What tests should be used to find out what the problem is?

When my daughter was five she fell and hit the back of her head hard on a cement floor.  This was after receiving an injection for strep throat. The doctor had a hard time getting her to respond. She didn't know who I was for a short time and was hospitalized overnight.  She seemed fine after that but has had a few headaches growing up that were more severe that my other two children experienced.  She is 16 years old now.  She complains at times of migraine headaches and pain in her neck, shoulder, and joints.  When she was younger she had several bouts with strep throat but is pretty healthy for the most part. She has fainted five or six times in the last three years. When she comes to she hyperventilates. She breathes strangely.Her hands and arms stiffen up and I think the rest of her body does too. It's almost seizurelike activity.  She does not respond to slapping her face or pinching her to try to wake her up. Then she is in a sleeplike state for an hour or more.  She says she can hear us talk to her but she is unable to respond. She tries to open her eyes but can't  Before she passes out she sees spots. Her Primary Care Physician said she may have NMS or NCS where the heart rate and blood pressure don't work together as they should. She passed out yesterday, face down in the snow and I called an ambulance to take her to the E.R.  The paramedic on the ambulance said she didn't even flinch when he started the I V, she was out of it.  She said later she didn't know she had the IV until she woke up all the way. The E.R. doctor said she may have psychiatric problems and need to be on some medicine for depression like Klonipin (klonopin). I have taken her to a neurologist who scheduled a tilt table test for next month.  She passed out in October and now in February. I wondered what you think the problem is?  Everytime she faints we go to the E.R.  They do blood work, EEG or EKG (not sure which) and put her on a heart moniter, and test her blood pressure.  Everything comes back normal. I am afraid that something is seriously wrong. She is in bed today and says she aches all over and has a headache so bad she is crying with it.  She is a well behaved child and a good student, high honor roll. She is well liked by her teachers and peers. She says if she is under stress she doesn't know she is. She takes a birth control pill for bad cramps and aleve for headaches. The ER doctor acted like he thought she was faking and needed to see a psychiatrist.  I don't believe she was. I'm worried. Even more since she is starting to learn to drive.  I know how helpless I felt yesterday when I was the only one there and didn't know what to do.  I need to know what kind of tests she should take to find out what is wrong?  Should she take the Klonipin (klonopin) .05 mg. ?The E.R. doctor said to take it but the neurologist said to wait until after the tilt table test before starting any new medicine. So I don't know what is best for her. I'm not absolutely positive about the other times she passed out, but yesterday it was that time of the month.  She was wearing a femine hygiene product that is inserted.  Could this have been a reason for her passing out? Do you think I should take her to a neurologist, cardialogist or psychiatrist? Thank you for any answers as I am desperate to find out what is wrong.

[Heiferly]

Forms of dysautonomia such as vasovagal syncope and POTS (postural orthostatic tachycardia syndrome) are FREQUENTLY misdiagnosed initially as psychiatric in nature and it can take *years* to get a proper diagnosis.  The tilt table test is the correct test to get the right diagnosis if some form of dysautonomia is causing the fainting.  Klonopin is an anti-anxiety medication prescribed generally for panic attacks, not depression, or sometimes as a sleep aid.  It could possibly skew the outcome of the tilt table test and mess up your chance of getting a proper diagnosis if that's what the neurologist is warning against; I would go with him since he has more expertise in the field over an ER doc who has a more generalized education.  

The tilt table test (you'll often see it as TTT as you start reading more on this subject) is a good first step.  You also want to connect with a cardiologist and rule out cardiac issues.  (Also, cardiologists can be helpful in management of syncope-causing disorders as this falls under their expertise as well as neurology.)  It's not at all uncommon that everything comes back "normal" when they run tests in the ER--they've already missed the "event."  Holter monitors can be worn for several days to get a more long-term view of cardiac activity in hopes of "catching" any abnormality; an ILR is a device implanted shallowly in the chest in outpatient surgery and worn for up to two years (or more, depending largely on battery life) that is meant to record cardiac activity during the fainting events or any abnormalities between them.  Other tests include echocardiograms, stress echos, and EP studies.  How extensive/invasive testing/monitoring gets most likely depends on what your doctor thinks is best in your particular situation.  

As for her fainting during her menses, it is known that some woman have worsening symptoms of POTS during their menstrual period, or may only be symptomatic at that time.  This may also be true of vasovagal syncope (NCS), I'm not sure.

I hope this information helps lead you in the right direction a little.  I'd be happy to answer any other questions.  If you're looking for where to start with researching some of this on your own (particularly if you get a diagnosis from the TTT), some Dr. Blair Grubb's medical journal articles are available for free on the internet.  He is a renowned expert on syncope, and also has some books published on the subject (available on amazon), one of which is written in terms a layman can understand.

Good luck!!

[Heiferly]

I should have mentioned...

For those women with POTS who do have a particularly rough time of it with their menstrual cycle, many work with their doctors to reduce the number of periods they have per year, or eliminate them entirely via hormones.  Most I've heard are on the Depo-Provera shot, but there are other alternatives in manipulating this with Seasonale and some other hormones.  If this turns out to be the case, it's something you may want to consider ... certainly not for everyone, but helpful for some.

[Lee9709]

Go with what you feel in your heart.  My son was fianally diagnoised with NCS after being treated for Epilepsy for 3 years.  I kept questioning his Dr who is a pediatric Neurologist.  None of the epileptic meds helped, and actually worsened his condition.  He started with what only looked like petite mal seizures, then Dr started him on keppra along with lamictal, ethosuximide and he started having gran mal seizure. We even had gone to the surgery consult for Vagus Nerve Stimulator implant, but I begin searching on line and found out about heart conditions that could cause seizures which had never been mentioned to me. I took him locally to his pediatrician, and got a referral for cardiac work up and the Dr right away said this is what I think it is NCS.  He was started on Florinef and increased his fluids and 2 gatoraids daily and became a little better, then I decided to wean him off of keppra, because the Neuro didn,t want to, but my son felt like keppra was making him worse.  We weaned him off and instantly no more gran mal seizures.  he still continues to have 2-3 petite mal a day, but he was having 7-10 daily on all the meds.Cardiologist just started him atenolol this past week and it has tremendously hepled with the chronic fatigue.  He is sixteen now and it has been a hairy 3 years.  Needless to say the neuro Dr said surgery intervention is not needed  now.