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i am new and lost confused scared and evrything else one can be
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| clouis |
Posted on 19. September 2009 22:54
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Junior Member
Posts: 2
Joined: 14.06.09
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I am from australia and was diognosed with Prinzmetals in march 2008 and have since had 4 heart attacks developed atrial fibralation which has been proven on ep study to be caused by the prinzmetals and an elnarged av node and atrium as well as low bone density all of which has been caused by the prinzmetals yet nothing i find in the information really tells you how hard this is to live with, i take 2 calicium channle blockers a potassium channel blocker a nitrate, asprin and i still get very unwell whenever i get sick..... in the last two months i have had 3 visits to icu and even though i have a great cardiologist i still feel shattered and just exhausted from all of this anyone else feel this way, i cant imagine having the strength to go back to work i am back to having arfternoon naps each day and feeling uselrss, i could do with some support at least just knowing i am not alone as in australia there doesnt seem to be too much support for people with prinzmetals and i am only 24 so noone my age that i know even has heart problems |
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| Gitte |
Posted on 20. September 2009 20:28
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Super Administrator
Posts: 25
Joined: 28.07.05
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Hi clouis and welcome to the site.
Prinzmetzal can be very hard to live with, and sadly there is no cure. You´ve ”only” been diagnosed 1½ years ago, and from the time the diagnose have been made to the time where the perfect medicin combination for you have been found can take years. But talk with your cardiologist about it, maybe he/she has some ideas. In some cases it´s necessarily to treat with morphine, to deal with the pain.
Extreme tiredness is one of the classic symptoms of prinzmetal. I myself rest in the middle of the day for an hour or two, so that I´ll be able to get something out of the rest of the day. So you are not alone, my guess is that 90 % (if not more) of the patients with prinzmetal suffers with extreme tiredness. And when you think about it, it kind of makes sense – when you have an angina attack the your heart is pushed to work harder and then you become tired.
I dont know how the social system works in Australia, but here in Denmark it´s possible to get social pension, if you have a chronic disease that makes you unable to managed a job. I´m 33 years old and hopefully my pension case will go through the system this year. If I was you, I would talk to my doctor about it or maybe my union.
I´m wondering if you have been giving an explanation on why you have gotten prinzmetal in such a young age? In my case it took the doctors 5 years to figure out that the reason I had become sick with prinzmetal at the age 27, is that I have familial hypercholesterolmia.
Gitte |
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| clouis |
Posted on 20. September 2009 21:35
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Junior Member
Posts: 2
Joined: 14.06.09
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I am lucky in australia we are eligible to a pension if we have a dissability and i guess this falls under that title. I have only been told i was born with prinzmetal's and that it is still unclear for other reason regarding how it happens----- i just wish i knew more and wasnt sooooooo exhausted and dint get soooo sick with the ligttlest ilnesses does anyone lese get sick easy??? |
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| Gitte |
Posted on 22. September 2009 10:15
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Super Administrator
Posts: 25
Joined: 28.07.05
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I´ve experienced the same thing with infections – just the slightest hint of a cold and I would get sick. Then 2½ years ago I started to take a supplement of antioxidants, and that have really made a difference. I had a 2 year periode where I did not need penicillin – sure I had 2 or 3 colds but it never got to the point where I needed medication. So maybe that can help you too!
If you find a cure for the tiredness, please let me know ASP! Everyone I´ve been in contact with that suffers from prinzmetal or cardiac syndrom x have big problems with tiredness. And I haven't heard of any one that have solved the problem – but I completely understand you.
Gitte |
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