gcvmom
Here we go again!
husband takes medication for simple partial seizures which cause sensory or autonomic symptoms for him. He's only lost consciousness from this once, about 5 or 6 years ago, but it was while he was driving, and frankly that's enough. We found out why he was having them and he had surgery, but he still has the seizures. He's on his second seizure medication, Trileptal, and the seizures are not 100% under control. It's a relatively minor incovenience, but sometimes it can be upsetting for him when these happen. And this week he's been experiencing episodes of tunnel vision without the usual aura and seizure symptoms.
His neuro said there's room to move him up in dosage, but the doctor doesn't want to increase it because he doesn't think it will help , and he thinks it will just make husband more tired than he already is from the medication.
So he recommended some other drugs, but in the same breath explained why they probably wouldn't be a good fit for husband (and we agreed). Then he starts to tell us about a drug trial for a new seizure medication and leaves us with that as our final thought.
A few weeks have gone by, and today we get this phone call from the neuro's nurse and she's asking husband if he's interested in participating in this drug trial. It's a double-blind study (so to me that means he COULD get a placebo). The drug is not yet on the market. There is no financial compensation, but the hospital would pick up all the visits, labs and follow-up care costs over a 4 to 4.5 month period. They said husband meets the criteria for the study (I'm assuming it's refractory seizures after two or more medication trials). The drug has already been tested in the EU, Japan and Australia (maker is UCB). Side effects he jotted down are sleepiness (already a problem with Trileptal) and headaches.
Just yesterday I'd told him I thought he should look for another neuro to manage his medications, and try to find one who would support at least TRYING to increase his Trileptal to see what happens (he's on 1800mg/day). And then we get this phone call.
I'm a little bit leery about having him go through this when I don't feel like we've given Trileptal a thorough trial. He was originally on Lamictal, which worked really well, but he got a rash and the doctor was really goosey about him risking Stevens Johnson syndrome. Fair enough. Something in my gut feels like this neuro is just trying to shoe-horn husband into the study without really giving his current treatment a fair chance.
Now, since husband is out of work right now, it would sort of be okay if it turned out to be placebo. But if he gets a job in the next few months, that might really be problematic if he starts having seizures again, or if he has a bad reaction to the drug.
SO... here's my question: Do we skip the drug trial and go find a new neuro who will let us try a higher dose of Trileptal? Do we go for the trial in hopes that the new medication will work (and that husband doesn't get a placebo)? Do we try one of the other suggested though not preferred drugs? Do we just keep the status quo and have him put up with occasional mild seizure episodes?
His neuro said there's room to move him up in dosage, but the doctor doesn't want to increase it because he doesn't think it will help , and he thinks it will just make husband more tired than he already is from the medication.
So he recommended some other drugs, but in the same breath explained why they probably wouldn't be a good fit for husband (and we agreed). Then he starts to tell us about a drug trial for a new seizure medication and leaves us with that as our final thought.
A few weeks have gone by, and today we get this phone call from the neuro's nurse and she's asking husband if he's interested in participating in this drug trial. It's a double-blind study (so to me that means he COULD get a placebo). The drug is not yet on the market. There is no financial compensation, but the hospital would pick up all the visits, labs and follow-up care costs over a 4 to 4.5 month period. They said husband meets the criteria for the study (I'm assuming it's refractory seizures after two or more medication trials). The drug has already been tested in the EU, Japan and Australia (maker is UCB). Side effects he jotted down are sleepiness (already a problem with Trileptal) and headaches.
Just yesterday I'd told him I thought he should look for another neuro to manage his medications, and try to find one who would support at least TRYING to increase his Trileptal to see what happens (he's on 1800mg/day). And then we get this phone call.
I'm a little bit leery about having him go through this when I don't feel like we've given Trileptal a thorough trial. He was originally on Lamictal, which worked really well, but he got a rash and the doctor was really goosey about him risking Stevens Johnson syndrome. Fair enough. Something in my gut feels like this neuro is just trying to shoe-horn husband into the study without really giving his current treatment a fair chance.
Now, since husband is out of work right now, it would sort of be okay if it turned out to be placebo. But if he gets a job in the next few months, that might really be problematic if he starts having seizures again, or if he has a bad reaction to the drug.
SO... here's my question: Do we skip the drug trial and go find a new neuro who will let us try a higher dose of Trileptal? Do we go for the trial in hopes that the new medication will work (and that husband doesn't get a placebo)? Do we try one of the other suggested though not preferred drugs? Do we just keep the status quo and have him put up with occasional mild seizure episodes?