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Ongoing Mystery of Exercise

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On this forum I have complained about "over-exercising" before- how I thought that exercise was the best treatment for POTS and trained up to running half-marathons at a decent pace, before I realized that I was always in a fog and unable to make progress on my dissertation. Within a few months of giving up on cardio almost entirely, I finished my dissertation and earned my Ph.D.

Well, now I am on mestinon (90 mg. time-release, 1X daily). And about a month in. At first, I was doing a lot better, but in the past 10 days I had a bad cough, wasn't sleeping well, and noticed I was back in this weird fog.

Today I thought "well, life is the pits again, I guess I better at least try to do some exercise," so I went for a run. I just ran for 30-50 minutes, and most of it was ~5 mph (on a treadmill), with BPM maxing around 145. And then afterward I ate a small meal. And I felt great! My mind is so clear! I applied for TWO jobs in one afternoon (I just landed a job, but was immediately furloughed by government shutdown, and now I'm going to run out of health insurance, probably before the new job starts...so poor and anxious!) 

If I am right and I understand how I relate to exercise, then I will feel bad tonight and not be able to sleep. Then I will feel worse tomorrow. But we will see.

I guess one thought I'm having now: exercise always seems to give me a temporary boost, but that boost went away for much of the past year. I'm thinking now that that's because I wasn't doing long solid slogs of cardio. The temporary boost seems to require consistent high BPM - for at least 20 minutes or more. For about 9 months I was on an experiment to try low-BPM, high-resistance recumbent biking. I thought "maybe I should train up my leg muscles and keep my HR down." But I now think this was the exact opposite of the best kind of exercise for me. Probably a mix is best, but replacing running with recumbent biking was a step down for me.

Maybe half-marathoning was just too much? Or rather maybe I just never really fully adapted up to it! That's another thought: I used to run pretty d*** hard, but only once or twice a week. Maybe that was just too hard too infrequently. 

 

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I started Mestinin 3 days ago (20mg 3xdaily). I went to PT today and I'm not passed out, I even had energy to wash and fold laundry.  I try to walk every night and during the day some exercises on the bed with my gel ring and big red ball. Steady exercise makes a big difference--just a little every day, no marathons needed especially for beginners who have to build up very slowly. I am satisfied with the benefits of some daily exercising, it is as good for your head as your body too, it's a big boost for both. And very important, be kind to yourself, be forgiving. Doing less running is still running and that's better than no running. Applause to you. 

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I have been trying to exercise a little bit almost every day. It seems like when I exercise, I feel really good that day and then have horribly high heart rates and feel gross the following day, and then back to better the next day.  

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I second what @WinterSown recommends: slow but steady is better for dysautonomia than long, hard work-outs. Of course you will feel better after such a run - but that is only to be followed by feeling worse. Shorter - and milder - exercise three times a day is probably - in my experience - much more gentle and healthy for the body than rigorous exercise. 

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> Shorter - and milder - exercise three times a day is probably - in my experience - much more gentle and healthy for the body than rigorous exercise. 

Maybe, but if you look at the Dr. Levine protocol, they recommend getting your HR waaay up there (I think it is 145+ bpm) after many months of training. I was definitely at that point of training for awhile. 

I wish there were some objective biomarker of whether I'm overdoing it or not. I looked into HR variability at one point; I even went to see a researcher at a local University. But she told me: there's no consensus on HR variability and what it means. (weird twist: AFTER telling me to ignore HR variability because it's scientifically unsubstantiated she went on to tell me that I had a traumatic birth and will need to undergo 'rebirth' therapy to recover from my condition. Super-weird, disappointing experience with a top-tier research University)

True to form: I was insomniac last night after my run. Today I have rubber leg syndrome. 

This condition is so freaking weird.

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Wintersown

I am glad to hear you're doing well on mestinon! It has been helping me too. Please keep us posted as to whether you find your benefits at your current dose taper off.

Did your doctor say anything about potentially raising the dose? I am curious about other people's experiences - I think my doctor said we could titrate up, but I lost my insurance because my work contract ended. I have a new work contract with the federal government, but we are furloughed for the shutdown. I can't get anymore medical attention until the shutdown ends.

So, I am taking 90 mg. of time-released mestinon 1X daily. I suspect I need to raise my dose. I could double my dose, but then I'd only have enough mestinon for about another 32 days.

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Just shy of three years ago I suffered an accident where I was knocked off a ladder onto my back from a height of about ten feet. I was so badly bunged up that two plus months had to pass before I could even begin to lie down flat. (I had to sleep sitting up.) Prior to the accident, I felt like I had my POTS/dysautonomia more or less under control 24/7. I did still have to deal with some fairly regular gut issues and the occasional weird vision "thing" but, for the most part, I was feeling if not cured pretty much over the worst of it. Now, I've exercised and been physically active my whole life. I've had a regular yoga and Qigung practice. I studied martial arts and reached black belt status. I took miles long hikes with my dogs in the mountains and up the nearby canyons. But two plus months sitting around on my backside doing nothing and all that changed. The POTS came back (hit back at me) like a hurricane. I no longer could take my pups on long hikes. In fact, just a basic walk around the block became torture. (And not due to any injuries I suffered in the fall. Those all, eventually, healed just fine.) I managed to stick with the yoga and YQi but only because I was able to adapt what I did to the limits imposed upon me by the resurgent POTS. My weird vision issues (thought by my neurologist to be a result of a different form of dysautonomia) not only returned but got much worse. A few months passed. I slogged my way through a full workup/health exam including an extensive cardiac stress test. All was fine, my cardiologist assured me. It was time I got back on my bike. Ah, there it is! What to do when even walking on a treadmill (fully upright) can trigger an episode or attack? Start riding a (recumbent) exercise bike. Take gravity (part ways) out of the equation and get the muscles going and the blood flowing again and get better. Now, I'm still not all the way back to where I was before the fall. Mountain hikes may still be a ways away, but I can at least ride a standard upright bike (for up to an hour a day) without issue. My yoga and YQi practice isn't what it was before, but I'm good with it, I like the way it has evolved. The point of all this? I have no doubt that - for me - daily, regular exercise is and has been a true game changer. I feel better when I am able to exercise regularly. I am better able to - if not control - influence how my own particular form of dysautonomia affects me. I still have to be careful not to over do it, lest I crash. I keep regular notes on my hydration, salt and other electrolyte levels. I constantly monitor both my pulse and my O2 sat levels and adjust my levels of work (and movement) accordingly. 

The point of all this? I'm wondering, what if you were to switch off by - for example - riding a recumbent bike on day 1 and then running on day 2 and then focusing on your recovery (via flexibility and low intensity movements) on day 3? But then I re-read your post and realized, you've already thought of that. Which leads me back to square one. It does seem that exercise helps you, in much the same way it does me, but that too much of the good thing sets you back. And there it is. The eternal search for the happy medium.

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I'm not sure that intense exercise like marathon training is included in any of the exercise protocols for dysautonomia.  Most of the ones I've read involve gradually building up with moderate exercise in a reclined position - things like recumbent bikes and swimming.

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On 1/5/2019 at 4:05 PM, green said:

Wintersown

I am glad to hear you're doing well on mestinon! It has been helping me too. Please keep us posted as to whether you find your benefits at your current dose taper off.

Did your doctor say anything about potentially raising the dose? I am curious about other people's experiences - I think my doctor said we could titrate up, but I lost my insurance because my work contract ended. I have a new work contract with the federal government, but we are furloughed for the shutdown. I can't get anymore medical attention until the shutdown ends.

So, I am taking 90 mg. of time-released mestinon 1X daily. I suspect I need to raise my dose. I could double my dose, but then I'd only have enough mestinon for about another 32 days.

So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to stop.

 

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5 hours ago, WinterSown said:

So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to stop.

 

I also (often) have sometimes intolerable leg pains at night. They're usually concentrated in and about my feet and ankles though, on occasion, they'll drift up higher. If I go straight to bed (without bathing) and still have on the compression sleeves and/or socks I've worn that day (*), the pain is usually worse. (In fact, last night it alternately felt like I was being stabbed and then set fire to). Sometimes it feels like the dysautonomia is punishing me for trying to circumvent its effectiveness. (I'm joking, but still...) I don't take any POTS specific meds, by the way. I did, once upon a time, but they only made me feel worse.

(*) Actually, have just taken them off as I never wear them to bed.

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17 minutes ago, ScottS said:

I also (often) have sometimes intolerable leg pains at night. They're usually concentrated in and about my feet and ankles though, on occasion, they'll drift up higher. If I go straight to bed (without bathing) and still have on the compression sleeves and/or socks I've worn that day (*), the pain is usually worse. (In fact, last night it alternately felt like I was being stabbed and then set fire to). Sometimes it feels like the dysautonomia is punishing me for trying to circumvent its effectiveness. (I'm joking, but still...) I don't take any POTS specific meds, by the way. I did, once upon a time, but they only made me feel worse.

(*) Actually, have just taken them off as I never wear them to bed.

I don't wear my socks to bed, I overheat and that makes me worse. I do wear compression socks in the winter outside--I'm about to walk the dogs so I will wear them tonight as they are still kneehighs and it's below 30 outside, but in the house or in a heated building I just melt into a sweatbomb and then I faint.  Plain jane aspirins works as good as anything when my legs hurt but pleh. I've tried wearing compression socks at PT but I sweat like no tomorrow. If my legs get very painful there, often from some of the balance work I do, then I get on one of the bikes and ride like the wind without resistance--it drives the pain out.

 

 

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>So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I> >seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. >I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to >stop.

I had some strange pains in my body in the first two weeks on mestinon. The main side-effect I have is tension in my throat, loose bowels, abdominal cramping and some light-headedness that is somehow, but indescribably, different from the light-headedness I experience as part of POTS. 

 

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Hello All,

I actually did OK. In the past six days I've exercised every day. I ran Friday, Sunday, Tuesday. I lifted weights at the gym on the other days. I can't do lower body weight lifting because of a leg injury.

I'm feeling run down today, and I've felt run down in the past few days, but I also noticed that I've been pretty productive. I am going to take tomorrow off though - six days in a row straight exercise is too much. I'll take a break tomorrow and then run Friday morning again. Thank you for the advice and support!

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I am happy that you are able to be that active and that it makes you feel better. 

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11 hours ago, green said:

I am going to take tomorrow off though - six days in a row straight exercise is too much. I'll take a break tomorrow and then run Friday morning again. Thank you for the advice and support!

Good idea.  Even physiologically normal people and elite athletes take a day off.  It seems to me that you are working out the correct dosage of exercise (not too much, not too little).  Also, congratulations on getting in your run consistently this week.  

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