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Unknown Tachycardia Problem. 6 years of no answers..
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Unknown Tachycardia Problem. 6 years of no answers..

My names Chris, I'm 22, and a college student. I developed a tachycardia problem after I lost over 75 LBS at age 16. I'm now 22 and I weight 179 and i'm 6 foot 2. I suffer from an unknown tachycardia problem that none of the 6 cardiologists and 1 electrophysiologist can figure out. I can't exercise at all which is weird because i was athlete before i lost the weight. I'm now also scared to do any exertion because I can feel my heart in my throat non stop. Even if i dance a little, or do some push ups, my heart is beating so hard and I have to take deep breathes. I have tachycardia with going to the bathroom, the HEAT outside, eating heavy meals, and especially exertion. The problem is debilitating and handicapping my life. I've seen 6 cardiologists like i've said and also an electrophysiologist. I've had multiple thalium stress tests, CT angiogram with dye contrast, hundred echos, hundred EKGS. Tilt table test, event monitors, holter monitors. I've had some tiny episode of svt show up on monitor and atrial flutter once, also had anvrt show up once. My heart is structurally normal, i've also had all the blood work possible and a brain mri and also aortic anuersym check up 3 times. Ultra sounds of all organs so i've done it all basically. My question is ANYONE HAVE ANY INPUT ON WHAT I SHOULD DO NEXT? I CAN'T GO OUT WITH FRIEND, NO GYM, NO BEACH, I HONESTLY DON'T KNOW WHAT THE POINT OF LIVING IS, IF I'M HEALTHY BUT YET FEEL LIKE AN 80 YEAR OLD. I'M CONVINCED I HAVE A BLOOD BLOT THEY CAN'T FIND OR A HEART DEFECT. I JUST FEEL LIKE SINCE I FEEL THIS STUFF THERE HAS TO BE SOMETHING WRONG AND EVERY DAY I'M JUST WORRIED ABOUT DROPPING DEAD NOW. ANYONE HAVE AN INPUT OR OPINION OF SOME KIND?
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Avatar_m_tn
Hi

I am in a very similar situation as you.  I'm so glad you posted this.  I've been feeling exactly the same way.

I've had several EKGs, an Echo, two Holter Monitors, a Tilt Test, blood work, and tried 3 drugs to lower my heart rate, and 2 drugs for anxiety and depression.

Something I have in common with you is I lost weight 3 years ago.  I lost THIRTY pounds in only 6 weeks.  I knew at the time that doing that so fast was probably wrong but I did it anyway.  Ever since I have had periods of light-headedness.

I discovered my tachycardia 5 weeks ago when I got dizzy at work.  

I am 29.  And I also have had pre-hypertension since I was 19.  Do you have even a little bit of high blood pressure?  If you do - get this treated NOW!

Tell us more about your situation. There's lots of great folks here who can post and help you out.

PS - I just started on my third HR lowering drug yesterday.  The first two had bad side effects.  This one is called atenolol.  The only side effect so far is that it has made me VERY tired but I believe that I am just getting used to my slower (normal) heart rate.  
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Avatar_f_tn
You need to get your Endocrine system thoroughly checked.

You could have an adrenal adenoma which causes what you're experiencing. I have the exact symptoms that you do. As soon as I wake up, my morning adrenaline rush pushes my heart rate way beyond normal limits. My morning heart rate is normally around 120 or so, just lying in bed.

I have had tachy up to 200bpm + and I'm now seeing an endocrinologist who is testing me for adrenal gland problems and also serotonin, which is also found in the cut when there is a tumor. Too much serotonin in your blood stream causes the same problem that adrenaline does.

Have you had an ultra sound of your adrenals / kidneys? You'd need a CT scan or better yet an MRI to pick up something there, my endo said that an ultra sound wouldn't be of help. They need something clearer.

Ask for a 24 hour urine collection to screen for adrenaline and noradrenaline. Also ask for the 5-HIAA urine test.

These should help you, you need to cover all bases.

Do you ever get facial flushing? Does your BP spike sometimes? Do you sometimes have to rush to the bathroom when your HR goes crazy?

The fact that you're sensitive to heat, like myself, strongly suggests endocrine.

I don't think there's anything wrong with your heart, it sounds like something is driving your HR up. I have the exact same issue, even had an EP study and they couldn't find an issue with my heart.

Keep in mind I'm not a doctor and just speaking off my experiences.
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Avatar_m_tn
I've had a 24 hour urine collection and had the adrenals checked. When I sit down, the heart rate usually goes back to normal right away unless it's exercise. I cannot tolerate the heat at all it's horrible, if i get up fast in the morning my hart will pound and go nuts especially when i have to urinate.
What exactly the endocrine specialize in, i've never hear of this type of doctor?
With all these happening, it has led me to a horrible anxiety problem that i've never had in my life.
Your luck you didn't need a pacemaker after the ep study, as my doctor said it's possible i could end up with one if he goes in there and hit the sinus node, he says im too young and its not worth it. But it's so exhausting all of this after a while.

Detours, my blood pressure is usually 115/70 waking up normally only high when i go to the doctor because i'm stressed ;)
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Avatar_m_tn
do you mean by facial flushing like when you get hot or feel hot you get hives and like its a pinch feeling all over your body? i've just got this like 6 months ago and it's on and off.
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Avatar_f_tn
Hmm... Have you tried getting checked for some dysautonomia? I had a very persistent tachycardia and it turned out to be related to neurocardiogenic syncope. And while that may not be what you have(did you faint in the tilt-table-tests?), well... it's worth trying. I mean... the part where you say that heat triggers the tachycardia... that sounds very familiar to me. And you also say that it's when you stand up that it happens... it could be postural orthostatic tachycardia syndrome (also known as POTS). You may want to get that checked out. The dysautonomia community here has quite a bit of information on these things. You might want t ocheck it out.

Personally, I've been on beta blockers for the NCS, and it's indeed lowered my heart rate. The new one has the HR lowered to near-normal levels, too.

Good luck.
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Avatar_m_tn
I did not pass out during the tilt table test but i had my symptoms of heart beat in the throat and my pulse was 130 the whole time with my blood pressure being 150/80 during the tilt table test. i dont get dizzy and lightheaded ever. im so lost on this as is the doctors.
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Avatar_f_tn
Such a huge change in pulse rate probably could be POTS, even if you don't faint. I really recommend you head over to the dysautonomia community and read up on it. Maybe something will make some sense. And discuss it with doctor if you haven't already.
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Avatar_m_tn
do you know a cure or treatment for this type of disease?
I've always looked into it, but keep distance because of the fainting and dizzy, i thought all had to be included.
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Avatar_f_tn
Dysautonomia affects different people differently. As for cure... well... none is known yet. But there is treatment. Lifestyle changes, and beta blockers seem to be the more common ones.
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Avatar_m_tn
I see, i'm familiar with POTS, I just wasn't too sure if i was a candidate for it.
Aren't beta blockers bad for you? Lifestyle changes as in what?
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968809_tn?1288660510
Are you on any meds? Why didn't your ep suggest an ep study? I would suggest you seek a top ep in your area for a second opinion. Your problems don't seem too out of the ordinary to me. Keep searching for an answer. Don't give up. Hang in there!
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Avatar_m_tn
I'm not on meds, and isn't there risks with doing an ep study as in getting a pacemaker?
I'm seeking one of the top ep doctor's in the state. You say not to out of the ordinary? Any opinion or input on what you may think it can relate too?
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Avatar_m_tn
I meant i'm seeing one of the top ep doctor's in the state
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Avatar_f_tn
Two questions:

1.  Why and how did you happen to lose 75 pounds?

2.  Has anyone looked at your thyroid, for goodness' sake?  Geez:  tachycardia, heat intolerance...

I've been there.
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Avatar_m_tn
I lost the weight when i was 16, now 22. Before the weight lost was an athlete and never had a problem.
I eat chicken and salad, lots of water, and just played basketball everyday.
Thyroid has been checked, as long as a number of other things bloodwork/urine collection wise, alos have had all the physical and imaging tests done also.

You've been there? What was the outcome on you?
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968809_tn?1288660510
The risks with an ep study are low. The procedure is very safe. I really can't speculate what is the problem but usually an ep dr will try meds to see if they help or suggest an ep study for further investigation. It seems odd that neither of these were suggested to you.

Also, many people on this site have tachy when exercising/activity. Heat intolerance could be dysautonomia...many people get tachy due to gerd. As I said, I wouldn't want to guess at what is going on with you but it seems like I have read threads here with similar concerns so don't worry, you are not alone.

I would still get a second opinion if I were you. I did and it made all the difference.
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Avatar_m_tn
The meds have been thrown at me but i refuse to take them unless there is first a definite answer. I've seen 6 cardiologist and a EP doc. Also went out of state to new york to see the cardiologist. I'm seeing my ep doctor now and i'm picking up a 30 day event monitor on friday to see if we can catch anything since my symptoms are more frequent now.

What did they end up finding wrong with you??
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Avatar_f_tn
Take the beta blockers - you're heart should not have to work that hard for so long, beta blockers give your heart some much needed relaxation.

They are not bad for you, they are extremely safe. I put off taking the beta blockers for 6 months, and I have no idea why. I was so scared of taking them, but when I finally took them, I could function a lot easier. They are a very safe drug.

Talk to your EP about taking a low dose. I only take 12.5mg doses and it helps, doesn't fix it, but it makes the day a little easier to tolerate.

Your Endocrine system is the system which controls all of your hormones, adrenaline, cortisol, electrolytes etc. All of which have a direct effect on your heart rate and BP.

I strongly suggest looking into endocrine related causes, or talk to your EP guy about some kind of treatment. You shouldn't have to live your life like this!

And no, and EP study does not mean a pacemaker. I had an EP study done while I was 100% awake without any drugs, and it was fine. It's very safe. There is only a risk of a pacemaker if they do an ablation, burning off cells from your heart, and even then, the risk is very small. My EP told me the risk was about 1 in 600 end up with a pacemaker.
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Avatar_f_tn
Re the thyroid: "You've been there? What was the outcome on you? "

It took the docs a while to figure it out.  Well, actually I did it myself:  Finally I asked my primary if it could be hyperthyroidism, and he agreed to look into it even while suggesting I was just a nervous person.  But it turned out I was running about 150% of normal thyroid function and had what's called an 'autonomous nodule' on the thyroid.  It evaded suppressive therapy, but burned itself out after a couple of years, which was pretty nerve-wracking, I have to admit.  I lost a lot of weight, but when the thing shut off, I went back to normal.  

Statistically speaking, though, I was at risk for A-fib later on, though it has never developed.
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1398166_tn?1358874123
Crappy way to live.

Get a second, third, fourth opinion. I'd look at the top EP Cardiology Depts. Find the EP with the biggest EGO you can. A cocky SOB.  (I think Cleveland Clinic and Mayo -Rochester are up there). You want the guy who refuses to be confounded and humiliated by your heart.

Make sure you can handle the money side, check your insurance... deductibles, max out of pocket... be ready there (EP study w/ Ablation can get into big bux quick).

At 22 and basically in shape... you need to be dancing, courting, white water rafting, and LIVING.
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