Epilepsy 101 - Part FAQ, Part tips and advice

KarenB

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Thank you Theresa.

He's had 3 video EEGS. One of those was when he was in ICU for 4 days with status epilepticus.

I'm not sure what neurosyche is. No...he's not talking yet. His neuro team have checked for Landau Kleffner, but he doesn't have the characteristic spikes. So his epileptologist can't figure out why the aphasia. He did get seizure control for 11 months wiht the Ketogenic Diet, and made some good gains in fine motor skills (he had terrible hand tremors from either the seizures or the meds, but those have gone away).

We will continue fighting and praying...but the point that I was trying to make that the person who blithely said "Seizures don't cause brain damage" -- need to review the evidence on that, especially the effects on children who are still developing. And...as you have said...you've lost a lot of your memory.

Some people can have seizures without apparent long term effect to their memory and cognitive skills, but in other people, especially children, it can be almost like having a stroke with regard to effects on speech, memory, behavior, cognitive ability -- that's pretty much what we're dealing with at our house -- trying to teach our little eight year old all the stuff he had learned when he was a toddler, but has now lost.
 

cazzy

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bernrds advice very helpful,lot this i did not know,time i follow some of this up but afraid they going muck me meds up smetime they need review
 
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Oh, karen. You are making me cry. I studied lanau Kleffner so bad. For my son. Where are you? What state? PM me I will call you. My heart just aches so much. My son a lot of what your son. Children are amazing, they can regress so much and then grow back. My son was sick because of the depakote I was on. They were only doing studies then. I know that the let downs you feel. that you don't think you should feel. the guilt. The love you have for your child is so extreme you don't know what to do with the rest of it.
 
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And you are right. When you have severe seizures like that they damage. Its like being hit by a pebble in your brain over and over until it is scarred. I am with you. Don't give up. It is a fight.
 
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I just feel like Ive lost it. My seizures make me crazy. I can't remember anything anymore.Please pray for me.
 

Nakamova

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Will do, hope you can get some relief soon.
 

Debbie

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I want to thank everyone for giving me the strength to stand up for myself on what dose of medication to start with. My neurologist is refusing to start low, but I know myself and my sensitivities to medications. I have been on all of them and had to go off due to being forced to start at an adult level. I asked for a peds level.

My neurologist's complaint about starting low is that there is no way to measure how this medication is working at the lower level. I don't know if he is bullying me or if he is right.

Debbie
 

Ruth

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Hi Debbie,

I do not know what your sensitivities are when it comes to medication.

I have allergic reactions to most medicines. My doctor always starts me off on the lowest adult level. I agree with my neurologist because I am an adult, 70 years old.

Your neurologist is right. There is no way for him to tell if the medicine is working or not on a ped level. I always start with the lowest adult dose. That way my neurologist can tell within a few days if I am having problems or not.

Listen to your neurologist about this.
 

Belinda5000

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standing up to a doctor when your angry and he's late!

Does anyone see anything wrong with me standing up to an arrogant doc?
He was over 1 hour late for my appointment lost my files in cyberspace.
The hospital had more of my files they could've gotten but didn't.

I had to tell him my medical history including what meds I'd taken, which he could've looked up on the computer.
Than I was the one that suggested the EEG I hadn't had one in years.
I had it November1st day after I saw him. He was suppose to send results to my neuro who's connected to his hospital by his computer.He hasn't got anything yet.
 

denverboz

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Very, very good thread, not only for those new to epilepsy, but also to share with people we most interact with.
 

momadee

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  • Postictal - You should know that following many types of seizures is a state called postictal. During this post-seizure phase, the subject is *not* conscious. They may laugh, be confused or angry, talk gibberish and/or have a spaced out look in the eyes and seem somewhat conscious - but unresponsive to those around them.
  • Memory - Seizures can affect your memory recall. If you have trouble remembering things, it is likely related to your seizure activity. The good news is that your memories are still there in your head. The longer you go without seizures, the better chance your recall system has a chance to reorganize/heal/normalize and your ability to remember will return.
I want to thank you for all the information that I am getting from you.
 

Ktown12

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Question- Seizures Starting Again?

As a child I had sezires and was on meds from the age of I think 5-13 (being slowly taken off meds at around age 12 1/2 - 13). I had test but it was never known the reason for the seizures.

My question is can they come back. I am 33-years old and have had a few odd experiences in the last few days while laying down. A flash of light a feeling of floating or not completely being aware of what happened but just feeling uneasy.

I am concerned but hate having to try and get into the doctors.
 

denverboz

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Yeah they can come back. I had childhood epilepsy and, save for one seizure in my early twenties brought on as a result of alcohol and drug abuse, was seizure free until about 8 years ago at the age of 55. They came back on a fairly regular basis, like every couple months, all grande mal seizures, ended up in the hospital a number of times. I still feel blessed,realizing many others have it much worse than I do. There's been two extended periods of no seizures, one of 21 months, and one of two and a half years. Than I had the last one last May. What kinda sucked was that I was actually thinking that ,yeah maybe I would risk driving again at some point. That thought is gone forever. Even if I could legally drive, which I could have, I know I just couldn't live with myself if I had a seizure while driving and killed someone.

Anyway yeah they can come back. I myself don't get auras so I can't comment on what you experienced. But if you're concerned, I would strongly suggest contacting a neurologist for an appt, and tell him what you're experiencing, and ask for an MRI.
At the very least you might want to schedule an appt with your primary care physician to discuss.

One other thing. You say you were "not completely aware of what happened but just feeling uneasy". That, to me, suggests you lost consciousness and may have indeed suffered a seizure.

Even if it doesn't happen again right away, I still strongly suggest a doctors appt with your PCP. If you are having seizures, the sooner you can get on meds for them, the better chance you have of somewhat controlling them.

Good luck man!
 
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