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Comment by Julie on April 4, 2013 at 2:59pm

Thank you Shelby.  I went to the brainline.org site and read the lost and found.  Wow, does that say it all, or what?  My daughter has been telling me all that.  I cannot even imagine what she is going through.

I forwarded the site on to her so maybe it will make her feel less alone.

I talked to her yesterday and she is weaning off the Keppra and is on Dilantin now.  It seems to be treating her much better.  She seems more lucid and less rageful.  She said when she was on the Keppra, she felt like "pure Id."  

Thank you for reminding me that the surgery causes brain injury.  I have to remind myself she needs help.  Lots of it.  I am thinking of moving right by her so I can be there for her every day.  I'll ask her what she thinks of that first, though... ;)

Comment by Shelby Melton RNS on April 4, 2013 at 8:38am

*traumatic brain injury is what I meant

Comment by Shelby Melton RNS on April 4, 2013 at 8:35am

Julie I apologize for the delay in response. Have had quite the eventful few days. I can definitely relate to the personality changes. I have fluctuated with the hostility since the surgery. I think it is a combination of the area of the brain and the medication. It may be worth a shot to try other medications. Seizures can cause more problems with the brain. Her anger comes from a lot of places hard to understand by others. The surgery causes brain injury regardless of the skill the neurosurgeon. The brain controls our emotions. She may be depressed and that could exacerbate the anger. My surgery was done in 2010 and i still battle the fatigue, depression, anger, ect. She may be dealing with some cognitive deficits not noticable to everyone else and that made me angry as an educated individual. She feels like no one understands and that things have been turned upside down for her. I went off my seizure medication 6 months after my surgery and did not have any seizures until 2years later. Now back on the Keppra. Unfortunately, this may be her new "self" that could take years to improve. I have done a lot of research and have experienced all these terrible emotions myself. I can assure you, she does not like it any more than you. Websites I have found helpful are mostly teaumatic brain injury sources since that is what we are dealing with here. They can give great insight into the changes her brain has undergone. There is one in particular-brainline.org-that features Lost and Found: What Brain Injury Survivors Want You to Know. Excellent for family and friends of brain injury survivors to keep and refer to often. I know this is difficult for you. I hope this helps :)

Comment by Julie on March 29, 2013 at 4:41pm

Hi Shelby. I have a question about Keppra.  My daughter had tumor resection Feb. 11 (she is 30 years old) and we were told she will be on Keppra for six months.  It has made her crazy.  Even now that she is off the steroids, she is tired and sleeping all the time or angry.  

My question is, are the side-effects out weighing the benefits?  I have heard my whole life that seizures, in general, although unpleasant, are not life threatening and cause no long term damage.  If she can get her "self" back at the risk of having a seizure or two, wouldn't that be better?  I apologize for sounding ignorant.  The docs are now going to change her to an anti seizure med that might eat up her liver, so she will need blood tests every week.  That doesn't sound too promising.

Any insight or ideas?

Thanks so much for listening.

Julie

Comment by John on January 14, 2013 at 1:18am

The Vimpat was tolerable though I think it did make me a bit more emotionally unstable and a bit off. Since it is an anti-epileptic drug, I don't think it helped very much with my organic non-epileptic episodes.

Comment by Shelby Melton RNS on January 11, 2013 at 7:24am

I am glad you are finding the information helpful :) The generic for Keppra is levetiracetam so this would be the same medication. It should work well as long as it is used in combination with another anti-seizure medication. I am finally at a point where I am able to see a neurologist again and hopefully get my medication situation sorted out. How are the side-effects of Vimpat and lamotrigine? Will have to have something added to my regimen. Afraid I may not be as controlled as I thought. Seizures are funny things. You can have certain types without really knowing it until you have a big one. A scary thing to live with :/

Comment by Ed on January 10, 2013 at 5:45pm

I am taking Levetircetam with Lamotrigine for about 3 years now and seizures have been under control. I was taking Keppra but it was to expensive.

Comment by John on January 7, 2013 at 9:45pm

Thanks Shelby. I'll look into this with my NO and epileptologist. Keppra has been my main AED, though I did take it with Vimpat for a period of time.