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...
Hi.My daughter was diagnosed with IIH about a month and a half ago. We have spent a lot of time in th ER so far. We were sent to a nuerologist who is not appropriate. I guess my question is- do you have a team of doctors? She is down to mild headaches each day and the dreadful vomiting has stopped thanks to the Diamox and Zofran. My concern is her vision. She is still seeing double and has spots that are black. She covers one eye to drive. I need some advice as to where to go next.
I'm glad the meds have helped her, but she needs her vision monitored closely. Adding Lasix may allow synergistic treatment of the ICP with Diamox.
if she has any sleep problems, I would get her tested for sleep apnea. this seems to be a big factor in IIH and it can be mild and otherwise insignificant except that it increases intracranial pressure.
I would have her go gluten free and do a more natural diet, avoiding artificial sweeteners and flavorings. MSG can be a problem and it hides in many seasoned processed foods. Also get rid of scented products in your home, do not use personal products with fragrance. If these are things that you are exposed to regularly, you may be "masked" in terms of not knowing that they are triggers until you remove all of them and then re-expose.