out come

Holly - posted on 03/13/2009

My husband and I both have epilepsy so I've been in the position your daughter is in. I would love to hear more about it. Is she having absence seizure or convulsions? How old is your daughter? Do you know what meds they might be putting her on? I would love to talk with you about it. I'm sure that it is very scary having your daughter just diagnosed.



In case you're interested I will lay out the details of my experience and my husband's with epilepsy. Don't feel obligated to read it. You can if you want.



Myself: At age 8 I had a grand mal during my sleep. I then continued to have seizures during the night and went through an eeg and cat-scan. The cat-scan determind that I am one of the people who has epilepsy for no reason they know of (idiopathic). The doctors put me on Phenobarbitol which controlled my seizures. However, I suffered mood problems because of it and decided to stop taking it at 14. I decreased gradually and thought that I was safe, after all my mom, a nurse, was supervising. At a recent neurologist's appointment I realized that the seizures I had that kept increasing were actually withdrawal seizures from going off of the primidone. I guess that's the reason we see neurologists! Then I tried Tegretol which was not very effective and Depakote which caused both a horrendous rash and increased seizures. I then switched to Primidone (very similar to Phenobarbitol) hoping it would give me the same control but less mood effects. I've taken Primidone for the last 10 years. It's effective but still has mood effects. I'm in the process of trying Lamictol. It will take a couple months more to see if it is effective. BTW, my seizues only occur during sleep so I am lucky to still be able to drive even if I have a seizure.



My husband: He had his 1st grand mal at age 7. After this they diagnosed him with epilepsy and figured out that the "blurry eyes" that they kept taking him to the eye doctor for were actually small seizures. He's been on many medications, Phenobarbitol, Depakote, Tegretol, Keppra, Lyrica, Trileptol, Topomax and many more. None has controlled his seizures completely. He has also had 2 brain surgeries, the 1st at age 12 and the 2nd at age 20. The 1st did not work at all possibly because he stopped taking his medication without his doctor's approval. The 2nd got rid of all but the smallest seizures (the blurry eyes) for almost 5 years but they gradually got bigger until Thanksgiving of 2004 he acknowledged that he couldn't drive anymore. Since then his seizure have gotten larger and more frequent until he cannot work anymore. 6 months ago he got a seizure alert dog and since then he has not gotten injured. He still has as many seizures but not having broken bones or other injuries is a real relief. He currently takes Depakote, Trileptol and Topomaz and is in the process of decreasing the Depakote.