Jeri, are your headaches ever in the back of your head, going down your neck and radiating out to the top of your shoulders in a kind of “angel wing” pattern? Or are they strictly migraines that affect your entire head?
Did anything seem to trigger your POTS? I may have some suggestions for you…

Angioplasty helped me only after I was able to “drain my brain” of the CSF that was “stuck” there (likely from damaged arachnoid villi due to an attack by viral antibodies). My “brain drain” is Diamox. Once the CSF could get into the veins, then, whoosh, out it went! Our son, though, had to go off of Diamox, and got no relief from the angioplasty, even though his veins looked just like mine.

For me, the Diamox took care of many symptoms, and the angioplasty took care of most of the “M.S.- like” symptoms (I was numb on my left hip and my right arm and leg felt like they were dragging toddlers around). I still have orthostatic intolerance, and I’m sure the Diamox isn’t helping me with that in the short term, but perhaps it will over the long term, as I believe it’s the pressure on our brains that is the source of our problems. If not, though, I’d trade standing for being able to think any day! Speaking of standing, Jeri, did you ever try an abdominal binder (nice and tight)? I’m trying to figure out if some of us get relief from these binders because of the help it gives our hearts in getting the fluid into our brains. A big area of focus for me now is preventing congestive heart failure (yea, I’m hearing a fair number of us head in that direction, too. Ugh.)

I am collecting head circumferences (and length and weight) for kids (or adults) who are affected and have that data for the first 12-15 months of their lives. I believe I’ve found that there IS a “congenital” CCSVI evident by the increase in head circumference (much more so than length and weight) of babies before their skull sutures are closed. Yes, I agree, this pressure stuff can be congenital and can manifest in a variety of neurological disorders. I’ve have some imaging that indicates the pressure may actually push our brains onto some of our cranial nerves, causing other issues (pressure on cranial nerve 2 would cause glaucoma, for example).

Oh, Jeri, amazingly, when I got my fMRI result back, I learned that I developed a small brain lesion. I can’t tell you how many people I know have both M.S. and EDS. I think I was headed there… Yikes. Did your MRI show any brain atrophy, perchance?

Please let me (us) know how your angioplasty goes! Thank you for reaching out, and I am excited to hear from you again soon! Dr. Diana

What I find fascinating about your story is that you mention your headaches got MUCH worse on the florinef… because my “migraines” have gone from 6 or so a month to 15-20 a month! My only treatment is Excedrine, if I catch it in time. No one has made any connection with my increase in headaches with the fludrocortisone! I will ask my dr. about that!

Also, my grandmother had glaucoma (and Alzheimer’s) and my dad has low pressure glaucoma. Incidentally, my dad’s brother, my uncle, has Parkinson’s. So much of this seems family related!

I also have been worked up for mast cell disease and a very invasive surgical muscle biopsy so we could test for mitochondrial disease (negative but showed mild neruomuscular disease – totally useless), no lesions on MRI for brain or spine (but all my symptoms point to MS). Haven’t had a spinal tap yet, but after reading what you wrote, glad we haven’t tried it!

I found out about CCSVI and there was a big informational meeting in Seattle (I live in the Portland,OR area) the end of January and Arizona Doppler Services flew in to offer Zamboni CCSVI scans, so I went up for that and had 4 of the 5 Zamboni criteria (which kind of shocked me). I am scheduled for the “liberation” procedure at Vascular Access Center Seattle in April.

Thanks again for you post. Hopefully I will get away from these headaches soon!