Need answers about cardiac....

BABYGIRL_RN · Feb 28, 2002

HAVE YOU EVER BEEN TOLD THAT YOU HAVE MITRAL VALVE PROLAPSE/SYNDROME. I DO AND HAVE A LOT OF YOUR SYMPTOMS. JUST ASKING.

MickeymomRN · Feb 28, 2002

To: BabyGirl_RN

I don't have MVP. I have mitral valve insifficiency with moderate regurg. The first cardiologist just said it was from degeneration but with my history I'm beginning to think otherwise.

Doey, BSN, RN · Feb 28, 2002

That's what I was thinking too, MVPS. I've had a couple of patients with the symptoms you've mentioned. Apparently the syndrome consists of MVP,NCS,headaches,fatigue,chest pain,palpitations,SVT,PVCs. Some physicians will say that none of the symptoms are related because there are many who have MVP and have no symptoms whatsoever, and there are those who have these symptoms with no MVP. I think it could be because we have not yet found the physiological connection between everything. And of course there are the physicians (and others) who just see a hysterical woman, and because nothing concrete can be found, it must be all in your head.

I have seen pacers used with NCS that have been successful in controlling the symptoms and I have also seen it used where it hasn't. That alone tells us there is something else going on that we haven't put our finger on yet. (implantation of a permanent pacemaker is generally a very safe procedure. But as Matt stated there can be complications but these are rare).

With one patient, the doc ordered Florinef, TED stockings, and increased fluid intake and it worked. Dehydration, even mild, can exacerbate the condition for some.

It sounds like you've had appropriate diagnostic tests, but have you ever had a tilt table test? That is supposed to be the gold standard for diagnosing NCS.

Beta blockers are used because of the increased adrenergic activity that accompanies this syndrome, hence the PVCs or SVT. In NCS there is a malfunction in the nervous system.

No matter what, I feel that if you present to the ED with CP etc. you should still be treated as a r/o MI and have the same diagnostics as everyone else. But that's just me.

Along with the beta blockers, SSRIs (like Prozac,Zoloft) maybe ordered. Now don't freak out, it doesn't mean you're crazy. The SSRIs have been found to work in some with controlling the symptoms.

Here are a few sites I found that ight help you out. At the very least you'll know you are not a crazy,hypochondriac female.

http://www.mvprolapse.com/

http://www.ilovejesus.com//myhome/mcpeg7/MitralValveProlapse.shtml

http://www.aafp.org/afp/20000601/3343.htm

http://mdchoice.com/searchframes.asp?sURL=http://www.postgradmed.com/issues/1998/01_98/grubb.htm&rURL=http://mdchoice.com/index_content.asp?

Good luck, and keep us updated.

MickeymomRN · Feb 28, 2002

Dear Doey,

Thanks! you have really lifted me up! Even though I'm "only" an OBRN (And I'd love for those who say that walk ,I mean run, in my shoes for a shift on my hi-risk unit. ) , I still have some idea about the heart. And with all these heart symptoms you'd think that they would be related somehow. I am just so glad that I am getting some answers but I guess not quick enough for me. I returned to work last Friday since being on leave since last November. My doc really didn't want me to but financially my DH wanted me to. After 2 shifts I don't think that I can do it more than once a week. Which won't make a dent in our debts. I worked Monday night for 8 hrs and ended up almost passing out at work. I had to call my DH and friend to come pick me up and the truck. I puked all the way home and kept "greying out". When I did get home, I passed out again and then went to sleep since it does exhaust me even more. As for the TTT, I did have one done and it was + :imbar

I have an EP appt this afternoon. I'll let you all know what transpires.

Doey, BSN, RN · Feb 28, 2002

Sorry Mickeymom, I must've been writing as you were posting.

But is your MR caused by MVP? Did you ever have rheumatic fever? Any collagen disorders? These can all cause MR.

Doey, BSN, RN · Feb 28, 2002

Mickeymom,

That sounds awful!! Obviously this is not just a rare thing for you and definitely effects your day to day life. (what da ya mean, you can't stop running on your unit for a few minutes to pass out and puke!! LOL Just kidding)

I hope you get some answers at your appointment this afternoon.

I don't know what your EP doc is like but don't let him/her get away with the it's nothing/it's not all related/your anxious/nervous/etc crap. I have a feeling you won't!! And do let us know what happens. Will be thinking about you.

Jas honey · Feb 28, 2002

hi Mickey,

I am an EP nurse, have been for the last eternity..ok the last 18 years. If you havent had one, ask your doc for a 30 day event monitor, this you have for a month. the monitor records a continuous one minute loop of ECG recording. the monitor is the size of a pager, and has two leadwires. you wear it all the time (not at night if you dont have symptoms at night) and press the record button when you have an event. it then saves the previous 30-45 seconds from when you push the button (that setting can be programmed per md preference) and saves the next 15-30 seconds after you have pressed the button. the recordings can be sent to the doctor office over the phone. generally you can record 5-10 events, and some have automatic event recording if you go over or under a certain rate setting (this is also programmed by the md)

we have discovered the source of many syncopal events and dizzy spells, etc., using this monitor, and it gives you more time and opportunity to have an event that you can record (better than a holter for this instance) holters are good if the symptoms happen reliably every day, but if they dont, you are sure out of luck with a holter. and who wants to wear that thing more than once anyways!!LOL

i sympathize with you, it is sometimes very hard to fine tune a therapy program for all of these problems together. i wish you good luck.

best regards,

Nancy

Jas honey

MickeymomRN · Mar 10, 2002

Thanks for all your ideas here!

As for an event monitor, no I haven't had one. Only a holter as I said when I was having good days. Only once it did good and got all my PVCs. I don't know if I can wear one for a month straight though. Do you just put it on when you feel something? It sounds like it's similar to a holter.

Anyways, did see my EP. Yes, I let him get away with telling me that he's going to focus on my NCS first then my PVCs then my MVPS. My DH came with me cut he was too preoccupied with the babies that I don't think he heard a word we were saying. Took me off of beta blockers totally. Placed on ProAmatine. Wow! What side effects! It feels like my hair stand up on end and then it just crawls down my back or right side. Usually only the right and not the left. Really dizzy when I turn my head too fast. then when it wears off in the evening, it's nighty night. So glad though b/c I'm finally sleeping thoughout the whole night. YEAH!!!!!! No nightmares, no teethy characters, no waking up every hour on the hour. So we'll see.

Question: How high do they usually go with the ProAmatine? Do the s/e go away? I did notice that I got headaches at night. Something new. Wondered if that reflected my b/p.

Another question: should I ask if I should get an EP study done?

Thanks everyone! Hope all is well in your household and having a great weekend. It was beautiful here in sunny florida. High of 85.

:kiss , Leilani

I'm so happy b/c I cleaned 3 rooms these past 2 days. And I worked 7-11p last night. ( Only had 2 pts. though)

OC_An Khe · Mar 10, 2002

Everyone has given you very informed opinions and good advice. You may want to look into joining and wearing a Medic Alert bracelet. Just a thought if you have to deal with EMS/ER again (hopefully you won't). It may not make them so cavalier in their attitude towards a young woman who presents to them with cardiac symptoms. Did the calcium channel blockers help?

MickeymomRN · Mar 10, 2002

I do have a medical alert bracelet from being anaphylactic to abx. I just got my new one with the added NCS on it. The calcium channel blockers didn't help much. The PVCs continued.

nursemicke · Aug 10, 2002

Go to Medscape.com Click on CE center and read "The Importance of Gender on the Presentation and Management of Cardiac Arrhythmias.

MickeymomRN · Aug 12, 2002

Thank everyone for responding and giving me excellent feedback!

nursemicke: Thank you for the link! The article was good information. More on this topic in my update. Thanks!

Everyone: Since most of the posts were back in the spring, I wanted to update you on what has happened since.

I've been off work basically except for a couple of shifts to see if I was ready to return to work. My supervisors have been excellent! They have been understanding and way accomodating. They suggested shorter shifts so I went from 12's to 8's. I still couldn't make it thru the entire shift and definitely couldn't drive home. I then went to a world renowned doctor in Ohio (coincidentally in my hometown area and at the hospital where I volunteered when I was a teenager). He was excellent. My appt lasted for 3 hours!! And I'm not complaining because the entire time except at the most 15 minutes was seeing and talking to someone from the office RN to ARNP to the doctor himself! My DH was present so he understands more about my NCS. I even learned more about my NCS. He changed my meds and all of them gave excellent advice as to how to manage this disorder. No the meds aren't working to get me back to normal like some would think but it has helped a little. My last complete sync episode was last April. Doc told me that I must accept that it will stay with me til I die. He's also the only one who told me that yes it's possible that I could die "from" it. It's even noted in his book that he published about the disorder. As for the PVC's and chest pain and EKG changes, he said that it could be part of my NCS or it was an MI. My cardiac enzymes were abnormal but there was no follow up. So he's leaning more toward the MI but can't say for sure since the appropriate care was not given to me. AND he also was concerned about my murmur. Which a year ago was not always detectable upon ausc but now even my DH can tell it's different from his own. (He's an auditor. No medical background there.) I am to return for a follow up in February of 2003. I am more at ease with what I have now. I wish that I still lived in an area with exellent health care but there's a plan for me to be where I'm at right now. I still have the chest pain and the PVCs but not quite as often. I am resting more (at least 8 hours of sleep) and trying to return to work. My shifts have been reduced from 8's to 6's and now 4's. I found out last night that I can't do 3 in a row but at least I'm driving myself home after these 4 hour shifts. There's hope. I'm confident that things will work out. Almost forgot, we did discuss a pacer and that's on hold for now. He said that it will hamper my getting disability insurance if I apply for one. I presently do not get disability and am not eligible to be covered at work. I don't have vacation or sick time. He said that if I still have problems that he will consider it in the future.

:kiss Thanks to all for your input! Please, if there's anything else that I'm missing or that would help me out, don't hesitate to let me know.