Feeling Great After Extended Exercise

[SeattleRain]

I have never felt this "normal" since before my "POTS" onset.

A couple weeks ago, I went to the mall for Christmas shopping and I spent a good 7 hours just walking around the entire time. The majority of the 7 hours was spent walking at a fast pace. Not much time was spent sitting on a bench or looking at products.

The experience was horrible. My HR was between 130 - 170 the entire time, accompanied by light headedness and major brain fog.

When I got home, my HR did not settle down and my legs felt like they'd been through a beating.

A couple days later, I went back and did it again. After another couple days, I again went back. I went maybe 4 times before taking a 4 day break then this Friday, Saturday, Sunday and today I went back and again walked around for 7 - 8 hours.

This weekend and today has been wonderful. Palpitations have been minimal (no palpitations today, knock on wood!) - which is down from maybe 5 - 10 per day. When I stand up, I don't have horrible heart throbbing and feeling like there's not enough blood going in. Brain fog has been greatly alleviated and cognitive function seems to have improved.

I think building up my leg muscles may have had something to do with it - to help push the blood back up to my heart. The first few times I went, my calves were twitching/spasming each night like crazy.

Other than that, I think the prolonged exercising really helped my cardiovascular system. My HR while walking around today was much lower - in the 80's probably - which is incredible.

There seems to be a big difference (for me at least) between short duration exercise (30 - 45 minutes) and prolonged extended exercise (hours and hours).

I'm not suggesting that other people do this - it's highly anecdotal but nonetheless wanted to share. I'm actually hoping my symptoms come back because on Jan. 14th I see the TTT doctor and if I'm feeling like this everything may come back normal!

[SeattleRain]

Just to clarify: I would walk at a fast pace for maybe 5 minutes. A slower pace (normal walking speed) for another 5 minutes. Maybe stand around for a couple minutes. Then repeat. Out of the 7 hours, maybe 30 - 45 minutes was spent sitting down somewhere, usually for only 3 - 5 minutes at a time before getting up and walking around again.

Also, I couldn't find the topic to link to but another member here who I believe was un-diagnosed (or at least symptom free) described their constant exercise as critical to their recovery. If anyone knows where this topic is, I'd like to read it again.

And a p.s. - Sleep has been amazing. Falling to sleep/night time is so much easier. Sleep quality is twice as good, and waking up has been symptom free which has been a huge, huge relief.

[Relax86]

I too saw a huge improvement with exercise. I weight trained with light weights and built up from there. I added light cardio (15min) on treadmill. I feel much better overall; my best days are those that follow the treadmill. When I skip the treadmill too often I have "off" days.

[misstraci]

Awesome, Seattle, I'm happy that you saw improvement with all the movement/exercise.

[jangle]

Seattle, the person you're referring to was TXPOTS - she began with volume expanders and then began an exercise regiment where she slowly increased her jogging distance and eventually added additional exercises such as weight lifting and the stair master. It took her 18 months of this regiment before she was finally un-diagnosed with POTS and described as symptom free. I spoke with her personally and she stated the last type of exercise she added before become symptom free was the stair master.

Earlier this year I began an endurance exercise regiment for about 3 months and I was feeling noticeably better, however I had to stop due to life obligations and have only now started running again and adding weight lifting. Exercise training has so many beneficial health impacts it's difficult to attribute which pathway is helping the POTS the most, however it does appear that consistency is key as once you stop exercising, often the POTS returns back to its usual intensity suggesting a hormonal etiology.

[SeattleRain]

Seattle, the person you're referring to was TXPOTS - she began with volume expanders and then began an exercise regiment where she slowly increased her jogging distance and eventually added additional exercises such as weight lifting and the stair master. It took her 18 months of this regiment before she was finally un-diagnosed with POTS and described as symptom free. I spoke with her personally and she stated the last type of exercise she added before become symptom free was the stair master.

Earlier this year I began an endurance exercise regiment for about 3 months and I was feeling noticeably better, however I had to stop due to life obligations and have only now started running again and adding weight lifting. Exercise training has so many beneficial health impacts it's difficult to attribute which pathway is helping the POTS the most, however it does appear that consistency is key as once you stop exercising, often the POTS returns back to its usual intensity suggesting a hormonal etiology.

I forgot to respond to this. You were spot on about the symptoms coming back after stopping an exercise routine. I had maybe 5 days of bliss before the palpitations returned, and another 4 - 5 days before the symptoms of standing up returned.

[brethor9]

still doesn't explain the subset of people on this forum who were incredibly active before onset of their symptoms......I know for me personally I ran 1.5 miles 2-3 x week and worked out weight training etc 2 hrs every night......now I have difficulty doing my laundry ....... my crash happened not too long after having surgery....and now knowing I have exercise induced urticaria I have to be very careful. Happy for the people who see success with it though

[futurehope]

Brethor9,

I was one of those people who had been exercising by walking for 1 hour/day when my palpitations began. I stopped everything because of fear, and remained inactive for years.

Then after getting the diagnosis of POTS, I began slowly to exercise again. I am currently exercising as much as possible. I become more POTsy if I have to let up because of illness or whatever.

I now have an MCAS diagnosis as well as POTS. I noticed that when I first began exercising, my MCAS was causing my interstitial cystitis (bladder pain) to return. The exercise was contributing to mast cell degranulation, I guess. But since I do not get anaphylaxis or any other really dangerous response, I continued exercising, and my body adjusted. I can now walk on the treadmill at 3.5 MPH for 1/2 hour, and 3.3 MPH for the second 1/2 hour. I will keep this up because I believe it allows me to enjoy life more because I can participate. It has not cured me, and I really do not expect it to.

I am not telling you to do what I do, as we are all different. I thought I would share my experiences.

[brethor9]

thanks futurehope I have been trying to do a little exercise here and there but have to be careful because I am one of the unlucky ones that has breathing issues and near anaphylaxis episodes especially when doing cardio based exercise. Taking an antihistamine before hand helps a little but the other symptom is the unrelenting nausea I have right after any type of exercise. Feels like I am dying! I kind of have to do short bursts throughout the day before my body realizes what its doing lol ...... I just think it is still so weird how we can go from being completely normal to this???

Bren

[futurehope]

Wow, you have some difficult symptoms to deal with. I imagine it would make it scary to take risks and make yourself worse. It sounds like you need to discuss with your MCAS doctor, and see if he as any suggestions. I certainly do not want to say anything or suggest anything that would make you worse.

Brethor9,

What diagnoses do you have? What is causing the nausea? Are you still in the process of being diagnosed?

[SeattleRain]

You bring up a good point, brethor.

Before my POTS onset, I was doing high intensity interval cardio training along with resistance strength training. Although, I wasn't exercising that day, or even that week - but it was part of my lifestyle for the previous 6 months or so. I had also just got back from Florida, where I walked around in 95 degree weather for hours each day. Nonetheless, exercise has still helped me feel better. If only I had the motivation/determination/energy to get up and exercise every day...

[brethor9]

yeah Seattle I hear you.....I used to love exercise now I pride myself on the days I am able to cook dinner or go grocery shopping

futurehope; I think my specialists are confident they have narrowed down my root causes...... I have been officially diagnosed with MCAS, presumed EDS Type 3, exercise induced urticaria, hot/ cold urticaria, severe secondary dysautonomia, OI/mild POTS, Gastroparesis (these are all likely being caused by the mast cell issues and EDS).....and just recently it is looking like I have some Pre-Cushings symptoms going on thanks to long term use of Florinef.....yikes right?? The nausea is likely a mast cell reaction to the activity.....seems like almost anything can be a trigger

[POTLUCK]

Exercise has had a very positive effect in my case. My original TTT was very clearly diagnostic. I have been treated with B-blocker (Propranolol ER) and been able to taper it to almost none via exercise this year. If I took a TTT on my low dose I would barely meet criteria.- based on poor mans's TTT done at home. A short period where I cannot exercise ( like now as I have the flu ) seems to increase my symptoms again pretty quickly.

This effect does not appear to have anything to do with what type of shape I was in before I got sick. The first night I noticed symptoms was after a 10 mile mountain hike. I was in shape then. I attributed the symptoms to the hike but they worsened as time went on.

It seems like many mechanisms could cause exercise to improve POTS other than prior deconditioning and improvement in Stroke Volume. These do not seem mutually exclusive to me.

Epigenetic up and down regulation have been mentioned on here. Maybe running allows energy into the cell, thus decreasing an abnormal NE/Epi from the body at the cellular level. ( In other words maybe the cell - particularly brain cells - are not getting as much energy as they should so they send a message to increase NE/Epi, but this speeds the heart up to much and makes it overreactive. )