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Mitral Valve Prolapse and Dysautonomia...
Hello... This is my first post here... I have been diagnosed with MVP almost 10 years ago now... While the cardiologists tell me my MVP is not serious, that it is benign, I still have a lot of trouble feeling my heart beats A LOT, and especially when they are really irregular and scattered. There are times when I feel "normal" and don't have symptoms, and other times, like lately, when I am almost afraid to get through the day... I wind up having a racing heart, panic-attack like symptoms, dizziness, and a general feeling of unwellness... I have a beta blocker that slows my heart, but then at night my heart beat slows to 45 beats a minute... UGH!!! Does anyone have similar symptoms?? It feels like my body has the gas pedal on full go at times when I want to slow it down, and on "stop" when I need go power... ??? Any suggestions?? Thank you!!!
Hi there,
I was first dx w/ Innapropriate Sinus Tachycardia (IST). But for me, this did not fit my sx and my cardiologist agreed hence why I had another Tilt Test w/ a different Electrophysiologist. My sx are; Low B/P, dizziness, irregular heart rate, palpatations, a feeling of the heart flopping around, a feeling of it almost stopping then V E R Y S L O W L Y starting back (a terrible feeling), as well as passing out.
There is a GREAT forum you should check out and it is Dinet.org (i think) if not let me know then I will give it to you. So many people there that you can identify with.
As a side note......From my own knowing I have never heard a doctor tell a patient to only take the Atenolol on an as needed basis!! Either you take it or you don't. That medication works by being built up in your system in a certain level to keep everything at an even tone. This is not like a xanax! Take it when you are panicky!
Perhaps a second opinion would not be a bad thing.
And you are the only one that knows what is normal for you and what is not. That is why the doctors need to listen to the patient and not blow them off. They are not you!
Lastly, I would not say that I am knowledgeable ( but Thank You for the compliment :) but rather through trial and error...through living it, from Good doctors giving me accurate, caring information.
Be Well,
~Tonya
ps What is your Doctoral program in?
I was first dx w/ Innapropriate Sinus Tachycardia (IST). But for me, this did not fit my sx and my cardiologist agreed hence why I had another Tilt Test w/ a different Electrophysiologist. My sx are; Low B/P, dizziness, irregular heart rate, palpatations, a feeling of the heart flopping around, a feeling of it almost stopping then V E R Y S L O W L Y starting back (a terrible feeling), as well as passing out.
There is a GREAT forum you should check out and it is Dinet.org (i think) if not let me know then I will give it to you. So many people there that you can identify with.
As a side note......From my own knowing I have never heard a doctor tell a patient to only take the Atenolol on an as needed basis!! Either you take it or you don't. That medication works by being built up in your system in a certain level to keep everything at an even tone. This is not like a xanax! Take it when you are panicky!
Perhaps a second opinion would not be a bad thing.
And you are the only one that knows what is normal for you and what is not. That is why the doctors need to listen to the patient and not blow them off. They are not you!
Lastly, I would not say that I am knowledgeable ( but Thank You for the compliment :) but rather through trial and error...through living it, from Good doctors giving me accurate, caring information.
Be Well,
~Tonya
ps What is your Doctoral program in?
Hi again Tonya!
What are your s/s of Neuro Cardiogenic Syncope... My cardiologist had told me I had that a few years ago, but I never really thought about it too much... I forgot to mention that I am at the ending stage of my doctoral program and haven't made any clear plans yet?!?!
It's a crazy time!!! Thanks so much!!!
What are your s/s of Neuro Cardiogenic Syncope... My cardiologist had told me I had that a few years ago, but I never really thought about it too much... I forgot to mention that I am at the ending stage of my doctoral program and haven't made any clear plans yet?!?!
It's a crazy time!!! Thanks so much!!!
Hi Tonya... Thank you so much for your response. I did go to my cardiologist and he did do the echo, treadmill test and a halter.. I do have a lot of PVC's and some other kind of irregular rhythm. Definitely have Mitral Valve Prolapse and slight enlargement of the left Ventricle... all of which the doc says is benign... He said the extra beats accounted for 1% of my heartbeats, so he wasn't terribly concerned. He recommended I take the beta blocker (atenolol) when it is uncomfortable and my pulse is irregular or fast.. My symptoms are so weird... dizziness, insomnia, crawling sensation in the skin... My thyroid is a just on the border of low, which the cardiologist wanted to put me on Synthroid for... I went to an Endocrinologist for a second opinion and she did NOT think it was warranted since all my other Thyroid numbers were fine (T3, TSH, and antibodies)... AND my T4 was just on the border... SO, it's a mixed case and I am getting different answers... I am 43 and it could be that my hormones are shifting... I'm considering going to see someone about the other hormone levels, since I read that they can cause havoc... UGH!!!
I have been feeling terribly anxious, and at times my heart does race like a wild horse. I think, though, I have been focusing SO MUCH on this stuff that I am exascerbating it... My mind also races and it's hard for me to tune out, as much as I would LOVE to just RELAX!!!! So, there you have the complicated scene... I think I will also explore the Cardio electro physiologist, since my heart thing has been going on for quite a while... it just seems worse now that I am going through this time... Boo hoo!!!
Any suggestions?... thoughts?? You seem very knowledgeable, have you experienced these things yourself?? Again, thanks for your input... I am very grateful... Part of it is feeling "alone" in this and not knowing what is "normal" and what is not!!!
Kindest regards,
Stephanie
I have been feeling terribly anxious, and at times my heart does race like a wild horse. I think, though, I have been focusing SO MUCH on this stuff that I am exascerbating it... My mind also races and it's hard for me to tune out, as much as I would LOVE to just RELAX!!!! So, there you have the complicated scene... I think I will also explore the Cardio electro physiologist, since my heart thing has been going on for quite a while... it just seems worse now that I am going through this time... Boo hoo!!!
Any suggestions?... thoughts?? You seem very knowledgeable, have you experienced these things yourself?? Again, thanks for your input... I am very grateful... Part of it is feeling "alone" in this and not knowing what is "normal" and what is not!!!
Kindest regards,
Stephanie
Sorry that you have so much stress that you are on a constant roller coaster of
"Edge"/Anxiety". I know that feeling oh to well!!!!
I would have your cardiologist refer you to an Electrophysiologist where he
can do the proper testing to rule out possible causes of those feelings other than just plain ol' anxiety..
It is not uncommon for your B/P to elevate when you are having anxiety.
Have you always had anxiety? Do you know what your stress triggers are?
Although, let me add that an anxiety attach can come '"Out of Nowhere!"
for no good reason. Again, I know this from past experiences.
There is a really GOOD..... make that a GREAT book called
"More Help for your Nerves" By; Dr. Claire Weeks. This is an awesome read!
Anyhow, ask your Cardiologist to refer you to an Electrophysiologist who can do
some in depth testing. Oh ya, Just google the word "Tilt Table Test" and you will
get a wealth of info from there.
Be Well,
Let us know how it goes.
~Tonya
"Edge"/Anxiety". I know that feeling oh to well!!!!
I would have your cardiologist refer you to an Electrophysiologist where he
can do the proper testing to rule out possible causes of those feelings other than just plain ol' anxiety..
It is not uncommon for your B/P to elevate when you are having anxiety.
Have you always had anxiety? Do you know what your stress triggers are?
Although, let me add that an anxiety attach can come '"Out of Nowhere!"
for no good reason. Again, I know this from past experiences.
There is a really GOOD..... make that a GREAT book called
"More Help for your Nerves" By; Dr. Claire Weeks. This is an awesome read!
Anyhow, ask your Cardiologist to refer you to an Electrophysiologist who can do
some in depth testing. Oh ya, Just google the word "Tilt Table Test" and you will
get a wealth of info from there.
Be Well,
Let us know how it goes.
~Tonya
I feel on edge all the time, and my BP could go from 120/77 to 130/100 in a matter of 10 minutes of anxiety. I feel like I'm on a rollercoaster and I'm constantly going down a hill. My only relief is Xanex and now a new Calcium Channel blocker that at least stops the chest pains, but increses the intestinal discomfort.
What is the TILT test? My family doc probably doesn't even know what Dysautonomia is. Who do you see as a Dysautonomia specialist?
What is the TILT test? My family doc probably doesn't even know what Dysautonomia is. Who do you see as a Dysautonomia specialist?
Sorry that you are feeling bad. I have had MVP w/ moderate regurgitation
for many, many years. The only thing that I can share from my own personal
experience is that when those episodes happen (usually in spurts) it tends to
go along w/ an increase in caffeine, stress, illness, depression, not drinking enough water, and lastly........
We are much more aware of this happening, so we are concentrating on this naughty behavior of the MVP. In turn,this makes us a bit more anxious of another episode,
happening (and we dread it).
I also think that because it is so pronounced that we are not sure when or even
if we should go to the ER or call the doctor. Let me ask you......Have you had any
recent EKG, Echocardiogram, blood work? The reason I ask is there are other reasons
your heart could be having these "episodes."
One more thing, have you had a TILT Test done to rule in or out any Dysautonomia's?
If not, then perhaps you could request to be referred to an ElectroPhysiologist as he is
the one to try and help figure out what is going on. He is the one to dx me with
Neurocardiogenic Syncope which showed that MVP was not to blame on all those feelings that I was having.
Hope some of that helps and makes since.
Keep us updated,
~Tonya
for many, many years. The only thing that I can share from my own personal
experience is that when those episodes happen (usually in spurts) it tends to
go along w/ an increase in caffeine, stress, illness, depression, not drinking enough water, and lastly........
We are much more aware of this happening, so we are concentrating on this naughty behavior of the MVP. In turn,this makes us a bit more anxious of another episode,
happening (and we dread it).
I also think that because it is so pronounced that we are not sure when or even
if we should go to the ER or call the doctor. Let me ask you......Have you had any
recent EKG, Echocardiogram, blood work? The reason I ask is there are other reasons
your heart could be having these "episodes."
One more thing, have you had a TILT Test done to rule in or out any Dysautonomia's?
If not, then perhaps you could request to be referred to an ElectroPhysiologist as he is
the one to try and help figure out what is going on. He is the one to dx me with
Neurocardiogenic Syncope which showed that MVP was not to blame on all those feelings that I was having.
Hope some of that helps and makes since.
Keep us updated,
~Tonya
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