Heart failure

[BDavis]

Hi gang,
It's been sometime since I have been on the forum. I stay away when I want to hide from my condition, pretend that I'm not ill. The truth is you guys are the only one I tell my real fears and concerns to. Oh, I tell people about my condition but they either are tired of hearing it, don't buy it or love me too much to want to believe it. I know my sweet husband would do anything to make it all go away, but there is nothing to be done at this point.
So, now after "crying in beer", I'd like to talk to those who have found themselves in heart failure. Some days it seems a lot like stage 3 then I have a good day and feel like stage 2.
When the doctor who figured out Lipitor was my poison diagnosed me she said it was heart failure with secondary pulmonary hypertension. I got better for awhile off Lipitor, but in about 6 to 9 months I realized I was not progressing to wellness but rather was starting to decline.
Now I'm back to not being able to walk to my mailbox with out loosing breath, eyes blurry and burning, fatigued and weak. I have tremors in my hands & eyes and the doctor I went to recently found even my tongue has tremors. I get numb sensations in my hands and face. My palpitations are getting more frequent without exertion.
I don't know anyone else with heart failure. If someone else is out there that can share with me, I'd appreciate hearing from you. Thanks BeLinda

[Ray Holder]

Dear BDavis
I took simvastatin for 4 years, and had bad muscle loss, and heart weakness, which did not improve when stopping statins, but continued to get worse for the next 14 months.The doctor blamed my age. My problems were complicated by the fact that I had polio 30 years before, and statin use coincided with the onset of post polio syndrome, which uses up more carnitine than the body produces, and needs supplementation. However, statin damage seems to reduce the supply of carnitine anyway, and supplementation of it brought much improvement to the muscle problem.

4 days after I started fairly small Q10 supplementation, I noticed remarkable improvement in strength and breathlessness on the stairs, and my heart action was much improved. I was also able to stop 2 out of my 3 blood pressure tablets, as I monitor my own blood pressure.

The reason why these things work is because the heart muscle is deprived of the ability to produce sufficient ATP, the chemical made in the mitochondria which is the real source of heart muscle energy, the heart muscle itself is usually OK unless something else has damaged it previously. The loss of Q10 due to statin action is one cause of energy loss, but while that is needed for all ATP production, when sugar levels run low in the night, carnitine is needed to allow fat to enter the mitochondria as fuel.

So really I had heart failure 7 years ago, and have been supplementing with Q10 and carnitine ever since, until I had a bad batch of carnitine 9 months ago, and unrecognised heart weakness caused fluid to appear on my lungs, culminating in a very early morning visit to the hospital by ambulance as I could not get my breath. I am now back home again, but seem to need diuretics permanently. I am now 87.

If you do not already take Q10 and carnitine supplements, I strongly recommend that you do so. Things to consider first are whether you are diabetic , or if you take Blood pressure meds, when you should watch your sugar level or blood pressure carefully, the improvement caused by Q10 can make either of them drop, and a change to your meds may be needed. The other problem only arises if you are taking something to reduce stomach acid, if your stomach acid becomes too weak, Q10 can make a yeast grow, not a good thing, and you may have to choose between them.

Dosage of supplements is something you will have to decide by experience, I don't know if you get mild angina pains, if these are usually in the day, you probably need more Q10, but if late evening or at night, then L Carnitine is low. 100 mg Q10 is probably a good starting point, watching how it affects you, and try 1 or 2 carnitine capsules after a fortnight, so that you know which is helping you. Q10 is most likely to be your major concern.

Ray

[BDavis]

Ray,
You are a wonderful help and have appreciated reading you postings over the last 1 ½. I do take Coq10 at this point (after increasing as needed) I take 300mg x 3 a day, Acetyl-L Carnitine 500mg x 3 day and B-12 2500 mg 1x day. I’m almost 52 years old and have had high blood pressure and diastolic dysfunction, for 27 years. I have only treated it 11 of those years. I don’t think Lipitor caused my heart problems but took me to a new level (heart failure). What I also treat, since being on Lipitor is acid reflux, with prilosec. Now, I learned it causes an absorption problem of CoQ10. I’m going to try to not use it daily as I have for a year and only in dire need. Thank you.

[BDavis]

Ray,
I stopped the Prilosec and already feel a difference. I feel the results as if I increased my CoQ10. Thank you so much. It has given me a couple of "good day". Let see how long it last.
BeLinda

[Ray Holder]

BeLinda
Glad the reduction in prilosec is helping.

One other thing I noticed was that you are taking Acetyl carnitine. This version appears to work as well as L Carnitine for those who have muscle pain from statins, but I believe that, if your problems have more to do with energy availability, eg to your heart, then "free" carnitine is the one to accompany fat into the mitochondria to produce that energy. The Acetyl type deals more with removing waste products after energy production. It would be worth while to try some L Carnitine instead of the acetyl version for a time, I suspect about a week should tell you if it is more helpful.

We learn from one another's experience on this forum, and are grateful to all who help us.

Ray

[BDavis]

Thanks Ray again. Very helpful, I give the straight L Carnitine a try.
Yes this forum would be rich if we could charge the rates the doctors charged to get us to this place not to mention the pharmaceutical companies.
Sorry, did I sound bitter. I have a cold today:(