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chiari1 · 08-23-2012, 12:41 AM

Quote:

Originally Posted by Darlene

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Eric,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

I have had epilepsy since I was the age of 10, which has been a lonnnnnnnnng time ago. You should see an Epileptologist (Dr. specializing in epilepys) at an Epilepsy Center which are usually at University or big hospitals. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures.

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Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

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