May 12, 2015

Dealing & Living with Pseudotumor Cerebri.

Photo Credit: Pinterest
I probably won't be blogging as much today or tomorrow and here's why. A few years ago (a lot of years ago, 2006 to be exact) I was diagnosed with pseudotumor cerebri. Pseudotumor cerebri is very serious. It mimics a brain tumor in the brain, it is very painful and causes a lot of migraines and a lot issues with my right eye.  Here is the official definition of PTC:

Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are headache,nausea, and vomiting, as well as pulsatile tinnitus (sounds perceived in the ears, with the sound occurring in the same rhythm as the pulse), double vision and other visual symptoms. If untreated, it may lead toswelling of the optic disc in the eye, which can progress to vision loss. 

I also was diagnosed with papilledema, which is associated with PTC. Papilledema just means that because of the swelling in my brain the optic nerves are swollen and have been detaching. My vision in my right eye is not so good. PTC can occur when there is a a brain injury (which is my case) or when you can a lot of weight in a short amount of time. 

I deal with really really excruciating  migraines, vertigo, and some bad eye pain. Right now I have a really bad migraine which is affecting my eye. it feels almost like a knife is going through my eyeball and coming out the back of my head. And I'm also dealing with Vertigo. For those of you that don't know where to go is vertigo is almost like you drink too much and see everything double you have no balance and you feel like you're going to fall on your face when you try to walk.

A few years ago my neurologist had mentioned getting a cerebral shunt. I did not want to do that. I told him I'll just keep taking my Diamox and my Topamax and continue getting my lumbar punctures. A lumbar puncture is a spinal tap basically. what they do is they just of course but a needle in your back and drain the fluid from your brain that's it. It is very painful but I'm used to the pain already. It's like getting an epidural over and over again.

When I have these migraine attacks, I stay home from work which I hate and stay in my room which is very. The light bothers me, sound bothers, everything bothers me.

I know you guys are probably asking what brain injury. Well when I was 17, I had my first child. Yes I was young but in my defense I went on to graduate high school with perfect attendance and a 3.2 GPA and went on to college. My daughter's father was very abusive. Teen domestic abuse is real and it's getting more serious. I was kicked and stomped on (my head), I was punched in the back of my head, you name it, it was done. I was not in a relationship with him when this occurred. I had a restraining order and called the cops every single time and nothing happened.

I'm 31 now, my oldest will be 14 in July and I'm grateful that I have a loving husband that helped raise my daughter as if she were his. She loves to read, loves sports and absolutely loves color guard.We also have a son that will be 7 in July. He is extraordinary, artistic, and a joy. He was diagnosed with Asperger's but that is another subject we can talk about in another blog post.

This is the result of those injuries. I have to live the rest of my life with painful and debilitating migraines.

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  1. I know this sounds trite, but I am so sorry you need to experience this. I pray you will find relief.

  2. Helen, I never knew your struggle and I am so sad this happened to you. I am very proud to call you my friend and hope that you know that you loved. Thank you for sharing your story.

  3. It's something I've dealt with quietly. But I'm ready to finally talk about how it happened. It could save someone's life. Love you too my friend! I'm grateful that we've been friends since kindergarten. *hugs*


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