Hola!
Hi names Jenny, but I'll usually sign of as Q.
I'm 37 and from the UK.
Was diagnosed with Temporal Lobe Epilepsy at 17 took a whole do get decent control but did in my mid 20's. After 2 years seizure free was weaned of meds and had another 8 years seizure and meds free. April 2012 had breakthrough Tonic Clonic seizure and started having many, many myclonic seizures and was diagnosed with Juvenile Myclonic Epilepsy.
Was put on Keppra. Made me ragey and slightly irrational thoughts.
Was changed to Zonismide 200mg now wasn't too bad cognitive function was slightly impaired mostly word finding. But had no real impact on no of TC seizures though did half no of Myclonics. Neuro said that I wasn't really on a therapeutic level so we'd gradually increase to 300 mg in to 50 mg installments over 2 months.
For the 3 weeks I increased by 50 mg I was experiencing headaches everyday. Then last week I had an incident. We'd had a block drain and I had bought some drain cleaner. I had put it down the drain and it hadn't cleared the drain. So for a moment I had gotten confused and thought, maybe it's not drain cleaner, maybe it's brain unblocker, for fixing the headaches. It was only for a few minutes and I am genuinely certain there was no intention to deliberately hurt myself. But I got really distressed that people would think I was mad if they found out that I had thought that even for a minute. I spent the rest of the evening crying not being able to tell hubby what was wrong.
Next morning I could say what had happened. We say GP and she thought it was the increase in the meds. She has contacted Neuro who has reduced the zonismide back to the original level and now pescribed clobazam. I have really ambivalent feelings about being on benzos. They have said its just for a month but everytime I take a dose it knocks me for 6.
With the chopping and changing of meds its really making things really challenging. I know it's the same for a lot of people. But I can't decide if I'm crazy or the meds are making me crazy. Even trying to rationalise why thinking drain bloody unblocker would unblock my brain. Was that just a semantic brain fart. Is trying to rationalise an irrational thought a primrose path to madness?
So I am not entirely sure what information, advice or guidance I am after. Or if I just needed to share in a safe space. But thanks for listening x
Q
Hi names Jenny, but I'll usually sign of as Q.
I'm 37 and from the UK.
Was diagnosed with Temporal Lobe Epilepsy at 17 took a whole do get decent control but did in my mid 20's. After 2 years seizure free was weaned of meds and had another 8 years seizure and meds free. April 2012 had breakthrough Tonic Clonic seizure and started having many, many myclonic seizures and was diagnosed with Juvenile Myclonic Epilepsy.
Was put on Keppra. Made me ragey and slightly irrational thoughts.
Was changed to Zonismide 200mg now wasn't too bad cognitive function was slightly impaired mostly word finding. But had no real impact on no of TC seizures though did half no of Myclonics. Neuro said that I wasn't really on a therapeutic level so we'd gradually increase to 300 mg in to 50 mg installments over 2 months.
For the 3 weeks I increased by 50 mg I was experiencing headaches everyday. Then last week I had an incident. We'd had a block drain and I had bought some drain cleaner. I had put it down the drain and it hadn't cleared the drain. So for a moment I had gotten confused and thought, maybe it's not drain cleaner, maybe it's brain unblocker, for fixing the headaches. It was only for a few minutes and I am genuinely certain there was no intention to deliberately hurt myself. But I got really distressed that people would think I was mad if they found out that I had thought that even for a minute. I spent the rest of the evening crying not being able to tell hubby what was wrong.
Next morning I could say what had happened. We say GP and she thought it was the increase in the meds. She has contacted Neuro who has reduced the zonismide back to the original level and now pescribed clobazam. I have really ambivalent feelings about being on benzos. They have said its just for a month but everytime I take a dose it knocks me for 6.
With the chopping and changing of meds its really making things really challenging. I know it's the same for a lot of people. But I can't decide if I'm crazy or the meds are making me crazy. Even trying to rationalise why thinking drain bloody unblocker would unblock my brain. Was that just a semantic brain fart. Is trying to rationalise an irrational thought a primrose path to madness?
So I am not entirely sure what information, advice or guidance I am after. Or if I just needed to share in a safe space. But thanks for listening x
Q
