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!

5 thoughts on “Life With A Fake Brain Tumor”

  1. Ms D says:

    No one really understands how I feel. I live day to day with headaches, a constant ring in my head or the occasional roar in my head. Noise is so bad to my ears , it’s sometimes debilitating where I want to pass out. My tummy is queezy when the pressure is high. I was diagnosed with intracranial hypertension last year. I thought I would die after having the spinal tap, blood patch done. For a month I was weak and I wasn’t breathing well and my head was always hurting. No one could laugh or talk by me without my head spinning out of control.( So I wear earplugs when my head is so bad. ) I felt crazy and like I was losing my mind. I feel dizzy most days. My neck and shoulders tense up into knots. On good days I can get some things done around the house but it takes all day. If I rush around my pressure goes up and I suffer. My lower back hurts when my pressure is up. My tailbone hurts all the time. Sometimes I’m so tired and my body aches so bad. My memory isn’t very good either. I’m fighting anxiety because of this problem. Somebody has to be smart enough to find a cure for this disease. I will be the first to thank them for searching and researching. Then just maybe my family will believe I’m ill and it’s not just a cold or flu I’m afflicted with. I want to scream and tell them to try on this disease and you’ll see I’m not just faking all this. One day I’ll pass or have such a bad migraine that won’t go away like I have had before and then they’ll see I’m ill for real. Other than that I pray to go home with God cause I can’t bear this anymore. I often wonder why I deserve this and is there something I could have prevented from it going into this. I’m praying for a miracle. In Gods healing and someone with a smart and intelligent brain can find a cure. I can’t afford my medicine right now because I’m paying high prices to see doctors and get testing done. When will this nightmare end? Someone please help us and find a cure for those who suffer this disease. I want my life back to where it was. God please help us who suffer diseases ,your the only one who understands and you know how to heal this disease, bring it to researchers so they can help many sufferers. In Jesus name. Amen

  2. I’m only 16, and I’m currently facing many illnesses. I am a type one diabetic, Rheumatoid Arthritis, I have Asthma, I may be currently facing a new autoimmune skin disorder. And now an ulcer in my stomach. And now I will be going in to have surgery on my optic nerves. There is also a “pseudotumor” in my head. They (Doctors) have me on so many different medications I can hardly keep track. It’s a daily struggle of constant headaches, uneasy stomach because of the pain.. Lights make the pain worse. I had a Spinal Tap in May 2016, and the swelling in my brain and optic nerves continues to grow, even with the medication doses increasing monthly. I struggle to walk, or even get out of bed. Not only because of my back pain, but because as soon as I move, the pain kicks in and it almost seems impossible. I try to keep up, but it’s like I’m meant to be down. I have 4 younger siblings and soon to be watching very many younger, toddler children, 0-5 years old. Noise is a major bothersome, and it seems like there’s absolutely no way to completely block it out. I’ve been getting very dizzy, lightheaded, and it sometimes feels like my head is no longer apart of my body. Does anyone else get anything like this? I would really love and appreciate advice from someone who knows what it is like to have a “fake tumor”.

  3. med student says:

    im medical student and patient.
    i was sick for 4 years and from asia.
    i think that i found the posibility couse and treatment of this painfull disease by my experience and researchs. i dont try that on someone else but it works on me very well.

  4. I have been told after two years of headaches and stiff necks that i have this thing that means false tumor, where i have pressure on the brain that causes my headaches abd blurry version and the ringing in my ear.. On top of all that i have fibermyalgia, diabetic, high cholesterol, 3 heart attacks with 5 stints.. Plus i have arthritis all through my body with a pinched nerve in my lower back and 4 buldging disc… So i hurt all the time.. I know what you mean when you say ppl dont want to hear about your pain. But if tgat is all you feel what else is the r e for u to talk about. Thats why i stay home in my comfort zone so i dont have to bother anyone with my health issues.

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