When Keppra stops working...

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Bart

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I've been taking 1000mg of Keppra for the last five months, after seeing a neurologist who said my Parkinson's like symptoms were probably due to the 2g of Epilim I was taking. He suggested reducing Epilim by 400mg every four weeks and I'm now due to stop taking it completely in about two weeks.

This was working very well. My TLE symptoms were considerably improved, my BP was better than it's ever been (e.g. 107/65), and the PD-like symptoms have nearly gone away.

The last few days have been problematic, especially today. Many of my TLE symptoms have returned (e.g. disorientation, panic attacks, anxiety, depression, BP high, IBS, etc). In addition, I feel like I haven't slept in days, my right arm/leg feels tense and going outside in the cold makes them shake. I have also developed a rash on my left arm and am starting to feel itchy all over.

It's like the Keppra's stopped working. And I haven't forgotten to take it, believe me.

I phoned the out-of-hours GP service this afternoon. He said my medication needs to be monitored more closely, and go see you GP on Monday. Thanks, very helpful.

Anyway, I've seen other people here say Keppra's gone bad on them. I wondered if what I've described above bears any resemblance to what other people have experienced?

I know I’m asking a lot with my next question, but when I (hopefully) see my GP on Monday, is there something better than Keppra that might make my TLE symptoms go away?
 
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It may be that it's not the Keppra causing the seizure recurrences but the fact that the epilim is being reduced. To be on 2000mg of epilim and then reduce it with no added-in medication (or an increase in keppra dose) to help keep you seizure free seems unusual, esp if it was the combination of the two that were keeping you seizure free. You may want to ask the neurologist if the plan will be to increase the keppra dose or add in another medication to replace the epilim.
 
masterjen said:
It may be that it's not the Keppra causing the seizure recurrences but the fact that the epilim is being reduced. To be on 2000mg of epilim and then reduce it with no added-in medication (or an increase in keppra dose) to help keep you seizure free seems unusual, esp if it was the combination of the two that were keeping you seizure free. You may want to ask the neurologist if the plan will be to increase the keppra dose or add in another medication to replace the epilim.
Click to expand...

That is a valid point, I have had a few blips after each decrease in Epilim - approximately 10-14 days later (which I'd completely forgotten about). But they've never been this bad before.

Perhaps tomorrow might be better. Thanks for the advice.
 
I agree with Maserjen. I'd also like to point out that 1000mg of Keppra is not that much. I am currently taking 3000 mg daily which my neuro has called the "full dose". Even when I had first started on Keppra I was only 2000mg daily, so 1000mg just doesn't sound like it would do much.
 
It would be a good idea to take to the GP on Monday about the rash you have developed. There is no one drug we can all say is good because we are all different and react different to the drugs. But talk to your GP about all this.
 
I agree about the possible withdrawal seizures from the Epilim. If you aren't taking enough Keppra you could have seizures. Keppra may not stop the same seizures as the Epilim. Or, you may just be having a short spell of breakthrough seizures, and they will go away. If the rash gets worse go to the ER.

I doubt the Keppra is "wearing off", you probably just aren't on enough meds with the reduction in the Epilim. If the Keppra is working, you will probably be fine on a higher dose. The problem with "polytherapy" (taking more than one kind of med at a time) is that you aren't always sure what is doing what.
 
Some very good points - thanks to everyone who replied.

I've felt a bit better today, although most of it was spent lying down on the bed - unable to sleep, but without the energy or motivation to do anything.

Assuming the 'blips' are getting bigger each dose decrease, I need to be looking at increasing the Keppra in time for next month - or extend the tapering off period to two months... If I increase the Keppra then its side-effects increase, so I'm leaning towards the latter option.

I will phone my GP tomorrow, Liam. If only about the unexplained rash. I also haven't had a blood test in the 5 months I've been taking Keppra, which I read elsewhere should be checked by now.
 
I completely agree with the others in regards to your problems being due to withdrawal.

But if it's not, I was on 1000 mg of keppra a day for a long time until it just stopped being as effective. I'm now on 4000 mg and take trileptal. Our brains are funny and like to change just to screw with us.
 
I don't know why, but I want to share my experiences today - possibly because I will have forgotten by tomorrow (ala Groundhog Day).

Saw a doctor who I hadn't seen before. I explained the symptoms, she only seemed interested in the rash. Said that it wouldn't take 5 months to develop a reaction and it was probably heat rash. Gave me a presciption for Hydrocortisone and told me to make an appointment with your usual doctor.

I did ask if I should increase the dose of Keppra, she was NO, NO, NO, don't change anything. However, she did promise to write a letter to the neurologist to ask if he'd see me again.

So I carry on with my usual dose of rat poison for now.
 
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