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home from the hospital


CagedBird

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First of all THANK YOU all so much. Your comments and support really meant a lot to me. You guys really knew just what to say. Well the good news is I was discharged from the hospital so I am FREE AT LAST! no more electrodes stuck to my head, no more iv in my arm, no more confined to the hospital bed and calling the nurse to help me to the bathroom. Being back in the hospital was not a good feeling. I really had some break downs in there. Like what if I have to have brain surgery for them to stop the seizures? What if I have to get my hair cut off again? It was just like I was 12 years old again, my mom sleeping in the pull out chair next to me and helping me with my food. ...

Wow I just got de ja vu. It was like de ja vu of me having a seizure a long time ago as a kid. Its crazy my mind went back to that same time and place like I could see it just now. very weird....

 

Anyway so yeah the good news is Im back home (still in charlotte). I decided to just buy a bus pass for the month instead of driving for a while. My dad is going to put my bed against the wall so I wont fall between the crack. Also good news is I am going to keep getting my disability money since Im in a grace period so even though I had to take 2 weeks off from work I should be able to pay my bills this month and I got family medical leave from work so I should still have a job when I go back.

 

The bad news is I did not have a seizure the whole time I was in the hospital. I did feel light headed and dizzy at times but I might can just blame that on my head being wrapped and taped in electrodes and me laying in bed for 5 days. I did have a couple jerks in my sleep the doctor noted. During these times he would see a discharge from my brain meaning it couldve been a spark of a seizure. I wish he could've actually observed one and seen where they are coming from in my brain because now all we have to go on is theory and his opinion from prior experience.

 

We did everything to make me have a seizure. They took me off my keppra on Tuesday, flashed lights in my eyes for 3 minutes everyday, and had me blow into a pinwheel for 3 minutes everyday but nope no seizure. When I would jerk in my sleep and during naps, this was all the doctor had to go by. He gave me klonopin in addition to my regular keppra. I tried the klonopin last night. It was great. It knocked me out and I was not even scared to fall sleep. I hope it has the same affect tonight!

 

I asked if my brain rewiring (using my left hand more) could be triggering the seizures. Each time I have the seizures the first thing that happens is my left arm begins to jerk. (This did not used to happen.) Since I have seizure activity where I had the brain damage, the doctor believes it is certainly possible. But he told me that doesnt mean I should stop using my left side. We just have to figure out the best medications that will fight the seizure activity. Considering we did everything including taking me off my keppra for 5 days, and I still had no seizure, my doctor said I have a low tendency for seizures. This is good news but as I said before I still wish I couldve had at least one. I feel like I still have no answers and will just have to hope for the best. Well Im about to shower now I love you guys

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Guest hostwill

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Katrina the jerkiness you get, could be Spasticity, I am on a med called tizanidine for that but I used to have seizures too , but, not since I have been on Keppra. I think the plasticity of the brain is still taking place, which is why it's so important to keep the affected side moving, so the brain can know, things are still active there.

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Katrina :

 

glad you are home with family to take care of you. I hope & pray you never get any seizures & can go on with your life.

 

Asha

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I am glad you are out of hospital. Hopefully the medication will mean you are seizure free for a while. The low tendency to seizures is good news. Just take it easy for six weeks or so while you build up your strength and confidence.

 

(((hugs))) from Sue,

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I think I know how you must feel getting out the hospital and back to your own house and bed. Hope the doctors and the tests you had discovered more about seizures.

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