Pericarditis Support Group

I have had pericarditis for 2 months now and thought i was improving so tried to live ,an almost, normal life for 2 days,( did a bit of shopping, then walked the dog for 30 mins) ended up in bed on the 3rd day exhausted and since the pain has just been getting worse with dizzy spells now back. As of yet I havent been refered to cardiologist or had any scans. Trying to persuade my doctor to send me for a scan but i think here in England they just dont see the point, as were pretty certain what the cause is. I really dont know what to do, terrified that it may get worse and that I may have eventualy have a tamponade and just dont know what to do now.

I hope you change doctors until you find one that will listen to you. It can and does get worse if you are not treated. I live in the U.S. and it took a whole 6 months for any doctor to find out what was wrong with my daughter. She was 12 when she had her first attacks. At first they said acid reflux, then maybe she had a piece of food stuck somewhere, and then when they couldn't find anything, they told us she needed to see a counselor for panic attacks. I never gave up though, and I'm glad I didn't. I took her to yet another doctor, by that time, she was suffereing heart failure. She has pericarditis and she also had alot of fluid building up around her heart. It took a year for the fluid to go completely away. She is 14 now, and still has pericarditis. Early detection can help prevent the long term pericarditis (sometimes), it can also prevent it from getting worse. Best of luck to you.

A word of advise, do not let any doctor put you on steroids. Many many studies have found that use of steriods actually increase the risk of it becoming recurrent.

Take care!

Hi Willywong,

I am from England also and had this problem in the end last week I demanded to be referred to someone that can help me which I am seeing the end of this month however I believe there is something causing the pericarditis as I have had other symptoms that aren't typical of pericarditis e.g. dizziness (Vertigo off balance, feels like I'm moving sort of feeling), Congested sinuses, fatigue, spaced out feeling and headaches.

I am only 22 and have been suffering with this for a while now, your not alone. Do you get anxious at all regarding your symptoms?

Hi carlos, managed to get my doctor to refer me to a specialist, however the wait will probably be long, but apparently its the only way to get an echo cardiogram done. Seen the consultant at occu health today and he is going to try and hurry things along,( I work in the hospital).I have also had dizziness and been off balance and read somewhere that this can also be a side effect, or possibly the medication.You may have a virus or infection causing the pericarditis, have you had blood tests done?

Yes i do get anxious wondering if I've got an effusion and its getting worse knowing this could be dangerous and they havent even bothered to do an echo yet. The pain really gets me down and not being able to do much at all without making myself worse.Trying desperately to fight off depression. Doctors dont seem to be very empathetic or have an understanding of just how debilitating it is.Hope you get better soon.

Just had a thought , I have arrhythmia, irregular heartbeats, quite common with peri carditis, this makes me feel dizzy at times and quite unwell. Sometimes i feel like my hearts running away with me, it can start just suddenly or with something daft like an unexpected noise that normaly wouldnt bother me.You possibly have arrhythmia too! It would show on an ECG.

Post edited by: willywong, at: 11/09/2011 03:47 AM

Carlos, The dizziness, sinuses, and other symptoms could be from the underlying cause of your pericarditis couldnt it? if most are caused by a virus.... My episode started with terribly sore glands under my jaw, fatigue, congestion in my chest.... i thought i had walking pnuemonia when i went in to the ER here in Canada... and i kept telling my Dr.s i felt like i had a bug or something i was fighting. if the bug hits your ear, then you can get dizziness or even if you are stuffed up it can affect your balance too. I have suffered alot from that in the past. HOpe you are having a better weekend.

Hi carlos, how are you getting on, have you seen the cardiologist yet? Interested to know as also in UK and still awaiting cardiologist appointment. Did they find and underlying cause?

Hi, sorry for the late reply I havn't been online recently

I seen a cardiologist who ordered blood tests for inflammation, normal body functionin and a test sent a 'Virology' lab which I am still awaiting. I have had the pericarditis comming up 4 months now I had naproxen which helped for a little but it has recently came back worse. They don't seem to hurry to get back in touch to be honest however I did get an echo almost immediately to make sure I had no effusion which was good.

I have heard colchicine can help so I am going to discuss with the cardiologist when I hear back. Have you seen a cardiologist yet? How did it go?

Hi carlos had my echocardiogram too, I dont think there was an effusion, which is a first for me, but my pain got really bad a couple of weeks back but I seem to be better now. yet to see cardiologist on 19th Dec and like you will question whether Colchine is an option. I m not sure its been recommended for use in England for pericarditis yet. Are you back to normal activities yet? Will let you know how it works out with Cardiologists.take care

i had my follow up appt. with cardiologist and my echo is clear, everything is good, in fact he doesnt think i even have pericarditis. This is a different cardiologist since i changed provinces, i had to get a new one.

So he said just to see he would try me on coclochine... i was resolved that i would have to start all over with a diagnosis, since he is almost 100% sure its not.....

WEll i started the meds. on Tues. night.... wed, felt different, thurs. was rough, but the last 3 days, i havent felt like this for 3 MONTHS!!! the tight band, the sternum pressure, the constant dull pain is almost gone!!! I am not out of breath when i talk, i have more energy, not fatigued by doing just basic things, were as before i was aware of the condition 24/7 now i find that for awhile i forget about it!!!!!!

So if you can try it, i would definitely give it a shot.... no side effects, maybe my stool is a bit looser, but hey, thats sometimes a benefit It just feels like my chest is not inflamed, if that makes sense..... I do still get some symptoms, not all gone, still when i drive on rough roads, it bothers me, and certain ways i lay or sit, but i am praying that i continue to get better!!!!!

It hasnt even been a full week on it! I am hoping to call my cardiologist and tell him,,, he said he would be happy to be wrong with his diagnosis that it isnt pericarditis, if i can be out of pain!

So good to hear that, my appointment with cardiologist has been forwarded to today , even though I feel better not 100% and fearful it will come back with a vengeance if I over do it. I definately would like to try the Coclohine too. So pleased that its working for you, gives me a little hope!

Post edited by: willywong, at: 12/12/2011 04:20 AM