So one UTI and a set of antibiotics later, I am now healthy (brain damage, AVM and epilepsy withstanding), which is great. For my epilepsy I've recently been taking 2x150mg Lamotragine per day and 2x1000mg Keppra per day. We added Keppra because I was still having seizures, which I shouldn't have now as the UTI has gone (fingers crossed).
The problem now is that the Keppra is killing me. Before you get worried I don't mean that in a literal sense, I mean it in the sense that I can't get up, and I have a constant piercing ringing in my ears. It's a bloody nightmare; I'm literally bed bound.
So what is to be done? "Why, take away the Keppra and put on a bit more Lamotragine!" I hear you say, and to you, I tip my hat. It makes sense right? When I wasn't on Keppra, I was doing fine. Now I'm on Keppra I'm not doing fine. It's that simple.
I'm currently living with my parents whilst all this dust settles, and until this meds problem is sorted out. Without trying to sound like a 13 year old boy explaining to the police the reason he reeks of weed is due to his bad upbringing, the problem is my parents.
They want me to stay on the current dose. You know. The dose that keeps me completely incapacitated. I get what their point is though; they don't want to swap meds too quickly without giving these new ones a try, and I understand that. But I've been on these things for 3 weeks now, and I don't think it takes a doctor to figure out that these are no good for me.
What am I supposed to do now? I mean my epilepsy specialist has told me to get rid of the Keppra, how more clear cut can this situation be? I'm 22, which sort of constitutes as an "adult", so I could technically just say "stuff you" and cram as many/little pills as I wanted into my body. But they're taking care of me, and they're stressed as hell, so I don't want to do that. They're must exist some combination of words that could make them understand why this is the only way. It's almost as if they think I pretend to not be able to get out of bed just because I'm trying to prove a point. I'm not trying to "win" anything, I just want my life back, and they are currently the only things blocking my recovery.
To reiterate; I know I sound 13, but I'm 22 I promise. Now excuse me, these legos aren't going to build into a spaceship themselves!
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I suppose that having witnessed your seizures they're just plain scared about them starting up again and, although YOU are feeling rough as hell, THEY are seeing a sleepy son who's mercifully free from seizures. But you seem to be the one using common sense.
You're quite right that at 22 you are man enough to take control of the situation, especially as your specialist recommends your desired course of action. Naturally any withdrawal would need to be closely monitored.
I think you have to be firm with your parents about your decision to come off keppra, not argumentative, just firm. It's obvious that you're concerned about their feelings, which is good, because even when you're 42 you will still be their precious child who they will do anything to protect. Good luck Ben.
I do understand, and that's why I'm being compliant. There's no rush, and if the price I pay for keeping them sane is staying bed a bit longer then that's not a problem.
Hi Ben, feel for you in your current situation but I wholeheartedly agree with everything Cat says so hope you can win the day with your parents, with no loss of face or feelings that obviously exist between you.all x x
I am on Keppra too and am too unable to do very much at all and I do believe it is because of the meds.
Just a thought maybe if you highlighted the side effects in the patient information leaflet you are suffering and gave it to your Dad and Mum to read they can take it away as food for thought. Sometimes stuff can get overly emotional when you discussing stuff like medication changes, which is understandably, which why it may help them if they see it down on paper.
I had the same reaction from my husband when I talked about dropping down a dose, because Keppra had crucified me, but I know some people it is a wonder drug. I have very different opinion on it though.
But with all anti epileptics it is a very fine balance between seizure control and coping with the side effects of the medication.
I do feel you.
I know one day soon though it will get better because we will make sure if it X
I've just spoken to the nurses on our helpline about your post, to get their take on the situation.
As you are on quite a high dose of the drug, and are taking it alongside other medication, do be careful if you do decide to stop taking it. You could experience quite severe effects by reducing the dose at the wrong pace.
You do have a right to a say in your treatment, but I would suggest talking it through with your doctor first and if you feel the negative outweighs the positive with Keppra, they can wean you off more slowly.
Apologies if you know this already, I understand you've been experiencing this for some time and have support of your epilepsy specialist, but I wanted to say just in case.
If you'd like to talk things through, contact our helpline on 0808 800 2244 and ask to speak to a nurse, or email helpline@headway.org.uk.
I called my epilepsy specialist, neurosurgeon, and I'm going to talk to my GP in a couple of days. Everyone is on the same page here, and we're taking our time. I have to wind my neck in a bit as I just want it to go away right now, which isn't a reasonable line of thinking.
We're slowly getting there; I'm home, I'm safe, and I have lots of time to figure this all out with my family and doctors.
Thanks for the feedback, good to hear that tweaking the dose made you feel much better - hopefully that indicates there's a good balance to be had around the lower dose, and you can reduce both the seizures and the side effects.
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