POTLUCK Posted August 21, 2012 Report Share Posted August 21, 2012 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. ) Quote Link to comment Share on other sites More sharing options...
issie Posted August 21, 2012 Report Share Posted August 21, 2012 Interesting idea. Glad it's working for you!!!! Hope you are able to continue to decrease your beta and eventually - not need it at all. Did you go back on your valproic acid?Issie Quote Link to comment Share on other sites More sharing options...
anna Posted August 21, 2012 Report Share Posted August 21, 2012 Funny really that most of the folk in my family that have/had EDS and ANS dysfunction of some form also have or had cardiomyopathy by their early 50's all of them worked manual jobs fishermen, painting and decorating, the latest one with this is by brother who drives underground trains, well not any more due to his heart. The thing that is odd is that the family members that did less full on manual work did not get symptoms of cardiomyopathy as young as the ones that did more demanding jobs. Quote Link to comment Share on other sites More sharing options...
issie Posted August 22, 2012 Report Share Posted August 22, 2012 Potluck, I just responded to a post from Jangle - on his attempt at HIIT exercise. I talked to hubby who is into this sort of exercise and he said that with a high intensity exercise - it works on the nervous system first, then the connective tissue, and finally the muscle. He thinks that doing increments of exercise is what will trigger this response and hopefully help with the over-active system. He said he will walk for 3 minutes and then all out run for 3 minutes. He said not jogging - but, running. I wonder if that would help you with your routine? He said the nervous system wakes up and responds, but, it also adapts fast. So, you have to mix it up and then it will work better. He does the above and also lifts weights.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted August 22, 2012 Author Report Share Posted August 22, 2012 The simple formula to calculate your maximum heart rate for a non POTS person is 220 - your age. So for example if you are 30 your maximum HR is 220-30=190. but if you are 60 your max HR is 220-60=160. They recommend for aerobic fat burning exercise 60-80% of max. They recommend for cardio 80-100%. I agree about the high intensity training.My HR hits 100% of my maximum HR by about the middle of my run and goes to over 120% of my HR before the end of the run. ( When I usualy can not do anymore.) This is part of what I feel may be resetting the maximum HR which would then lower my standing HR relative to lying HR. Quote Link to comment Share on other sites More sharing options...
jangle Posted September 2, 2012 Report Share Posted September 2, 2012 I haven't been able to find a study on this issue but I would not be surprised given that heart failure patients seem to improve with endurance exercise and of course HF has been correlated to increased NE and NET deficiency.Also excessive NE in POTS patients seems to respond to endurance exercise and of course there is a strong ideation of NET being involved with POTS as well.This study is also of interest though:http://www.ncbi.nlm.nih.gov/pubmed/8044969Which suggests that exercise can ameliorate vasoconstriction caused by NE. This vasoconstriction might have an etiological role in POTS for a variety of reasons. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted September 6, 2012 Author Report Share Posted September 6, 2012 I moniter my lying to standing HR with an ordinary BP cuff. I do repeated measures lying, then stand and do repeated measures. I do not count the first minute in each position. I average the others. This gives me a better idea if I have had a drastic change. ( i.e. Better Reproducibility, not Accuracy, for those who prefer a scientific statement. )I have noticed that dropping my Propranolol will, as expected raise my HR, and increase the Lying standing difference. ( The effect is most pronounced after 3-4 days ) However after running a week or two it returns to where it was. Then I reduce the dose again. I am now on 20mg twice a day but plan to hold the taper a couple weeks as I have some upcoming stress at work, and do not want the plan to backfire on me. ( i.e. I will stay on 20mg BID but not taper further.)I will see if I can pull up above study soon. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted September 8, 2012 Author Report Share Posted September 8, 2012 Jangle I took a look at abstract for above, but cannot pull up full article on PubMed. Thank you. This is certainly another factor.This entire system of body control over vasoconstriction and dilation, allowing for exercise, seasonal control, allowing blood to reach all parts of the body and keep one warm in the winter yet cool in the summer, and protecting core body temperature in crisis is incredibly complex. Then there is the immune system which works in sync with this to allow increased or decreased blood flow to certain areas as required for body defense. And the question we are asking is which part is not working right. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted September 8, 2012 Report Share Posted September 8, 2012 Jangle I took a look at abstract for above, but cannot pull up full article on PubMed. Thank you. This is certainly another factor.This entire system of body control over vasoconstriction and dilation, allowing for exercise, seasonal control, allowing blood to reach all parts of the body and keep one warm in the winter yet cool in the summer, and protecting core body temperature in crisis is incredibly complex. Then there is the immune system which works in sync with this to allow increased or decreased blood flow to certain areas as required for body defense. And the question we are asking is which part is not working right.In just mentioning protecting core body temp ~ I am considering myself 80-85% better these days. Have started some weight training for the last few months and almost back to my old baseline. Started cardio this week and can do about 15 min on Treadmill and I'm happy with that. But last night I was freezing cold after having a little ice cream and being in the house my husband keeps at 67degrees. I turned on my heated blanket to warm up and accidentally fell asleep. I woke up very hot, tachy at 130, unable to sweat or cool off. I was up for about 2 hours trying to hydrate (slowly), breath and use cold water to cool me. Eventually it went away and I woke up no worse for the wear today. But maintaining body temp is so important in a body that struggles for it's own homeostasis. Quote Link to comment Share on other sites More sharing options...
spinner Posted September 8, 2012 Report Share Posted September 8, 2012 wow, i wish i could jog. I havnt done any intense aerobic stuff that would spike my pulse rate, except at mayo jacksonville for the stress test. I didnt finish that.Once you've been seriously air starved, it kinda scares you for a while, so these days i do a steady/slow swim or bike ride.Im careful when i walk or bike ride to go uphill, so if i have problems, i can turn around and walk downhill----one more crazy thing POTS messes with you but it is what it is. Most people dont excercise and ive heard with POTS you have to force yourself to do it or you'll suffer various problems. Some people get a functional breakthrough with the excercise too. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted September 11, 2012 Author Report Share Posted September 11, 2012 Relax86 glad your 80-85% better. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 5, 2012 Author Report Share Posted October 5, 2012 Just went from Inderal LA 15mg BID to 20 mg AM only!!! ( This is from last springs dose of 80 BID ) I continue to run multiple nights per week. Most runs my HR goes above my calculated maximum towards the end of the run, and I reach a point I cannot run any longer, but my Garmin watch shows sometimes I will continue 1/2 mile or more and reach a HR 10 points above my calculated maximum. My overall pace is not fast just HR later in the run.The Cardio had me do a stress test a while back where I got my HR to 30 points above max, so he said it is safe to push it. Quote Link to comment Share on other sites More sharing options...
issie Posted October 5, 2012 Report Share Posted October 5, 2012 GOOD NEWS!! Glad to hear things are improving.Issie Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted October 5, 2012 Report Share Posted October 5, 2012 And some people get worse with exercise. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 25, 2012 Author Report Share Posted October 25, 2012 I have now gone from Inderal 80mg BID to starting 7.5mgBID this week. I can feel the increased HR and it makes me feel more easily stressed etc., as it does with each dose decrease. I am still hping to stay at this dose a bit and taper off. I will check my weekend HR Lying/Standing as I do every weekend in the morning to see where I am at. So far continueing the running. Quote Link to comment Share on other sites More sharing options...
corina Posted October 25, 2012 Report Share Posted October 25, 2012 Keeping my fingers crossed for you Potluck! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted October 25, 2012 Report Share Posted October 25, 2012 Really great news POTLUCK...I'm also about 95% better theses days and off of meds right now. I used weight training to help me push through. Light weights and higher reps. It raises my HR by about 40 bpm very quickly and takes an unusual amount of time to get it back down. I don't feel comfortable. I've been cardiac cleared. And the overall result is that I'm better. Calling it 95% these days. Good luck to you Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted October 25, 2012 Report Share Posted October 25, 2012 Great News Relax!!!!!!!!!!!!!! I'm so happy for you Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 27, 2012 Author Report Share Posted October 27, 2012 10/22 Decreased my Inderal to the 7.5. As usual my HR lying and even more so standing increased in 3-4 days ( ~ On 10/26- 10/27 yesterday ) I continued running. Last nights run my Heart Rate went 15 points above 100% of what my calculated maximum Heart Rate should be. This morning my HR numbers on my blood pressure cuff have improved from yesterday. 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. I am not saying this is good for everyone, I am just reporting what seems to be helping me. Only well wishes for all.Maximum Calculated HR is 220 - your age. People without POTS do not normally go over their maximum HR when exercising. That is why it is a maximum HR. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted October 27, 2012 Report Share Posted October 27, 2012 Potluck, so what are your numbers if you don't mind me asking? I've been doing spin class and it's kicking my booty.. But it generally keeps my hr @ 85% of my Max for an hour. My standing HR has gone from 140 to 85-90bpm in 10 months. The only thing I can credit is the gym since I'mMed free. What's your standing HR like? Do you still get a 30 Bpm increase? Does your HR increase while standing still? Sorry I'm nosey, but it's hard to gage progress now, it's been pretty slow for me. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 28, 2012 Author Report Share Posted October 28, 2012 Mytwogirlsrox-Off Beta blocker last winter/spring my tilt test showed about 97 Lying and Standing HR went up to 156 and down to 80 and bounced alot. My home test numbers for weeks prior to test were similar so that is what I expected on test but wanted test for proof..Then cardio tried some beta blockers that did not work well. That was a nightmare period with drastic swings, cognitive problems, toes suddenly turn blue as if they will fall off, faint, lightheaded, blood pressure and HR all over.By May tapered up to Prorpanolol LA 80 BID. Since then I have maintained a (Standing -Lying HR difference less than 30) and a Standing HR less than 120 on RX while slowly tapering. I go down by 10-20mg ( or less as getting to lowest doses) and check HR for a week or two. One time when I decreased from 15 BID to 10BID my HR went back above my criteria so I went back to 15BID. Then in a couple weeks I tapered again. An incredibly slow taper with exercise. If I was not on meds I do not know if I could function for the exercise and I definately could not work, so it has allowed me to continue functioning while exercising and tapering.My HR last nights run was an average of 3 points lower than my calculated max. ( Wow that is high!) And my final HR was 17 points higher than my calculated max, so clearly my body is not normal!But it helped lower todays HR even from yesterday. I took multiple readings with cuff this morning and Lying HR ranged 74-79 with standing HR range 89-98. I never count the first HR on standing as it will do odd things.Probably more info. than you needed ( or wanted ) but I am taking this thing very seriously! Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted October 28, 2012 Report Share Posted October 28, 2012 No, it's great... I'm really trying to do similar things... Right now I've plateaued, my HR isn't slowing down much any more... Maybe it's gonna be more time than exercise now? Who knows, but Im gonna keep on exercising Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted November 1, 2012 Author Report Share Posted November 1, 2012 mytwogirlsrox-from your other post it looks like the exercise cured you? Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted November 1, 2012 Report Share Posted November 1, 2012 Cured... Lol I wouldn't say that Quote Link to comment Share on other sites More sharing options...
shan1212 Posted November 2, 2012 Report Share Posted November 2, 2012 I wish I was better educated about what all this stuff means, but I can say that my experience has been that running is the only exercise that really helps me. I do Firm DVDs too, so that's light weight lifting and cardio, but running is just so intense and makes my heart work so hard. I've been running for the last month (I am a regular runner but have an 8 month old and haven't done it much in the last year and a half) and I can tell such a huge difference in my ability to tolerate standing around, sitting still, all the things that are so difficult when the POTS is bad. But I confess I do not understand the physiology of it!The first two weeks when I started running again, I was definitely at my maximum capability (went one mile, then one and a half, etc.). But the last few times I've run, I can tell that my cardiovascular fitness has gone up several notches. When I stop running, it's because my muscles ache, not because I can't tolerate the exertion. I have better energy, etc.Does this fit into your theory?I need to get a HR monitor, but I've been worried that knowing how high it is might psych me out. Quote Link to comment Share on other sites More sharing options...
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