What could be causing these symptoms?

[k2kooch]

My 15 year old daughter has been having collapsing episodes the past 2 months. They have occurred as frequently as 3 times in 24 hours or as long as one every 10 days. She gets lightheaded, collapses (while maintaining consciousness), is unable to speak for 30 seconds-1 minute (but understands what people are saying), and has right arm spasms/tremors lasting anywhere from 2-10 hours. Several people have commented that she looks "empty headed" or like she is sleepwalking, right before she collapses. She has seen a pediatric neurologist, a cardiologist, and an endocrinologist. She was monitored for 5 days on an EEG, and an episode was caught, and it is not epilepsy. She has had EEGs, EKGs,an MRI, MRA, and numerous blood work, all showing nothing abnormal. Her blood pressure tends to be on the low side. The doctors and all of us are very frustrated and don't know what else to do to help her. They started her on Medodrine, and she still had an episode, but not as frequently as before. Any ideas on what might be causing these symptoms? These episodes are scary to her and are very disruptive to her daily living. She is a happy girl with lots of friends and a good student. She doesn't appear to be stressed out. Please help! Thank you.

[m326]

Sorry I missed your comment earlier! Tremors can occur with POTS, sometimes even seizures/convulsions from low blood pressure.  Lack of speech is not a common symptom of POTS.  Does the lack of speech occur in a sort of "pre-syncope" (almost fainted) sort of dazed state?  If lack of speech occurs and the rest of the body seems alert, that seems abnormal to me...but otherwise, it could be because of POTS.  You mentioned that you got everything checked out, that's definitely reassuring.  Did you have her tested for POTS?

[selmaS]

HI...I have a friend that has POTS and she has other neruological conditions along with it...so it is possible that the laack of speech and arm tremors could be a result of another condition.
U mentioned ur daughter had a MRI...was it of her brain and w/wo contrast?.....sometimes things can b overlooked.....have a NS review her films.
m326 gave u some good info......I hope u find a dx for ur daughter....
please keep us posted.
Godspeed
"selma"

[k2kooch]

Thanks so much for your informative comments. The doctors thought it might be POTS, however they thought the lack of speech combined with the 3-10 hour right arm spasms/tremors were not symptoms of this disorder. So have you heard of these symptoms with POTS? The Midodrine  appears to be helping, as she has had only one episode in the past few weeks since she started this medication. THanks again!

[m326]

I would look into dysautonomia, either Postural Orthostatic Tachycardia Syndrome (POTS) or Neurocardiogenic Syncope (NCS).  Both are forms of dysautonomia.  Dysautonomia is the malfunction of the autonomic nervous system and can cause all the symptoms you have mentioned above.  All the tests you mentioned above come out normal with both disorders.  Testing to diagnose POTS or NCS involve tilt table testing, blood pressure/pulse measurements.  As awareness of dysautonomia increases, people are realizing that it is more common than previously thought and for some reason happens most frequently in teenage girls. Dysautonomia can be disabling, but is not life-threatening.  Episodes though can be scary, especially at first.  The good news is that many kids will improve with time and many will "recover."  Medications used to treat dysautonomia include Midodrine which you mentioned above as well.  She can try increasing her salt and fluid intake and see if that helps. More information on these conditions can be found at dynakids.org or dinet.org.