Thank you for your reply, Dr. Diana.
One thing that occurs fairly regularly with us is increased intracranial pressure (but sometimes spinal CSF leaks can also happen, and the symptoms are not too dissimilar). If you have headaches, neckaches, nausea, dizziness, sensitivity to light, noise, movement, get motion sick easily, get a worsening of symptoms with Valsalva (straining),
If these are the symptoms you are referring, then yes, I would say she possibly has increased intracranial pressure. Just a few weeks ago, we left a party because the noise was too much for her and she said “giving her a giant headache.” Also within the last year or so, she has started complaining of getting car sick-even on short trips. She has had chronic headaches for many years, but again, within the last year or so, migraines with vomiting and visual changes have occurred.
She is on claritin/protonix, and to my knowledge has not had her B12 levels tested(unless I’m missing it under a different name in her recent blood work.) The cardiologist mentioned dysautonomia, but I watched your video about being careful not to call it that without more than just heart symptoms.
I’m really not panicked…but maybe just maybe…slightly overwhelmed 🙂 and want to be prepared to ask all the right questions to get her the care she needs. Also frustrated, based on all the new findings, that we have to wait until June to be seen by an EDS doctor, but that is my own fault.