Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I love when our doctors tell us to expect the very things that would send everyone else to the emergency room. Extreme head pain? Don't take pain meds unless you have to. Tingling in your face (arms, legs, etc)? Just keep track of it. Oh you started falling down? Be careful when walking. Intermittent blind episodes? Make sure those don't increase in length of time (told to me by the opthamologist last week). Oh you went from having very little pain to extreme pain basically over a couple of days and now have severe brain fog so much you can barely remember your own address? It's fine, just relax and don't overstimulate your brain. Oh and by the way, expect more of the odd neurological effects over the next couple of weeks...this may be just me, but I just don't get it.
Sorry to rant,
Kristena
Sorry to rant,
Kristena
No matter how confusing that kind of statement is to us, and possibly dangerous to our health, I think the doctors say it because they don't know what to do for us. Everything they know to try they have tried. All of us are frustrated. Them. Us.
I've given in to the pain. It's part of my life, I guess and I'm going to have to learn to have as much life as I can around it. One of my struggles these days is a steady CO2 level of around 13. They seem to think this is okay (normal is 23-27), and in the meantime I can't breathe very well, my heart is beating weird, and I feel like I'm going to pass out. The alternative? Going off Diamox, which I guess isn't alternative for me. I'd rather be stuck in bed without a headache than with one.
Yes, we are told to put up with things that would land other people in the hospital. You are absolutely right. It gets a little scary when things get worse.
I am at my wit's end with these medical professionals telling me I look fine and refusing to do an opening pressure--
My tinnitus is constant, the rest of intermittent for me, but becoming more there than not...