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.

[MissyJessi]

Hi,
My daughter now 16 has also been suffering for years.  Thy too diagnosed her with a Chiari Malformation among so many other things, including "she needs to see a "shrink". One dr. even wanted to perform surgery. We finally took my daughter last year to Mayo clinic in MN.  After testing they said she did not hage a chiari but she has POTS with deconditioning. She's on medication, 1 gallon of water per day, excessive salt intake and exercise.  
She still suffers from varying symptoms and new ones every day/month.
It takes time, they say.  Some teens are worse than her, some not so and some actually ge better by the time they are in college.  They dont really knoiw.
I could list I'm sure all the same symptoms as your daughter but as you know their are so many.  The research I've done also indicates several other illnesses.  Possibly a trip to Mayo if you can.
Good luck, hope by now you have answers.
If not or if you have more to offer me, please feel free to contact me at ***@****.

[molly0]

What kind of treatment are you on with your Neurologist?  I'm being treated by a Cardiologist.  But my daughter has been seen by both a Neurologist and a Cardiologist.  I'm thinking about taking her back to another Neurologist.  Any idea what kind of treatment differences I can expect?

[DysMom]

sorry I didn't post back--got 1st grandchild, then left on vacation! I was diagnosed at Shands UF w/dysautonomia--non-specific cause, with hyperadrenergic responses. Sudden onset after surgery, but had similar symptoms at least three times before--age 16-18; age 31, after C-section; and once after a bad case of flu. Never treated successfully before. Had been on Toprol and Florinef--no help. Switched to Nadolol for the tachycardia--worst symptoms. See a neurologist now instead of Cardio. Still not back to halfway "normal". My grandmother had this after illnesses, childbirth, etc. Alot of how I try to control symptoms is my own trial and error. Got to go--dizzy now. DysMom

[rbird]

Try the World Arnold Chiari web page.  they have a list of doctors.  Good luck

[kkrylee]

So the big question, has your doctor given you a diagnosis or are you just treating the symptoms?  We still have no diagnosis.  Just Orthostatic Hypotension as another symptom.  I know that her B-12 was normal.  The only meds she takes is Levsin for nausea & over counter pain meds.  We just went to refill the nausea med & we were told that it is discontinued.  It is the only thing that worked for her nausea which she feels is the worst part of all her symptoms.  Migraine & anti depressants either did nothing for her or made the headache worse. And nothing else has been tried since we have no diagnosis.  Her headache has never left her since Oct 4th.

[DysMom]

I just read the later posts--I have the heightened sense of smell, too. My DH (dear husband) says I could solve crimes w/my sense of smell. I'm not sure if it's a curse or a blessing--but I did detect a tiny gas leak at our church last year! Noone else could smell it! Delina/DysMom