Oh Noes... I have PTC

I was diagnosed with Pseudotumor Cerebri (Idiopathic Intracranial Hypertension is it's newer name) on November 29th of 2011. I started to experience double vision on the 26th but was told by the urgent care doctor that it was probably an ocular migraine and would most likely go away. When it didn't I called my primary who referred me to an ophthalmologist who I saw immediately. Both of my optic discs were swollen (papilledema) and she sent me down to the ER.

Luckily for me she called my primary prior to sending me and he is amazing and wonderful and had a neurologist waiting for me in the ER. After doing a neuro exam he explained that I would have an MRI which would most likely come back clear because I probably had something called Pseudotumor Cerebri. PTC is when your brain doesn't effectively absorb the cerebrospinal fluid it makes.

Everyone's body makes cerebrospinal fluid. It surrounds our brain and spine and does all sorts of great things. It gives us nutrients, takes away waste, and protects those important things from injury. Normal people are constantly making and absorbing this stuff, I on the other hand just continually make it. I am special, but not in a good way.

Once my MRI did in fact come back showing only insane amounts of fluid in my brain we got prepped for the spinal tap. Oh, did I not mention that? There are two indicators of PTC, papilledema and increased pressure during a spinal tap. Awesome. A spinal tap is also a way to relieve the elevated pressure. They do the tap and my pressure is off the charts. Their little gauge goes up to 55 and my pressure is over 60 (we had to do some math). When he was done it felt like my head was actually lighter. Below is a picture of spinal tap number 1.

So he sent us on our way with a prescription for some meds to keep my pressure low. Here I am thinking that this all done now. I take these pills and everything will be ok. How wrong I am.

Two days later I was back in the hospital with the worst headache I had ever experienced. They admitted me, gave me a CT because they were afraid I had bleed in my brain (I didn't) and then did another LP (lumbar puncture - aka spinal tap). My pressure was already up to 40. That was when I realized that this wasn't something that was just going to go away. I was sent home the next day armed with migraine pills and a much more somber outlook on things. And below is spinal tap number two. That little tube is hooked up to the needle in my back and then the long thing he is holding is the gauge.

I started researching online. Everything I read that had been posted by people with PTC was horrifying. They couldn't work, they were getting headaches everyday, they had been shunted and were still in horrible discomfort. I was petrified. In addition to that were the people complaining about the Diamox (the medicine used to keep pressure under control). It makes you tired, your feet and hands tingle all the time, it is impossible to function while on it. I mean, I understand that everyone has bad days but it seemed like these people lived bad days.

So I started making a list. Things I could do with PTC and things I couldn't do with PTC. At first there were only two things on my list... bake 8 dozen cookies and stand in my kitchen and cry but they were both on the CAN side so I was heartened. So far, my can't side only has three things on it, drink soda (side effect of the meds), sleep in bed (this has actually been moved to the CAN side), and head bang.


So I guess what I'm trying to say is the point of this blog is to prove that it IS possible to live a normal life with PTC. I know it has only been twoish weeks but things are already starting to get better. I have a nearly full bottle of migraine meds to prove it. For me, the Diamox is working and although I get home from work and pretty much want to conk out at night even that is getting better.

So, let's get this shit managed I guess... : )