Yes Valsalva aggravates me, makes me lightheaded. As far as flying, so far this year I have been on 82 flights. I didnt know why but I felt my neck/shoulders hurt worse on the flights, I just attributed it to the uncomfortable seats. Sometimes I become aggitated like I want to be off the plane. Sometimes I get a little dizzy, when I cant ground myself. Im always trying to stretch my neck, I find myself tilting my head without even being aware of it, especially to the right. Is Beth’s post on this forum, if so I will look it up.
Hi Tracey, Beth’s thread is here: http://prettyill.com/forums/viewthread/5/
Not unlike you (and Beth), those of us with a bit too much pressure on our brains tend to be easily motion sick, and changes in pressure — certainly when flying — and possibly even barometric pressure(!) can clean our clocks! When we have too much intracranial pressure, it doesn’t take much to make us symptomatic. As you likely know by now, my son and I had CONSTANT occipital headaches radiating down our necks and to the tops of our shoulders that went away after we took off some of the pressure. I had gotten so bad that I felt like I was passing out when I turned my head. That was a horrible feeling. I KNEW I was headed for a neck fusion, as a minimum (and a neurosurgeon recommended a brain shunt for both my son and I). But as we reduced the pressure with medication, that went away! Almost immediately, in fact. Sometimes surgery is necessary, but I believe that sometimes we can avoid it. And since classic EDS patients don’t heal well (Jeez, I can’t even heal a pimple — neck fusion may be a train wreck for me), it’s an easy thing to try first, with few potential side effects (talk to your doctor first, especially if you have a sulpha allergy).
Tilting your head may be a position that opens a vein for drainage (I have one that is stenosed unless I turn to the left), meaning you may have CCSVI. An x-ray may be interesting, just to be sure your odontoid (top bone of the spine) is straight, too). I feel optimistic for you, Tracey, that you will get this all worked out and maybe take, what, 85 flights this year? 🙂