Silly Boy

[KikiLeigh02]

He's a total trooper! I totally understand, I felt relieved when she told us it was Epilepsy because at least it was an answer instead of more questions! Did you have any side effects from the Keppra? He had to have a B6 supplement with it to counteract the behavior/personality changes it caused.

 

[Tesumph]

He's a total trooper! I totally understand, I felt relieved when she told us it was Epilepsy because at least it was an answer instead of more questions! Did you have any side effects from the Keppra? He had to have a B6 supplement with it to counteract the behavior/personality changes it caused.

Yes I did. I started on 500, went to 1000, and then 1500 like the medication label said. Next time we went to the neurologist I told him I was on 1500 and he went “why so high?!” I said, you tell me!
The first week I slept constantly. Then I had the worst insomnia of my life. Then I went back to constantly sleeping and got a little sick of it. Also had severe vertigo all the time, tilting my head just a little would make the room spin which made me constantly feel like I was having a seizure aura. Had some issues with appetite loss too. The only other supplement I’m taking is folic acid because my seizures follow my lady hormones and that’s supposed to help?
I’m back to 500 a day now (doc doesn’t know..) because I was so sick of the side effects. It’s working like a charm, sooo...
It might have caused some depression and mood swings, hard to tell given the sucky situation lol. I feel pretty normal now, besides being unable to go out in the heat.
(Sorry for the essay haha, I don’t often get to talk to anyone else who’s been through this!)

 

[KikiLeigh02]

His insomnia was awful when he first started Keppra, then he turned into a little demon spawn. He got super agitated, aggressive, and moody. It was awful. He'd always been so sweet and happy. She called the B6 in and he was back to himself in about 2 days. He's on a 300 mg dose 2x daily, and 20 mg dose of B6 2x daily. His neurologist told me that in some people the Keppra will deplete their B6. Worked like a charm! I remember reading about womens cycle effecting the frequency of seizures and wondered if the information was accurate. I'm so sorry, I think it makes it worse because most people aren't open about it. I'm really grateful that my MIL keeps him, because people panic when they hear Epilepsy.

 

[Tesumph]

His insomnia was awful when he first started Keppra, then he turned into a little demon spawn. He got super agitated, aggressive, and moody. It was awful. He'd always been so sweet and happy. She called the B6 in and he was back to himself in about 2 days. He's on a 300 mg dose 2x daily, and 20 mg dose of B6 2x daily. His neurologist told me that in some people the Keppra will deplete their B6. Worked like a charm! I remember reading about womens cycle effecting the frequency of seizures and wondered if the information was accurate. I'm so sorry, I think it makes it worse because most people aren't open about it. I'm really grateful that my MIL keeps him, because people panic when they hear Epilepsy.

Hm, I should start taking B6. And yea, something about hormone fluctuations can lower the seizure threshold. I’m very thankful that I’m surrounded by supportive family, although one side is very anti-medicine and medical world, while the other side wonders why I haven’t done 10x more tests by now. They all love me the same.
People DO act pretty weird when they learn about the seizures. Outside of family members, not many people know. It’s easy to talk about online but IRL it’s.. different, and a little embarrassing. Very frustrating when you just want to vent about it without being treated like you’re fragile? if that makes sense. That’s why I’m getting chickens again, to get out of the house without needing someone to drive me, and have a hobby where I can do things independently.

 

[KikiLeigh02]

We struggle with that too. I don't want to teach him to hide it, because it's not something for him to be ashamed of. I don't want people to treat him differently though. If they're going to be around much they have to know, I can't have someone running around panicing. If we're home our little rescue Shih-Tzu will alert a couple minutes ahead but he has to be with him. Love that dog.