How do I deal with pvc's/pac's and not being able to exercise?

[wannathrive_21]

I am so thankful to have found this way to connect with others who are experiencing some of the same things I have for years now.  I am a 41 year old mom of four and a foster son.  I was diagnosed with sarcoidosis of the lungs about 10 years ago and soon after began experiencing numerous cardiac symptoms.  I  experience extra beats, which I have had occasionally since I was about 21, but have also experienced incredible pounding and pressure in my upper belly, chest, neck, and up into my ears. It is similar to feeling like someone turns up the pressure of my blood vessels like turning up a hose or something and you feel every heart beat so strong and powerful. This would happen with any slight exertion (sitting up, standing, trying to walk up a slight incline etc.) My blood pressure and heart rate would rise drastically (once documented in the hospital my bp. went from normal 114/70 to 167/100 and hr. went from 70 to 160s just from standing slowly)   My husband, for a while, had to carry me up the stairs because of the pounding and pressure.  I would have to do a little bit of exertion and then stop to let the pounding up my throat, neck, head etc. die down some and them take some more steps.  or whenever I stood/stand up have to wait for the rush of pounding pressure to lessen and then start to walk.  I have been on metoprolol for about three years now to help extra beats and also to control the surge of my bp. and hr.  The docs cant figure out why its happening. The meds have helped a little so that I can walk around now but not much more then that.  Thing are worse around my period and that's the only pattern I have figured out.  The extra beats make me feel like I'm a slave to them . I feel like they control what I do and I don't do.  I don't want to leave the house so I wont experience them when I'm away from where I feel the most safe and comfortable(home)  My life has changed so much.  I use to play volleyball and be active and miss it so much.  I stay at home and my family goes to hike. Even when I'm having a better day and Id like to try and do some activity I'm so petrified that I'm going to do too much and something is going to happen.  I'm so tired of feeling this way.  I feel like I don't have a second that I'm not thinking about my heart and is it going to stop, or should I try to walk up the stairs cause I know that it makes me feel worse and leads to extra beats, pounding etc.  I tend to notice that lifting, bending, sitting up from laying down tend to bring on extra beats, but sometimes its just after I sit or lay down.  It makes it so hard to just relax cause I'm always wondering when the next one will come and how bad will it be and how bad will it make me feel.  I tend to yawn and burp more when I having more pvc's/pac's  
I would love any advice.  Dr. at Hopkins are stumped.  I have worn heart monitors, had cardiac echo, MRI of the heart, etc and no one can figure it out. I feel very alone.

[MichelleP_3811]

You said you were diagnosed with sarcoidosis of the lungs?  It is possible this is compounding the problem.  If your lungs are not functioning properly then your heart will try to work harder to compensate thus giving you the high bp and sensation of feeling your heart pounding through your body.  
Here are the things they say may help you manage the disease which can come and go from what I read.  Eat a well balanced meal with fruits and vegetables.  Drink lots of water.  Water will help the heart function better.  Make sure you get a good nights rest. Quit smoking if you smoke and  get regular exercise.  I know you said you found it difficult but discuss with your doctor whether it is safe and if so how you can build up a routine slowly.  the more conditioned your heart is the, the better it will function with the other health issues you are dealing with.  

I had an svt my whole life where my heart would fall into episodes where it would beat well into the 200s.  Before I started a cardio routine I did not tolerate the episodes well at all.  I had to lay down for fear of passing out.  Once I started to exercise regularly I could almost function normal during an svt episode.  I know it isn't quite the same thing as you but maybe if you started to do some walking on a treadmill.  Nothing too taxing but something done everyday slowly building up your strength it may help.  

I might also ask if there are any medicines or breathing exercises you can do to help with the lung disease.  Maybe if you worked to build up the lung strength it would take the strain off the heart.  I think the promising thing I read is that the lung disease can simply go away on its own so that does mean at some point you may feel better on its own.  I do hope you are able to sort this out.  In the minimum drink plenty of fluids, stay away from caffeine, sugar and carbohydrates and try to eat smaller meals at mealtime and see if it helps.  Best of luck sorting it out.  Keep us posted on how you are doing.

[wannathrive_21]

Thank you so very much.  I can't even express to you how much it means to hear your caring advice.  I am new to this support group/community thing and wish I had joined one a long time ago.  I have felt so alone at times.  It is so nice to connect with people who relate to what you are going through.  I'm so use to being around the people that I know and them not being able to relate whatsoever.  This illness takes a toll on my family and marriage as well.  They don't understand what is going on and get tired of me not feeling well just like I do.  I try to keep as many of my symptoms and feelings to myself because it feels like there is always something wrong with me. I don't like continually dumping on them.  In a way it's better but it's lonely.   I just want to be "normal" like I see other moms around me being.  Being able to be active with their kids etc.
I have a Sarcoidosis Dr. and will ask him about lung function and my heart symptoms.  
I know that I need to be exercising and after reading how so many people have pac's and pvc's and are ok, it's giving me a little bit more confidence to start small and build up.  
Thanks again for your time and advice.

[Kadam96]

Hello, im sorry to hear that you suffer from extra beats and all but can you give us more information on the tests you have done ? Ecg? Echo, holter, stress test,? And if so what were the results ?
I May be wrong but maybe its a vague nerve problem, its the nerve that slows down or speeds up the heart rate in response to exercice or anxiety. Dont worry you are not alone on thist forum

[wannathrive_21]

I've worn a halter and event monitor, that showed pvc's and pac's, but Dr. didn't seem concerned about them.  I had an echo and confirmed  mitral valve prolapse. I had an MRI of the heart to check for Sarcoidosis in the heart and that came back negative. I was  monitored in the hospital for a few days and confirmed pvc's and pac's as well as sinus tachycardia and high blood pressure upon standing or with mild exertion. My blood pressure and heart rate would return to normal range when resting again.

How would I test for problems with vegus nerve?
Thank you