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Heart Problems at 19

A few months ago I started feeling easily weak, and had a lot less energy than before. After class, I was so drained that I could hardly function. At night it was harder for me to sleep as I noticed my heart pounding a bit. As months passed my symptom's got worse. I am experiencing constant heart pounding that I can feel throughout whole body (I can see my chest and stomach pounding) (Also when I take my blood pressure it hurts because of the pounding), heart racing (resting is about 100-130 and goes to 150-170 when I stand and walk). I was diagnosed with Inappropriate Sinus Tachycardia, but my doctors say there is another underlying condition. SVT also runs in my family, and while I have had fainting episodes my heart monitor hasn't picked up SVT.
I am to the point where I can hardly get out of bed, and cant function. I dont know what to do at this point. Does anyone have any advice?
Blood pressure stays the same, but is a little on the lower side, however nothing concerning.
I am also now having a lot of limb and muscle weakness and an almost stabbing pain in my veins and chest when my eart races.
P.S I am open to trying medicine, but Diltiazem made my heart worse, and beta blockers can affect my asthma
Prayers and medical info are needed! Thanks!
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Many thin people can see the pulse of the heart in the stomach and chest.  There's just not enough fat to hide these things.  It is not a cause for worry.

In the absence of high blood pressure, the *awareness* of a pounding heart is usually a sign of hyper-vigilance to bodily sensations.  This is another way of referring to anxiety.

You do apparently have tachycardia, for your heart rate is higher than usual when resting, and goes quite high when you're standing.  Have you have a tilt test to check for dysautonomia?

So much is left out of this account.  You say your doctor says there's 'another underlying condition.'  What IS it?  That's a really important part of the puzzle, and almost certainly, somebody who has examined you has a pretty good idea of what it might be.

You don't say what kind of heart monitor you're wearing, or for how long, but clearly it should be some kind of long-term arrangement to catch intermittent episodes.

In light of your complaint of 'vein' and chest pain when your heart races, it seems obvious that you should also have had echo and stress tests of your heart, but you do not mention that.  Have these tests been done?  If not, why not?

Your comments on another topic indicate that you are familiar with things like tests of thyroid and adrenal function, which should have been employed in your case.  If so, what were those results?

More information is needed.
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Good questions. I have never had cardiac awareness before in my life, and there have been a few hours here and there were my heart rate is low and therefore I don't feel my heart. It is not anxiety, according to the doctors.

I had a tilt table test, and my heart rate went to 180 when the medicine was administered, so I was technically positive for dysautonomia. However, my blood pressure does not change when I change positions, and I have some doubt about pots since I still experience just as bad of symptoms while laying completely flat, and have passed out sitting down. My doctors agree however that there is some type of dysautonomia at play.

The reason I didnt take about an underlying condition, is that we have no idea what it is. My doctors are unsure about a lot of aspects of my case, and I have seen many. A lot is left out, because I am unsure about a lot.

I have had two 24 hour heart monitors, and a 5 day monitor in the hospital. They all showed IST. I asked my doctor if I can get a 3 week monitor, so that is hopefully in the works.

Stress test showed tachycarida and I almost passed out at the end, I had to be held upright. Echo didn't show anything conclusive.  

As far as thyroid and adrenal function, I have had a 24 hour urine test and spit test for adrenals and they were mostly normal, except in spit test cortisol was a bit on the high side at some times and too low at others. Nothing too bad though. My t3 is a little low, but only by like half a point. I am looking into a hashimoto's test, but are there any other tests you would recommend to further check these things?

Also, I should have mentioned this before, but I have bad asthma, and have in the past taken a lot of prednisone in the past as well as inhalers. I suspect that with those medicine as well as family history of heart problems, it exacerbated and brought on to some extend my problems.

Doctors still haven't given me all of the answers we need, so thank you for taking time out of your day to help!
Let me know if you need more info!
:)
You are clearly intelligent and well-informed for a young lay person, so you probably already know that IST is most common in young women (often, curiously, in health care professions), that it is difficult to diagnose and to treat, that it negatively affects quality of life, but that it seems not to affect longevity and only rarely is associated with cardiomyopathy.  In other words, unpleasant as it can be, it is not a dangerous condition.

The cornerstone of treatment seems to be medications, but finding the right combo for each individual is the tricky part.  There is a newish drug called Ivabradine that appears to be surprisingly effective, but undoubtedly, if you are finally diagnosed with IST, the doctors will want to try you on older drugs first.  Just keep the new one in mind if it comes to that.

One rather novel treatment mode includes--almost paradoxically--physical training, and one small study suggests it may be quite helpful.

If you haven't already read these articles, here are two good ones on diagnosis, treatment, and research:

http://www.dysautonomiainternational.org/page.php?ID=228

http://www.onlinejacc.org/content/61/8/793

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