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.

[DysMom]

Wow--her symptoms sound like me--but she's so much younger than me. Some of mine have resolved somewhat, maybe from B12 shots. Neuro found I was VERY LOW in B12. Vision problems much less often;tingling and nausea less. Still dizzy/lightheaded & headaches, esp. base of skull. I do better w/less drugs, not more, so down to only BetaBlocker for Tachy. For headaches Neuro suggested Butterbur, a natural supplement--just started--takes 2-4 weeks to help.(If you try PLEASE check w/Drs. :)) As well as controlling environment such as heat/humidity it helps if I eat mostly simple, unprocessed foods, no soy, sulfites, etc. I see a definite difference in tingling, etc. I really hope she improves--I had a few symptoms w/adolescence and then many years of good health. Hormones play a big part in this, I really believe. Best of luck! Delina aka DysMom

[kkrylee]

Thank you.  We are in Louisiana and it seems that the doctors that I have found are all in Northern states, no one anywhere near us.  If a doctor looks at her MRI's and believes that it could be Chiari 0, then we would be willing to do what we have to.  But I'm not going that far away without some reason.  Most doctors look at her test results, look at her briefly and say she's fine.  They spend a whole 5 mins on her and send us away.  I cannot afford to expend the amount of money needed for travel to get more of this response.

[rbird]

I started thinking about Chiari because my daughter had terrible headaches.  However they are not in the base of her skull. Increasing her fluid, salt and giving her Florinef seeemed to help those problems.   her main problems right now are fatigue, mental fog,& GI symptoms.  when I get to my other comoputer, I will see if I can find the sites that I used.   a Chiari organization gave me the names of some doctors who might look at the MRI over the phone.  I'll try to get it to you today.  rbird

[kkrylee]

I know exactly what you mean.  We are disappointed whenever tests come back normal.  We can't fix the problem until we know what it is.  I also considered Chiari seriously for the same reasons you noted.  I sent all her info to a dr in Texas who treats Chiari.  The nurse called me & wanted her to come in but would not state that dr saw MRI or thought that could be Chiari.  It is an 8 hr drive to this dr.  I wanted more confirmation before going.  We may still consider this.  Thank you for your help. What is your daughter's issues?

[rbird]

I looked at your pictures.  i am by no means an expert, but I did a lot of research on Chiari because I thought my daughter might have it.  there are experts who believe that a Chiari is basically a crowded brain.  they look at the angle of the tentorium  and to my very untrained eye, hers looks a little crowded.  I found a website that showed a picture of a normal brain next to a chiari (and of course I can't find it now) that helped a lot.   a lot of the information says that chiaris are often missed unless they are specifically looked for.  some doctors categorize a chiari 0 that other doctors don't recognize.

Like I said before I've been through a lot of the same sort of stuff with my daughter. you get tired of being told that nothing is really wrong & sometimes that they will outgrow it.   I was actually excited Friday to get some lab results back that have some abnormalities.  I told my daughter that I had good news = something had come back abnormal!!!  we'll see what the docs say this week.   good luck. rbird

[kkrylee]

Yes, they have done 3 MRI's of her brain (1 specifically of the Pituitary because it is large & globular but 2 endos say that it is fine), 1 MRI of cervical, 1 MRA of brain, & 1 MRA of cervical.  Several doctors have looked at her scans and all say that it is fine.  You may look at my photos if you clik on my member name.