Heart valve or lung related?

[iLoveSugar]

I'm so tired of getting thr rub around from doctors. Clearly something is wrong with my heart and/or lungs. Numerous tests done from cardiologist, and he does see a prolapse with the mitral valve, but doesn't think it's the cause of my issues. His only next step recommendation is a CT Scan with dye, which I do not want. Since I did well on the stress test, he doesn't seem concerned.

The pulmonary doctor wants me on multiple inhalers, but clearly that isn't the answer.

I truly believe my heart valve is a major issue right now. I'm constantly feeling like my heart stops, I lose my breath, and it's extremely scary. It'll happen when I'm just sitting still or laying down. I am also dead tired literally ALL day!

Tonight was the worst it's ever been, by far! I was walking the golf course in relatively hot weather (90 deg), and within 10 minutes, it was back to back to back. It wouldn't stop. I slow walked back to my truck dealing with this the entire time. When I would bend over to pick up my golf ball, it got worse. Within the 25 minutes I was there, I felt this loss of breath/heart stop feeling about 50 times. Debating going to the ER, but it calmed down once I got in the cold AC.

At such a loss right now that they can't figure this out and help me.

 

[Peater]

@iLoveSugar when did this start?

 

[iLoveSugar]

The palps, short of breath, etc have been sporadic over the past several years. Over the past year, I was getting the episodes more frequent. Laying down, sitting, doesn't matter. I'm now at a point to where it's multiple times daily. Tonight was the worst it's ever been as it kept happening and happening until I got sat down in my truck with AC.

I am extremely tired, dizzy and fatigued literally all day.

 

[Peachy]

I really hate to hear you’re still going through this. Have you had a chance to look into that book on dysautonomia? There won’t be a ton of great nutrition/supplement tips (though there may be some). But the a-ha moments into the heart/breathing connection and the fatigue can be very helpful. Lots of good lifestyle tips. It’s $6 if you’re in the US.

The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide Amazon.com

 

[iLoveSugar]

I really hate to hear you’re still going through this. Have you had a chance to look into that book on dysautonomia? There won’t be a ton of great nutrition/supplement tips (though there may be some). But the a-ha moments into the heart/breathing connection and the fatigue can be very helpful. Lots of good lifestyle tips. It’s $6 if you’re in the US.

The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide Amazon.com

I haven't. My cognitive function is just so poor right now, that even finding the capacity to read a small article is tough sledding for me.

I did just join a group on dysautonomia though, and I am highly convinced it's me. I'm seeing certain suggestions such as salt, b vitamins, antihistamines, ganglion block, etc.

 

[Blossom]

I did just join a group on dysautonomia though, and I am highly convinced it's me. I'm seeing certain suggestions such as salt, b vitamins, antihistamines, ganglion block, etc.

That’s good. Have you read Dr. Lonsdale’s material?

Health Requires Energy. Energy Requires Nutrients. - Hormones Matter

The combination of genetic risk, failure to adapt to stress, and inadequate energy metabolism are the three factors that lead to the breakdown of health.

www.hormonesmatter.com

 

[yerrag]

Without knowing details, I would be less inclined to think the mitral valve prolapse is solely responsible for your breathing difficulties. It would certainly make your heart leas efficient in pumping blood, and that can easily be gleaned from your ECG and from plethysmography. But if your lungs are okay, you wouldn't be struggling with your breathing as much.

I'm currently having breathing issues myself from having bronchitis from chemical irritation, the chemical being cinnamon bark oil. I'm learning as I go as I treat myself.

 

[Highserotonin90]

Before we get to the big cause, have you looked at your electrolytes, B12, iron/ferritin, folate, B1? very often dyspnoea, bradycardia, palpitations, pounding pulse without exercise... are of organic cause. If you have already ruled out all this you can focus on the organs I just thought that vitamin E could be useful if the cause is the heart.

 

[Peachy]

I haven't. My cognitive function is just so poor right now, that even finding the capacity to read a small article is tough sledding for me.

I did just join a group on dysautonomia though, and I am highly convinced it's me. I'm seeing certain suggestions such as salt, b vitamins, antihistamines, ganglion block, etc.

Salt, yes. Making sure potassium (food sources) and magnesium are adequate.

I used to do a sublingual methylcobalamin/methylfolate. I’m starting to experiment with it again. It helped a lot with the symptoms you’re describing. Though I know everyone reacts differently to methylated b’s and there are various opinions on them.

 

[Peachy]

Without knowing details, I would be less inclined to think the mitral valve prolapse is solely responsible for your breathing difficulties.

Mitral valve isn’t the root issue. Dysautonomia is. That’s why breathing can be very impacted. It’s an autonomic function.

I look at both irregular breathing and the prolapse as symptoms of autonomic nervous system dysfunction.

 

[Peater]

The palps, short of breath, etc have been sporadic over the past several years. Over the past year, I was getting the episodes more frequent. Laying down, sitting, doesn't matter. I'm now at a point to where it's multiple times daily. Tonight was the worst it's ever been as it kept happening and happening until I got sat down in my truck with AC.

I am extremely tired, dizzy and fatigued literally all day.

Is there a thread where you've posted before about this? I don't want you to have to repeat everything but I second the thiamine, magnesium, salt and potassium ideas. I would also add ensure sufficient calcium and riboflavin/B2 as personally I find high dose B1 can deplete it although this is subjective and not confirmed with tests.

 

[Peachy]

Salt, yes. Making sure potassium (food sources) and magnesium are adequate.

This is important because blood volume tends to be low in people with dysautonomia.

 

[yerrag]

Mitral valve isn’t the root issue. Dysautonomia is. That’s why breathing can be very impacted. It’s an autonomic function.

I look at both irregular breathing and the prolapse as symptoms of autonomic nervous system dysfunction.

As I said, mitral valve isn't the root issue when I said I'm less inclined ...

But I would point to the lungs as a more likely main cause of his issues, regardless of whether or not dysautonomia is involved.

He can also have mitral valve prolapse without dysautonomia being involved.

You're jumping the gun especially from your vantage point where you have too little dTa to work with.

 

[Peachy]

from your vantage point where you have too little dTa to work with.

What’s that?

He can also have mitral valve prolapse without dysautonomia being involved.

Highly doubtful imo. Have you been reading his posts?

 

[yerrag]

What’s that?

You have too little data to work with. Dysautonomia isn't the first thing I would think of without first exploring simpler cause and effect relationships.

 

[yerrag]

Highly doubtful imo. Have you been reading his posts?

He has talked about mitral valve prolapse before without having a lung issue in another thread.

Mtral valve prolapse can be caused not just by dysautonomia, such as strep bacteria colonizing where the mitral valve seal is, causing leakage or imperfect seal. So I cannot agree with your matter of factly saying mitral valve prolapse and his lung issue all fall under dysautonomia.

 

[Peachy]

Dysautonomia isn't the first thing I would think of without first exploring simpler cause and effect relationships.

I think it’s a decent lens given his situation. Not the only lens, but an important one. It’s actually a lot simpler than people make it out to be.

 

[Peachy]

I haven't. My cognitive function is just so poor right now, that even finding the capacity to read a small article is tough sledding for me.

One more thought. I’ve seen you list your diet before and there are a lot of strengthening, heavier foods. For a balance, what about incorporating some lighter, energizing plant foods?

 

[iLoveSugar]

I have an appointment today to get a device to do a sleep study tonight. Despite wearing a nose strip nightly, and taping my mouth for the past 4-5 months, I'm literally not sleeping a bit. Even when I think I do, I wake up completely drained. I also go tomorrow to my pulmonary doctor just to kind of explain to them what's going on. I can deal with alot of stuff. I have my entire life. But when I lose my breath as much as I do, and it literally feels like my heart stops, that is SCARY.

 

[iLoveSugar]

I just left the place where I am getting my sleep study equipment. He was putting the pulse ox on me to show how it works. In the 5 min I had it on, it wouldn't come above 93.