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Hello, my friends,
Does anyone here have left ventricular diastolic dysfunction (besides myself and a few others?). If so, can I chat with you about the latest theory and treatment? We want to avoid full blown congestive heart failure (yikes). Thanks!I found out I have this just a few days ago when I picked up some records! Apparently no one thought to tell me. 🙁 I would love to hear anything you can share.
I found out I have this just a few days ago when I picked up some records! Apparently no one thought to tell me. 🙁 I would love to hear anything you can share.
Wow, the same thing happened to me! I was wheezing at night and I don’t have asthma. I called my cardiologist asking if I could have this. She had me come in RIGHT AWAY and told me my last echo indicated that I had it! WHAT?! She said it was “mild”, but I was symptomatic, which got her attention. Are you on mast cell treatment? You may want to look into that. I’m about to write an article on this, and the left ventricular diastolic dysfunction was mentioned in The Driscoll Theory. Did you see it? You can download it here:
http://bit.ly/moYbIBI hope this helps to get you started! 🙂
I think I qualify for this DX too. I had a stress ECHO June 2010, with mild/minor abnormalities all over the place, and a conclusion of “cannot rule out cardiomyopthy at an early stage”. Also says: “Diastolic dysfunction; mildly abnormal relaxation without significant increase of left atrial pressure.” If you want to know more from this report, just let me know. I am having my next ECHO in Sept.. just a couple of weeks away.
I am very curious to see if after having CCSVI treatment if any of the findings on my first ECHO will have changed (such as pulmonary hypertension and the right ventricle at the upper limits of normal for size).
(still having problems posting more than a one small paragraph post, the site is saying the computer thinks it is spam…???)I think I qualify for this DX too. I had a stress ECHO June 2010, with mild/minor abnormalities all over the place, and a conclusion of “cannot rule out cardiomyopthy at an early stage”. Also says: “Diastolic dysfunction; mildly abnormal relaxation without significant increase of left atrial pressure.” If you want to know more from this report, just let me know. I am having my next ECHO in Sept.. just a couple of weeks away.
Hi Ourfullhouse, Yes, I think we’d all like to know how your echo goes! Did you find the article about this after the Elizabeth Taylor video? If not, this will take you right to it: http://bit.ly/pS5gPJ And I’m so sorry about the issues you’ve had trying to type more than 5 words! Yikes. We’ve been messing with the spam filter (we are going to try something different), so please bear with me and we’ll get it fixed, OK? Thanks for letting me know. Big hug,
Could Diastolic dysfunction give a person a short burst of SVT’s? I have never had any SVT’s before, all mine tachycardia has been POTS/postural related. But yesterday, while just sitting, my heart suddenly just went from normal to 180 BPM’s! It did that for about 2 minutes (seemed longer!) and then just as suddenly, kind of sputtered a bit and went down quite a bit. Stayed a bit high for a couple of hours, but only like 120’s, and more POTS like. I tried doing deep, slow breaths while it was happening but that didn’t seem to effect it. Thought about standing up, changing position, but was too scared, fearing it might get worse. Thoughts anyone?
Could Diastolic dysfunction give a person a short burst of SVT’s? I have never had any SVT’s before, all mine tachycardia has been POTS/postural related. But yesterday, while just sitting, my heart suddenly just went from normal to 180 BPM’s! It did that for about 2 minutes (seemed longer!) and then just as suddenly, kind of sputtered a bit and went down quite a bit. Stayed a bit high for a couple of hours, but only like 120’s, and more POTS like. I tried doing deep, slow breaths while it was happening but that didn’t seem to effect it. Thought about standing up, changing position, but was too scared, fearing it might get worse. Thoughts anyone?
Yikes. We have to be careful not to assume everything is “just POTS” and this may be one of those times that a visit to your cardiologist may be warranted. I DO know that many of us have gone through that. I also know that mast cell reactions can cause that to occur. Do you know if you have mast cell disease? If so, treatment should calm those down. If a doctor wants to do an ablation, be careful, though. Those are usually contraindicated in POTS — not always, but usually. Please keep us posted! Oh, and left ventricular diastolic dysfunction doesn’t cause that to happen…
Thanks for the info that it isn’t an effect of LVDD. I see my cardiologist next Friday and will mention it to her. It has only happened that once, yesterday. I do have MCAD and taking Zantac and Claritin (for now – Zyrtec made me too groggy!).
Thanks for the info that it isn’t an effect of LVDD. I see my cardiologist next Friday and will mention it to her. It has only happened that once, yesterday. I do have MCAD and taking Zantac and Claritin (for now – Zyrtec made me too groggy!).
Sounds like a plan! You may want to ask your doctor about starting on a mast cell stabilizer (cromolyn sodium or Ketotifen). Those may prevent you from having “break-throughs”. 🙂
This post was very timely for me and a good warning for all of us. You can have POTS AND some other heart problem!
I finally got confirmation my thirteen year old son’s inattentive ADD is actually probably POTS which I’ve suspected since I was diagnosed by tilt table with POTS. I’ve had the nurses at our clinic test his pulse standing at least three times since he spontaneously vomited during a poor man’s tilt I gave him but his heart rate was normal every time the nurses took it. (The longest they would wait is 12 minutes) My blood pressure cuff would go to “error” on him so I couldn’t prove his pulse was sometimes high but I noticed he’d turn pale when singing at a concert and his teacher’s commented he’s been increasingly inattentive at school. He’s also been complaining of back pain in his left kidney area for 7 weeks and he’d been diagnosed with a muscle strain but I didn’t believe that because it was coming and going and he’s been increasingly fatigued.
I KNEW something was going on with him, and I suspected POTS, but I couldn’t prove it so I bought an iPhone with a Garmin chest strap and a Digifit connect 2 and Digifit iCardio to turn my phone into a heart monitor. He carried the phone in his cargo pants pocket for half a day. I was shocked by the results.
I took him to the clinic with a print out of the results and I finally got our doctor to believe me something was going on! Well… his EKG showed abnormal P waves and his heart rate ranged from 59 to 128 while lying down having the test. He’s going to a pediatric cardiologist in a couple of days. I am really worried because while I have POTS, I’ve never had any abnormal heart or chest tests (EKG’s, echos, Chest MRI’s and Sono’s).
Anyone else have an EKG with inverted P waves or ectopic atrial tachycardia?
Thanks, SweetFeatherI got my Digifit connect 2 on Amazon and the Garmin chest strap there also. You can get Digifit for ipad and ipod touches also. You have to download the Digifit software onto your hardware and you need to upgrade from the free version. I chose the iCardio version of the Digifit software and I downloaded it from iTunes once I had the Digifit connect 2 and the chest strap. Digifit has a website with lots of info but I found Amazon had it cheaper!
I HIGHLY recommend anyone with POTS with Ehlers use this on everyone in their family to see if anyone has undiagnosed POTS AND to help manage their own symptoms.
I found out my 13 year old son has POTS using the Digifit and the cardiologist confirmed it is POTS! Luckily his P waves being inverted are a benign variant on him. On the sonogram, his valves looked good and the cardiologist found no dilations. Heart is good! PHEW! She referred us to a neurologist and a genetic specialist for his sister who has the worst EDS symptoms. The specialist will be coming to our state so we won’t have to travel. YEAH!
Mine said borderline left ventricle dysfunction. I am having hyponeas at night, 17.4 per hour, as shown by multiple sleep studies. I have caught myself gasping as I fall asleep lately. It is like I forget to breathe. When I saw the cardiologist he only had the echo results, not the tilt table results. I need to schedule my blood draw to confirm hyoeradrenic POTS. Should I head back to see cardio after that? Heart disease runs in my dads family so I’d like to avoid following in those footsteps if possible.
Yes, I was recently diagnosed with mild left ventricle dysfunction. My ejection fraction was 45% and my heart was enlarged. I attributed this to the ASD (atrial septal defect) that I had repaired at age 16. However, when I took my two boys (age 9 and 12) in to the cardiologist they both had low ejection fractions too. My youngest also had a small ASD and his ejection fraction was 48%. My youngest is awaiting a genetic work up. We are going to the genetic in June. We are new to all this. We thank Dr. Diane for her study we would have never put the pieces together without her.
I think I qualify for this DX too. I had a stress ECHO June 2010, with mild/minor abnormalities all over the place, and a conclusion of “cannot rule out cardiomyopthy at an early stage”. Also says: “Diastolic dysfunction; mildly abnormal relaxation without significant increase of left atrial pressure.” If you want to know more from this report, just let me know. I am having my next ECHO in Sept.. just a couple of weeks away.
Hi Ourfullhouse, Yes, I think we’d all like to know how your echo goes!
I know it has been a long time since I was supposed to update with my ECHO results, yikes, but this is how it went:
On the whole this ECHO (post CCSVI treatment and I was on Diamox) was better than the one 15 months previously. Resting ejection fraction 55% and the mild abnormalities seen previously in the left ventricle are gone (?), the right ventricle previously was at the upper limits of normal in size and is now totally normal, the left atrium was previously mild to moderately dilated and the right atrium was mildly dilated and both are now normal, previously had trace mitral valve regurgitation and now none, and on my first ECHO I had mild pulmonary hypertension and now it is also gone (pressures went from the 32-37 mmHg range to 23-28 mmHg range).
Things that stayed the same were that the mitral valve is mildly sclerotic and the aortic valve is trileaflet with mild sclerotic changes.
The one thing that changed the most in the most recent ECHO and has left my cardiologist scratching her head a bit, is that my blood pressure barely changed AT ALL during the stress part of the test. Doctor talk is “Blunted blood pressure response to exercise”. My doctor was saying she more typically sees BP’s go too high, not that they don’t change. She didn’t think it was bad, she just didn’t know WHAT it could mean.
So, overall, it would seem that CCSVI treatment and/or Diamox have reduced the pressure going into my heart and so where things were starting to enlarge, now they are fine and even the pulmonary pressure is back to normal.
I also wonder if as my veins restenose if the pressure will go back up again? Or, is the Diamox having more of an effect than the CCSVI treatment? Lots of things to wonder about! =)
Anyone else have a before and after CCSVI treatment ECHO done and were there any differences?
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