Doctor won’t let me have it. After I finally get my disability approved I’m going to change doctors. Those pictures were taken during a bad episode. As I had mentioned before pressure applied close to jugular/vagus nerve will fix until pressure is released. New development has been my hearing. I have a ringing sound which has been with me off and on and some hearing loss of and on but I lost the ability to hear anything on my right side for several hours after waken up. It did slowly come back. Ever heard of this with anyone?
Love the fact you are a “patient on leave, educating your doctors”. ha. Dare I say it? I had the hearing AND tinnitus issue on and off. Diamox certainly helped. Many of us go on to “Meniere’s Disease” (like my sister). She lost most of her hearing in one ear. This is a complete guess (since I’ve never seen you, your MRI’s, etc.), but if you are like many of us, I wonder if you have external communicating hydrocephalus pushing your brain DOWN onto some of your cranial nerves below. Hmmmm…. It kind of sounds like it. Because the pressure, and hence the symptoms vary with the pressure (and your position, etc), this discombobulates the docs. I showed my neurologist a chart of all 12 cranial nerves, and how all but the olfactory nerve was affected in me. BUT NOT ALL OF THE TIME. That’s a new one for most neuro’s. They don’t think of nerves being affected “off and on”. We either HAVE IT OR WE DON’T. But I’ve found that is not exactly true… BTW, Robert, trying to educate some doctors who are not in the research field can be an act of torture for you. BEEN THERE. They have about 8 minutes per patient to figure us out and get us out of their offices. That’s TOUGH, when we are bringing them new ideas to consider. I hear about the reversal of Diplopia ALL OF THE TIME with the use of Diamox in our population — there are numerous signs and symptoms we can look for. I would NOT recommend an LP because many of us heal poorly, and those puncture wounds can open up even years later… Hang in, my friend… 🙂