30+ years with Epilepsy, still lots of ???

[Porkette]

Hi Sabbo,
I understand where you are coming from I had 2nd degree burns also but mine came from a bad sunburn and being in the water
for hrs. while taking Depakene and the drug drew the suns rays in more, even with a sunblock I was a mess.
The only other thing I can think that may be triggering the seizures is if you have a bright light on in your bathroom and it gets
really warm in the bathroom from the shower. Also keep track of when this happens and if you see a pattern that it happens at
certain days of the month it could be hormone related. I wish you only the best of luck and May God Bless You!

Sue

 

[Fedup]

Neuro Man

Welcome to CWE Neuro Man, go easy on the "Glad to meet my peers" part I am only a few years older than you, I have had this since childhood. Nobody has a reason why although saying that one neurologist was insistent that I fell and banged my head but unless being put down for a sleep and going to sleep on a pillow counts I have no idea. I am told I have tried all the drugs and there is none left, I have had all the tests done but am not suitable for surgery and like you I have been warned that every seizure is damaging my brain and to be honest it shows.

Yep the long term effects are worrying but you cannot allow yourself to dwell on them the whole time or you will drive yourself mad and the fact I am now on cardio drugs as well has thrown a spanner in the works for me, I have to make sure they do not overlap or there will be a reaction and that is not good for me. I have the reflux and projectile vomiting or sometimes just getting sick all day, which takes a lot out of me. Vision is screwed up like you said, teeth are falling out as well and like you said the everybody reacts differently to each med. No more trips to the hospital for me unless like the last time I am unconscious, I have seen enough of them.

If I am very honest I am very lucky to have found CWE when I did and the best part was people here understood and knew how I felt. There are a lot of people here who are very kind and listen to you, because its like a family we do not always agree, sometime you fall out but you are always there for each other no matter how much you disagree.