I need to frame this properly and tell you that I have never had the extreme problem you are having. However, I did suffer from head pressure with some being behind my eyes. I have tinnitus. And I went in to develop an occipital headache that would really stop me from doing anything. I’ve hale POTS jntermittently but not the extremes that some people have. Anyway, I used Petadolex (German brand name for Butterbur…it was the type used in studies). I went on it for 4 months and then tapered…mainly because the studies did not run longer than 4 months and because some studies noted some ‘staying’ power of relief. It worked very well for me and got things to calm down. The society for neurologists (exact name eludes me) recommends it as a top evidence based choice for migraines. So just thought I would mention it. I have mast cell activation and my theory is that it crossed the brain barrier and treated my brain like an HI/stabilizer (that part is totally my on theory and not science based).
Also, im a little concerned about my daughter and looking for any insight anywhere. We see the MD/ neurosurgeon tomorrow at Tufts (actually today …it is 1:16 am right now). My daughter just saw Rordorf out of MGH. (Vascular neurologist). He was very nice. It seems the radiologist (fellow) signed off on the U/S he ordered and said it was fine. Subsequently, Rordorf looked at the images himself and said it wasn’t …noting an ICA stenosis. We have since moved to a pediatric neurosurgeon (daughter is 22 years) who is EDS friendly and connected to Francomano & Henderson. Has anyone seen Rordorf in Boston before? I’m afraid I’m making a wrong move by taking her to another neuro when Rordorf sees stenosis. The original complaint was a droopy eyelid…and then the stenosis was found. The neurosurgeon will run an MRA and MRI. But at the neurosurgeon, they will use Gadovist which is the safest (most stable) gadolinium contrast (so it is used in pediatrics) whereas at MGH uses Ablavar which is fairly new and gives the best picture of arteries (but no long term safety studies and the studies are 68% of white older men). My thought is that a big picture EDS evaluation should be the starting Pinot…I’m assuming the Tufts neurosurgeon at least has a clue about the cerebral nuances of EDS.
You all are pretty experienced with this sort of testing. Am I making a mistake by having the testing done at the pediatric hospital with the neurosurgeon and NOT the vascular neurologist ?
Sorry I don’t mean to de-rail the thread. I can be PM’d.