Exercise????

[jpjd59]

My 23 year old daughter has POTS (diagnosed in November 2011). The doctor is sending her to a cardiac rehab program (she is starting next week). The physical therapist said that she has never dealt with a POTS patient but she felt she would be able to help. Does anyone have any suggestions on exercise programs that they have done and how slowly they started so that it didn't make their symptoms worse.

[Anoj]

i was in physical therapy for 3 months. the staff didn't know anything about dysautonomia; i had to teach them. they just had me do light weight-lifting and ride an excercise bike. the more things she can do sitting the better. there is definitely a balance. if i overdid it, i felt worse. but, when i engaged in regular, light exercise, i felt TONS better. the key for me was having light, regular exercise. by light i mean i rode a bike for 6-8 minutes, then did some rotations with different machines with the weight set to a moderate setting, then rode the bike again. i felt the worst during the first week. by the second week, i noticed that i had a lot more energy for a few hours after the sessions.

looking back, i think i felt better then than i do now. that actually prompted me to renew and go back for PT again. it's been about a year since i went the first time.

[jangle]

Yes, I can honestly say exercise has improved me substantially. My main symptom was lightheadedness, my gastro issues resolved a few years ago by themselves.

Basically what I did was I started jogging and I jogged as far as I could reasonably go. For the first day this ended up being about one minute.

Then the next day I jogged at the same location and tried to beat that distance by as far as I could go.

I basically repeated this process, always trying to increase the distance I was running.

After a few weeks I got to a point where I could jog fairly far.

Right now I'm about 9 weeks into my jogging program. I'm jogging close to 6 miles in 50 minutes.

I'm trying to follow this study here:http://hyper.ahajournals.org/content/45/3/391.full?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=stroke&searchid=1&FIRSTINDEX=60&resourcetype=HWFIG

Now if your daughter is passing out or having extreme difficulties I would definitely leave that to the discretion of the doctor on how to proceed. You could also look at the Levine protocol which was specifically designed for starting POTS patients off who're more incapacitated.

[kjmom]

Swimming has been the best and only relief my DD gets almost complete relief. Once she is submerged in the pool, it counteracts gravity and blood pooling so she starts to act like herself again. It also keeps these patients cool so you don't get overheated while working out.

[jlmahon]

I started walking and bicycling in a pool. I worked up to jogging. Water is also my favorite place. My only problem is that sometimes I overdo it and end up feeling worse when I get out of the water. Start slow and build up gradually. If only I'd listen to my own advice