Sunday, May 27, 2012

Tuesday, December 01, 2009 SNeagle asks

Q: Why does pulse double from sitting or lying to standing?

My son fainted at school and EMT's were called in. After a very extensive evaluation they could find nothing wrong other than he was extremely pale (white lips) EKG's normal pulse normal blood ox good ect... They were getting ready to leave him in my care as I had arrived and was ready to take him home when he stood up and lost all color again. I was on one side of him and the EMT on the other we both reach for  him and his pulse was skyrocketing. They had him lay down and relax while they hooked him back up to the EKG. Again normal reading while he lay there. We had him slowly rise to sitting no change. Up standing his heart rate more than doubled and EKG was all over the place. After many many hours in the ER we had more EKGs same results Blood work and IV fluids. The final check of heart rate was 59 while lying down 70 while sitting and 109 when he stood and actually went up to 118 but seemed to stabilize at 109. After about 4 hours he seemed to be calm and relaxed and more stable in his heart rate so they sent us home and called it near Syncope. This has happen many many many times and we still have no idea why. I am afraid that at some point it could be at a time when there is noone around or it could lead to something worse. Is this normal?

Blood sugar is normal and fluid intake was typical for a 14 yr old boy. (definately not enough water but more than enough to keep urine at a pale yellow)

 

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12/ 2/09 12:56pm

How frightening that must have been as a mother! My heart goes out to you*

 

I have been diagnosed with Postural Orthostatic Tachycardia- and my BP does the same thing. Now I am investigating Syncope and Reflex Anoxic Seizures because I have a seizure everytime my BP is taken-

 

My best advise is to try to find a Cardiologist that deals with Syncope/ or Dysautonomia conditions in general. They are not easy to find. You may find help with the group called "STARS" online- if you can't find it email me privately and I'll send you a link. They are one group that might be able to broaden your understanding of this condition.

 

Your son should practice getting up slowly, he should probably try increasing his salt intake if this continues to be a problem- DINET on line is another group for Dsyautonomia conditions, and Syncope ties into many of these conditions. The DINET group is quite large with lots of groups within it, ones for the parents of children with the disorder- and lots of info on possible treatment.

 

If a cardio tells you Sycope or related conditions are not treatable, go elsewhere. It is not curable, but it doesn't have to completely ruin one's life. It iS treatable.

 

For instance, my geneticist suggested I have a saline infusion every two weeks to increase blood volume and to wear compression stockings to increase venous return. Unfortunately, I am just now- 3 years later going to my first POTS specialist- Dr. Karen Friday at Standford. I've heard some good things about her.All of my other doctors - in the state I live in have not wanted to follow her advise. I am much better with the suggestions above though.

 

With reasons to Hope!

somewhere over the rainbow,

zoe.

 

ps. i am by NO means an educated health practitioner, just a fellow sufferer, so take what i have to share with several grains of salt, K? thanks. And all God's best to you~ Wink

 

 

 

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By SNeagle— Last Modified: 12/19/10, First Published: 12/01/09