marthamoss

Hi, Julie, I'm a little confused about how to reply to posts- not sure if I'm hitting the right reply button. anyway, it's very helpful to hear about other teenage boy's experiences with POTS. Alex tried IVIG out of desperation a few months ago when he seemed to be going downhill and we had tried everything else. He did try Florinef early on- if I remember correctly, he first started Inderal which helped his tachycardia but dropped his blood pressure- then his doctor added florinef to try to counteract the blood pressure drop. Support stockings (20-30 waist high as well as compression sleeves on his arms) have helped Alex the most and he wears them all day. Currently he is on Metoprolol for the past few wks which seems to be very good at controlling his heart rate w/o dropping his pressure. He tried a tiny dose of Midodrine but had very severe side effects. He got sick all of a sudden in the middle of a school day in october of his junior yr of high school- not sure what caused it. but in retrospect, he was unusually fatigued for about 6 mo prior to that. He was able to keep up with classes with home tutoring through about 3/4 of his junior year, but then got worse in June and hasn't done any school work since then. We're not sure what we will do about school- his class and all his friends are graduating this year. I hear so many good stories about Florinef- we may try that one again. How old is Mack? Excuse my ignorance, but what is NMH? Best, Martha

Hi, Julie, thanks for your response. Alex has been extensively worked up here in Boston and we also had a wk long visit to the Mayo recently. He doesn't seem to have any other diagnoses at this point except POTS. At first, we were trying medicines like crazy, probably too quickly and not giving them enough chance to work. He tried Midodrine, Inderal, Paxil, Effexor, Mestinon, Provigil,antidiuretic hormone and even had two courses of IVIG. Currently, he is on Adderal which helps a little, Metoprolol which has really been keeping his heart rate down, and Ambien because he has very bad insomnia. He has been sick for a little over a year. Dr Fischer at Mayo stressed the need to exercise and push through the postexercise fatigue, and I think taking that advice to heart has made him ever so slightly better. We stored the wheelchair away two days ago which was a big step! How is your son doing and what has been helpful to him? Martha

There was a thread in August about "running out of gas". My 17 yr old son has had POTS for the past year. He manages his day by what he calls "dying" when he holds his arms and legs completely immobilized. they are not really paralyzed because if he has to, he can move them, but if he tries to move them when they are like that, he gets chest pain and shortness of breath. His arms and legs also feel stiff. He goes all day with alternating hours, one hour moving around and one hour totally immobile. I guess it's his way of recharging because if he moves around prematurely, he sets himself back with extreme fatigue. We have just been to Mayo to see Dr Fischer,and I was hoping he had seen someone with similar symptoms, but he hadn't. Just wondering if anyone has experienced anything like this- kind of a pseudoparalysis?

My 17 year old son has POTS and most of his symptoms are classic. He has one unusual symptom that doesn't seem to be described anywhere. His arms go "dead" several times during the day- this usually lasts about an hour, and during that time,both of his arms are weak and stiff, sometimes cold. He is able to move them, but only with great effort that results in shortness of breath and chest pain, so he keeps them still until the episode has resolved. Does anyone else have this symptom??