Thanks for your emails! I am amazed at my progress too! I feel like a TV pitchman, "I went from standing for seven minutes to over an hour...in just a week!" I'm not an expert, but this is how it was explained to me.
Stand against a wall for as long as you can, twice a day, every day. Do a little more each time. Being upright is often uncomfortable, if not totally miserable, for people with dysautonomia. But simply standing trains your heart and all of your body systems to recondition, to "reset."
For the first few tries, I stood against a wall until my symptoms became, shall we say, unbearable. But hang in there! It got a lot easier once I surpassed 20 minutes. I'm still tired by the end, but it's more due to back pain than fatigue. Yay! I'm able to accomplish more now during my tilt-trainings... keeping my mind and body busy doing chores. Don't forget to stay standing! :)
Check out this study: [Did I mention my mom deserves a degree in medical research?]
Tilt training: a new treatment for recurrent neurocardiogenic syncope and severe orthostatic intolerance.
Ector H, Reybrouck T, Heidbüchel H, Gewillig M, Van de Werf F.Department of Cardiology, University Hospital Gasthuisberg, Leuven, Belgium. Hugo.Ector@med.kuleuven.ac.be
Medical treatment of neurocardiogenic syncope is insufficient in many cases. We have observed a therapeutic effect of repeated head-up tilt testing. Therefore, we have started a program of tilt training for heavily symptomatic patients. After hospital admission, they were tilted daily (60 degrees inclination) until syncope, or until a duration=20 of 45-90 minutes (90 sessions in 13 patients). The mean tilt tolerance, at the first diagnostic head-up tilt table test, was 22.3 minutes (st. dev. 10.9).
Before hospital discharge, 12/13 patients could sustain the full duration of tilt table testing without any symptom. In one patient syncope persisted. The patients were instructed to continue a program of daily tilt training at home, by standing against a wall for 30 minutes, one or two times per day. This resulted in a complete disappearance of syncope in all 13 patients.
**Orthostatic intolerance and the excessive autonomic reflex activity of neurocardiogenic syncope can be remedied by a program of continued tilt training, without the administration of drugs.
Cure OI without drugs?! As they say in the old country, AMAZINGK!
Before hospital discharge, 12/13 patients could sustain the full duration of tilt table testing without any symptom. In one patient syncope persisted. The patients were instructed to continue a program of daily tilt training at home, by standing against a wall for 30 minutes, one or two times per day. This resulted in a complete disappearance of syncope in all 13 patients.
**Orthostatic intolerance and the excessive autonomic reflex activity of neurocardiogenic syncope can be remedied by a program of continued tilt training, without the administration of drugs.
Cure OI without drugs?! As they say in the old country, AMAZINGK!
the cheese stands alone, my friends.
et :)
ps. lol. Today: Great morning, stood for an hour and 35 minutes! Woo! Afternoon was rough. Chest pain and fatigue. Everything's an experiment with the meds. Today we titrated up the Midodrine to 7.5 mg 3x/day. Also switched up the beta blockers -- 25 mg in the morning, 12.5 at noon and 12.5 in the afternoon, instead of taking half at night and half in the morning. We'll wait a few days and see if it helps improve my afternoons.
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"Cure OI without drugs?! As they say in the old country, AMAZINGK!"
ReplyDeleteI agree =)
"Great morning, stood for an hour and 35 minutes!"
Woah, is there an upper limit to this? Pretty soon you'll be standing against that wall all day long! =)
Id be surprised if tilt training is the best way. In some forms of POTS and orthostatic intolerance overall tolerance to quiet standing and improvement of the skeletal muscle pump can occur with exercise that increases the heart rate or increases muscle mass to the lower vasculature.
ReplyDeleteOh and raynauds phenomenon and POTS are quite similar, infact raynauds is a symptom of POTS - a peripheral vasospasm.
Sorry I got to mention that exercise will feel like it makes you worse at the time and for the next few days, but eventually it is the best way to improve most forms of POTS.
ReplyDeleteA high protein low carbs diet seems to help some patients as well.
I dont really think that medications are always helpful; most are only partially helpful at best, most have side effects which POTS patients seem significantly sensitive to, and NONE cure or improve the condition in the long term. Whereas exercise does improve the overall condition.
Can this be done if one has POTS and Orthostatic Hypotension (drop in blood pressure when standing?) Actually, quite a few POTS patient have a drop in BP when standing as opposed to a rise or no change.
ReplyDelete