Fear of stopping dilantin

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If I miss a dose im out for the count.

yes ive been told its almost impossible for someone with gran mal seizures to be seizure free for 16 years especially with my levels always in the 3,s
 
Good advice from lots of folks here! Please take care and let us know how you're doing.
 
I'm not a huge fan of Dilantin (mostly because I'm allergic to it and it almost killed me) and Keppra didn't stop the seizures entirely. I take Lamotrigine and it works well for me. Perhaps ask your neurologist about it?.
 
Hi Dolores,

I know you posted about 4 years ago about being on an anti Epileptic drug for a long time. I really agree with you regarding having a GP you can trust and walk you through getting the ride seizure meds. And a very caring neurologist. Consulting a neurologist who is a specialist in Epilepsy does not mean that you will automatically get help. If at all possible try to get a good doctor that will help you through word of mouth. I wish I had been able to do that.

Mary K said to see if there was a training hospital and see if they have an Epilepsy Centre. Word of mouth again. That is the only way I'm afraid. Let me tell you, I certainly would not recommend the "specialist" Epilepsy nurses in a training hospital near me. They did not help me at all. They thought I was ok just because I sounded lucid and was not crying when I telephoned them. It seems that crying is the only criteria the medical profession uses to assume what is happening to what is happening. So narrow-minded! I was going through hell and they just did not consider anything. They were a waste of time. I could even go so far and say what do they actually know? I just wonder if they consulted the Patient Information Leaflet that is included in the box with the pills. "flu-like symptoms" - aching - is written in that leaflet. When I telephoned them the Epilepsy nurse said, "Let me see the graph" Mmm I just wonder what graph did they consult. I was suffering from awful "aching" which stopped me from enjoying my life - I was not laughing as I always have a good sense of humour.

I have found a web page from the Northampton Epilepsy nurse department (UK) saying that side effects can come back. These nurses are so narrow-minded.

I will have to stop talking about this - I got no help from the medical profession - I had to stop taking zonisamide with the help from my mum - I had to suffer many awful side effects 6 weeks longer (the neurologist simply ignored me because no-one would help me. My mother was more help. I could say a lot more but I am starting to get upset.

I shall stop posting on that subject.

Bye for now

Debbie
 
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