Hey I'm Eric! Here's my story...
 

Hello everyone! Very glad to have found this group.

About a month ago I was playing video games with a friend when the back of my head hurt and started swelling. I got extremely scared and thought I was bleeding from my brain stem and might die.

The world got shaky and started going dark. I panicked. I fell to the ground and told my friend to call 911. I was so sure I was going to die it was unreal. I had never had a brain injury or problem before, ever.

I was 100 percent certain I was going to die.

Instead I ended up lying there unresponsive and having a partial seizure while my good friend Franki cried and called 911. I could barely walk so they took me out on a stretcher.

Time and space were very distant for the next hour or so. It felt like I was on the floor for 5 minutes, but Franki told me later I had been there for about 30 until the medics actually took me out.

The doctors did a CT scan and gave me a general headache diagnosis. They said I just need to be careful with the jiu jitsu, which was what probably caused most of this to happen.

If only it had ended there.

The next week almost the same thing happened. The same friend, bless her, was there twice. This time she didn't cry because last time I survived, but it was still scary. She held my hand and talked to me to make sure I didn't go unconscious like last time.

Again, we ended up at the hospital, but with nothing to truly diagnose.

A third time was right after visiting a neurologist and having some medication. The medicine must not have agreed because I collapsed in the grocery store. My chest was pounding and I could barely breathe.

Another hospital room visit. My mom drove me.

Finally, a 4th time I was sitting downstairs watching TV when suddenly it struck without warning. I could barely breathe. The muscles weren't collapsing and expanding properly.

I was scared so I came upstairs, but it only got worse. My parents watched as I struggled to breathe and for the first time in my life, I saw my mom cry.

This time I wasn't driven to the hospital. I had to be brought out on a stretcher. I could barely move, let alone walk. My spine was on fire.

In the hospital, they immediately took me to my bed and asked me questions about my condition. This was a mistake. The stress of being asked questions caused me to have another seizure similar to the one I had originally had with shaking and eyes rolling back in my head.

(The doctors claim these aren't seizures but I don't know what else to call them).

I had several more episodes in the hospital and was run for numerous tests. At one point when my symptoms were really bad in the hospital I was crying incoherently and thought I was going to die.

I didn't, obviously. I was released a few days later with white matter disease, which is more a symptom than a disease really.

Walking out of the hospital was tough. My heart would jump up a few beats or drop in a few seconds time. It was painful and frightening. I had to be put on Ativan because of the anxiety effects it had on me.

Now that I'm back, I've had to move back in with my folks to make sure my health is maintained. I've been eating mainly vegetarian and low inflammation foods. I've only had a few minor episodes since coming out, but the symptoms still haunt me, even right now as I'm writing this.

Why I'm Here...

I'm here because I'm scared. I have been through hell this past month. I've experienced some of the darkest, most horrifying moments of my entire life and the true, intimate fear of death.

I haven't been fully diagnosed. They know I have a mild chiari 1 malformation which explains most of my symptoms.

But there is also some brain scarring. No one has been able to tell me what's causing that. And it scares the hell out of me.

Here's my MRI
(*edit* sorry no linking for new members)

(That would be an image but I don't have enough posts :(

You can't see the chiari 1 but you can see the brain scars very clearly.

It's scary knowing that some part of my brain is dead and the doctors don't know exactly why.

I've thrown out a ton of theories including aspartame, cell phones, blue tooth, fluoride in the drinking water, preservatives in food and even alcohol, but not a single one makes 100 percent sense.

Plus, I've cut all those things out of my diet. And my symptoms don't seem to be getting better :(

I forget stuff in the middle of doing it. Literally I grabbed my phone just today to look something up and totally forgot why I grabbed it in the first place. It was like I was suddenly teleported into another person's body.

That's been happening now for a few weeks.

I see the doctor again this coming Thursday. She's one of the best and I have so much faith in her abilities. Hopefully I'll get a follow up MRI as well to see how this thing is progressing.

In the meantime, I would love to be friends with all of you! I have such respect for anyone struggling with a neurological disease having experienced the pain and fear first hand myself.

I've cried more in the past month than in the last 2 or 3 years combined.

So message me and let's chat. I would love to meet you and share stories and provide support!

Thanks everyone!

Nice to meet you!!
 

Welcome Eric,

Sorry to hear about your frustrating ordeal. I have to agree with you it sounds like seizures and I think they affect the white matter in your brain. but it could be something else.

Anyway, I know it has to be scary. I hope you find the answers your looking for through Neurotalk and hopefully some really good tips.

Hey thanks for the support!

I actually did see a doctor specializing in epilepsy a few weeks ago. I was prescribed with a mild anti seizure medication.

It was right after I just started taking the medication that I had some of my worst episodes yet, including the one that I had to be admitted to the hospital for. My symptoms were so bad I couldn't walk and could barely breathe. It was scary.

It's not epilepsy, we know that for sure.

As for what exactly it is...other than the Chiari 1 which should go away on its own, the brain scarring is a mystery. Trust me, I've stumped a lot of doctors. That's why I'm so scared and frustrated.

Either way I am recovering! Today was the first day I went without medication and had no major problems!

Would still love to talk and maybe skype with some of you folks sometime. Let me know :D