Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Idiopathic Intracranial Hypertension

Dec 21, 2014 8:24 AM

I love be able to track the pain! For a condition that doctors know so little about this makes it much easier to show them where the pain is... Anyone else on here with the same condition?

Dec 23, 2014 7:25 AM

I don't know what is causing my head pain. But I often feel like your drawing in my head. I can't seem to get a doctor to seriously consider looking into my head pain for a cause.

Dec 23, 2014 3:44 PM

My pain does not wrap around my head, stays like a raccoons mask around my eyes and behind. They measured my CSF a pressure yesterday and mine was only a 20. I see the optic-neurologist next week.

Dec 23, 2014 6:42 PM

@Aliya. You know your body best, if you feel it worth them looking into then keep pushing. The condition is so rare it took them ages to dignose me and kept telling me is stress related head aches, was very frustrating :/

@Aniecea. I hope all goes okay next need, I have been suffering from more sever eye pain recently but I think because my eye's have been under so much pressure for so long, even when the pressure is lower we forget that our eyes still need time to heal back to normal.

Dec 24, 2014 11:05 AM

My regular eye doctor discovered my swollen optic nerves when I went in for an eye exam. I thought I needed new glasses since I had a headache that was not going away. Long story short, I was diagnosed with pseudotumor cerebri. I have have been symptom free (at least not having swollen optic nerves) for a few years now. Occasionally I have headaches that remind me of the type of headache from PTC but I am realitively symptom free, to date.

Dec 27, 2014 10:43 AM

I also have fibromyalgia (which I had first) and wondered if the Pseudo Tumor and fibro are interrelated?

Ready to start relieving your pain?

Join Community