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I'm frustrated with my fiances epilepsy

Sat, 12/09/2006 - 16:40
Ted and I met almost 2 years ago through a mutual friend. In 2005, Ted only had 3 seizures. This year, he went almost 5 months without one and then one every two months, then one in November and in December. I'm mostly frustrated with his doctor. Every time Ted has a seizure his doctor doubts he's taking his medications on time and at all. It gets on my nerves because I watch him take it and he treats us like we're lying to him. Also, he just keeps upping his topamax. Instead of trying something else, he keeps upping one medication. Currently, he is on Topamax and Lamictal, twice a day. He always take it. ALWAYS. I've been frustrated but today my frustration turned to worry. Ted's seizures used to last no longer than a minute and he spits and coughs the whole time and wakes up disoriented and with a headache, also they're always triggered by something like not enough sleep or stress of doing something intricate. But today, he wasn't doing anything. He fell down and stopped breathing. His seizure lasted closer to 5 minutes. It was horrifying. When he came out of the seizure his heart was beating out of his chest. Ted's seizures had never scared me before but today, when he quit breathing and turned purple, it did. I'm already frustrated with his doctor but after he upped Ted's topamax for like the 3rd time this year and his seizures increased and then became totally unpredictable, now I'm furious. I need help explaining to an obnoxious doctor that more medicine is causing more seizures without him trying to blame Ted not taking his medicine or having a beer...he'll fine something to blame it on besides the medication. None of Ted's behavior has changed, only his medicine has. I don't know what I'm going to do without choking his doctor. He recommended we go to a medical center and get a sleep study, which we're doing but I feel like his doctor isn't making an effort and just blaming Ted's behavior. Any advice?

Comments

Re: I'm frustrated with my fiances epilepsy

Submitted by Mindraker on Fri, 2006-12-22 - 10:44
Medications sometimes do take several visits to get gradually upped to their maximum level, however, the doctor should be making the appropriate blood tests to make sure the level is where it should be (and that the patient is taking it as directed). If the epilepsy (or something else) is getting WORSE, that should be a BIG RED FLAG, that something is WRONG. You've got to tell your doctor if you think something is wrong. I was suicidal with an anti-seizure medicine combination. I got taken off of that instantly. I was allergic to another. I have to say that the ones I'm on don't necessarily make me want to sing "The Sound of Music", but it's because we have given the doctor feedback we're on medicines that don't harm me.

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