Hi, I'm hoping there maybe people out there that are in a similar situation. I lost my husband to sudep. It honestly never occurred to me that my husband would ever die from epilepsy. Yes I'd researched epilepsy but I stupidly overlooked how common it is. My husband was born with a scar on his brain and it caused seizures. He was diagnosed at 14 when he started to get them. I will call him H rather than use his name he was always very private about his condition and didn't like people to know because of the stigma attached. H was able to manage his epilepsy quite well with meds (tegretol) up until recently. He would have them about once a year. Around 6 months ago they changed massively. He had seizures during the day, which never ever happened before they were always at night. The seizures became alot more frequent, around 3 weeks apart, his recovery after reduced and the actual seizures them self changed and they were all different. Doctor gave him epilim on top of the tegretol he was already taking. We went back again and they up the dosage of epilim to the maximum. We were waiting for the Neuroligist appointment. But sadly it was too late. He was early 30's with a young family of 4 children with everything to live for I'm now left with if buts maybes and whys. I will make it my mission in life to get awareness of sudep out there. I would also hope there will be others that can relate to my pain. Epilepsy took my husband life way before he passed away as the changes in his condition meant we had to adapt so much so he wasn't left alone, he hated the control on his life. We also have a young baby and a very hectic life. It took his smile, he was very forgetful, tired, stressed, he was frightened to sleep which only increased the odds, as did the stress. He couldn't get work, lost his license, couldn't be left alone with our baby. God really does take the good young. He was the most amazing man in the world. If anyone's epilepsy is changing please pay attention and if anyone is struggling with their partners having epilepsy I really can understand the strain it puts on you. X
Re: My hubby passed away
Submitted by Masterjen on Wed, 2013-08-28 - 20:26
Thank you for sharing your story; it must have been a difficult thing to do. You have my deepest sympathies for the loss of your husband.