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Old 04-18-2009, 10:44 AM   #1
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Exclamation Please tell me if this is typical of heart valve disease! PLEASE?

Before I was born I was in congestive heart failure, complete with fluid buildup and heartrate at 300+ bpm. Doctors at Yale steadied my heart before I was born with Digoxin. I stayed on Digoxin for 2yrs. At that time I had been diagnosed with Wolff-Parkinson-White syndrome.

I've always had palpitations, so 1 yr ago I had another holter moniter on for 24 hrs. The results showed I had about 100 "skipped beats" in 24hrs, but they also "undiagnosed" me with WPW, saying they saw no signs of WPW, and didn't do anything further.

For as long as I can remember I've always done this thing with my body 2 where I tense up really fast. It's not on any one area of my body, but the whole body, and sometimes it makes me dizzy. I know it's not normal but I can't control it and I feel like I have to do it.
Everything has been getting worse.
2 yrs ago I developed the worse case of insomnia I could imagine... been thru every kind of sleep med there is with no results. Sometimes I wake up with weakness / numbness in my left arm and it feels like I've hardly been breathing.
Also 2 yrs ago I started having horrible upper neck pain (at the occiput). Xrays and mris and head and C-spine came back normal.

I had a sleep study done that shows I'm getting 11% of my needed deep sleep, and that my breathing becomes shallow. I do not have apnea.


I'm at a loss here because something lifethreatening happened to me before birth, it wasn't just RANDOM, and now I've been thru all these doctors for so many years and no one will listen to me!!!!!!!!!!!!!!!!!

Last edited by snark; 04-18-2009 at 10:46 AM.

 
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Old 04-19-2009, 06:17 AM   #2
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Re: Please tell me if this is typical of heart valve disease! PLEASE?

Quote:
Originally Posted by snark View Post
Before I was born I was in congestive heart failure, complete with fluid buildup and heartrate at 300+ bpm. Doctors at Yale steadied my heart before I was born with Digoxin. I stayed on Digoxin for 2yrs.
What is the status of your heart failure now? Are you currently diagnosed as to still suffering from Heart Failure?

Quote:
At that time I had been diagnosed with Wolff-Parkinson-White syndrome.

I've always had palpitations, so 1 yr ago I had another holter moniter on for 24 hrs. The results showed I had about 100 "skipped beats" in 24hrs, but they also "undiagnosed" me with WPW, saying they saw no signs of WPW, and didn't do anything further.
There are hundreds of different types of heart beating problems, all with their own names. Doctors love putting a name on things. It makes them look professional and knowledgeable.

Quote:
For as long as I can remember I've always done this thing with my body 2 where I tense up really fast. It's not on any one area of my body, but the whole body, and sometimes it makes me dizzy. I know it's not normal but I can't control it and I feel like I have to do it.
When the heart is damaged, it causes a metabolic, or hormonal, imbalance and immune dysfunction, which usually results in the adrenals over-producing hormones like Adrenalin (among many other hormones). This over-production of body hormones, like Adrenalin, might be somewhat responsible for your health problems.

Avoiding things like caffeine, allergens, irritants, large meals with too many calories, avoiding high calorie foods; and having an appropriate daily exercise program, can help to reduce excessive body hormones.

Quote:
Everything has been getting worse.
2 yrs ago I developed the worse case of insomnia I could imagine... been thru every kind of sleep med there is with no results. Sometimes I wake up with weakness / numbness in my left arm and it feels like I've hardly been breathing.
Also 2 yrs ago I started having horrible upper neck pain (at the occiput). Xrays and mris and head and C-spine came back normal.

I had a sleep study done that shows I'm getting 11% of my needed deep sleep, and that my breathing becomes shallow. I do not have apnea.
Excessive body hormones, like Adrenalin, or metabolic dysfunction, can really mess up how one feels, and how the body works.

Quote:
I'm at a loss here because something lifethreatening happened to me before birth, it wasn't just RANDOM, and now I've been thru all these doctors for so many years and no one will listen to me!!!!!!!!!!!!!!!!!
I am listening, but I have no medical training or education. I can only say what has helped me to reduce my own symptoms, and improve my own heart failure. I eat a small meal, low calorie, frequent feeding diet; I avoid foods that "excite" my nervous system, such as those with caffeine; I avoid things/irritants/triggers that excite my system, and I exercise religiously. At first, my weak heart only allowed for limited exercise. But now, I am doing 150+ pushups per day, 500 steppers per day, one hour power walk per day, and about 300 weight lifts per day. I was told almost two decades ago that I would probably need a new heart within five years. I think that their estimate was a little off.

Have you ever noticed that, if you come into contact with some thing, or you eat or drink some thing, that your symptoms, or heart beat, gets worse?

Do you notice an increase in your symptoms and health problems soon after you lie down in bed?
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Old 04-24-2009, 06:52 AM   #3
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Re: Please tell me if this is typical of heart valve disease! PLEASE?

I have valve disease, and none of your symptoms fit that. Actually, as my disease progresses, I find that I sleep more, not less.

I do hope you find an answer to your problem.
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