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 everyone,
I was recently diagnosed with psuedotumor cerebri/IIH/stricture in transverse sinus (surely off with the terminology there, lol). I'm 28 years old, and I'm just wondering.... how do you tell someone about this condition? What are some experiences you've had describing your condition? I haven't shared my diagnosis with anyone, and I'm specifically wondering how I should tell my boyfriend (living together for 5 years now). What I mean is, honestly, I feel guilty saying anything. I feel guilty about pulling anyone else into my health issues. But at the same time, I want him to know; I guess he kind of needs to and I want him to understand that I do actually need support. I am absolutely exhausted and I know I need to ask for help. I tend to not ask for support because if the support isn't given, I feel crushed. So, I usually don't say anything at all. Any input would be appreciated. Thank you.
I understand feeling crushed when people are not as supportive or empathic as you would like them to be. All I can say is get used to this. I lost a husband, a surrogate mother, and many many friends when I became chronically ill. Part of it was my abusive husband who created a great deal of drama and tried to paint me as a psych case to everyone. Hopefully you do not have a person in your life who has just been waiting for an opportunity to try to destroy you, as I did. What I can say is that you find out who your real friends are. You figure out how to set boundaries so that you can survive, how to take care of yourself.
Are your doctors recommending a stent? maybe if you can have a stent then you can recover and not be left with a chronic illness. Maybe it would help to have your boyfriend go with you to some of your appointments, especially if the doctors will be talking about possible treatments. Too often the doctors even treat us like malingerers, and having a man along can make a difference for how we are treated. It shouldn't be that way, but unfortunately it is.
Please believe that you are worth it, worth being cared about, and care for yourself if no one else will.
Also a great idea to ask my boyfriend to come to some of the appointments. He listened and took the news better than I thought. He said he’s going to stick with me and wouldn’t even think of leaving me on my own with this. So that’s positive. It always seems to come back to me embracing my own self worth.