mg of
atenolol once a day and diovan for my blood pressure.
Is there any correlation between mvp and high blood
pressure or are they completely separate.
--- jessica cowin <jessica_cowin@...> wrote:
> Thanks
>
> alaskagem <no_reply@yahoogroups.com> wrote:Welcome
> Jessica!
>
>
> Yahoo! Groups Sponsor
> To unsubscribe from this group, send an email to:
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>
>
>
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>
>
>
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>
> [Non-text portions of this message have been
> removed]
>
>


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[Non-text portions of this message have been removed]

Hi everyone,
I'm a new member and have some questions.  Really the
only symptoms I have are that I get a little
lightheaded from time to time. I am on 25 mg of
atenolol once a day and diovan for my blood pressure.
Is there any correlation between mvp and high blood
pressure or are they completely separate.
--- jessica cowin <jessica_cowin@...> wrote:
> Thanks
>
> alaskagem <no_reply@yahoogroups.com> wrote:Welcome
> Jessica!
>
>
> Yahoo! Groups Sponsor
> To unsubscribe from this group, send an email to:
> mvpandmvpssupport-unsubscribe@yahoogroups.com
>
>
>
> Your use of Yahoo! Groups is subject to the Yahoo!
> Terms of Service.
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Protect your identity with Yahoo! Mail AddressGuard
>
> [Non-text portions of this message have been
> removed]
>
>


__________________________________
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Thanks

alaskagem <no_reply@yahoogroups.com> wrote:Welcome Jessica!


Yahoo! Groups Sponsor
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Welcome Jessica!