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.

[enzymelover]

I'm glad your daughter made it to college! At this point in time, I can't even imagine my son recovering enough to do anything other than online courses.
He has a wheelchair, but gets exhausted too quickly to go anywhere. He is 16 now, and homeschooling.
I understand what your daughter means; about the daily IV saline. When my son was hospitalized with "gastritis" and nonstop vomiting this year, he was on IV saline for two days, and his BP rose to a respectable 112/64. He was able to stand for almost two minutes. Usually, he can't stand up for more than 20 or 30 seconds!
I asked about getting weekly IV saline for him at the time, but his doc seemed to think it was not necessary.

I finally got his endocrinologist to start him on Florinef four months ago, but it's not really helping. (He seems more alert while sitting, but still can't stand). He had an echo this year; no abnormalities seen.

I admire your daughter's ambition to go to medical school. I hope someday she is strong enough to become the doctor she wanted to be.
That's awful, about the car accident! It certainly didn't help anything!

[katy174]

I was diagnosed with Orthostatic Hypotension when I was 15 years old. I have had over 50 syncopes over the last two years. I am going in on the 22nd of this month to get an EPS study to see if there are any abnormalities with my heart. The other day I had a tilt table test and surely enough I passed out on it. I havn't been able to work or go to college. I can't even leave the house because I have already passed out in the road 3 times. I have a lot of sympathy for anyone who has this condition. I just don't know what to do anymore.

Katy

[kkrylee]

Years have passed and my daughter, now 20 yrs old, has been diagnosed at UT Southwestern Autonomic Clinic in Dallas with POTS (Postural Orthostatic Tachycardia Syndrome) - Hypovolemic type and autonomic neuropathy.  She also has Ehlers Danlos Hypermobility, Mitral Valve Prolapse, and now has a fatty liver and continuous HIGH Bilirubin Blood Work.  Her doctor says that is Gilbert Syndrome.  So far the only drug that helps is Florinef but she needs monthly IV Saline treatment to be able to keep functioning.  She swears that if she could have daily saline IVs that she would be normal.  After an IV, she feels like a normal person but it does not last long.  She is now having depression and anxiety issues and is being treated with Cymbalta.  She is a junior in college and because of an automobile accident days before this semester started which caused a severe concussion and inner ear imbalance, she is fighting to get any credit for this semester.  Her professors, even the ones that teach neurology just don't understand when they see her looking healthy at one point of the day, why she has to miss class or a test later in the day.  It is so frustrating.  She has realized that her disease will not allow her to get to medical school unless she improves dramatically.  Because of this she has changed her goal from Pediatric Neurologist to a Physicians' Assistant.  She loves medicine but med school is too demanding on a healthy person much less someone with POTS.  Wish you all the best.

[enzymelover]

  Forgot to mention, my son also has a heightened sense of smell, and highly flexible joints. Excess cortisol can cause the connective tissue that supports the joints to weaken. However, because my son has the combo of orthostatic hypotension/tachycardia and excessive joint flexibility, he has been clinically diagnosed with "possible" Ehlers-Danlos Hypermobility Type, because these conditions are frequently seen together.

He has also developed other symptoms that can come with Ehlers, such as swallowing difficulty (dysphagia), digestive problems, anxiety, sleep cycle disruption and extreme nearsightedness. In Ehlers, the orthostatic problems are thought to be from overdilating blood vessels, due to the connective tissue abnormality and it's effect on the smooth muscle lining in the veins.

[enzymelover]

  My son has had severe orthostatic hypotension for three years. He had an MRI four years ago, which found a pituitary mass, thought to be a macroadenoma. He had surgery to remove the tumor/cyst two years ago, but developed the severe chronic hypotension nine months before the surgery, and the operation did not improve this condition ( the pituitary damage was already done).
The tumor turned out to be a craniopharyngioma, technically, a central nervous system cyst, growing under the hypothalamus, and over the pituitary. It was squashing his pituitary gland, causing hormone deficiencies.

All of his symptoms; light sensitivity, eye pain, headaches, severe nausea, appetite loss, cold intolerance, abdominal pain and constipation - are either gone or nearly gone, but the severe OH continues, in spite of treatment. We haven't found anything yet that works for him.

If your daughter's pituitary is enlarged, with vision loss, nausea, headaches, etc. it's definitely pituitary related. It might be pituitary inflammation - lymphocytic hypophysitis, or pituitary hyperplasia from hypothyroidism.

Although some enlargement of the pituitary during the teen years (and pregnancy too) is normal, if it's causing multiple debilitating health problems, that isn't normal.
I hope your daughter is getting careful follow-up on the pituitary and other endocrine hormone management. Has a neurosurgeon looked at her MRI's? Sometimes a surgeon finds things missed by radiologists and other less knowledgeable doctors, even when surgery isn't needed.

I wish the best for your daughter.

[mlsb23]

I have a 12 1/2 yr old daughter thats has had nonstop headaches for about 3 weeks now nothings works. Have had all kinds of test that come back negative. She is tired, and hungry all the time. She can't stay a whole day in school because of the headaches. The pain is always on the right side of her head . Ct scan came back normal. blood work normal. Any meds the dr. have given don't work to stop headaches