Teen w/ orthostatic hypotension

[kkrylee]

My 16 yr old daughter has had numerous symptoms since Oct 4th, 2007:  

Continuous headache at base of skull,
constant nausea,
transient vision loss,
numbness/tingling in face,
orthostatic hypotension,
breast adenomas,
5 possible absence seizures,
dizziness, etc.  

EVERY test has been done and she has seen 2 Neuros, 2 Endos, Cardiologist, Internal Med, Opthamologist & GP.  All test negative except:

tilt table showed orthostatic hypotension,
once had positive babinski response by Neuro but weeks later negative,
ACTH level high but she is very very thin,
prolactin slightly high.  
No migraine meds have worked, only increases the head pain.

Is it possible that her only problem is the Orthostatic Hypotension?  Could it cause these issues?

We did put her on high salt diet, lots of fluids, and good meals.  It helped slightly but symptoms remained.

Her blood pressure constantly fluctuates throughout the day anywhere between 121/80 to 90/44.  It is most often 100/74 or lower.  She has a heart murmur but otherwise heart fine.    The transient vision loss (10-20 X's day) began 4 yrs ago.  Everything else began on Oct 4th and has remained steady despite medications or diets.

[PlateletGal]

Have they done an MRI of your daughter's brain ?

[rbird]

i have lots of sympathy for what you are going through.  i have been having similar problems with my daughter about the same amount of time.  
some things for you to consider.  your daughter's symptoms sound a lot like Chiari malformation.  this is one of those brain conditions that the specialists argue about.  some Chiari malformations can be very subtle and can only be picked up by a neurologist who is specifically looking for it.  you  might try to research that.  good luck. rbird

[kkrylee]

I thought it was just another symptom of something, but she has been tested beyond the norm.  Every possible blood test, multiple MRI's, MRA's, spinal tap, EEG's, EKG, Echocardiogram, Eye exams including field vision testing, Lyme western blot, heavy metals, plus.  The new endo looked at her tiny hourglass figure and ruled out anything that would be related to ACTH or cortisol.  He said she could not have that shape and had Addison's or Cushing's, etc.  Her appetite is normal for a teen.  She eats small portions and probably a bit less than most teens but normal.  All is fine except the ACTH (high) and the orthostatic hypotension.

She also has (probably unrelated) a heightened sense of smell and has highly flexible joints but not where they pop out just where her fingers can do strange moves.

[mandymoo]

Her symptoms could be mostly related to orthostatic hypotention/dysautonomia, but I think it's more likely that this is just another symptom.  Has she had a cortisol test?  Has Addison's Disease been considered?  How is her appetite?