Dysautonomia (Autonomic Dysfunction) Community
How to get a teen to manage their orthostatic intolerance?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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How to get a teen to manage their orthostatic intolerance?

My 16 year old daughter started experiencing fatigue 2 years ago, then headaches (constant) and after multiple visits to multiple specialists, was finally diagnosed with POTs a year ago (by a Dr who didn't think a tilt test was necessary (big mistake), and I didn't know enough to demand one).  He prescribed salt for 9 months, which didn't work, and when she finally got a tilt test (Feb '16) and had a severe reaction.   He prescribed Midochrone & salt.

The headache is a bit better, but the fatigue is not - hence my question: when she feels utterly exhausted, the last thing she wants to do is to get up and exercise.   I've heard a lot about the Mayo "POTs boot camp" and that one of the key elements is to get kids to take responsibility for themselves and for parents to stop nagging.  I would love for that to happen.

The challenge is: what to do when she feels utterly exhausted and wants to collapse?   A pattern has emerged:  after a week of school, she is flattened & would like to sleep in and rest for much of the day.    When I encourage her to get up and move, she says that she tried and felt faint.   She looks grey & exhausted.  She isn't hooked up to screens and is missing out on a lot of activities she would have loved to do.  She just doesn't have the energy.

How can one teach a teen when it is worth "pushing past" one's limits and when to "listen to one's body"?  Seems like a real conundrum, and very hard as a parent to watch this and wonder.  

The doctor suggested cognitive behavioral therapy, so she has started this, but she doesn't find it helpful.

How can I help her to help herself?

Please share practical suggestions.
Avatar m tn
When I feel extreme exhaustion I take zinc and being a girl she may be anemic , we can be unwell with other things and anemia is one of them ,lots of fresh fruit and loads of salad stuff , don't exercise until she is less tired .
Getting out of bed is good, getting out the chair better , a walk much better .
Take it slowly once she feels less tired then do more , don't believe in boot camp when you feel ill !
Get bloods checked for anemia and tell her to take care.
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