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Posted 3/12/2008 7:11 AM (GMT 0)

Hi Everyone,

 

I am new to Healing well and I just have a few questions to ask.  I was diagnosed with viral pericarditis last December 07'.  My doctor has trouble figuring out what was wrong with me at first.  I had a total of nine trips to the ER over a two month period.  These were all very scary experiences because every time I felt like I was having a heart attack.  Oh did I mention that I am only 21 years old!  I remember what it was like to feel completely healthy before I got sick.  Now my doctor says that I am perfectly healthy.  I believe it but I still don't feel it.  Everyday I have pain in the left side of my chest and up into the under side of my arm pit.  I also have what feels like constant muscle spasms inside my heart.  I had an echocardiogram and multiple EKG tests done at the time I got sick and everything checked out better than normal.  It is very frustrating to have this pain all day long and try to ignore it.  I go to the local university full time and also work part time along with some volunteering.  Does anyone know what this might be?  Is there any test that might help me figure out what is going on with my heart?  Also are there any medications that could help me feel better in the future? I just hope I can figure out what is going on and possibly feel as good as I used to.

Thank you,

Jared

Posted 3/12/2008 7:31 PM (GMT 0)
Hi JKR217!

Since you said you had an echo and it checked out ok, I don't know. Sorry. I was injured which caused my pericarditis although the dr.s lied and called it viral for a whole year until I finally got one to admit it was from trauma! This was after having a pericardectomy and I have heart pain everyday nearly from the further trauma.

Can you breathe despite the pain or is it impaired?
Posted 3/13/2008 6:56 AM (GMT 0)
I can breath okay its just the spasms in the left side of my chest. I constantly visit the doctor for check ups and ask him questions. I just want to find out what it is and how I can use my time at the doctor in the best way possible. Im sure as most of you know who are reading this that having pericarditis is very painful.
Posted 3/26/2008 8:16 PM (GMT 0)

Hi, I was wondering if you found out anything further.. I just was diagnosed with pericarditis last week and also have been having pain radiating from under the left armpit for a few weeks.  I assumed it was a muscle aggravation from carrying our infant but through routine physical they found pericarditis and began giving me a 5 days of toridol (which has helped the heart pain, but not without gastro-intestinal/stomach side effects) but the armpit pain has returned.

I was thinking of seeing an orthopedist / trying to see if maybe i have an infection but curious what you've found.

Posted 3/27/2008 5:39 AM (GMT 0)
Hey there Jared..

I contracted it on Feb 23 and at first I thought I was having a heart attack. I have rather high anxiety as is and the pericarditis only amplifies the pain,etc. I also get spasms in the left side of my chest and heart. I don't get too much pain, but more of an uncomfortable like sensation. After I eat, especially anything fatty in nature, my heart chest seems to tense up as well. The doctor put me on 1mg of Ativan for the stress and I was on 325mg of aspirin for about 2 weeks. Been in the hospital 3 times over the past 5 weeks and I see that you've been there 9 times over a 2 month period. Scary as hell, but since it's viral in nature it just has to take its course. If you are still concerned go talk to your doctor. I still worry about it..when I will get better..will I have this forever,etc, but keep positive. There are some meds out there if the condition is that bothersome..ask your doctor or get him/her to refer you to a cardiologist.



Hang in there..I am 33...let me know how things go. It always helps to have support from others with the same experiences.
Posted 11/2/2008 8:07 PM (GMT 0)
Hey all - I am new to Healing Well - thought I would try to share what has been happening to me with this darn pericarditis. I have had pericarditis for three years.  Occurred after a pericardial window was put in....fluid build up with no symptoms.  Yes, the paid is awful. I have been on colchicine for almost a year now.  It does not take pain away, it actually helps with the occurrances.....YEA!  Haven't really had pain since JUNE - but in pain now -hence checking in with you here.

Posted 11/10/2008 7:21 PM (GMT 0)
Hi everyone - this is my first post, I am happy to have found others in my same situation, I have been feeling very isolated with this. I had my first bout about a year and a half ago, and thought it was over - I like others thought I was having a heart attack, was kept overnight for lots of testing and sent home with a pat on the head and told nothing was wrong. $6000 worth of hospital stay and testing. I just got out of that financial mess, and about six weeks ago it came back.

My internal medicine doctor finally diagnosed paracarditis, and put me on Prednisone right away. I started off at 20mg, but it has come back about once a week since, and right now I'm at 45mg to have any sort of pain management. I ended up in the ER again last week just to get some pain help. Everyone says the Prednisone is bad, and I already have osteoporosis, so I am worried about continuing to take it, but nothing else seems to help.

My doctor is now trying to refer me to a rheumitologist - is this valid? I am in the Denver metro area and hope that someone can make a doctor referral in this area. I have missed four days of work in the past month with this, and am getting fearful of losing my job. I am a law enforcement officer and I'm afraid to tell my employer that this is heart related, I'm sure they would find a way of letting me go. I can't determine how serious this is, I read some articles that say 1 in 1000 people gets this, and others that talk about surgery and your life being limited forever.

Also, any thoughts about this being hereditary? My doctor says no, but I remember my father having this too when I was a kid, and he had to had the fluid drained off. He also passed away from a heart attack some years later, and I have a lot of heart history on his side of the family. You bet I'm worried - I have always been very physicaly active and healthy, and I can't accept that this may be my future.

I had a bad broken leg several years ago and found a similar forum that really helped me through the situation, so I am really happy to have found this site. Thanks in advance for any responses.
Posted 11/10/2008 10:37 PM (GMT 0)
Hi StillHoping and welcome!

I'm on my second bout of it myself! The first time I was put on prednisone,it seemed to help somewhat but it never completely went away and I developed all the horrible side effects from it, so I'm not a real huge fan of it. Now I'm trying to deal with it mainly with NSAIDS and pain pills. My second cardiologist actually pulled me off of the prednisone as it has been shown to cause it to return. I know others feel it gave them relief though. Are you seeing a cardiologist for this? Have they done an echo on you? A rheumatologist can be good to go for this also though as many times Pericarditis has been linked to auto immune disorders. It doesn't have to be seen as an end of the world kind of problem though, so don't fret too much about it but do get hooked up with a cardiologist and rheumatologist who have treated Pericarditis. Is there a Mayo clinic or other teaching hospital near you that you might be able to get a referral from?

Good luck ,

Cynthia

Posted 11/10/2008 11:52 PM (GMT 0)

Hi Still hopeing - gee - I hope I am replying correctly - this stuff is all new to me.

I have had peri for about 3 years.....last March - my cardiologist found out that colchicine (used for gout) - helps with the occurrences of the attacks.  I went from one every month with trips to the hospital to 3 since March - which I think is fantastic. As you know - the pain is debilitating...anyway - I am on .6mg twice a day....it seems to work.  Ask your Dr. about it.  Again - it does not take the pain away - but gives you some peace in between.  Yes, prednisone is not good, however, I call it the wonder drug because it's cheap and it works for me.  SO, now my cardiologist won't prescribe it unless I get really bad - so currently I am on 800MG of Motrin 4 times a day....for about two weeks until I get thru this attack, with an occasional Darvon for pain.  I have been in pain for a week but I feel it subsiding a bit....so please - ask you cardiologist about the colchicine.....Hope things get better.

Posted 11/11/2008 12:45 AM (GMT 0)
Church is correct about the colchicine. There's been several studies on the efficacy of it. I used it in the past but have been so inundated with various meds over this year (mine does seem to be possibly related to an autoimmune syndrome) that I'm trying to keep it simple as possible (I've had to go back to beta blockers as my heart has been going into tachycardia again so that's one more  pill to take).
Posted 11/11/2008 9:55 AM (GMT 0)
Thanks so much for the responses - I have been reading everything I can find on the net and actually had seen the colchicine mentioned. I'm not sure what it is exactly, but was intending to ask my doctor about it today, however they did not return my phone call. I had also seen that CoQ10 might help, so I picked that up today and will try that also.

Part of my frustration is not knowing if I'm seeing the right doctor- my internal medicine doctor diagnosed this, and yes I have had EKG's and an echo. I went to see a cardiologist, who wanted to get me off the prednisone, and when it flared up again told me that there were too many cooks in the kitchen and to go back to my internal dr! They have also tried celebrex. Now my dr. is wanting to refer me to a rheumotologist. I feel like they are not sure what to do so they are trying to get rid of me.

I did want to ask if others notice that the pain moves around - mostly I get it in my upper chest, but also around my throat, hard to swallow, and up my neck, but today it was on top of my shoulders. I never know what to expect each day. I'm also very puzzled that it can be SO bad for part of a day, and then almost totally disappear just to come back in a day or two.
Posted 11/23/2008 3:39 AM (GMT 0)
Hey everyone-

I'm a 29 year old male and haven't had any serious medical issues until this. I've been diagnosed with Pericarditis as of 11/7/08, but have had the symptoms since July of '08. First off, I just wanted to chime in and say that I had a negative experience with Colchicine. It made my stomach feel constantly full and applied pressure to the underside of my lungs. I'm sure everyone who has Pericarditis can tell you, additional trouble breathing is no fun.

My diagnosis was difficult. Several symptoms including shoulder, neck and chest pain led my doctor in a few different directions. I ended up having two MRI's on my neck checking for pinched nerves, and after no findings, I was referred to a Gastroentonologist. I had a stomach scope done, which found nothing. After two full months of no attacks, it came back in the first week of November when I was finally diagnosed.

Since being diagnosed and starting treatment, I haven't felt normal at all. My trouble breathing is persistent and I have already lost faith in the cardiologist I was lucky enough to have assigned to me while in the hospital. They've got me taking 800mg Ibuprofen 3x a day, 25mg Lopresser 2x a day and a stomach pill Prilosec 2x a day to keep the ulcers at bay. As stated above, I believe the colchicine to have had a negative effect on me. I only took it for 4 days, and I attribute the most excruciating shoulder pain to this due to the fact it hasn't been part of my normal symptoms until now. Due to the additional pain I was in w/ the colchicine, and after another long stint in the ER, it was determined that I've also got a pneumonia. What a bonus.

I can't say for sure if this forum is a positive for me because after reading so many negative, long drawn out, stories of pain and no relief, I've lost a certain amount of optimism.

One question I do have. My doctors are saying that they're sure that my pericarditis is viral. However, I had two separate rib cage injuries in the 4 weeks preceeding my first attack or onslaught of the symptoms. Is there a difference in the ways the doctors treat viral vs trauma related pericarditis?

Thanks,

Grant
Posted 12/10/2008 3:39 AM (GMT 0)
Hi,

those of you who have been diagnosed with pericarditis, may I know what tests were involved that lead to the diagnosis?
Thanks a bunch.

Pinks
Posted 12/10/2008 12:33 PM (GMT 0)
Pinks-

My diagnosis took forever, but it was eventually nailed down after an abnormal EKG and an Echocardiogram that showed a substantial pericardial effusion around my heart. CT scans are also helpful. Every time my symptoms showed up, my heartbeat was near 120 while resting, so that could be a clue too.

Good luck
Posted 12/11/2008 4:25 AM (GMT 0)
I've been having symptoms and still searching for answers from different doctors.
Elevated heartbeat is usually linked to anxiety.
CT scans - where I live, the doctors won't do a CT scan on a young woman because of the high risk of developing cancer during old age.
I wonder what doctors really mean when they saw an EKG looks 'somewhat normal' or 'appears to be normal'.
Had only 1 echo done which was normal.

Until now I have had symptoms but no proper diagnosis.
Am currently on anxiety meds which are not helping at all.

Sigh.
Posted 12/11/2008 1:43 PM (GMT 0)
Pinks-

Read this forum I found on CT scans. You may not require one, but I don't think your doctor should write off the possibility or need for having one.

http://www.patsullivan.com/blog/2006/10/ct_scans_cause_.html

They had diagnosed me with Acid Reflux for 5 months before the pericarditis symptoms took a strong enough hold to truly show what was wrong. Good luck.
Posted 12/20/2008 2:33 AM (GMT 0)
Thanks Grant B.
Posted 1/2/2009 7:17 PM (GMT 0)
Hello:


I, like many of you suffer from pericarditis, i am 27yrs old and first contracted it when i was 24, i have been able to live well without problems for 2 years but it caught back up to me recently, i was given nearly every treatment known for the disease. I was screened heavily for any answers, treated over and over with rounds of steroids and indomethicin (asprin). colchicine has been the best help out of all the drugs given. i am able to return to a normal lifestyle for about a years time in between attacks. my cause of pericarditis is idiopathic. unknown, i had a pericardial window put in in 2004. i am wondering if i should remove the pericardium.


I am very very healthy, i run, lift weights, live a pristine lifestyle. Don't smoke or drink and eat healthy all the time.
I know i could have it a lot worse, so im not complaining, its just hard to see the window of pain relief when you are stuck in the rut. Its so debilitating, like many of you i just want my life back.

a sedentary lifestyle is not for me
Posted 1/3/2009 10:54 PM (GMT 0)
Hi,

i am 19 yrs old. i have been ill the last yr! :( at first i had tonsillitis for a month last december and it i felt terrible for ages. then a month later during a run i felt like i couldnt breathe properly and was struggling to breathe in fully. the following months i had central chest pain and was making me feel tired all time with no energy and no pain killer was helping. i saw my gp who said i had costochondritis, and was given painkillers which didnt really help that much. i went back to see my gp in april who said i had a fever, chest pain, high blood pressure, high resting HR of 115bpm, i was referred straight away to hospital where they did chest x-ray, blood test/pressure, ecg's. no problems, but was referred to see a cardiologist. the cardiologist told me to have an echocardiogram, exercise stress test and pulmonary function test. these showed that i had pericarditis. in september i went back in and was told all results were normal and the pericarditis has gone! however i was still experiencng gradual sternal pain and my left lower ribs are tender and i get sharp pain there every now and again, and was then told i had post viral syndrome!

however i wondered because there is no evidence of having it anymore i still fell the same pain, also because ive had a few problems i dont really know which diagnosis the pain is from?

any ideas anyone?

x

Posted 1/5/2009 9:37 PM (GMT 0)
hey justme,

the problem with many doctors is that they treat you like they would treat anyone with this condition, they look at the book or look at suggested therapy and write it off. They dont take the time to treat you as an individual. This condition is a very fickle one. Everyone responds differently. Yours being viral i am not fully sure how to treat it properly other than to tell you your heart is under attack. You have to rest, although you want to get out and be free and have your life, for a short time you need to rest cause from your story it seems that your heart had a lot of stress for a few months. I was giving up hope until i stopped and took 3 days and slept and gave myself a chance to relax and recover, it may take longer. mine was brought on by trauma and i had to wait the first time 4 months before returning to physical activity.

I went 3 years before a flair up after that because of many factors, but you can beat it, considering you dont have any other serious diseases. My therapy for myself consisted of rest and colchicine every couple of days. just to be safe. pain killers just kill the pain they dont heal you, they hide your symptoms. Cortical Steroids are a serious risk too, they work quickly but they dont help cure you, waaay to many side effects and when you stop it comes back eventually. Your body given the chance will heal itself, but you have to let it.

The problem with the heart and disease is that when things happen and stress enters that area, the body cannot tell the difference between "self" and "non-self" so the bodies natural defense is to swell and inflame, just like when you get a bruise or a bad bump you swell. Its a natural defense against things. So what Im saying is you have to let the body fight the virus and let the drug colchicine take care of the unnecessary swelling because your bodies defense system is not perfect, this is one of the flaws in our healing.

I was under the thumb of medicine and doctors for too long. I had surgery, then put on aspirin, blood pressure meds, stomach meds and even steroids. Each one needing other meds to stop the side effects of those meds. I had enough. My bp was really high with my attack, but without the stress on the heart it was normal, nearly perfect.

I still run..lift weights..and do all the things i want to. My body just needed a little help. i may have rambled too much but the point is dont give up. colchicine is an anti-inflammatory anti-fluid drug, but it is very dangerous. maybe this will help maybe not but you know your body best.

chiroguy
Posted 1/7/2009 4:16 PM (GMT 0)
Hi everybody,

For the last month and a half I have been experiencing problems with my heart. Otherwise I'm a 25 year old healthy male who takes pretty good care of the body. It started off as some of you have described as a rapid heart beat, and awareness of the heart and some chest pain. I was rushed to the ER thinking I was having a heart attack. I also have gone to see a cardiologist. I have had blood work, thyroid, and an EKG done. However, since I don't have insurance at the moment costs are becoming very high. My cardiologist has said that everything seemed very normal and that I might have a virus( He did no mention a name or anything). It seems I don't have the severe pain that many of you are talking about. Mostly just a little pressure and a little pain if any. However, my problem is that when I try to relax (mostly at bed time) I am totally aware of my heart beat. It is a regular beat, and has slowed back down to normal since, but I am still aware of it. Mostly it keeps me up at night and I have been suffering from very little sleep of late. I was just wondering if anyone has any ideas?

Thanks
Scott
Posted 1/13/2009 9:49 PM (GMT 0)
Hi


I'm not usually at this forum, I go to the Arthritis chats.  However,

I have a great nephew who had viral pericarditis and just got an email from my niece saying they have to do surgery next week as his symptoms keep recurring and they have exhausted all other treatment.  she said they are going to basically peel away some of the thickeness that has accumulated.   Just wondering if any of you have heard of this procedure and what the results have been?  He is only in his twenties.   He has been on Lasix to get rid of fluid build up but I guess that's not working anymore either.

thanks for any input

alicat

Posted 1/14/2009 2:46 PM (GMT 0)
Hi Alicat,

I'm sorry to hear that your nephew is having so much trouble but from what I've read, the procedure should give him much relief. The procedure he's having is probably either a pericardiectomy, or I believe something called a maze procedure. If you look a little further down here in the Heart forum, you'll see a Pericarditis & Pericardiectomy section. Lots of info there and if you have questions many of those who have had the procedure will answer you although sometimes it can take a while as they're not always on.

 https://www.healingwell.com/community/default.aspx?f=42&m=833107&p=6

Hope this helps you.

Cynthia

Posted 1/14/2009 3:32 PM (GMT 0)

Dear Nanda,

thanks for the info and the encouragement.  I will look into the information you listed.

thanks again,

Alicat

Posted 2/3/2009 4:50 PM (GMT 0)
Alicat,

Very sorry to hear about your nephew's condition. The good news is that with proper treatment, the outcomes are generally very good, especially for younger patients.

I was diagnosed with constrictive viral pericarditis almost 3 years ago. I was in my early 40's at the time and in excellent physical condition. I went through the basic stages of treatment; 1) Drugs; anti-inflamatories/lasiks/Colchicine; 2) Pericardial window to drain fluid; and 3) Pericardectomy.

To make a long story short, after a very tricky surgery (10 hours and 10 pints of blood), I am back to doing all the physical activities I was doing before (full court basketball, running, splitting wood, weight training etc).

All the credit goes to my team of doctors and surgeons at Brigham and Women's Hospital in Boston. I would strongly encourage your nephew and family to get the best medical attention you can get as this is in no way a common cardio vascular issue. If a pericardectomy is the final option, I would recommend B&W or Mass General in Boston, or the Cleveland Clinic. This can be a highly complicated procedure, and is not for the inexperienced.

Best Wishes in your nephews treatment!
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