canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
After a not-so-interesting meeting with a POTS specialist, it occurs to me that aside from florinef, beta-blockers and midodrine, exercise is the only other tool in the arsenal that helps control it in a significant way.
I've noticed over the years that running right after breakfast helps, and I do better on days that I keep active.
POTS specialist said, "no, you're not ready for running" and suggested recumbent bike. Did recumbent bike this AM -- forget that -- I ended up with a POTS attack; vomiting in the washroom.
OK -- so I have the first part of the day worked out -- breakfast, go for a ten minute run, but I know that's not enough to carry me through the day. I like to do weights, so after yesterday morning's run, I did some in the early afternoon yesterday -- I didn't have a full-blown POTS attack yesterday, but felt pretty queasy most of the day.
I get the sense that whole body aerobic activity kick starts my ANS -- what's the deal? How frequently should I be running throughout the day? What's your experience?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Be careful with running. My EP suggested that so I started doing it daily. At 2 weeks my HR substantially dropped (too much).
By 3 weeks I was passing out in an abnormal way with extreme confusion likely due to my HR dropping sporadically into the 30's. I ended up in the ER. Of course it didn't happen in there.
Then I couldn't get my EP to take it seriously because my problem is usually tachy and pvc's. I had to send photos of my HR monitor.
This week went in for a stress test and then he implanted a heart monitor right after unexpectedly. I wasn't even supposed to meet with him (just the stress test tech) that day.
I'm also on midodrine and have tried florinef and beta blockers too. Running was helping me too and then it backfired and caused me a lot of problems.
Now that I have the implanted monitor I may try to do it again just to document the brady and fainting if it happens again.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Summer3: Be careful with running. My EP suggested that so I started doing it daily. At 2 weeks my HR substantially dropped (too much).
By 3 weeks I was passing out in an abnormal way with extreme confusion likely due to my HR dropping sporadically into the 30's. I ended up in the ER. Of course it didn't happen in there.
Then I couldn't get my EP to take it seriously because my problem is usually tachy and pvc's. I had to send photos of my HR monitor.
This week went in for a stress test and then he implanted a heart monitor right after unexpectedly. I wasn't even supposed to meet with him (just the stress test tech) that day.
I'm also on midodrine and have tried florinef and beta blockers too. Running was helping me too and then it backfired and caused me a lot of problems.
Now that I have the implanted monitor I may try to do it again just to document the brady and fainting if it happens again.
Summer, what does EP stand for?
So your doctor IMPLANTED a heart monitor----as in surgery?? Like a defibrillator?
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Electrophysiologist. Yes, he actually trained another EP to insert it so it was kind of nerve wracking and took longer than expected. It's a new one the size of a triple A battery.
It's a minor surgery. He let me do it completely awake with no sedation since I had to drive myself. People can be sedated if they like. I was able to leave within 10 minutes after the procedure.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I cant speak for summer, but walking is more difficult for me than running. Plus, it seems there is something with running that re-sets my ANS. I'm so fed up with these POTS attacks with vomiting / diarrhea / confusion, what other choice do I have? Apparently they use rowing machines at cardiac rehab -- maybe those will do whatever the h* my body needs, but I wont know until I try, and who knows when that will be.
Summer -- those pictures of your LOW heartrate that you posted on Facebook three weeks or so ago -- was that a reaction to the running? I thought it was a reaction to the mido??
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
No it was a reaction to the running. Midodrine has been something I've taken for a while and the low HR was occurring even when the midodrine had long wore off. As soon as I stopped running it went back up.
I'm actually hoping it will drop again soon because I'd feel more comfortable resolving this symptom as a separate entity. Even if that means a pacemaker.
I prefer running also and will not avoid it for life. I should be able to run without dropping my HR or spiking it to 200. I'm intending to try again now that I have the monitor to track things.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Gosh. I'll be careful to monitor closely. I do believe running has a positive effect; I had a burrito tonight, which normally would have spelled disaster -- I went for a ten min run after dinner -- still haven't had a POTS attack. I think I'm going to try 1 x 10 min run directly after each meal. I have a feeling that even if this works for a while, I'll eventually build up a tolerance and end up an exercising fool -- exercising 24/7 and even then no longer able to put a stop to these attacks...Anyway, one step at a time, and if I'm right that this will help to control the attacks, I'll enjoy the peace for as long as it lasts
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Eating is a HUGE trigger for me too. I thought I was going to collapse today after eating a bowl of rice pasta.
Do you also take midodrine? What did your doctor say about exercising on it? It doesn't spike my BP while exercising. I wonder if that's true for everyone.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Summer,
Interesting that eating is a huge trigger for you as well...
So far so good -- since running after dinner, I still haven't thrown up w/ diarrhea and confusion then passing out tonight -- I can't imagine my passing out being any worse, but of course -- them's fighting words, right?! (i.e. I have full confidence in this disease's ability to kick my butt if / when it so chooses)
I'm not on Midodrine; just on Florinef and beta blockers. Did your EP have any explanation for the connection between your running and your heart rate going berserk?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
No explanation at all. He just all of a sudden wanted to implant the monitor that day if I wanted to do it. I didn't even have an appointment let alone a procedure scheduled with him.
I had brief RBBB show up on an EKG, my BP dropped while running on the stress test and mild ST depression. Maybe one of those things made him take it more seriously. I have no idea.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
FTR, the running didn't prevent a POTS attack this AM; the only difference is that I feel physically stronger bc I've been exercising. Thank goodness for LLMDs, or this would mean a life sentence of this crap.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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