Tolerance to Kepra after 2 years?!!

[rickard]

Hello all,

My wife is an epilepsy sufferer. She had multiple absence seizures every day throughout her childhood & early adulthood. Every medication, nutrition plan, etc failed until her doctor had her try Depakote again & found the correct dosage. She had been seizure free for several years when I met her.

After we got married & decided we wanted to start a family, she courageously opted to try a new medication, Kepra, which has a far smaller risk factor for birth defects than Depakote. It had been working fine for almost 2 years, however, around Christmas time, her seizures began to slowly return. At first it was just the sensation of seizures, but now, about a month later, she's having multiple a day! We are very frightened and confused. Can someone really develop a tolerance to a medication that slowly?

We know she's not pregnant because she just had her period, so a large hormonal change is doubtful. She had been feeling under the weather for a long time & it finally developed into a very bad cold a couple of weeks ago (when the seizures returned in earnest). Also, she has been sleep deprived because she has been using a fertility monitor which requires her to get up very early in the morning to test.

I don't get it. She's been sick before & had insomnia before, and nothing like this happened. We're afraid that she might have to go back on Depakote! The doctor had her up her morning dose of Kepra, but we're not sure if that's going to be effective (or why it is required at all!)

Can anyone chime in? Has anyone else experienced something like this? Better yet, has anyone been able to overcome something like this & be seizure-free again? Any advice would be greatly appreciated!

 

[Fedup]

Yes you can develop a tolerance to any medication or as I was told became allergic to the medication. You will have to go try and find another medication and hopefully you will get seizure free again but its not an easy road.

 

[momof3boys]

Just this week, i started to have seizures. Ive been on keppra xr alone, since May 2011. Prior to that, i was on Keppra and carbatrol. Everything was going well til Sunday night. I had seizures in my sleep... then again on monday night. By tuesday I was having the feelings of auras during the day, and had to call my neuro. They called me back saying they thought it was a virus. Ive been feeling great, and havnt had any issues with colds, etc. So Im not buying the virus reason. But since then, ive been resting and getting alot more sleep. last night I took a benadryl to help me sleep and Ive felt better today. Maybe with her being sleep deprived, (not getting enough sleep) or having a cold, its interferring with her seizure control. Have you contacted the dr to let them know of this? I would be writing down all of this as it comes, and I will be praying that the seizures stop. I took Keppra and Carbatrol through out all my prengnacies and had healthy babies.

 

[jemsister]

I can say from experience that you can develop problems with a medication at a slow pace. I had success with Tegretol for about that long before it stopped working. Zonegran took about a year to stop working. I've been on Trileptal for about 8 years and over the last couple of years developed a different kind of intolerance--sodium depletion--which had never been an issue for all those years I had been taking it.

I am not surprised that they want to raise the dose. For me, it's been normal to have a medication work well for the first six months to a year, and then as my body becomes used to the drug, I've had to raise the doses periodically. Eventually I would hit a wall and then I'd have to switch meds.

My neuro told me that it's less about how much you take and more about how much you absorb. When working on dosages with me, she always checks my trough level first to see where I'm at in the therapeutic range. Although I'm a very small person, I have always required higher dosages than average because I don't absorb them as well as I should. I also have to take them every eight hours as opposed to every twelve or once a day, even when the meds are meant to be taken once a day. Anyway, my point is, I recommend that they take a trough level before adjusting the dose. It's possible your wife isn't in the therapeutic range.

Another thing to consider is that seizures can increase when your blood levels are too high. It might be unlikely in her case, since the seizures aren't associated with an increased dose beforehand or anything like that. But it's something to keep in mind as they adjust her meds. I ended up in the toxic range once, and had lots of side effects and increased seizures. Bringing the meds down reduced the seizure frequency and side effects.

I also agree with the above poster, that lack of sleep and illness can definitely lower one's seizure threshold, as can stress. It's possible that the combination of these three factors could be contributing to her seizure increase.

 

[Cint]

I've been on Keppra- 3000 mgs. for 12 years now, along with a low dosage of Topomax and like others stated, I have break-through seizures, also, even after having a temporal lobectomy and now going on my 12th medication. All of the factors the others have posted are to be considered, along with hormonal issues. Do her seizures occur around her "time of the month"? These are catamenial seizures. Has she had low blood sugar? This, too, can effect seizures.

 

[rickard]

Thank you all for your feedback! My wife seems to be doing much better starting yesterday. I'm not sure if its the increased meds or her health/sleeping being a lot better. We're keeping our fingers crossed & hoping that the streak continues!

One other question: If you call your neurologist to tell them that you had a seizure after a long time of not having them, & you have a driver's license, are they legally obligated to notify the DMV?

 

[Cint]

One other question: If you call your neurologist to tell them that you had a seizure after a long time of not having them, & you have a driver's license, are they legally obligated to notify the DMV?

It depends on which state you're in. Here is more info:

http://www.epilepsy.com/epilepsy/rights_driving

Which states require physician reporting?

Six states (California, Delaware, Nevada, New Jersey, Oregon and Pennsylvania) still require physicians to report patients who have seizures to the state, usually to the department of motor vehicles. While these statutes arguably do little to protect the public interest, they have been used to bring civil litigation against physicians who have not reported their patients to the department of motor vehicles, even in cases where patients are compliant and on medication.

 

[rickard]

Well, one step forward, two steps back. Shortly after my last post, my wife started having seizures again. She hasn't had a seizure-free day since. I had rationalized it in my mind saying that they were only happening when she was close to needing her next dose, but that's simply not always the case.

This is so enraging. I can't believe that this medication worked for two full years and then just stopped. I don't know if its really that she developed a tolerance or if her bodily chemistry has changed & is reacting differently to the medication.

She has followed her neurologist's recommendation & increased her dosage for a week, but not only has it not helped, but it, combined with the situation itself is making her very depressed. I've been reading up a bit on the potential side effects of Keppra in terms of mood and depression, and its pretty scary.

I really hope that there's a light at the end of this tunnel soon.