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Forum Name: Cardiomyopathy
|mykittenlovesme - Sat Dec 19, 2009 11:24 am|
37 years old and Diagnosed with Non-Ischemic Dilated Cardiomyopathy in 2004, as well as IST. Cardiomyopathy currently controlled with medication with LVEF of 50-55%. Several months ago I had an "attack" of some sort. Extreme chest pain, pounding heart, couldn't breath, had to lie down. Thought I was having a heart attached. Lasted about 5 minutes and then suddenly gone. I was extremely fatigued afterward, but I haven't had this type of episode since. I advised my cardiologist, but there had been no change in my echo (other than now I have trace regurgitation in all 4 valves where before it was only 2 of them - and a slight 5-10% reduction in the LVEF) so he didn't seem concerned.
My arrhythmia seemed under control until recently, minor chest pains, palpitations and dizziness. A check of my blood pressure last night showed normal, but with a resting heart rate of 109. I know this is not extremely high (before it was 150+) but I would assume my medications would better be controlling the rate. I have never seen an electrophysiologist but am considering that I should. I have had 2 cardiologist now, both have ever seemed concerned about my persistent chest pains and dizziness and fatigue. I'm beginning to wonder if I have some sort of arrhythmia that is just sporadic enough so that it doesn't show on the echo or ekg. Is this possible?
I am not sure what my question is, other than I am frustrated and feel I am not being heard. Any advice you can provide would be greatly appreciated. Thank you.
|John Kenyon, CNA - Thu Dec 24, 2009 2:23 am|
Hi there -- Your symptoms are pretty vague and somewhat at odds with the cardiology findings generally. This doesn't mean they aren't real, only that they are odd. You may well have (and may have had prior to the cardiomyopathy) dysautonomia (an imbalance of the autonomic nervous system) which has been aggravated by either the cardiomyopathy and/or medications. The medications, by the way, are totally appropriate to your condition and seem to be working well.
While I don't generally lecture smokers, who know full well what the price of the habit is, I am obligated to point out that with the condition you have you are placing a dangerous additional burden on a weakened heart. Imagine how much better it might be working if you weren't doing that. Okay, end of lecture, if that's what it was. :)
The chest pains don't sound like they are heart related, palpitations are normal even in the heart-healthy population, and the tachycardia you have now is likely reflex tachycardia which is trying to help offset the loss of output from your heart. The tachycardia isn't near extreme enough to warrant an EP study just now, especially since the cause is fairly evident. It is worth noting, however, that despite all these things your LVEF of 50-55% is actually within normal limits and so quite good. Again, imagine what it might be were you not a smoker.
While the chest pains, dizziness and fatigue all sound as though they may be related to mitral valve prolapse syndrome and/or to the obvious dilated cardiomyopathy, they are also something that should be followed within the context of your present illness. You're doing quite well with it overall, but I understand your feeling of not being heard. To be fair to the doctors you're seeing, they've done everything right, and if they cannot find a cause for these symptoms above and beyond what's already known, the best thing you can do is to assume anxiety plays a role,as they do fit the profile of an anxious patient. And, for the third and final time, they could be worsened (as everything always is) by smoking. Again, I don't usually bang this drum all that much, but you have a very significant problem and this is not helping it at all.
You'll need to be followed, obviously, but other than that everything appears to be getting done medically. If you need to discuss the symptoms at some length, this is a good place to do it, and if you could go into any more depth as to what may help set them off it might be helpful. Also, was there an illness, pregnancy, trauma or anything else known to have caused the cardiomyopathy? Is it considered idiopathic (without known cause)? All this information might be helpful in sorting out your symptoms.
Hope this is helpful. Please follow up with us here and keep us updated. Good luck to you.
|mykittenlovesme - Thu Dec 24, 2009 10:52 am|
Thank you so much for your reply. My cardiomyopathy was attributed to a strep infection, although there was never a definitive finding. I had become "well" enough at one point, that my doc allowed me to come off my meds. 2 months in, I got the flu and low and behold my EF went to about 40%. We decided we couldn't tell if it was the flu or the fact that my heart had become worsened by just the lack of medication. Either way, I'll probably never be off of them again. I'll elaborate on my systems: out of breath with minimum exertion and I get extremely hot. I have considered maybe I am perimenopausal and this may could also be the issue (extreme night sweats as well). Minimal exertion being putting clothes in the washer or making up my bed. I get so hot I usually have to shed a shirt (like just now). Along with that I am very fatigued and could sleep much longer than a mother of an 8 year old should. The fatigue seems to be never ending. I have recently gained about 6 pounds for no reason and I have headaches very frequently. My hands also noticeably shake. Recently I had blood work done because of my B12 deficiency and the doctor found that my red blood cells are irregularly shaped even though my deficiency has been remedied with shots and daily supplements. The red blood cell shape along with hemocrit has been abnormal before even without the B12, but no one has ever seemed concerned. I also suffer bouts of diarrhea. I know none of this sounds like it's heart related, which is why I didn't describe before. My husband thinks I am a hypocondriac, however it's all present most every day, I've just tried to learn to live with it. YES, I will be quitting smoking and beginning regular exercise after the holidays. I have my date set. Again, thanks for your response and I'm sorry you were answering me at such wee hours of the morning on Christmas Eve.
|John Kenyon, CNA - Fri Jan 01, 2010 10:23 pm|
You are very welcome, and thank you for your concern about my answering late on Christmas Eve. I find that remarkable, and really appreciate your observant nature. I'd gotten everything done that needed doing but was by then pretty energized, so took a look here and from the heading of your post alone was drawn in. Now we have some more information which could actually change the whole picture!
First, you are not a hypochondriac. There is a lot going on and it's serious enough to warrant a lot more sympathy than that. Having cardiomyopathy, whether it's permanent or not, is nothing to take lightly. But the cause may be more clear now, because you undoutedly have suffered chronic/intermittent anemia. You mention it was discovered your red cells are irregularly shaped. There are many potential causes of this, but in most instances it will cause anemia because the irregular cells either die off prematurely or are removed from circulation by the spleen and kidneys (or both happens), resulting in a lower red cell count (RBC). This, in turn, could show up not only as B-12 insufficiency but can have a marked effect on the functioning of the heart, with cardiomyopathy as a significant sign. While it is rare for streptococcus (or any bacteria) to cause cardiomyopathy, it can cause myocarditis, an inflammation of the heart muscle. This, in turn, could cause or contribute to cardiomyopathy, (which is most often caused by viral infection). There could be several things going on at once, since this violates no rule and some of those things could overlap. For instance, you might be perimenopausal (some of the symptoms are suggestive of it) but you're still fairly young for that. It's not impossible and should be explored, but also certain types of constitutional anemia (aside from simple iron-deficiency anemia due to malnutrition or chronic bleeding) can cause those same symptoms, as can several chronic infections, especially Epstein-Barr virus (mono). This also, in turn, affects the blood cells, so could cause cardiomyopathy (usually reversible over time). These things need to be explored and excluded, because it seems this condition came on fairly suddenly for no apparent reason -- except that you had a B-12 deficiency before, and we now also know you have some irregularly shaped red cells which, again, can be associated with a number of forms of anemia, some quite insidious. The profound fatigue sounds like a corollary of congestive heart failure (CHF) secondary to cardiomyopathy which, in turn, could be caused by a chronic borderline anemia. It gets potentially pretty complicated. However, it also sounds more hopeful now there are more clues. Also, the moderate weight gain, for no reason, would be consistent with fluid retention such as we see with mild CHF. In short there is a lot here to look at and it seems the dots have not been connected thoroughly, medically, yet. This may yet be a solvable problem, especially if the RBC shape issue can be clarified, to see if there is an arcane type of anemia-causing disease at work that could be treated. This could well be at the bottom of everything else.
Meanwhile you need to get as much rest as you can, not push yourself beyond your limits, live at your own pace, and make it clear to those close to you there is a serious medical condition which accounts for your inability to keep up the pace expected of you. It's not terrible, but it's certainly nothing anyone would want to have to deal with.
Thanks so much for the follow up information. Good luck with your smoking cessation program, and as for the exercise, this is a great idea, but remember at all times to listen to your body and not push beyond your capacity. And rest!
I'm going to do some more research into possible blood disorders and if you can get any more specific information on the RBC shapes that would be a big help. Asking may also get you doctor to thinking, as it's clear not all the questions have been answered nor even asked yet.
Please stay in touch and I hope your holidays have been really good. Take care.
|mykittenlovesme - Tue Jan 19, 2010 9:58 pm|
Thank you for your reply. I haven't been able to track down any more information regarding my red blood cells, however I will be having another blood draw next week. I did discover that on a separate blood draw, my potassium level was 5.4 and chloride was 106. Both of which I understand is above normal ranges. Also an MRI from several years ago revealed a possible demylenating disorder, however a neurologist dismissed it, even though at the time I had uncontrollable twitching and loss of balance along with severe migraines and blurred vision/color changes in my right eye. Those symptoms have not returned, however, when I have migraines they always settle in my right eye. They have become more frequent and now last 2 day instead of just one. I'll keep you posted of my next labs. I've decided to enlist the help of a different PCP that practices within the Vanderbilt Group here in Nashville. Maybe having all of my medical records in one place, which will be a first for me, will be helpful in determining what could be going on. I so appreciate you, as from what I understand this is a voluntary commitment for you. Your dedication will certainly be of benefit to your career...just be sure you take some time off from time to time, OK?
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