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punkin53

I was diagnosed with Mitral Valve Regurgitation and Pulmonary Arterial Hypertension

Posted by @punkin53 in Heart & Blood Health, Fri, Jan 22 at 11:40am CDT

I was diagnosed with Mitral Valve Regurgitation and Pulmonary Arterial Hypertension 2 years ago and of course high blood pressure. I am taking Losartan 100mg and Amlodipine Besylate 5mg. I have periods where my face (both sides or one side) is flushed and feels hot. I have periods of light headed, tingling on my face and head. They do not happen all at the same time. I have not been able to find anything that explains these symptoms and my Cardiologist and Pulmonary doctor do not know. Can anyone shed some light on this.

anotherstateofmind

Posted by @anotherstateofmind, Feb 27, 2015

I have a friend who was recently told that she has a "collapsed heart valve." Is Mitral Valve Prolapse the only medical term generally used for this (what I'm guessing is a laymen's term) condition? I'm hoping to learn as much as I can about this, so I can possibly be helpful. Thanks! -b

Edited: 02/04/2016 @ 10:24am

colleenyoung

Posted by @colleenyoung, Fri, Jan 22 at 2:53pm CDT

Hi @punkin53, welcome to Connect.

@vdouglas @cyndiblaw @skooter27 might you have any thoughts on this?

Colleen
Connect Community Director

cyndiblaw

Posted by @cyndiblaw, Fri, Jan 22 at 3:38pm CDT

I also have been diagnosed with Mitral Valve Regurgitation/Mitral Valve Prolapse (2011), with a recent left cath showing that I would soon need to have my mitral valve replaced, as well as Primary Pulmonary Hypertension (2011). I do not, however, suffer from high blood pressure, but extreme low blood pressure (last cardiologist visit was 80/56).

I’m only on one medication, which no longer works (right cath showed this in July of last year) and the side effect from that medication resulted in a lowered blood pressure, but I have not had any other side effects, not like you’re having. As I stated, my previous medication is no longer working, and the other ones prescribed since, had horrific side effects i.e. extreme heart burn for 4-5 hours at a time with chest pressure likened to that of 200 lbs on my chest, so right now I remain on the one that is no longer working, as it won’t hurt anything, according to my cardiologist who is also my PH specialist…hoping for a new drug soon, otherwise, my PH will just get progressively worse 🙁

In my own personal opinion, if you are experiencing hot flashes, a flushed face, tingling and lightheadedness, they could possibly be a result of the medication you are taking, even if none of those side effects you are having are listed on the medication/paperwork itself…many meds are “pushed” through before FDA approval, and all of the side effects are not known, therefore, not listed on the bottle or paperwork associated with those meds…I’ve experienced this.

It concerns me that both your cardiologist and Pulmonary doctor can’t explain your symptoms, yet aren’t trying to do more to find out why you are experiencing them…I’m not a trusting soul when it comes to medications or medical devices, and definitely not where the FDA is concerned…too many “kickbacks” and helpful, at least for them not us, unnecessary referrals to other physicians.

I cannot give you anything that resembles “medical advice,” other than to help you advocate better for yourself, in regard to unexplained symptoms. I research everything, and I do mean everything…I ask lots of questions, and if I’m not satisfied with an answer, then I move on until I find a physician who at the very least wants to try and find out the “whys.”

I am extremely fortunate however, having both a cardiologist/PH specialist, and primary care giver, who I have been with for years, and who I trust and respect…we may not always agree, but we communicate, resulting in trust and respect on both sides of the fence….this is VERY important, so if you don’t have it, move on until you do!!! I fired four cardiologists in the beginning of attempting to be diagnosed properly, who just wanted to place me on paxil for anxiety and panic, which I DID NOT have…very frustrating and time-consuming to say the least 🙁

I also utilize both the WomenHeart and PHA websites, to help guide me in my diagnoses…I have many other heart issues that I won’t go into now, as it’s a moot point…I just want to help you as much as I can 🙂

Stand Up For Yourself…don’t stop until you get answers…this is your life we’re talking about, not a car problem…you ARE worth the fight!!!

Good Luck & God Bless...

Edited: 01/22/2016 @ 3:47pm

vdouglas

Posted by @vdouglas, Sun, Jan 24 at 11:48pm CDT

Hi @punkin53

I have had MVP/MVP Syndrome most of my life but only diagnosed for about 30 years. I have mild Hypertension. I am not a Doctor nor do I have medical training but I will try to help you with your question.

MVP and sometimes "Mitral Valve Prolapse Syndrome" can be associated with other conditions such as irregular heartbeat (various types), panic disorder and many other conditions. Most of these can be dealt with and controlled but each have symptoms, or are a symptom, that are disturbing and sometimes frightening. Flushing of the face and a warm feeling as well as light headednes, tingling sensation are all symptoms I deal with or have dealt with. I have many symptoms and I won't list them because the more aware you are of them the more they can bother you. I would not be alarmed by the symptoms you have described. You have discussed them with your doctor and he/she cannot see an underlying problem. If your symptoms become worse in frequency or severity definitely be more persistent with your doctor.

I will say that if you experience panic disorder regularly it is best to treat it as soon as possible. Be proactive but not overactive with your illness.

I am taking 120mg Inderal extended release. This helps with my symptoms of arrhthmia and panic (adrenaline sensitivity). I also take .5 mg Xanax as needed for sleep. I also take Lisinopril for my blood pressure.

Wishing you well
Von

cyndiblaw

Posted by @cyndiblaw, Mon, Jan 25 at 9:02am CDT

Hello Punkin & Von,

I just read your post Von, and I wish you well, in spite of all of the medical issues you have to deal with on a daily basis. I know how hard that has to be.

I just felt the need to clarify several things…

MVP and Mitral Valave Regurgitation or two separate diagnoses, and I believe, correct me if I’m wrong Punkin, but what you stated in your initial message was that you were diagnosed with Mitral Valve Regurgitation, not MVP? There is a distinct difference.

Although you, Punkin, suffer from both Pulmonary Hypertension, as well as Hypertension, I just wanted to point out that there is a huge difference between Pulmonary Hypertension and Hypertension, as well as those medications prescribed for each one. Hypertension is high systolic blood pressure, where Pulmonary Hypertension is a result of high blood pressure “in” the lungs. If you have’t done so already, go to the Mayo Clinic website, the only one I utilize, and compare the side effects of medications for both diagnoses.

Von…Punkin stated in her message that “my Cardiologist and Pulmonary doctor do not know,” not that they can’t see an underlying problem. Again, not sure Punkin if your physicians addressed your symptoms with testing and found nothing, or maybe suggested any “possibilities” as to why you were having these symptoms, but if they haven’t, which they should have, you need to do some checking yourself.

I can’t end this message without stating that Punkin never mentioned, not once, having a panic disorder, or suffering from panic attacks. Too many physicians today are quick, especially if you are a woman, to blame all heart attack/disease symptoms on anxiety, panic attacks, or even hormonal issues…trust me, I know. If I ever had any anxiety, it was due to cardiologist after cardiologist mis-diagnosing me with one of these three disorders, when all along I had these heart/lung issues:

Primary Pulmonary Hypertension
Hypotension (NOT Hypertension; low blood pressure, not high)
AVNRT (AV nodal re-entry tachycardia)
Atrial septal aneurysm
Paroxysmal Supraventricular Tachycardia
MVP
Mitral Valve Regurgitation
Palpitations
SOB (shortness of breath)
Chest Pain
Abnormal Stress Echos
Abnormal ECG’s (my “new norm”)

I only listed these issues to prove that after firing four cardiologists who tried to diagnose me with anxiety, panic, or hormonal issues, I was right…it was my heart…didn’t really want to be right, and have all of these issues, but I was.

If a patient truly does suffer from any of these "three" issues, they should admit it, and receive medication for it, but if they truly believe that they don’t suffer from anxiety, panic or hormonal issues, they should never settle for any of these as being a diagnosis.

Good Luck to both of you, and God Bless...

Edited: 01/25/2016 @ 9:15am

punkin53

Posted by @punkin53, Tue, Jan 26 at 12:00am CDT

Thank you for this information. I struggle with knowing when a symptom is
something I need to bring to my cardiologist attention and when I do not
need to say anything. I am doing acupuncture for anxiety and it seems to
help.

Punkin

colleenyoung

Posted by @colleenyoung, Mon, Jan 25 at 8:23am CDT

Von That's a phrase worth repeating...
- "Be proactive but not overactive with your illness."
Well said.

Thank you both @cyndiblaw and @vdouglas for your replies!

vdouglas

Posted by @vdouglas, Tue, Jan 26 at 2:51pm CDT

Hi Punkin
Glad to hear the acupuncture is working for you. No or less meds is a good thing.
Just want to say; In my previous post I did not read Cynthia's comments before I responded to you so It appeared as though I was disagreeing with her. I have very little time in the day so I just respond before reading the whole thread.I do not disagree with what she said at all nor was I responding to what she said in any way, but I agree with all that I said "in my situation".
Regurgitation is leakage through the valve for whatever reason. "My reason" is Prolapse of the Mitral Valve.It can happen with every beat or just once in a while.Your body may respond to that with symptoms; anxiety, trouble sleeping, flush/hot/warm feeling, tingling, a little adrenaline release or whatever.My anxiety gradually got worse over time. It was disabling until I got it under control with minimal medication. That is why I mentioned it. It literally saved my life.
You should "Always" talk to your Doctor nothing is unimportant. Wishing you well,Von
 

charbaby40

Posted by @charbaby40, Thu, Apr 28 at 9:25pm CDT

Im new to the pulmonary hypertension thing can some help me figure it all out

colleenyoung

Posted by @colleenyoung, Thu, Apr 28 at 10:16pm CDT

Welcome to Connect @charbaby40!
I moved your message to this discussion thread in the Heart & Blood Health group so you can meet @cyndiblaw @punkin53 @vdouglas who are also talking about pulmonary hypertension. I'm confident that they will share their experiences and help you figure things out.

Tell us a bit more about yourself. I assume you were just recently diagnosed. What led to your diagnosis of pulmonary hypertension?

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