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Old 03-26-2006, 02:13 PM   #1
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Mitral Valve Prolapse - this sucks!

Hi - I'm new here. Does anyone else here have severe symptoms with MVP? My heart has been acting up off and on for the last 30 years (since my early twenties) and I had an echo back then that showed nothing.

Well, over the years I'd have a funky heartbeat with occasional palpitations and a "wiggling" in my chest that felt, for lack of a better term, a fish out of water. No regular beat, just this very disturbing feeling. It never lasted longer than 15 seconds or so. I learned to live with it, assuming it must be stress, because I'm a very anxious person and I do occasionally have panic attacks. I was put on Inderal because these episodes scared me so much, and to regulate my heartbeat. I was also on it for migraine headaches, so I've been on it off and on (mostly on) for the last ten years.

Recently my episodes became more frequent, until I had several hours every evening of an irregular heartbeat that would make me feel breathless, but otherwise there were no other disturbing symptoms. No chest pain, dizziness, etc. Then after several months of this I had a terrifying episode where my heart did the "flopping" thing and it didn't go away. It lasted, off and on for twenty minutes. At one point I got dizzy and saw spots before my eyes like you do right before fainting. I finally decided to head to the ER. Of course, the episode was gone by the time I got there. They put me on a heart monitor, and nothing happened. They ran blood too, of course, and an EKG. They sent me home a few hours later.

After relaying this to my doctor she referred me to a cardiologist because she thought she could hear a very slight click sometimes with the stethescope, and believed I might have MVP. To make a long story short, the cardiologist agreed with her, and set up a Holter monitor appt. and an echocardiogram. This time, it showed slight MVP with no regurgitation. Well, that at least was good news (that its not severe). My heart acted up badly the night I had the Holter on, and after hours of it, I finally stopped pushing the button. I was exhausted. So at least they saw what was happening on the tape, although it didn't do the severe flopping thing.

I'm now on Inderal 20mg, three times a day (it was twice a day before) and Xanax as needed. But my symptoms get very bad sometimes and at these times I wonder if I might die on the spot. Very hard, sudden thumps accompanied by the "extra" beats that are very frequent (often every other beat) and all kinds of strange sensations. This can go on for hours. Its hard to believe there is nothing seriously wrong with my heart when this happens. It causes severe panic attacks at times, and its wearing me out. I don't drink any caffeine except one cup of coffee in the morning, and have essentially cut chocolate out of my diet. For those of you with MVP and severe symptoms - how do you deal with it? How do you calm yourself down? Even the Xanax at fairly high doses doesn't take away half of the fear. Thank you.

Randi

Last edited by seaecho; 03-26-2006 at 02:14 PM.

 
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Old 03-26-2006, 07:38 PM   #2
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Re: Mitral Valve Prolapse - this sucks!

Quote:
Originally Posted by seaecho
Hi - I'm new here. Does anyone else here have severe symptoms with MVP? My heart has been acting up off and on for the last 30 years (since my early twenties) and I had an echo back then that showed nothing.

Well, over the years I'd have a funky heartbeat with occasional palpitations and a "wiggling" in my chest that felt, for lack of a better term, a fish out of water. No regular beat, just this very disturbing feeling. It never lasted longer than 15 seconds or so. I learned to live with it, assuming it must be stress, because I'm a very anxious person and I do occasionally have panic attacks. I was put on Inderal because these episodes scared me so much, and to regulate my heartbeat. I was also on it for migraine headaches, so I've been on it off and on (mostly on) for the last ten years.

Recently my episodes became more frequent, until I had several hours every evening of an irregular heartbeat that would make me feel breathless, but otherwise there were no other disturbing symptoms. No chest pain, dizziness, etc. Then after several months of this I had a terrifying episode where my heart did the "flopping" thing and it didn't go away. It lasted, off and on for twenty minutes. At one point I got dizzy and saw spots before my eyes like you do right before fainting. I finally decided to head to the ER. Of course, the episode was gone by the time I got there. They put me on a heart monitor, and nothing happened. They ran blood too, of course, and an EKG. They sent me home a few hours later.

After relaying this to my doctor she referred me to a cardiologist because she thought she could hear a very slight click sometimes with the stethescope, and believed I might have MVP. To make a long story short, the cardiologist agreed with her, and set up a Holter monitor appt. and an echocardiogram. This time, it showed slight MVP with no regurgitation. Well, that at least was good news (that its not severe). My heart acted up badly the night I had the Holter on, and after hours of it, I finally stopped pushing the button. I was exhausted. So at least they saw what was happening on the tape, although it didn't do the severe flopping thing.

I'm now on Inderal 20mg, three times a day (it was twice a day before) and Xanax as needed. But my symptoms get very bad sometimes and at these times I wonder if I might die on the spot. Very hard, sudden thumps accompanied by the "extra" beats that are very frequent (often every other beat) and all kinds of strange sensations. This can go on for hours. Its hard to believe there is nothing seriously wrong with my heart when this happens. It causes severe panic attacks at times, and its wearing me out. I don't drink any caffeine except one cup of coffee in the morning, and have essentially cut chocolate out of my diet. For those of you with MVP and severe symptoms - how do you deal with it? How do you calm yourself down? Even the Xanax at fairly high doses doesn't take away half of the fear. Thank you.

Randi
Hi seaecho,

I am actually a 25 year old male and this has been happening to me for the past 8 months or so constantly. Sometimes it takes hours for my fluttering/thumping to stop. It feels like a skipping feeling and when it happens i seem to lose my breath for a sec or so. I went to a cardiologist and he gave me a stress test and a heart minotor like the one where u have to press the button when you feel the problem. I am an athletic 25 year old kid who plays competitive tennis since i was 12. Now he told me i have MVP. He said its very common in women because women seem to not drink enough water. He told me I was just dehydrated(which makes no sense because i drink tons and tons of water). I seem to get this more towards the night time. It causes me to constantly think I will have a heart attack at any second and it causes very bad anxiety. My doctor told me he could either put me on meds for the rest of my life, or just deal with it since it is not that serious. But i ask myself just like you, if it is not serious, why do i keep having the problems, and if its rare to see it in men, then how is it not serious? I honestly do not sleep well due to always thinking about it and feeling it sometimes for hours. It just goes away and then each day it comes back. Truthfully, I really do not cope with it. When it happens, I just sit back and worry because it never leaves. Its day to day. I am only 25 and this is happening to me. I play tons of tennis and it never bothers me while im playing. Just at night. When i get time off of work, I am going to california to see a specialist that my grandparents see for their hearts. I live in las vegas so, i do not beleive the doctors out here. After watching my grandma die, and the doctors tell her she was a hyperchondriact(or however u spell it) and the next day when they were releasing her, she had a massive heart attack and days later died, I will get a seconed opinion. I just hope i do not die at a young age like this and be a rare statistic. I love life and im sure you do as well. Keep posting and Ill always respond. Hope all is well.

Last edited by DavieVegas; 03-26-2006 at 07:49 PM.

 
Old 03-26-2006, 07:57 PM   #3
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Re: Mitral Valve Prolapse - this sucks!

Also after looking MVP up on the internet i found thispage that explains it all!

[url]http://www.nursing.wright.edu/practice/mvp/default.htm[/url]

Read it carefully and you will have some sort of releif! Copy and paste the link into ur internet browser at the top.

Many MVPers believe chest pains signal a heart attack. MVPS is not known to cause a heart attack. In general, severe narrowing and blockage of a coronary artery that supplies an area of heart muscle with blood causes a heart attack. This may lead to permanent damage of a portion of the heart muscle. MVPS neither narrows nor blocks coronary arteries, nor causes permanent damage to the heart muscle.

Last edited by DavieVegas; 03-26-2006 at 07:57 PM.

 
Old 03-27-2006, 06:36 PM   #4
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Re: Mitral Valve Prolapse - this sucks!

Hi DavieVegas,

Now that's one thing I've NEVER read - that women get MVP more often because they don't drink enough water! Such is not the case with me - I drink at least eight glasses of water a day, more when its hot. MVP tends to be genetic, and I've recently talked to an aunt of mine that I had lost touch with for over 30 years, and she has MVP. What disturbs me is that she tells me her MVP went into Atrial Fibrillation a few years ago. THAT scares me! She has episodes of AF where she has to lie down and try to be calm, take Valium and an extra heart pill. Her episodes last an average of two and a half hours! The episode that I had last May only lasted about twenty minutes, but the way she describes her AF sounds exactly like what happened to me that day. So, every time my heart starts acting up badly, that's all I can think about.

I had always read that MVP is usually not dangerous. Its harmless - just an annoyance. Well, after what my aunt told me, I'm afraid mine will also go into AF. You could be having PVCs, and that is almost ALWAYS harmless. When you feel your pulse, can you feel an "extra" beat? Mine has an extra beat very often, after years of symptoms off and on. When its at its worst, I have an extra beat every other beat.

When your heart is not acting up, its easy to be brave, and tell yourself you won't let it worry you any more. But the next time you have an attack (which sounds like daily with you, like it is with me) all the fear comes back again, and you can't think straight for fear of dropping over dead at any second. So I know exactly how you feel, and how terrifying it is.

One doctor told me that as long as I don't feel dizzy, have sweat on my forehead, chest pain or breathlessness, I shouldn't worry. Well, I HAVE had the dizziness and the breathlessness at times, but I'm not sure if that is due to the anxiety or if its my heart that is causing the symptoms.

Like you, I also have it most often at night, but also can have it after doing a lot of housework or something else strenuous. When I lay down and try to relax - BOOM! there goes my heart. Then, of course, I CAN'T rest. That's when I often have to take Xanax to calm myself down. It does sometimes seem to help my heart to go back to normal, also.

Does your heart ever go into the "fish out of water" thing that mine did? Like there is no regular thump, thump, but just a wallowing around in your chest kind of feeling? That is the symptom that scares me the most, because I'm afraid it won't go back into a regular rhythm, and I'll die of an arrythmia. People who don't have MVP have no idea of the nightmare of a life we lead. After so many years of this, I've become afraid to go places and do things I enjoy for fear of having an episode. Have you gotten to that point?

Randi

 
Old 03-27-2006, 08:02 PM   #5
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Re: Mitral Valve Prolapse - this sucks!

Quote:
Originally Posted by seaecho
Hi DavieVegas,

Now that's one thing I've NEVER read - that women get MVP more often because they don't drink enough water! Such is not the case with me - I drink at least eight glasses of water a day, more when its hot. MVP tends to be genetic, and I've recently talked to an aunt of mine that I had lost touch with for over 30 years, and she has MVP. What disturbs me is that she tells me her MVP went into Atrial Fibrillation a few years ago. THAT scares me! She has episodes of AF where she has to lie down and try to be calm, take Valium and an extra heart pill. Her episodes last an average of two and a half hours! The episode that I had last May only lasted about twenty minutes, but the way she describes her AF sounds exactly like what happened to me that day. So, every time my heart starts acting up badly, that's all I can think about.

I had always read that MVP is usually not dangerous. Its harmless - just an annoyance. Well, after what my aunt told me, I'm afraid mine will also go into AF. You could be having PVCs, and that is almost ALWAYS harmless. When you feel your pulse, can you feel an "extra" beat? Mine has an extra beat very often, after years of symptoms off and on. When its at its worst, I have an extra beat every other beat.

When your heart is not acting up, its easy to be brave, and tell yourself you won't let it worry you any more. But the next time you have an attack (which sounds like daily with you, like it is with me) all the fear comes back again, and you can't think straight for fear of dropping over dead at any second. So I know exactly how you feel, and how terrifying it is.

One doctor told me that as long as I don't feel dizzy, have sweat on my forehead, chest pain or breathlessness, I shouldn't worry. Well, I HAVE had the dizziness and the breathlessness at times, but I'm not sure if that is due to the anxiety or if its my heart that is causing the symptoms.

Like you, I also have it most often at night, but also can have it after doing a lot of housework or something else strenuous. When I lay down and try to relax - BOOM! there goes my heart. Then, of course, I CAN'T rest. That's when I often have to take Xanax to calm myself down. It does sometimes seem to help my heart to go back to normal, also.

Does your heart ever go into the "fish out of water" thing that mine did? Like there is no regular thump, thump, but just a wallowing around in your chest kind of feeling? That is the symptom that scares me the most, because I'm afraid it won't go back into a regular rhythm, and I'll die of an arrythmia. People who don't have MVP have no idea of the nightmare of a life we lead. After so many years of this, I've become afraid to go places and do things I enjoy for fear of having an episode. Have you gotten to that point?

Randi

Hi Randi! Ya this is constantly scaring me. My heart seems to skip a beat and when it does, it takesm y breath away after the skipping of the beat then goes back to normal. It is emotionally draining.Im having it right now as we speak.i constantly drink water because i play sports and teach tennis for a living. I have also had a hard time going anywhere due to my panic attacks and anxiety from my MVP. After reading that webiste i posted, it made me feel a little better about the "not so serious" thing and that its common. The problem i have is that im 25 and I do not want to be put on medication because I do not want the meds to raise my blood pressure and do all sorts of other things at my young age. So i have to just deal with this irritation for hours per day. Mostly 2 hours a day or so i feal with this. My grandma says it wont kill me so I should try not to think about it much. Easier said then done you know? I cant sleep a lot due to my MVP which seems to go crazy before bed. Sometimes i feel that all this is in me head but dealing with this day after day, i soon realize it is not. I know its inherited/genetics because my dad is 50, and he has tachycardia. I read somewhere MVP could possibly lead to that as well. I am not sure though.Best thing i hope for is to change my diet and eat better, and keep exercising. I doubt it will ever go away but if I can go without having to deal with this for a few days a week, Id be very thankful. Keep in mind that I deal with all of this without xanex or anything. I wish i had some. Im sure I will eventually get some. Until then keep trucking away at life and I am also going to try not to let it control my life. Its better said then done of course. If i die, then I die. I have no control over it. Doctors are so dumb these days, I tend to not beleive them and always try and get a second opinion(which I still have to do in california when i get time off of work). I hope somedays are better for you then others.

 
Old 03-28-2006, 07:04 AM   #6
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Smile Re: Mitral Valve Prolapse - this sucks!

Hi Seaecho,
You are describing, almost to a T, my history. Diagnosed 25 years ago with MVP, at age 25. I have history of panic disorder, etc. I have occasional PVCs...the little thumps and flutters, but on rare ocassions (thanks goodness theyre only rare), I experience the flip flops for about 10-15 seconds. Just went for a complete cardiac workup...thalium stress test, echo, etc. All they could find was my occasional PVC. Anyway, I take Atenolol 50 mg per day, which helps a lot! But I will tell you the most significant change comes when Im sure to keep up with exercise. It can seem a little bit scary at first, because you're afraid of extra beats, heart rate increase,etc, when exercising...but if you can bet past that fear, the payoff is amazing. I run 3 miles 3 times per week, and the palpitations become very infrequent. As soon as I stop keeping up with exercise the palpitations get much more frequent. I wish you lots of luck, as I know how frightening this all can be. But I'd highly suggest once you get the go ahead from your doctor, that you consider a good exercise plan. Take care.

 
Old 03-28-2006, 08:36 AM   #7
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Re: Mitral Valve Prolapse - this sucks!

There is a MVP center here in Birmingham, Alabama...check out this website...
[url]http://www.mvprolapse.com/mvp.html[/url]. The Cardiologist on the site DOES make mention of the water deficit. Being in the medical field, and a nursing student, it does kind of make sense.

I am 33 years old and I was diagnosed with "mild" MVP about 8 years ago and take 25mg of Tenormin at night which has always seemed to keep the symptoms pretty much in check except for the "time of the month" (which tends to aggravate things) until last Tuesday when out of the blue I get this C-R-A-Z-Y rhythm thing that has bascially not let up yet.

I have been having what is called bigeminy (a normal, abnornal rhythm) for a week now...I posted a thread on this yesterday...it's a BEAT-BEAT- SKIP then BEAT - BEAT - SKIP kind of rhythm. It's like my heart skips a beat every 2nd beat...which is making me very lightheaded. AND to make matters worse...and strangely enough, it gets better if I am walking around. Weird. Then as soon as I sit down or GOD FORBID, LAY DOWN...here it goes........the torture. I swear, I would compare this to chinese water torture where they drop one drop of water on your forehead, between your eyebrows every 5 or so seconds to make you confess your sins or whatever. I mean, this IS ABSOLUTELY DRIVING ME COMPLETELY INSANE!!! I live in fear of passing out in public or dying at 33 of some bizarre arrhythmia. I have an appointment with my family Dr. tomorrow and maybe he can shed some light on this.

 
Old 03-28-2006, 06:41 PM   #8
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Re: Mitral Valve Prolapse - this sucks!

I guess I am the only man that has this in this thread? .

 
Old 03-29-2006, 11:23 AM   #9
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Re: Mitral Valve Prolapse - this sucks!

DavieVegas, MVP is much more common in women, and that's probably why everyone who replied is a woman. It IS seen in men, but not as often. I suspect my son has it, since he's described his heart doing "strange things" but he's one of these people who just ignore it and continue on. How I wish I could be like that. I feel a bit better after reading the replies. Its so true, that as long as I keep moving around, its not so bad, but trying to lay down and rest after lots of housework, etc., it starts up almost instantly, and then I CAN'T rest because my heart is going beserk! Its usually much worse for me when I'm tired.

Timbre, I DO exercise, every day, usually six days a week. I have a stationary bike, and do about 5 miles a day. Not much, I know, but remember I'm 50 years old, lol. The only days I don't are when I absolutely can't (family dinner or something). Exercise, sadly, has not improved things. I'd say its about the same as before I started exercising (about 10 months ago, when I started my low fat diet). Nothing really seems to help.

DavieVegas, I don't know how you do it without Xanax or anything to calm you down. Back when I didn't know what was wrong with me, I didn't take anything, and after a while, I hit rock bottom. I just couldn't take the fear anymore. I had what they used to call a nervous breakdown. I wasn't hospitalized, and was still functioning around the house, but I had panic attacks back to back, all day long - couldn't even sleep at night for any length of time because I'd keep waking up with my heart racing and flopping around. The palpitation attacks were terrifying. My heart would often go so fast that I couldn't even count it. Often 160+. At that point, I HAD to go on something or lose it completely. The fear of my heart stopping or of having a heart attack was paralyzing me, literally. I could barely make it through the day. Its a living nightmare. That is when I started having panic attacks, and still have them to this day. Fortunately, the Inderal I take three times a day have more or less stopped the racing. DavieVegas - the beta blockers WILL NOT raise your blood pressure! In fact, they lower it, and even your heartbeat out so its more regular. They ease the work load for your heart. I've had NO side effects whatsoever from this drug, and I've been on it 10 years now. Its been a huge help to me. And believe me, I have a drug phobia because of bad experiences with antidepressants. I've read that if ANY drug can be good for you, it would be beta blockers. So don't hesitate, if a doctor suggests you start taking it. I honestly think you need to - you are on your way to becoming like I was all those years ago.

Outofsync - I have the same type of rhythm that you have - only mine is every other beat being irregular. That's when its acting up the worst, and I've found that leaning forward while sitting in bed helps me more than anything. I don't know why - something about the body position. I can't lay flat because I can feel the irregular beat so much more in that position. If I stay in that forward position until the Xanax takes effect, my heart will often calm down on its own and I feel a little more rational instead of blind panic.

My MVP is also described as "mild." This really cracks me up. If the heart can go this crazy with "mild" MVP, what must it be like for the people who have "normal" MVP? Or God forbid, a severe case? I can't even begin to imagine what life would be like. I'd have to go around sedated all the time, and even then I'd be a basket case! As it is, I have to take Xanax twice a day, most of the time, in order to just live a half-way normal life. And I say half-way, because, as I already mentioned, I don't do things and go as many places as I used to for fear of an episode. Oh, someone mentioned "that time of the month" as being worse. Agreed! The week to 10 days before my cycle, I'm a wreck from both the heart skips and the anxiety.

Once I was in Target, and was really enjoying myself. It was my day out to do whatever I wanted. All of a sudden I got a huge thump in my chest, and that was the end of my "fun" day. After that I couldn't enjoy myself anymore for fear I'd have a bad episode. I remember one day I turned around and drove home after setting out to do errands. My heart would act up, then go back to normal, and then act up again. It did this over and over. I finally gave up, and drove home. Didn't know if I'd ever even make it home - that's how bad it was. Took some Xanax and felt much better 45 minutes later. So then I went back out and did my errands - no more trouble. I just hate the insecurity of never knowing when its going to strike.

Randi

 
Old 03-30-2006, 07:04 AM   #10
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Re: Mitral Valve Prolapse - this sucks!

An update...

I went and saw my very trusted, family physician and told him what was going on and after he talked to me for about 10 minutes and I nearly broke down crying, he told me that I had ALL the symptoms of GAD (Generalized Anxiety Disorder) which goes hand in hand with MVP. I am to begin Lexapro today and up my dosage of Tenormin from 25mg at night to 12.5 mg in the morning and 25mg still at night.

I am in college (33 years old) and he said the stress of going back to school can be very taxing on the body and I admitted that I am having trouble shutting things off. I told him it was like I get these rushes over me that feel like you get when your going 65mph in a 35 and you see a cop car hiding in the bushes and you get that "OH *****!!!!" feeling come over you. He laughed and agreed that I am over stimulated. He also said that the extra beat (mostly PVC's) are a symptom of being overstimulated. It's like the adrenaline is pumping and "surging" and my heart is in overdrive in response to it and the rest of body is staying still (I have a sit down office job). Especially a night...when I lie down to sleep, the same thing...my heart is pumping from the adrenaline but I'm trying to sleep. That is why night time is so hard to deal with.

Hopes this helps those who seem to have the same symptoms that I have...see your Dr. about anxiety!!! He/She may have some suggestions about the anxiety issues. Seems like ALOT of folks on here are having LOADS of anxiety issues as anyone would whose heart seems to be almost stopping, I mean GEEZ!!!

(PS-he says that folks who are genetically predisposed to have the ectopic beats or "extra beats" or "skipped beats" will present with them when they are overstimulated with corisol or adrenaline)

Good luck to all....my heart is still skipping beats pretty badly today but with time, hopefully in time the adjustments in medication will help. I can only hope!

 
Old 04-01-2006, 11:48 AM   #11
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Re: Mitral Valve Prolapse - this sucks!

Outofsync - you are SO RIGHT! My doctor also told me that one in three people who have MVP also have panic disorder, and no one knows why. I think I know why - the heart releases adrenaline when it has PVCs or whatever other irregular beat it is experiencing. And that is what causes our panic reactions. That makes sense to me. And about the adrenaline - the drug you need to avoid like the plague is epinephrine. When I go to the dentist, I have to INSIST they do not use ANY epinephrine (or any other drug in that family) in the numbing injection. If its used on me, my heart will almost instantly go into overdrive. And that, in turn, causes a major panic attack on the spot. Its not pretty, let me tell you! I recently had to have an ingrown toenail surgically removed by a podiatrist, and I told him right away that I COULD NOT have any epi in the shot. I made him promise he would use the straight Zylocaine. Luckily, he was great about it and complied. But if he'd said he didn't have Zylocaine WTIHOUT epi, I would have walked out of his office and called around until I found someone else who could do the procedure without it. I had a bad experience once with a dentist who agreed not to use the epi, but then used another drug in that family instead. He said it caused problems less often. Well, guess what? Same exact reaction. So now I have a trust issue with doctors and dentists. I don't mind a little pain or discomfort, but give me something to make my heart race or skip, and I'm an instant basket case. Asthma medications have ingredients that can cause the same problems, and sometimes severely, and I think that is what sensitized me to that family of drugs more than ever. Luckily, I haven't had any asthma for over 15 years, and honestly don't know what I'd do if I got it again, because I can't tolerate the drugs used to treat it.

One other thing - lots of cold medicines have an ingredient which is in the epi family. They constrict blood vessels, and anything that does that has the potential to cause heart palps in a person with MVP. Read labels before taking any of them! There are very few I would even consider taking for fear of a bad reaction. I can safely take Robitussin DM. It contains Dextromethorphan, which helps with coughs and loosening up phlegm, but does not affect the heart. Look for ingredients such as Norephinephrine, and anything that ends in "phrine," because any of these ingredients can aggrevate heart symptoms. We people with MVP really need to assert ourselves and take responsibility for our own health care because sometimes doctors don't realize how certain drugs can affect us.

Randi

I take Xanax daily (as I mentioned earlier in this thread) and have for the last ten years. My primary doctor said I'd probably have to be on it for the rest of my life, due to the MVP.

 
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