I have Pseudotumor Cerebri. Better known as PTC/IIH

I have pseudotumor cerebri (PTC) which is now commonly called idiopathic inter-cranial hypertension (IIH).  Only 1-2 people per 100,000 people have this. So, it is rare but not uncommon. Basically I have too much cerebral fluid around my brain and spine. The excess fluid causes pressure around my brain and optic nerves in my eyes. There is no rhyme or reason as to why people get this. Drs don't know what causes it. There is no cure either. There is only relief of the symptoms. This disease mimics a brain tumor without there being an actual tumor or any other disease that could cause the symptoms.

I got lucky when I was diagnosed and had an ER Dr that actually knew what it was and I wasn't dicked around like a lot of people before they got diagnosed.

As of 3 days ago it has been 2 years since my diagnosis.

Two years ago I had a migraine, or what I thought was a migraine, that lasted for 16 days. I finally caved and went to urgent care after it got to the point where I could feel people talking and I could feel the changes in lights around me. I could literally feel it. Every time someone talked, to me or near me, my head would throb in tune with their voice, tone, pitch, everything. Same thing with the lights. It got so bad I wanted to throw up every time someone started talking or turned on a light.

At the urgent care I explained to the Dr what I was feeling and how it hurt so bad at the base of my skull, but when she pushed there I didn't feel any pain. The Dr was not comfortable with diagnosing me with just a simple migraine and recommended that I went straight from the urgent care to the emergency room. I almost didn't go to the emergency room, but decided I couldn't deal with the pain anymore.

I get back to a room at the ER and the nurse comes in and asks me a bunch of questions. Not even five minutes later I had a Dr in the room. Now, anyone that goes to the ER knows that the quicker a Dr comes in your room the more serious your condition is. So, naturally, I am freaking out at that point.

The Dr asks me the same questions the nurse asked me, walked out, and three minutes later I am being wheeled to have a CT scan. I get back from the CT and the Dr is back in my room. He tells me that I have pseudotumor cerebri and keeps rambling on about the condition. All I hear are the words "tumor" and "lumbar puncture" out of everything that he said. The Dr walks out to give me a few minutes to process everything before we proceeded and I called my mom in tears. I had no idea what the Dr was talking about, I didn't know what was going on, and I had only ever heard about lumbar punctures being the most painful thing you could ever go through. It ended up not hurting at all.

The Dr finishes up with me, I get my discharge papers, prescriptions, and a paper telling me I already have an appointment scheduled with a neurologist. Another sign it is no joke is when they schedule your follow ups for you.

Since then I see my neurologist every six months, had an MRI where I had a panic attack and cried the entire hour and a half I was in that tube, and had another lumbar puncture.

I stopped taking my medication about 8 months ago. I still deal with the tinnitus, headaches, pressure at the base of my skull, I can't look down to read for too long or my neck and head start to really hurt, and issues with my memory (remembering why I walked in a room, what I was trying to say, appointments, important information, etc.) and getting my thoughts out the right way, but it is so much more manageable than when I was diagnosed. I do still deal with one thing that scares me when it happens, but the Drs never really have much to say about it. When I am standing for too long, or grocery shopping, I get extremely dizzy and light headed. I feel like I am going to get sick and pass out. This feeling lasts until I sit down. I wish they knew why it happened but the only thing I can think of is when it happens the pressure around my brain is elevated.

I hear about people getting shunts put in to help the draining of the extra fluid and that terrifies me. That is brain surgery and shunts are notorious for clogging or not working for very long. I made the decision about a year ago that I would never get a shunt unless or until it came down to having to get the shunt or going blind. You read that right. If my disease ever gets bad enough I could go permanently blind. I have some issues with double vision from time to time and blurry vision, but my eye doctor is helping me keep that in check.

I am part of a support group on facebook, which is nice because I don't feel alone in this anymore. I don't know anyone in my non internet life that has this disease so it helps to have people I can talk to about it online. At the same time though, I don't like it. The group is a constant reminder of how bad I could, and still can, have it. It scares me to think that this could be worse that what I have already dealt with. I could just be in denial that I could get worse as well. I have been feeling "ok" long enough that I would like to think that this magically went away for me, but even as I type this I am getting light headed from glancing down at the keyboard and the light from my screen. I am also starting to forget my train of thought so it is time to end this post now :)

One day at a time. That is all I can do. Thankfully I have been having more good days than bad.

Is blood really thicker than water?

Growing up, and even now, I have seen shows, movies, read stories, seen first hand, families that are tight knit with siblings that are very close. That is something I always wanted growing up, and still do.

My family isn't like that, at all. I don't really talk to anyone on my dads side of my family, and besides my dads mom I haven't seen any of them in a few years. My moms side of the family....... previous blogs have explained why I will have nothing to do with any of them. But, the one I always wanted to be the closest to was my brother.

I used to imagine that as we grew older our bond would stay strong. We would hang out together, our kids would grow up closely, etc. That is not the case and it breaks my heart.

I wasn't the best sister growing up. When we were younger I always wanted to do what he was doing, play outside with him and his friends, protect him, guide him, etc. Then around the time I was 13 our whole dynamic changed. I started to become very depressed because of what I was going through, I was angry at everyone, and I took it out on my brother. There was a lot of jealousy too.

I was jealous that my moms side of the family treated him completely different than they treated me, I was pissed at my mom for not defending me, I didn't want to do anything except stay in my room or hang out with my friends, when they could be bothered to spend time with me. No matter what I did I couldn't get my mom and her family to treat me the way they treated my brother. So, logically, I would fight with my brother and act out more and more. I wanted to make him feel as miserable as the rest of the family made me feel. If he got an amazing gift for his birthday or Christmas, where I would get lectured for being the black sheep, then I would break his gift. If he got praise for doing well in school, where I would struggle to get a "D" then lectured because I needed to "work harder like my brother" then I would terrorize him until it ended up in a fist fight or me throwing the cordless phone and remotes at his head.

Don't get me wrong, I loved my brother more than anything. I still do. Even though I am the eldest I have always looked up to my brother. Where I struggled with making friends, keeping on top of things, saving money, and doing well in school he always had it easier. He could sleep through class and pass, always had friends around him at school and coming over to our house, he had his shit together by the time he was 16.

I didn't know how to handle my emotions growing up. I was taught by my mom, be it intentional or not, that you internalize your emotions. If it is something you can't handle then you "lift it to God and let go." If that didn't work then you shopped and spent money you didn't have until you felt better.

I know this isn't painting my mom in the best light, but how she made me feel, unfortunately, ties in with how I felt about my brother growing up. My mom and I fought a lot growing up, she would vent to her mom and sisters about what I was doing, how I was treating her, how I was acting in school, and how I treated my brother. Which, in turn, made her mom and sisters treat me worse than my brother and made them lecture her about how she was failing as a parent with me.

My brother took what I did to him in stride. That is until I was 18 and he was 16. We had to share a car, but I had gotten kicked out of the house for trying to fight with my dad. Sharing a car when we lived 15 minutes apart was a challenge, especially since he was in school. His use of the car came first. There was one day where I went somewhere with him and one of his friends and we started to get into an argument over the car as my brother was taking me to my apartment. I told him to take me back to the house so I could talk to our dad and get use of the car for that night and the next day. My brother refused to take me home, telling me to call our dad and talk to him about it over the phone, and drove me home. I refused to get out of the car and leveraged myself in the car so he couldn't pull me out of the car. After five minutes of us screaming at each other, my brother trying his damnedest to pull me out of the car, and his dickhead of a friend laughing his ass off in the back seat, the entire dynamic of our relationship changed. My brother sucker punched me square in the face. I am screaming at my brother, then all of the sudden I am bleeding profusely from the nose. I had blood everywhere and my gums had been ripped from my tooth in one spot. I screamed "TAKE ME TO DAD NOW!!!" and for the next 15 minutes I am in the car with my brother and his friend laughing and making fun of me.

My mom refused to let me call the cops and press charges, my dad was just pissed at the entire situation. I can't blame him. They don't say "hindsight is 20/20" for no reason. I should have just gotten out of the car and called my dad from my apartment.

The next day my mom told me to do what I felt necessary.  So, I went to the police, filed a report, and told them I wanted to press charges. I ended up disappointing both of my parents with that. I just had my brother arrested. We went through mediation for months after that.

While our relationship did start to get better over the years, I ruined chances of us being as close as I wanted.

When I moved to Arizona in 2009 I asked my brother to go to lunch with me so I could get some things off my chest before I left. I spent the next hour apologizing, explaining why I treated him the way I did while we were growing up, and that I was always jealous of him. I remember him saying "why were you jealous of me? I was jealous of you." That took me aback. I never thought of there being a possibility of my brother being jealous of me.

After the lunch I felt a lot better about our relationship and the hope of us being able to rebuild the bond we had when we were little, before all the drama and teen angst. We still aren't where I want us, but I will take what I can get at this point. I still have issues with my brother, mainly the fact that he still talks to three family members that treated me like shit and made me feel like the most worthless piece of shit growing up. He knows how I feel about them and the fact that he still talks to them. I know that he didn't have the same experience with them that I did. Not even close. Completely different. But, it still hurts that he talks to the three people that hurt me more than anyone.

I just pray that as we continue to grow and age that our relationship will continue to get better. Now that we both have kids I want us to be able to spend time together so our kids can grow up in each other lives, even though there is a 10 year age difference between them.

Me and my brother. I think he was 3 and I was 4 1/2

Me and my brother at his wedding in 2009