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Just An Update.


jangle
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So I "began" following this exercise protocol at the beginning of February.

http://hyper.ahajour...t/45/3/391.full

Basically,

3x30 minutes of jogging for 4 weeks

3x40 minutes of jogging for 4 weeks

3x50 minutes of jogging for 4 weeks.

Right now I'm in the 10th week of the protocol. I'm jogging ~6 miles in 50 minutes. I'm about to incorporate weight lifting.

After about the 6th week I noticed my standing HR (after a few minutes) consistently dropped from 123 to about 105.

Now my standing HR is about 94. (This is at 10 weeks) (Reference supine is about ~66)

My symptom reductions seem to mirror the reductions cited in the study, although I will say that I noticed a lot of the improvement when I transitioned into the 50 minute jogging intervals. It seems that duration of exercise correlates to the reduction in symptoms at least in my case.

I wouldn't be disheartened if you're not noticing symptom improvement with your own exercise regiment after three months. I talked with TXPOTS and she mentioned very gradual change in her symptoms over a 18 month period before she completely overcame her POTS. I believe the response time is highly individual.

I stopped jogging outside and jog on the elliptical indoors and have been doing so for the past ~2 weeks or so and I find it about the same as jogging if you set the resistance beyond level 10.

Medications + supplements I've been taking:

Turmeric + Vitamin D + Losartan + Fish Oil + Alpha Lipoic Acid + Multi Vitamin B

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Any idea what your typical heart rate is during your jog? How hard are you pushing yourself?

Yes, my heart rate has been normalizing during my jogs.

When I first started out it would go to around 200-210. Now it starts out at about 160 and it slowly goes up to about 180 as time goes on (after about 30 minutes), usually maxes at about 185 but only because I start run/sprinting.

As for pushing myself I'm conditioned now so well that I don't feel that out of breath during my runs, in fact I feel way more energized.

I should also note that the 94 HR number is after I'm standing still for a few minutes, my usual standing HR semi-moving around is actually around 82.

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Jangle:

I'm so glad you are seeing improvement! My daughter just started an exercise program last week. I hope it works for her as well. May I ask how long you have had POTS?

It's difficult to say exactly when my POTS "began", I've had minor symptoms most of my life. It first noticeably got bad about 6 years ago and stayed bad until now.

I would recommend not to be discouraged if you don't get consistent results or any results in the initial time period. I believe people respond at different rates and it can definitely take longer than a few months to recover.

I still don't consider myself recovered but I do know that I am A LOT better off than I was. Right now my symptoms are better described as inconveniences (sometimes I can describe it as just a slight sensation in my head) rather than major barriers although they can still fluctuate at times to being painful again.

I will continue to advance my exercise regiment. TXPOTS is sort of my Obi Wan Kenobi and me as Luke Skywalker. She blazed the trail. Your daughter can be Princess Leia.

Don't mind me.

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That is so great!!!! :) So happy you are feeling better.

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Glad to hear you're feeling better.

I'm trying to motivate myself to start a rigorous exercise regimen, but have been too scared to start because of the tachy, chest pains and BP fluctuations I've been experiencing lately.

Guess there's only one way to find out what's going to happen - get "moving" and go from there on ... I mean, how bad can it get?

Out of curiosity, Jangle, were you able to reduce any meds once you started exercising? I've read that a bunch of people were able to gradually reduce their meds once they started exercising regularly, and i just wonder if you are in a similar situation.

All the best

Alex

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I've been following your posts as I've also been increasing my workouts in hopes to feel better. I do 35 minutes running with some walking on the treadmill and 40 minutes on one of the insanity videos (as seen on tv)... I still can't finish one of those videos without breaks or skipping some. Do you walk some when running or is it all 50 minutes of running?

I appreciate your information man, you are inspiring us. There are so many days I don't feel up to exercise, but I force myself. Seems exercise has been one of the most supportive interventions. I'm pushing myself. Heck, tonight I watched most of my game on tv standing rather than sitting. I figure if I have a chance to work my heart out and build more heart strength I need to do it.

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Hey Jangle,

Good going. You've been an inspiration to me and got me moving more. Not having the great sucess that you are - but, any improvements I'll take - and there are definite improvements. Keep us posted on how you're doing and what you are finding to help. So, happy that you're going in the right direction.

Issie

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I've been following your posts as I've also been increasing my workouts in hopes to feel better. I do 35 minutes running with some walking on the treadmill and 40 minutes on one of the insanity videos (as seen on tv)... I still can't finish one of those videos without breaks or skipping some. Do you walk some when running or is it all 50 minutes of running?

I appreciate your information man, you are inspiring us. There are so many days I don't feel up to exercise, but I force myself. Seems exercise has been one of the most supportive interventions. I'm pushing myself. Heck, tonight I watched most of my game on tv standing rather than sitting. I figure if I have a chance to work my heart out and build more heart strength I need to do it.

There's no need to rush your exercise regiment. I'm relatively young and so my body conditions quite quickly. I think TXPOTS worked her way up to 5 miles of jogging over a period of months and then she went up to 8 miles after a few more months. For me I'm jogging the whole 50 minutes, but again I've been doing this now for about 2 months.

35 minutes is great, and if you have to walk that's alright to as long as you get back up to jogging. I found that doing interval training really boosts your endurance, i.e. sprinting for 30 sec - 1 minute followed by going back to normal paced jog, but again if your HR is already high from just jogging it's probably not advised to go into a sprint.

I haven't started weight lifting yet and I know TXPOTS did a lot of weight lifting which probably helped her more than just jogging alone.

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Great news, Jangle!

Can you tell me a bit about why you're taking the Alpha Lipoic Acid and Tumeric. My son is taking Losartan...I wonder if those supplements would help with his energy.

Alpha Lipoic Acid is a strong anti-oxidant and Dr. Stewart found that anionic species in endothelial cells can contribute to their dysfunction. He found that administering IV sodium ascorbate which is a more bioavailable form of Vitamin C boosted blood flow in low flow POTS.

Since I don't have access to that type of antioxidant I went with the next best thing which is essentially alpha lipoic acid. ALA I believe has the strongest antioxidant activity you can buy over the counter.

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Thanks, Jangle. I just realized that Dan is already taking 10mg/day of alpha lipoic acid in a drink called "NiteWorks" that is supposed to increase NO levels. Not sure if 10mg. is an adequate dose. Do you mind sharing how much you're taking?

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Well, that's quite a bit more than Danny takes! Maybe he should try a larger dose.

I've read some conflicting things about turmeric. While it helps some people a lot, I've read that it is a nitric oxide scavenger. That defeats the purpose of taking Losartan! Are you sure that turmeric is helping you?

Just out of curiousity, what dose of Losartan are you taking? And what time of day? Dan is on 25 mg. in the morning, but he is thinking about adding a nighttime dose to see what happens.

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I only recently added turmeric. To be honest I don't think it does anything. The bioavailability of Turmeric is so low that it can't even be detected at dosages less than 4 grams. I only take about 400 miligrams. I probably will stop that since it's expensive.

I take 25 mg of Losartan. That drug has helped the symptoms and helped me under conditions of stress, however with my exercise my BP has gone from like 120/75 to like 105/60, I don't know if I really want to add anymore Losartan which might lower my BP too much.

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Jangle,

An inexpensive way to take tumeric is to buy it in the spice isle of the store. I fill my own capsules - but, my parents put it in their tea. It will really help pain. There are very conflicting ideas out there on tumeric as to whether or not it will or will not lower NO. So, I guess you would just have to try it and see if it makes a difference. It is one of the best anti-inflammatory things you can take and really helps with pain. It has many other good properties too.

Issie

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