Cardiac Exercise To Improve Net

[Mytwogirlsrox]

Shan I wouldn't get a HR monitor, just my advice, but I get kinda obsessed with the numbers. If your not using one, go with how you feel. Listen to your body

[POTLUCK]

Shan- I think it fits with the theory well. I do not think their is any clearly convincing evidence of how fast you need to get the HR going or for how long, and not even that my theory is more than that, a theory. Some people on here seem to have a problem getting progressively worse with exercise, but if you are doing it and your cardio fitness is going up thats great.

Mytwogirlsrox- well, I do not know about "cured"- I hope for you, but you are having few symptoms and your numbers are normal?

[Mytwogirlsrox]

I guess my numbers are normal enough. Dr really thinks pots is a lot more than just a 30bpm increase. I get a compensatory "surge" from the blood volume shift, then my hr slows down to 80-85. I'm never over 100 anymore, so I guess it's not considered tachycardia? I don't have other symptoms besides anxiety (no GI or brain fog, any of the related potsy symptoms).. So it's not like I was disabled then recovered.. I don't know, I'm just glad to be unlabeled. The OH to me makes sense, Ive always been 90/60, I had a huge volume shift after I stopped breast feeding & then hormone shifts. Then being anemic from pregnancy and massive bleeding during 2 c/s. I don't know, I still have to work through all this in my head... Anxiety makes things hard to cope with. Plus I'm so pessimistic I just hope my pots days are in the past and I will continue to "normalize" to whatever norm that may be.

[POTLUCK]

Update- Have a cold this week, but have continued my taper last week. As I mentioned earlier in this thread I was on Propranolol LA 80mg BID last spring. I have tapered down to 3.75mg of the long acting form in the morning only now. ( Made with gel capsules carefully splitting the larger size capsules ) My numbers the past few days Lying run 76 HR and standing vary alot but average about 98 standing HR. I was running quite a bit last week at a jogging pace ( 12 min./mile ) but my HR still rises over time to about 20 points or more above what my calculated MAXIMUM HR for my age is. It is still improving. Symtoms are better. I am taking mitochondrial supplemtnts recommended for the diagnosis I recieved of an electron transport chain complex 3 disorder also.

It sounds crazy but when I have tapered to fast my lying to standing HR becomes to high.

Thus tapering B-blocker while exercising has been working for me. Exercise without the B-blocker would not have been possible, as I was simply in too bad of shape.

[ramakentesh]

My latest theory is that maybe my running ( or any Cardio exercise ) helps improve POTS patients who are able to do it via epigenic changes to the Norepinephrine Transporter Gene (NET). Importantly I do not think the NET gene is likely to work the same at each site. So if I use the heart rapidly ( by running and causing my HR to go very high for lengthy periods of time several times per week. ) then the heart may be readjusting its NET gene via an epigenic mechanism. ( Which is what it may be designed to do.)

This would slow the heart to a more reasonable rate when running eventually by continually increasing the running Also decreasing the B-blocker - or allowing the HR to go faster means given the same amount of B-blocker the heart would be used to working slower.

The overall effect of this is to maintain my HR at a lower rate when I go from lying to standing on a lower and lower dose of B-blocker.

I can not say if this is why it is working but I can say that tapering my B-blocker while increasing my running continues to be highly effective. I have gone from Inderal 80mg BID to 30mg BID !!!! And my lying to standing HR on this dose is under 30, most days under 20

( The idea I am suggesting here is that maybe epigenic modification of NET in a particular location of the body, rather than just enlargement of the heart as Levine sugests etc. has to do with the beneficial effect of exercise. )

have thought similarly or through immuno regulation of abherant cytokine activity (which just might be effecting NET gene chromatin levels)

[POTLUCK]

Had to go back to 3.75mg BID of Propranlol LA or symptoms are too bad and tachycardic standing. It is amazing that after being on such a huge dose my body would care about this little sprinkle.

[Relax86]

Glad you're still updating, I was wondering how you were doing

[Chaos]

That is interesting. Thanks for posting.

Am going to start tapering off propanalol myself now at my doctor's recommendation. Not looking forward to it.

[POTLUCK]

What seemed to be working for me is tapering only while obtaining a high heart rate exercising ( which my cardio cleared me on - I even did a stress echo with Heart rate ~30 points over my calculated maximum .) I have had some trouble tapering the last 3.75 BID of extended relaease propranolol, but this may be because I missed more running than usual due to being sick 10 days with cold/flu, and all the holiday stuff which anyone with POTS must know takes every spoon available ( i.e. uses up all your reserves of energy/capability )

Thus I can not say I have gotten any better in a month, though not worse either so I am feeling positive.

I am not sure how raising my heart rate helps, but I have recorded a drop in my standing heart rate the day following a hard run many times now, and overall I have been able to taper the Propranolol drastically. Another idea that has occurred to me is it may be an energy thing. The brain does not function well without energy, it is one of the high energy demanding organs. Thus, if my cells are not able to take in energy properly ( such as due to my Mitochondrial Disorder: Electron Transport Chain Complex 3 ) the body may be increasing adrenaline to get energy to the cell. Running may help this by allowing energy into the cell faster ( my understanding is there is a cyclic AMP mechanism when one exercises that directly increases energy in the cell because when an individual is running their muscles require more energy) - thus the brain may be getting more energy, then the body produses less of the prior abnormal adrenaline reponse.

A final mechanism is it may be causing less abnormal Reactive Oxygen Spesices ( ROS ) which I have read can be produced when the Electron Transport chain ( my mitochondrial defect ) is not working right. These can cause direct problems for the brain and other areas including my Temporal Lobe Epilepsy, but they also directly affect nitric oxide production.

I realize that this is technical, may not pertain to someone with a different etiology for their illness, and is just speculation. I spend a lot of time researching these ideas and my illness, and thought that some people might appreciate some of my thoughts on all this.

I am happy that my illness is doing better, and hope I will get well. I wish everyone else the best in searching for their cure, and hope that something I put down might help someone in finding that.

[Chaos]

Very interesting hypotheses to explain how the exercise would account for helping your symptoms. Thanks for sharing these. They do indeed give food for thought and areas in which to explore further myself.

[POTLUCK]

I think that pushing the heart rate so high may mean the body tells the heart to reset or adjust to a more appropriate range, which then helps keep Lying and even more so Standing heart rate down.

Cardiologist/POTS specialist was very interested in this theory. We discussed if when my HR goes above the calculated maximum for my age what is the VO2 max doing. He suggested a treadmill test for oxygen consumption while running. The problem now is getting a day to do it. It is very difficult to have POTS and work without trying to do anything else. I do hope to eventually get the answer.

[issie]

Maybe, there is some sort of improvement in the vascular function. By increasing blood flow - it would/should increase oxygen. But, by stressing and forcing expansion of the vascular structure - could be improving that function. With increased exercise maybe the vascular structure and pumping action is improved. And that improvement stays good with not only lying down but upright posture too. Since some have seen great improvements with exercise - seems like that would make sense.

Issie