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The Watercooler
husband's Seizure Medication Quandary
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<blockquote data-quote="gcvmom" data-source="post: 306049" data-attributes="member: 3444"><p>Susie, I suppose once the drug is on the market it would be available to him. Which would mean he'd have to go back to Trileptal until it finally is available. He hasn't tapered off seizure medications since starting them about two years ago so I'm not sure how he'd do if he weaned off slowly. He DID go cold turkey one weekend when we accidentally ran out, and that resulted in some pretty bad seizures that left him wiped out for a few days. </p><p> </p><p>There is the potential for his QOL to be really messed up for a while from this. And not just seizure-wise, but also his mood since we KNOW the AED's have helped him (and even he admits it now).</p><p> </p><p>The whole financial aspect of a doctor's motivation for a trial REALLY bugs me, to be honest. I am very suspicious of someone's ability to remain unbiased when they are getting paid to make a specific recommendation for care.</p><p> </p><p>....</p><p> </p><p>Patricia, as always, you are a wellspring of information <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite8" alt=":D" title="Big Grin :D" loading="lazy" data-shortname=":D" /> The study starts next month. I don't know if there's a lag time with the gov't posting study info, but for sure this medication is not on the market yet so I don't think it's Vimpat. I'll read more at the crazy medications site. I also need to check my notes because the doctor was rattling off different drug names last time, many I'd never heard of. I may have jotted it down.</p><p> </p><p>I think the BIGGEST issue for me is the prospect of him getting the placebo, and then having to live with seizures AND a breakdown in his mental health. With what we've been through in the past, it just does not seem worth the risk, especially when we haven't TRIED to increase Trileptal and haven't even considered something like what rls suggests in adding back a small amount of Lamictal to see if that helps. This doctor is just not thinking creatively enough for my liking.</p><p> </p><p>Thanks for the feedback, ladies. It is so very helpful!</p></blockquote><p></p>
[QUOTE="gcvmom, post: 306049, member: 3444"] Susie, I suppose once the drug is on the market it would be available to him. Which would mean he'd have to go back to Trileptal until it finally is available. He hasn't tapered off seizure medications since starting them about two years ago so I'm not sure how he'd do if he weaned off slowly. He DID go cold turkey one weekend when we accidentally ran out, and that resulted in some pretty bad seizures that left him wiped out for a few days. There is the potential for his QOL to be really messed up for a while from this. And not just seizure-wise, but also his mood since we KNOW the AED's have helped him (and even he admits it now). The whole financial aspect of a doctor's motivation for a trial REALLY bugs me, to be honest. I am very suspicious of someone's ability to remain unbiased when they are getting paid to make a specific recommendation for care. .... Patricia, as always, you are a wellspring of information :D The study starts next month. I don't know if there's a lag time with the gov't posting study info, but for sure this medication is not on the market yet so I don't think it's Vimpat. I'll read more at the crazy medications site. I also need to check my notes because the doctor was rattling off different drug names last time, many I'd never heard of. I may have jotted it down. I think the BIGGEST issue for me is the prospect of him getting the placebo, and then having to live with seizures AND a breakdown in his mental health. With what we've been through in the past, it just does not seem worth the risk, especially when we haven't TRIED to increase Trileptal and haven't even considered something like what rls suggests in adding back a small amount of Lamictal to see if that helps. This doctor is just not thinking creatively enough for my liking. Thanks for the feedback, ladies. It is so very helpful! [/QUOTE]
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