jemsister
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Hello to you all, it's very nice to meet you. =) My name is Josie, and I was diagnosed with simple and complex partial epilepsy about 15 years ago. My seizures have been only moderately controlled at best, so I have never driven or held down more than a part time job. I am blessed to have a husband who takes on the extra load without complaint. He is the breadwinner, the grocery shopper, and my own personal chauffeur. XD I am a stay at home mom these days, with a 7 year old son and a 2 year old daughter. I also homeschool my son, although we have missed several weeks due to complications with my medication and seizure control.
So the brief history is that I have spent many years hopping medications. Tegretol didn't work and made me dopey, Keppra made me paranoid, Zonegran didn't work and gave me horrible pelvic pain and UTI like symptoms, and although Trileptal worked acceptably well for the last 8 years, I don't tolerate it anymore because it started depleting my sodium about two years ago.
All this came to a head this last summer when my sodium dropped down to 124, so I was put on sodium chloride supplements. In an effort to remove the Trileptal over the course of about 6 weeks, me neuro put me on Lamictal. But it didn't work well enough as a monotherapy option. So I hit a wall with weaning off Trileptal, and had a drop attack because of it. I had also been feeling really sick to my stomach for a week or so, and had lost a fair amount of weight that I didn't have to lose in the first place. So my neuro had me increase Trileptal slightly for the seizure control, and then she drew a sodium level. When the results came back, it showed that my sodium had dropped to 127 despite supplementation. So with all the trouble I've had coming off the Trileptal, she decided to have me go in and get a mega dose of Dilantin intravenously, as a stopgap really, just to get rid of the Trileptal and move forward from there. They also gave me some saline to bring my sodium back up to normal. That was two weeks ago.
It's kind of a long story, and the details are not particularly relevant, but I was referred to a different neurologist this week. He wants me to get off both the Trileptal and the Dilantin, keep the Lamictal but raise the dose, and add Vimpat. That was Friday.
So currently I am taking Lamictal, Vimpat, Dilantin, and Trileptal. I'm still taking the sodium chloride supplements, so mostly I feel fine. Amazingly, the side effects really haven't been too bad considering how many things I'm taking, but they are all at a pretty low dose, so maybe that's why. The next two weeks will be spent increasing the Vimpat, and then I will see the neurologist again and we'll strategize how to reduce the unwanted meds.
So the brief history is that I have spent many years hopping medications. Tegretol didn't work and made me dopey, Keppra made me paranoid, Zonegran didn't work and gave me horrible pelvic pain and UTI like symptoms, and although Trileptal worked acceptably well for the last 8 years, I don't tolerate it anymore because it started depleting my sodium about two years ago.
All this came to a head this last summer when my sodium dropped down to 124, so I was put on sodium chloride supplements. In an effort to remove the Trileptal over the course of about 6 weeks, me neuro put me on Lamictal. But it didn't work well enough as a monotherapy option. So I hit a wall with weaning off Trileptal, and had a drop attack because of it. I had also been feeling really sick to my stomach for a week or so, and had lost a fair amount of weight that I didn't have to lose in the first place. So my neuro had me increase Trileptal slightly for the seizure control, and then she drew a sodium level. When the results came back, it showed that my sodium had dropped to 127 despite supplementation. So with all the trouble I've had coming off the Trileptal, she decided to have me go in and get a mega dose of Dilantin intravenously, as a stopgap really, just to get rid of the Trileptal and move forward from there. They also gave me some saline to bring my sodium back up to normal. That was two weeks ago.
It's kind of a long story, and the details are not particularly relevant, but I was referred to a different neurologist this week. He wants me to get off both the Trileptal and the Dilantin, keep the Lamictal but raise the dose, and add Vimpat. That was Friday.
So currently I am taking Lamictal, Vimpat, Dilantin, and Trileptal. I'm still taking the sodium chloride supplements, so mostly I feel fine. Amazingly, the side effects really haven't been too bad considering how many things I'm taking, but they are all at a pretty low dose, so maybe that's why. The next two weeks will be spent increasing the Vimpat, and then I will see the neurologist again and we'll strategize how to reduce the unwanted meds.
