child died

Submitted by web-site-admin on Fri, 11/01/2013 - 21:33

hi all

about 4 years ago I had a 13  yr old that died from JME.  she was having more than 200 abcsence szs a day along with some T/Cs and myoclonic szs as well.

 no one could get a handle on it it was so bad.  she was inn an dout of EMUs and considered for sugery that was a no-go and then had a VNS.  that gave osme elifebut did nothing to stop the petit mals.

she went form doctor to doctor and it just could not be slowed down.

Epilepsy education and awareness

Submitted by web-site-admin on Fri, 11/01/2013 - 18:19

Hello Everyone!

In honor of Epilepsy Awareness Month, I have created a facebook page strictly dedicated to epilepsy awareness. It is called "Seize My Epilepsy". I don't have much experience with this type of thing. So, PLEASE feel free to join, add other helpful links, share your story, and even share pictures. On this page, I have shared pictures of some of the damage done by seizures and the medicine side effects for the non-believers. Please feel free to write and share. https://www.facebook.com/seizemyepilepsy  Thank you!

Awareness this month

Submitted by web-site-admin on Fri, 11/01/2013 - 18:18

Hello Everyone!

In honor of Epilepsy Awareness Month, I have created a facebook page strictly dedicated to epilepsy awareness. It is called "Seize My Epilepsy". I don't have much experience with this type of thing. So, PLEASE feel free to join, add other helpful links, share your story, and even share pictures. On this page, I have shared pictures of some of the damage done by seizures and the medicine side effects for the non-believers. Please feel free to write and share. https://www.facebook.com/seizemyepilepsy  Thank you!

Awareness this month

Submitted by web-site-admin on Fri, 11/01/2013 - 18:17

Hello Everyone!

In honor of Epilepsy Awareness Month, I have created a facebook page strictly dedicated to epilepsy awareness. It is called "Seize My Epilepsy". I don't have much experience with this type of thing. So, PLEASE feel free to join, add other helpful links, share your story, and even share pictures. On this page, I have shared pictures of some of the damage done by seizures and the medicine side effects for the non-believers. Please feel free to write and share. https://www.facebook.com/seizemyepilepsy  Thank you!

Epilepsy Monitoring Unit

Submitted by web-site-admin on Fri, 11/01/2013 - 14:22

HAs anyone here been subjected to being stuffed in to an EMU?

I had the pleasure 2 times. The first time I was in for 10 days and had 2 szs that they claimed were questionable whe nthey were definite.  They took rotten care of me, 36 electrodes on my head.  tehn they said he whole repot was inconcclusice over the while 10 days.  I had my shoulders shrugging one time and the seconc time my legs were going at it.  but they labeled it as inconclusiveand that I was faking.  NOT so!

was this a sz?

Submitted by web-site-admin on Fri, 11/01/2013 - 14:07

hi every one,

I had a very weird episode or possible sz.  About a week ago I went to the bathroom and when done I could not fin my room (which is right across the hall from the bathroom).  I walked around bumping into other dorrways and doors and fell down even once after I bumped into a doorway and knocked my glasses onto the floor and smacked myself in the face.  THen I peed myself and then whatever it was ended.

 I cleaned everything up amd went to bed.

what do you think?

 it is not the fisrst time I wandered eiher.

nancy

Carbetrol

Submitted by web-site-admin on Thu, 10/31/2013 - 22:54
Does anyone know how long it takes until you know Carbetrol (Brand) is really working? My son had a level taken 7 days after having had his Carbetrol dosage increased. The level is now therapeutic. His seizures have decreased after having been on this new dosage for almost two weeks, however, he still has them. Does it take longer than two weeks to totally appreciate the benefit of this medication, or any medication for that matter?

SPECT

Submitted by web-site-admin on Thu, 10/31/2013 - 19:30
Has anybody had an ictal SPECT? If so, explain to me what it shows. Please tell me whether or not it is better than EEG. Thanks a bunch.

Lyrica Withdrawal/Taper

Submitted by web-site-admin on Thu, 10/31/2013 - 19:13
I currently take 150mg of Lyrica twice a day (300 mg a day), along with Lamictal. I don't think the Lyrica is helping my seizures very much anymore, so under my doctor's guidance I am about to switch it out for (generic) Zonegran. I've taken Lyrica for 5 years and with each dosage increase have experienced giddy, "high" feelings, as well as intense shivering, for the first few days. I can only imagine that this high will convert to a low as I come off it, and this makes me nervous.
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