Diastolic dysfunction: what do you do about it?

ginger45
  • By ginger45 · October 11, 2012 at 10:47 am · 11 replies
  • In Experiences with alternative treatments
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At my follow up with my cardiologist yesterday, he gave me a really good report: my replaced mitral valve was functioning well and my heart was beating strongly and he said everything was great, to come back in a year for another Ultrasound.

When I opened the mail later on that day I saw a copy of the Ultrasound report, and I read it carefully . I saw that I had moderate diastolic dysfunction, something I had never even heard of. I am 67, and I looked it up on the web, and found out pretty much what it was. I called the cardiologist's office back, and said I was concerned about this. I received a call back a little later, and someone who worked with the doctor told me that it was nothing to worry about, that my heart was doing fine. Still I am concerned. I learned that a couple of years after the surgery for valve replacement, I had had mild diastolic dysfunction, and then I learned that in the past three years, it had become moderate. I saw some information on the web, general from Dr. Stephen Sinatra, who is a metabolic cardiologist ,no longer in practice, who recommends, Co Enzyme Q 10, L Carnitine, D Ribose and Magnesium. Of course, the doses would have to be adjusted for a person's size and weight and I am pretty small, and he gives more of a range. I also saw that hypothyroid could be at the cause of it; I saw that Pycnogenol was helpful in one study.

I know that my cardiologist is a good one and regular and doesn't know about supplements for this condition. But before I knew about this dysfunction, I asked him about natural supplementation should a problem arise, and he said he wouldn't be opposed to it.

Has anyone used natural supplements for either maintaining the moderate state or reversing it back to mild?

One theory is that more older women have it because we lose the elastin and collagen , which we see in our faces, but it is also going on inside our bodies, and this might account for the stiffness when the blood is refilling.

I am at a low weight, and do not have diabetes or high blood pressure in general, except when I go to the doctor's office for exams. But I am in my sixties. I live in Austin, Texas. I have a lot of allergies, particularly down here, where mold is high and there is generally something pollinating.

I would love to find out women's experiences with this diagnosis and if they have had any improvement taking natural supplements for it. If anyone has used a cardiologist in Texas who is knowledgeable about this, I would like to know as well who that person is.

Or if they have a cardiologist who has had success with reversing this condition and who might be willing to consult with me, or my doctor, that would be helpful as well.


I take a lot of other supplements in general, and that has helped me stay in as good a condition as I am. Looking forward to hearing from you .

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11 replies   

wrkradvct

Hi Ginger,

Yes I have DD, and it seems it's one of those conditions where doctors have no expensive meds or procedures for it so they treat it "lightly." I think it does give us symptoms such as shortness of breath, fatigue and chest heaviness. I am on hydrochlorathiazide (hctz) which helps some with the s.o.b. My beta-blocker was increased when I began having PVC's and this now helps control the heavy feeling somewhat. So while it's true that the only thing we can 'do' to improve DD is the usual heart prescription of lifestyle management and symptom management, if you feel your condition is not managed enough then keep asking. Wrk

ginger45

Thanks, Wrk, for replying. What I did do today was more research, and I plan on going to a doctor here in Austin, who has a PH D in clinical nutrition, but also consults with folks globally. I have seen him a number of years before but not about any heart issues. He says he knows the Dr. Sinatra protocol for dealing with this. He is a nice guy and a very smart person, so this is worth checking out. I don't have shortness of breath to any great extent, and my allergies keep me pretty tired most of the time, so it is hard to differentiate one kind of tiredness from another. I know that the protocol involves CoEnzyme Q10, L Carnitine, D Ribose and Magnesium for the basics. What I don't know is if it really works or not. But we have to try . My main concern is that the condition does not progress to a diastolic heart failure. Thanks, again.

thankful

Hi Ginger,
I agree, if there were a drug or better yet if cardiology was prevention of any worsening of DD a goal, then dd would get more attention, meanwhile...
I'm dealing with DD and mvd, and prinz angina, so what im sharing is for all of that and it works for me, but we each are different. Im glad you'll be seeing a phd nutritionist who is familiar.. I use most Sinatra recommendations with a few more, coq10 100mg am and pm, twice daily, Vit D3 4000iu daily, magnesium oxide 400 mg one twice daily. Also I take Perfusia (l arginine) two twice daily, and taurine 500mg two three times a day, in addition to diltiazem 120 mg daily and potassium because my blood levels were repeatedly low.
Also for me stimulants like caffeine and chocolate worsen the DD symptoms. My heart needs softening and smooth relaxation, not Stimulation.

So meditation, relaxation, visualization, all that is part of my live long and healthy plan. A process of discovery.
Best wishes on your healing journey.

ginger45
  • By ginger45
  • Reply 3452537 · In reply to 3452095 by thankful
  • October 12, 2012 at 10:30 am
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Hi Thankful, I appreciate your taking the time to post. This is something brand new for me to know about, although it appears I have had it for a while. I agree that caffeine really has to be limited for me as well; some days I cannot even take decaf:) ; it depends on how I feel that day. I recognized some of the stuff you take; I didn't see L Carnitine, which in a certain form is part of Dr. Sinatra's program. I already take lots of supplements, and the thought of taking more is not thrilling, but neither is learning about DD.
If you have been on this program for a while, have you noticed any differences either in how you feel or your test results if you get the Ultrasound, like I do?
How long have you been on this regime?

Were you working with your regular cardiologist, or who put you on this regime? Most regular cardiologists are unfamiliar with this alternative approach.

thankful

Hi Ginger,
You wrote...although it seems I've had it for awhile....sadly the medical model is disease oriented and not health oriented, so no incentive for them to inform us of the whispers of dis-ease so we can begin our own self are rebalancing. The good news is you know now, and now is your opportunity as youve reached out here. I say all that to preface the following response.
Yes, I have been on the added nutrients for some time now and they all attribute to my being able to walk, talk comfortably, etc.
I got on them initially because under the md care my health was declining and yet it was as if the profession was waiting until my cardiac health declined more and more until it was more solidly identifiable. I saw a naturopath who prescribed many of the Nutrients and introd me to dr, Sinatra and encouraged me to find a cardio like dr Sinatra, that was back in 2006 just when the woman cardiologist from Scripps in SanDiego research on women and heart disease was about to be released. I did kind a cardio and been his pt ever since.

There is a great utube video by this woman cardiologist, if you search in YouTube the key words I hope you can find it. I'll also look and post again if I find it. She describes care of the whole person cardiology, including prevention, nutrition, spiritual ie quality of life, that you can give ask your dr to watch, it is short. And it is the direction providers are moving because it works.

DD can result from different causes and conditions, high blood pressure being one. Stress and too much living on adrenaline for me.

My cardiologist encouraged me to find my exertion threshold, then stay BELOW it, thrive below it. The nutrients are used by the cells for energy and I want smooth, ample flow. so no caffeine ever is what is best for me. I do cheat on occasion, giving into denial and rebelliousness, and I feel it later in my heart, it has to work harder and that is not what it needs.

No I don't need anymore tests, only is symptoms get significantly worse and I cannot get them turned around with all my tools and supports. Learning to heal my body and relationship with life, less fear and more appreciation for my life, one day at a time. It was really scary, and more after these years I'm learning its my poppy to cultivate peace within my heart and soilless. Funny ting was I did not realize my heart was teaching me about peace all along, by contract and relaxing, letting go in perfect balance, so now the DD is one of my teachers.
Best wishes on your journey of discovery.

ginger45
  • By ginger45
  • Reply 3453057 · In reply to 3452930 by thankful
  • October 12, 2012 at 1:42 pm
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A wonderful reply, thankful. What is the name to look for on youtube for the woman cardiologist? I know that stress might have played a role, or getting older. I, like everyone else, has had my share of stress. One of the good things though is I am an artist, and also a sometimes writer, once a month, and so I have a creative outlook that I can focus on, when I am not dealing totally with a scary issue, on creating beautiful art works and often either selling them or gifting them. I have a strong spiritual side.

Also it occured to me that my daughters, who are in the mid twenties, both have fatigue issues, and I am thinking that maybe there is some metabolic slight abnormality regarding energy production, that I might have passed onto them. I will think about this some more, but this is the first time that I am thinking about it as something more genetic and more complex. In your twenties, you generally have lots of energy.

flacjen

hello all! i too have DD and i take the 4 supplements you first mentioned. i have been taking them over 3 years. i have also done my own reseasrch and added a few others...have also been diagnosed with a few others diseases so my research also involves them as well. i am blessed in my pmd is very willing to read and discuss any "new" finds i bring into my appts.
best wishes!
LIVE STRONG

ginger45
  • By ginger45
  • Reply 3453512 · In reply to 3453395 by flacjen
  • October 12, 2012 at 5:14 pm
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HI Flacjen, just curious: did you see good results for the three years of taking them? Did your DD improve, and /or did you feel more energetic? thanks.

flacjen
  • By flacjen
  • Reply 3454694 · In reply to 3453512 by ginger45
  • October 13, 2012 at 8:48 am
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yes to both! i will get back to you this weekend on the doses i take and what works for me!

thankful
  • By thankful
  • Reply 3458914 · In reply to 3453057 by ginger45
  • October 15, 2012 at 1:28 am
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Hi
Ginger, the doctors name for the you tube videos you'll access by googling. mimi guarneri integrative medicine. Ther are two video links plus much more.
Stress is an interesting thing. We need some stress yet, more about balance between contraction and relaxation. Having a spiritual perspective as you note is so helpful. And did you know that there are different philosophies regarding mind, body and healing, and that the md model is based on biology and ignores consciousness? So meds are borrowing from other philosophies, and those other philos are worthy to know about. For example yoga, Ayurveda , traditional Chinese medicine, Taoist, Buddhist understanding of mind,body and dynamic healing, and healthy living are very old systems and focus on sustainable health rather on the pathology. Integrating wisdom for whole person healing and thriving.
Best wishes on your discovery for you and your daughters!

ginger45

Thank you, thankful. I am readjusting myself once again, and this morning I have the appt with the clinical nutritionist. I like your perspective on things, we need a balance and peaceful thinking for the long run. I will look up the woman on youtube later today. Being in Austin, allergies, particularly to year round mold levels, underscore everything, but we can't vacuum out the air, just try to do the rest that we can. And we , for sure, cannot eliminate all stress from our lives.

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