This is long, I apologize! I wanted to share...I was reading other posts and my story is a bit different but if there is one person in the world I can help...I will share!!

I had always had headaches...and migraines run in my family. So I always thought that was what they were...but they never incapacitated me like everyone else in my family. I could still watch TV, listen to music, even get up...they just were. So when I got hit by what I am about to explain, I had no clue that this was possible...that it would lead to everything that it led to. I just never knew these things really, truly happened!!

On July 1st, 2009 (yes, I remember the exact day, the exact place that I was!) I was out to lunch with my grandmother when I all of a sudden, out of absolutely nowhere, got hit with this pain in my left eye. I could not explain it at that time. I thought maybe I needed to change my contact, or maybe I was getting a migraine. So when I got home, I changed my contact. Did not help at all. I took some medicine for a headache. Did not help at all with the eye pain! I just dealt with it and thought nothing of it, really. (At this point, a headache was always something I dealt with, I just never let it get the best of me!) On July 4th, 2009 (yes, 4th of July!), my family and I were out watching fireworks and during the fireworks, I felt, I don't know how else to explain it, weird whenever the fireworks would reach the sky and explode into a bright flash of lights...and I did not know I was doing this, but every time they did this, there was some sort of reflex in my mind that made me turn my head and not see them. And that feeling would ease a little bit. And then I'd look back...rinse and repeat! Afterward, while walking back to the car, I told my mom that my body felt a little bit shaky. So I was a little bit sketchy about going to see fireworks the next night, too! But I had absolutely no clue that the next thing would happen...how could I?! I was taking pictures of the fireworks and two minutes into them, I was into a full blown seizure. I mean, my family had absolutely no clue what to do! So my brother ran and got the paramedics and I was rushed to the hospital, which was about three minutes away from there. In the emergency room (or so I am told), they could not stop my seizure(s). They put me on a drip of Dilantin (an anti-seizure medication) and squeezed the bag to get it to go in quicker, but that did not even help. They were also using Ativan (Lorazepam) to help stop the seizure, but these things did not help. Somehow, I have no idea how, they eventually calmed it down and I believe it was forty-five minutes before the seizure was stopped. I was, needless to say, admitted into the hospital and they ran many, many tests, including an EEG (reads your brain waves and will also show seizure activity, like where it was coming from, what kind of seizure it was, etc.) This showed nothing. However, I was put on Dilantin to go home. The whole two days I was in the hospital, I have no memory of. So I started to take this medication at home. The next thing I remember was being alert and that dang eye pain was still there! A month later, I had another seizure...only this time, it was a lot worse, in my opinion...I could not move my right left after. It just would not move!! That scared the heck out of me! So my mom and stepdad took me to the emergency room and the doctor (he was fantastic!) treated me for the eye pain (it always got worse after seizures) and my leg being stuck. Treated it with Valium (Diazepam) to try to relax it. That did not work. I was sent home with my mom being told that if it did not go away within forty-eight hours, to bring me back because it could be something called "Todd's Paralysis". That was just odd to us. How could that happen? So two nights later, I was taken back to the hospital, as I could not move my leg still, and I ended up with the same doctor. He treated me the same way, pain medicine, muscle relaxer (that could also prevent anymore seizures), and nausea medication. He also admitted me into the hospital immediately with the note that my mom did the right thing bringing me back. I was admitted and all sorts of tests were run on me (I hated this!), CT scans, blood work, X-rays, and, annoyingly enough, an LP to make sure there was no infection in my fluid (they were not checking pressure at this time!). All came back normal, which was good, but frustrating too! If everything was normal, why is my leg stuck!? So a physical therapist was sent to come in and work with me. She said that she could feel me trying to move my leg, but that it was stuck. So on the fifth day of my leg being stuck this way, I was told that they were going to send me to a long-term rehab facility at another hospital so that my leg could be worked on and I could get it moving (CREEPY!). I was given Ambien (Zolpidem) that night (I have taken this for about five years now to help with sleep) because I told them I would not be sleeping knowing what was going on. My mom told me that she walked past me in the middle of the night and touched my foot and I wiggled my toes, but the doctor told us the next morning that it did not mean I had gotten it back. However, when I woke up, I could move my leg!! So I was checked out by the physical therapist to make sure I could walk and such and then sent home that day with an order for outpatient physical therapy! (I know this does not seem like it will add up to anything resembling Intracranial Hypertension OR Pseudotumor Cerebri, but trust me, it started this way!!)

I had seizures a lot, pretty much whenever there were flashing lights (emergency vehicles, lightning, fireworks, etc.) around me. Sirens caused them, too. However, nothing ever showed on my EEG's. I had the worst Neurologist in the history of Neurologists. He told me that the were being caused by stress. Now knowing myself, I knew I was not really a stressed out person. Yes, I had occasional anxiety, but who doesn't!? So I was not buying this...at first. Eventually, I told myself maybe I should try to think of it that way. I explained my "headaches" to him the whole time I saw him as it feeling someone was pushing my eyes out of my head. That I felt a lot of pressure. He did not listen. He laughed it off which really upset myself and my mom.

There were way too many emergency room visits to count and think of, I can't remember all of them after seizures! I just remember my eye pain was getting worse and worse. By the time I had anyone think of what I was describing, I had one of the best emergency room doctors and she decided that since the medication through IV was not helping (very strong pain medicine, nausea medicine and an anti-inflammatory), they would send me home and if having prescription pain medicine did not help, then I would need to come back in a few days and they would have to do an LP to check my fluid, but we did not understand why, really! So in three days, I was taken back and that is exactly what happened. She was my doctor again, actually. An LP was done and my pressure was not as high as most people would deal with...it was twenty-five. However, a Neurologist was contacted and he told her to start me on Diamox. (Let me just explain right now that a pressure of twenty-five is high for someone with Pseudotumor Cerebri...it is not normal. A normal pressure is about ten - twelve.) I went to see him outpatient, which was about August of 2010, and also a Neuro-Ophthalmologist, who ran tests and found out I was losing some of my peripheral vision, but had no swelling of the optic nerves. With those results, he watched me while on Diamox and the occasional spinal tap...which, eventually, became every week and a half - two weeks (I could not walk after them for about three - five days).

In November of 2010, he sent me to a Neurosurgeon to have a VP (Ventriculoperitoneal Shunt) placed in my brain because not only was the fluid causing pain, it was the cause of my seizures). When I saw the Neurosurgeon, we talked about me having the shunt placed as soon as possible and in a week or so from then, I was at the hospital at six AM, being prepped for my first brain surgery...

I was terrified. I did not think to ask many questions (what do they do, how will it work, etc.). I think I drove the nurses crazy!! I was taken back to the operating room and set up on the table for the Anesthesiologist to get me all good and drugged and knocked out for the surgery to begin. (RIP hair!) When I woke up, I was in the Intensive Care Unit (ICU) and I do not fully remember that moment! I am sure I was pretty drugged up! I remember it hurt. And I remember that I did not want to move. They did not only cut into my head in two spots (one MUCH bigger than the other!), there was an incision in my neck and three more in my stomach (the shunt drains into the peritoneal space). I honestly remember my stomach being more sore than my head was...

I spent a day and night in the ICU. I was taken down to have a CT scan done of my brain to make sure the shunt catheter was placed in the right place and such. It was. The next day, I was moved to another floor, another room, to spend more time in the hospital recovering. And on the third day, I was released and home! It was not a bad experience then...I do not have many bad memories about the first time.

I could not ride in a car for two weeks, so two weeks later I had an appointment at my Neurosurgeon's office to have my staples (in my head) removed. I hate having staples removed! They sting when they come out! I told him, at that time, I was feeling a bit better...I thought I was! But in a few more weeks, he had to adjust the setting of my shunt (to make it drain more/less, depending on how I felt). I explained to him that I still felt the eye pain (feeling that my eyes were not only being pushed out of my head, but into my head at the same time...squished, basically). He put the magnet up to my head, that adjusts the setting, and turned the setting down (to make the shunt drain more). This basically went on, going up and down, for months. I was also on pain medication, nausea medication, and something to relax me all of this time. It was not helping. I was also still on Diamox, which I should not have needed after the shunt was placed. We shall skip to May 2011...

In May 2011, I had been getting very, very sick for about two - three months now. When I say sick, I mean throwing up every single day, very many times a day. A sip of water could make me throw up. I was admitted into the hospital by a woman at my Neurosurgeon's office and put on IV everything; IV fluids, IV steroids, IV nausea medication (around the clock), IV relaxation medication (every eight hours) and an IV pain medication pump (hit the button when I needed more). I was kept in the hospital this was for five days and many, many tests were run. No adjustments were made, however, and when I was sent home, I was excited...but only because my vacation was a week and half away!

I was not myself on vacation. I was nauseated constantly, had no energy, I just was not me. So we were home in Mid-June, 2011, and I was back in the emergency room very quickly...and admitted. In July, my Neurosurgeon contacted me, while I was admitted, and told me that they were going to discharge me, this was a Monday afternoon, but he wanted me back at the hospital at six AM to be back in the operating room...he was going back in my brain to switch out the valve. I was so glad...that is a little sad...

July 21, 2011, I had my second brain surgery. A tiny seven months after the first. My surgeon went back in and switched out the valve. This was a lot less painful because he only had to go into my head. However, about two days after being released from the hospital, I was delirious at home; my mom found me on the floor with no memory how I got there and I had something called "drop-wrist." This is basically when my left wrist was bent and whenever I straightened it with my other hand and then let go, it would fall right back down. I was taken back to the emergency room and it was found out that I had an infection from the surgery...in my spinal fluid. I was admitted and put on many medications, including a strong antibiotic, and I am not sure exactly how long I was there. My wrist was also put in a wrist brace until I could get it back to straight and have the strength back. That took a little while. And that was scary...an infection from brain surgery!!!

After this, I went back and forth with the fluid level being adjusted again...being sick and not sick, etc. I was admitted into the hospital many times, all while they tried to find out why I was getting so sick. In August 2011, they did a Nuclear Scan of my gallbladder to see how well it was emptying, hoping they had found the problem...but they hadn't. It was fine. However, after that test and them emptying it completely, I had gotten a really, really bad pain in my right side. It was like a muscle spasm so deep inside...it hurt so bad. I believe it was September 6, 2011, I was admitted, once again, into the hospital and they found out I had "sludge" in my gallbladder and that was taken out immediately, hoping it solved my sick epidemic. It did not really...

Let me skip back a little to April 2011. After my first brain surgery, I had no more seizures. Until April 2011. I had a seizure like never before. This was worse. This lasted longer. This was dangerous. I was taken to the emergency room then by the paramedics and treated for it. I remember waking up in the emergency room. I was so sore!! And in May 2011, I had another...but I had also had pink eye in May and I was in my mom's bathroom cleaning out my eye and I went into a seizure and took her bathroom sink out of the wall. They had to turn the water supply off to the house. This time I was admitted and put on an anti-seizure medication called Tegretol.

Back to September 2011. The gallbladder surgery hurt really bad but I felt a little less nauseated constantly. I guess it was not only my pressure but my gallbladder made it worse. It took a little while to heal. That was a really painful surgery.

October 2011. I had a seizure in the middle of a CVS (Drug-store) and was taken to the hospital and admitted, yet again, but into the ICU this time. I was having a lot of seizures and could not catch my breath and was very, very close to being put on a ventilator. Eventually it calmed down, with the medications, and they were trying to get me into John's Hopkins (has been ranked the number one hospital in the United States for many years!) seizure center, but they could not get me in. I was sent home with my anti-seizure medication (Tegretol) being increased and from then until May 2012, I was fine and had no seizures.

In December 2011, I was in the emergency room again, for throwing up and the eye pain, and was transferred by ambulance to John's Hopkins. This was the first time I was admitted into Hopkins for this. Hopkins has a center specifically dedicated to Pseudotumor Cerebri patients. I was sent for testing (an LP done under X-Ray and such) and I met my new Neurosurgeon. He is the best. Within fifteen minutes of meeting me and hearing how I got sick from sitting up or standing up, he knew exactly what my problem was; my shunt was over-draining. I had to lie flat until the anti-siphoning device could be inserted surgically. My shunt was also turned all the way up.

I have not had health insurance for some time, so it took time for my next surgery to be able to be done. I was in the emergency room many, many times, had quite a few more spinal taps (should not need them with the shunt in!). Then, in January 2012, I was taken for a Nuclear Scan called a "Shunt Patency Test". (They inject radiation right into your shunt and watch it flow to see how it drains...yes, a needle right into your head!) Mine showed the results we knew of already; my shunt was malfunctioning and not draining how it should.

In February 2012, after being in the emergency room again, I was told to call the surgeon's office the next morning and get updated information on my surgery scheduling progress. I called and when they called back, they told me I was going in for surgery that Friday (this was a Monday). I was so excited! It was two days before my birthday, but what more could a girl want for her birthday than to have exactly what she needed done!?

That Friday, I was at the hospital at six AM and prepped for surgery. I was not sure what was going to be happening because I did not know much about these anti-siphoning devices, but they did not have to go into my head again...it was placed as like a "break" in the catheter, right under my right collarbone! That was exciting! Upon waking up from that surgery, I was very sick (got sick twice before they got me out of the operating room), but that was from the anesthesia. And that was the last time I got sick!!

My shunt had to be adjusted once after this...in March 2012. And in May 2012, I saw my new Neurologist for the first time. My shunt was then turned up more and since then, it has not been adjusted. I have been feeling the best I have felt in my life. I have no eye pain what-so-ever. I have no nausea what-so-ever. I have my energy back. I have my appetite back. I am always in such a great mood! I sleep better. I am off of EVERY medication except for my anti-seizure medication and my betablocker (taken for a fast heartrate, but also helps with headaches). It has been fantastic. My Neurologist told me a week ago that my scans look better than ever. My ventricles used to be collapsed; you could not see them on scans. They are now so clear and normal.

It has been a long, hard road and I know others go through many problems, some very different from more, but I can tell you from experience, there is hope and it is worth fighting for! I would not change a thing about what I have gone through. It has made me strong, hopeful and so happy. It was all worth it. I would not be who I am today if I had not gone through something so difficult!

Hold on to your hope, everyone who is dealing with this or Intracranial Hypertension. It will get you far!