Hi all,
I got back from Cleveland with some answers, Finally! My dys and orthostatic hypotension were confirmed and attributed to being brought on by trauma (car accident in January). I was told that the good thing with this is that symptoms do tend to lessen over time (6 months to 3 years!), but was cautioned that any additional trauma (the accident in June) or serious illness (pneumonia in May) could re-trigger them. I had another TTT done, and once again, BP dropped to 65/30,but this time, my HR dropped also from 100 to 71. They thought this was a little odd, but could not really explain the significance. I saw a headache specialist he diagnosed me with cervicogenic headaches, meaning that they are originating from my neck and aggravating an existing migraine condition. I would have thought he was crazy, because all this time, my neck has not hurt, but as soon as they started doing Range of Motion tests on me, the pain was evident. Apparently, after both accidents, I stopped moving my head so far to keep it from hurting, and just started turning my whole body to respond. I did not notice this change but my husband said he did when the doctor mentioned it. So basically, I have been protecting my neck from hurting by just not moving it. I have to start PT for my neck and possible nerve blocks if the PT does not help.

I am just so happy that I have some answers! It has been a long nine months, and if I had not seen the Mystery Diagnosis show and found this board, I would probably still be searching for answers. But they answered everything and had research and clinical experience to back it up. This all started as a result of my first accident, which is something we have suspected, but no one could tell us for sure until now. I still can not drive, but they think once I get my headaches under control, the risk of passing out while sitting is practically zero.

Thank you all for the good thoughts prior to going. It helped to know that I would have someplace to come back to and either share the good news or the added frustration. Luckily, it was good news.

Congrats!! It is always nice to have some clarity. I hope that your PT helps alleviate some of your discomfort!

rachel, who was the doctor that diagnosed your headaches in cleveland? i think i might have seen him too. the guy i saw was good, but attributed by dizziness to cervical spine issues, when it turned out to be POTS (which he missed)

I saw Dr. Cherian. He also tried to say that my dizziness was cervical spine related, but after seeing my tilt table test, he got off that idea. He wanted to say that all of my symptoms were neck related at first, as I think that is probably his specialty. From what I read about it, there is a possibility that is contributing to the dizziness, but I hardly think that is the cause. He was able to diagnose that I have some serious cervical spine issues, such as a malrotation at C1 and occipital neuralgia. This all explains the increased frequency and severity of my migraines in the last 9 months. Also, from what i read, it is possible for cervical spine damage to cause autonomic dysfunction, so he is not completely off base.