When I was initially diagnosed with epilepsy at age 14, 17 years ago, the only kind of diagnosis I got was partial complex epilepsy. I had no clue what it meant, but at then found out that the focal point was in the left temporal lobe. I know I had been having seizures my whole life, but could not explain them to anyone and it was not figured out until a sleep deprived EEG was done.
At about age 21 My seizures were pretty well controlled after numerous medications and the combination of Depakote and Gabitril seemed to work for a few years. Then about 5 years ago they came back even worse, so I went back to another neurologist who changed my meds to Keppra, Trileptal, and Depakote. These did not seem to work much either and so I was referred to a level IV comprehensive epilepsy center. After doing the workup for brain surgery, they discovered I also had Mesial temporal sclerosis showing that was not in the original tests and was uncovered by a pet scan, plus got the official diagnosis of simple partial and complex partial seizures with secondary generalization. It turned out I was not a candidate for resective surgery as they felt I would lose memory and speech. I was presented with the option of the RNS pivotal clinical trial so I took it. It still did not control all of my seizures and so they added back on the Gabitril which also helped some, they think my body starts honeymooning on medications. They also had to add on Ativan as a rescue medication.
Doing research I learned about SUDEP (sudden unexplained death from epilepsy) and upon doing even further research through my college library started finding out that people with refractory epilepsy have a higher mortality rate from it. I also hit my epileptologist up about it, as I discovered that it was explained to my mother when I was a kid but I was never told about it. They explained it to me and I also asked about the mesial temporal sclerosis being progressive, and they told me that if they ran another MRI it would probably show some progression.
In all of the research I have done, the rates seem to vary, as some is an overall percentage and I cannot find anything that discusses people that are uncontrolled with medication or surgery at all as it all seems to discuss only the outcome after surgery and nothing about non surgical candidates. I know very little is understood about SUDEP and epilepsy in general, but I am wondering if there is any information on the actual mortality rates of adults with epilepsy that is completely uncontrolled, as I have, at a minimum, one complex partial seizure in my sleep and constant epileptiform waves and spikes in my sleep as the RNS has shown.
I do alot of chatting on epilepsy forums and have had a few people I have chatted with pass due to this and so am wondering about this, not out of fear as I have come to terms with the possibilities of it happening to me and knowing that the thought is it is painless, but to try to explain it to my family as they seem to blow it off like it is nothing, they never even call to see how I am doing even though the doctor said the outlook of total control is poor.
Any information regarding the actual statistics on it would be appreciated, preferably scholarly, especially any kind of graphs as I am also trying to further my understanding and have been doing alot of writing about it.