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This Was Weird


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Hi,

So I've been more active lately, and I've been pleasantly surprised to find that I can do a lot more than I thought I could do. When I do feel bad, I've realized that if I rest for a while (like an hour to two or three hours) I will eventually feel better, maybe even able to resume activity.

Today, in fact, I went to a local park and walked around the path. I haven't walked this far in quite some time, and it felt great to be able to do that, and the weather was warm, but not too hot, so I was loving it. I got tired toward the end, checked my heart rate, and was surprised to find that it was 109, not into the 150's or 160's like I was expecting from experience. I was really shocked.

Here's the confusing thing - later, when I got home, and sat down, I checked again, and it was 123, higher than it was when I was at the tail end of a rather long walk out in the warm weather.....

Huh??

Then later, I sat outside in the sun. I checked my heart rate and it was 153!! Sitting down! I know that heat tends to make our symptoms, especially tachycardia worse, but I didn't know that it could make it that bad even when you're sitting down.

Also, for the rest of the day since my walk and sitting out in the sun for a little bit (like 5 - 10 minutes), my bowels have been all but liquid. I do tend to have pretty immediate diarrhea when I am out in the heat for even short amounts of time, but for the whole rest of the day?

If anyboy has any insight/advice/explanations/empathy please let me have it!

Thanks,

Amber

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Hi Amber,

Congratulations on getting out there and seeing what your body would allow you to do! Great job!

I've been going to 1/2 mile walks twice a day per doc's suggestion to avoid deconditioning. My heartrate is often like yours, borderline high, right after I stop. But I've noticed that the activity somewhat makes me warmer, and my veins get more bulgy and distended during the hour or so after I'm finished. For the 30 minutes to an hour after the walk I'm much more short of breath, fatigued, BP lower and heartrate much higher (at least 130's). I'm careful to rest once I'm done walking and let my body cool off. Just my experience!

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Guest tearose

Well, you may want to re think a few things.

I agree it was great to do the walking. Did you overdo it though?

Do you usually have your monitor set to alarm at a higher rate? I must not go over 160-180 or I can trigger higher and irregular heartrates. (I worked out a formula with my doctor.) If you can sense a high heart rate, or feel it, maybe you don't need the monitor. I don't get anxiety using a monitor but some do. I just go about my life and know that the alarm will let me know if I am getting too high.

I have several monitors and send them in for new battery replacements and tune ups once in awhile. Have you done this? A monitor is good for about two years before it needs a battery replacement.

If I get higher rates later, after exercise or activity...it is usually a normal response to my having overdone exercise. If I also get weak and tired...it is clearly a sign to cut back a bit. I will still be active, but just not as much.

Here is an example...I stay active and am not deconditioned. I love doing a day hike and have walked a three mile, rolling hill hike in a nature preserve which took three hours. I was going into alarm constantly but pushed through as long as I stayed under 170. I felt great and absolutely loved it. I felt normal again! Until evening when I was wiped out and immobile. It took two days to recover. My heartrate was all over the place, I felt like I had been run over by a truck, I couldn't walk more that 10 steps without beeping in alarm, my gut shut down and I had to go back to my gastroparesis diet,...BUT I am glad I did it and I would do it again. Carefully and not on a regular basis.

I think you will need to way the pros and cons and you will find a way to live within reasonable limits.

best regards,

tearose

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Hey,

That's great that you've figured out that you can get out more. You sound like me with feeling great just from laying down for a bit. I usually need an hour of laying down flat with my eyes closed and being quiet and then I'm good to go again ... I wish I knew why this worked ... I'm looking at a kidney connection since when I get up I have a completely full bladder ... I'm looking at purine metabolism / uric acid since if this isn't working we're not breaking down free radicals and are storing peroxynitrates.

BTW. Have you looked at your BG levels ? I found that eating a small real meal (meat and veggies + glucose source (OJ works great)) every 3 hours is critical ... snacks don't work ...

I'd look at what you ate or drank for this problem though ... John Hopkins says that we should look at food intolerances first for OI ... While not exactly the same, I have a freind who's BG level dives down to 40 and she faints, etc. if she gets any dairy whatsoever ... it's bizzarre really what foods can do to us ... IMHO, anaphylaxis from peanuts is just the tip of the iceberg ... ;)

BTW, I realize that not all dysautonomia is from foods but it's an easy place to start ... gluten, dairy, soy, eggs, corn, shellfish, nuts are the most likely suspects ... WE ARE NOT GOING TO BLAME CHOCOLATE FOR ANY OF THIS ... :ph34r::lol::lol:

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When had you taken your medications in comparison to your activities. Perhaps if you just took your beta blocker and then went for your walk that could be why your HR was low. That is just a thought that I had...maybe by the time when you were sitting down your BB had worn off more.

Good luck! I'm glad you were able to get at least that small bit of walk in though ;)

-Mary

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It sounds like your HR was increasing throughout the day. Maybe your meds were wearing off, or maybe you overdid it, or both. The diarrhea is probably from your ANS acting up. It's good to monitor yourself, to see how your body is reacting. 153 sitting down is a pretty high heart rate.You may want to increase your activities more slowly, to give your body a chance to adjust.

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Hello,

I am not sure if this would apply to you, but when I exercise it is hard for me to get my heartrate to exercise zone, it is usually lower during exercise than throughout the rest of the day. If I am moving at a decent pace, but not too fast, I feel much better than when standing or moving slowly about the house.

Anyway, my cardiologist says that when you are exercising or moving quickly enough, the leg muscles are pumping the blood more efficiently back to the heart and brain. When standing or moving slowly like shopping, the blood is just pooling.

So that is why MY heart rate is in the "normal" range while exercising, but not normal when doing anything else. Could that be what's going on with you?

I know that exercise can be exhausting, but I have definately found it to be worth it. I do much better when I exercise (walk) regularly. Hope this helps...

Ann

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Thanks everyone!

All of your suggestions/comments sound very sensible.

My BB is extended release, so I don't that the time I take it matters or if it is wearing off.

I still have my wrist watch monitor which I check from time to time, but much less when I used to. I've become a lot less freaked out about.

And it's good to know that diarrhea can be a ANS function issue.

Thanks again,

Amber

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