What is life like with a fake brain tumor? How do I deal with this rare brain/neurological condition. Daily struggles of getting pushed away from family, friends and doctors because I “don’t look sick.” Well, I am very sick, very much in pain. With Pseudotumor Cerebri/Intracranial Hypertension, you live in severe pain every day.
I run a FaceBook page, LifeWithIIH that connects the people together who suffer from this condition. I try my best to offer advice, friendship and, when need be, someone to vent to when things just are NOT going right– which, with this condition, often times things just don’t go right.
Not many doctors even know about Pseudotumor Cerebri, that is why so many go undiagnosed and live with this pain, and vision issues for so long before a diagnosis.
On average, we have all been through at least 10 doctors before we have found the the one who will listen. We need more awareness. We need YOUR HELP.
They say it’s just obese women that get this condition. It’s not. There are a lot of children, men and thin women who also have this. That is where a lot of doctors push people away too. Because they don’t fit the IH “profile,” they don’t get a proper diagnosis and treatment. Right now, you have to meet every single one of the criteria to get a diagnosis of Pseudotumor Cerebri.
I read an article where there is a doctor who is in the process of getting that changed! That is great; I hope they get that done soon as it will help so many people. The next project will be getting a good treatment figured out.
My advice to other patients with this condition would be to do your research so you can educate yourself and others. Most don’t know anything about this condition. Keep a very detailed journal of your symptoms and take that with you to your appointments. Find a doctor who will listen, this will help you in your diagnosis process.
So how do you find the right doctors? Usually it’s by word of mouth from others who also have IH. It takes a long time to find that “right” doctor. I am still in that process since I moved from Oklahoma. I always had luck with smaller facilities. They always knew your name, remembered your face, and seemed like they generally cared. Also, younger doctors seem to be more educated in IH, and are more willing to try different things. Usually are faster in starting treatments.
There are treatments for IH, but they are (most of the time) ineffective and they are all off-label uses. They use a couple different medications, and if those are not helpful they move to shunts, which require brain surgery.
My husband has been there the most for me so far. Been through everything with this condition and hasn’t even complained once. He has quit his job to stay home to care for me and the children. Also, I can’t leave out all my IHer friends who have also been there for me when I was having a bad IH day. They always knew the right things to say, because they have been there, and they know how it feels. I love them so much, and very grateful for their support.
If friends and family are not supportive, try to educate them. They will either listen, or they won’t. I have had to cut loose the ones that don’t want to understand or care to learn. A suggestion was made that you could try to leave print outs of IH info and how others are supporting their loved ones laying around the house…maybe then they will be able to get it. You can also suggest , join the support groups online that you associate with.
For support, I suggest the Facebook page LifeWithIIH. It has connected so many who suffer with this condition together. They offer the best support and understanding. They understand because they have been through it all. I guarantee, you will meet your next best friend there!