Tara B

I seem to have the opposite problem, nothing will come out! I went to Mayo and had the whole series of awkward and embarrassing tests so they could measure the dysfunction which was readily apparent. I tested in every department, it seems, at Mayo. I even tested poisitive for POTS on their tilt-table. Then the neurologist told me they couldn't rule out this all being caused by "anxiety!" I was in shock by neuro's final analysis. They literally walked me out to the hallway and said goodbye. ...Dr. Low, their head of dysautonomia. Fortunately I was also seeing the head of rheum while I was there, too, Dr Matteson. He found anti-nerve antibodies in my blood and recommended immunosuppressive therapy, I have been on immunosuppressants through my local rheum, who he knew and liked. Symptoms are better on these meds. My recommendation would be to try and see rheumatology while you are there, too. And don't worry, while they are "testing" on you, know that many of us have been there before you!

Good luck to your daughter, she is lucky she has you to navigate thru a difficult medical system. Please let us know how she does. Sounds like a long journey to find C-spine instability as a cause of vertigo. Does she also have nystagmus on head turn? I can share with you a similar case a friend of mine just travelled all over for answers for: she is in her 50's with EDS, vertigo and a lot of autonomic symptoms. She thought she had POTS but didn't quite meet the criteria. She finally had a lumbar fusion, they thought her lumbar was unstable and contributing to her symptoms...but it turned out it didn't help her. She continued to have vertigo and went everywhere looking for answers, including Stanford...I don't think she saw Dr Grant, however. Finally they somehow realized that the vertigo was really due to an inner ear problem and not POTS and she needed ear surgery. They also decided that a lot of her POTS-like symptoms were due to deconditioning, because she had been in bed for so long...but her vertigo may have developed after her back surgery...from lying in bed so long ...I'm not sure on this....but gradual physical therapy was the answer. Anyway, I know you are on top of all of this but just wanted to share with you what sounds like a similar presentation so you can be aware of any future issues.