DADofPotsSon

Son #2 is in his second year at college, and during his first year, nearly everytime at finals he ended up in the ER, due to his POTS. A couple of weeks ago he came home for the weekend after an exam, it took him til 400 am the next morning before he could go to sleep, the adrenaline had him wound up tight! His tachy is the worst at these times.

Son #2 broke his right ring finger in a fall at college, took him in for pre-op the day before and reminded the Dr's and or Surgeons that he has POTS. They said "we will take extra precautions" and I must say they did. They provided him with special instructions of things to do the day of surgery, at surgery prep they had extra IV's (noticed extra soduim IV bag), and they also had releases from his Cardio, Neuro, Cleveland Clinic and his GP. The surgeon said in the last 6 months he had two POTS patients in late teens or early 20's with sports injuries and one from a fall. I guess in a College town this can be expected. I was impressed with the care at this hospital. Dad of a POTS son

My son drinks two propel's per day, he adds a 1/4 teaspoon of sea salt to each bottle and shakes, then drinks one first thing in the am and the other later in the day. He will drink additional ones if need for work outs or sports. He is tired of gatorade. This is a supplement to all the water he drinks plus heavy salting of food. Bill

Living in Wood County, OH. Well my #2 son age 19 is orthostatic intolerant has NCS and POTS and my #1 son age 26 is Orthostatic Intolerant, my Dad age 79 also is O.I. too and has been for 61+ years. #2 son was dx: NCS by St. Vincent hospital in Toledo, and NCS, POTS by Dr. Fouad at the Cleveland Clinic. His POTS appeared about 6 months after a Strep virus.

Thanks for all your comments, yes it is good to see him moving about again, especially since all the events of the last year. Someone had a question on hockey, and yes he was a high school goalie, but has not played hockey for over a year. Just recently released to play again. The biggest problem was he being misdiagnosed as epileptic seizures for several months, though all the MRI, CAT Scans, ECG's EEG's showed non-diagnostic or normal. I kept questioning the Tachy arrhythmias, nausea, lightheadedness, palpitations and the Neuro kept insisting that it was the seizure that was causing it. His BP was usually 80/47 or lower, and they insited that was ok as he was athletic! Once when admitted to the ER he had a BP of 72/37. Eventually they had so much antiepileptic drugs in him he could not remember how to tie his shoes, yet he continued to have the seizures, infact much more frequent, six in one day! Thats when I found this site! I copied all the information I could find to help about NCS. Shopped for new doctors, found one's that would listen, the new cardio.. sent him to St. V's in Toledo and they did the HUTT and confirmed NCS and suspected POTS, and then I insisted he needed to be sent to Cleveland Clinic, which they confirmed the POTS. CC weaned him off the antiepileptic drugs. CC put him on a low dose of midrodine 1/2hr before exiting bed, Toprol, lots of salt and a min. of 2 liters of H2o, plus sit ups, and thigh muscle strengthing excersises. I believe they want a blood pooling test yet? Over a period of a couple of nights i scanned many post and made many notes to help me in proving my point. This dinet web site and the forum helped me in my presentation to the physicians and to convince them to think outside the box. He has an appointment in late Nov. with Grubbs, and I am looking forward to this myself. Again, this is a great site! Bill

About a year ago #2 son began have seizures, Dr's treated as Epileptic Seizures with no results, the more meds the more frequent they got, then in January while in ER he had a convulsive seizure but just before his HR went to 175. Not happy with seizure DX I went searching for information and found this site. With the help of the information on this site and then demanding the PCP send us to Cleveland Clinic, we got his DX: NCS and POTS. They put him on midrodine, and toprol. He is back playing hockey, getting ready to back to college next week and running around like any other 19 yr old. Thanks for all your helpful posting Bill