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My hubby passed away

Wed, 08/28/2013 - 19:40
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

Comments

Re: My hubby passed away

Submitted by Lucybiddy on Sat, 2013-08-31 - 00:19
Thank you for your kind words, I have to carry on I have no choice with 4 kids but I've never lost anyone suddenly it's the worst thing ever not gettin to say goodbye x

Re: My hubby passed away

Submitted by Silvergoldman on Thu, 2013-08-29 - 23:59
I am very sorry for your loss. Your post really hit home for me because I am also in my 30's and have had epilepsy my whole life, with almost all my seizures in my sleep, and we have a baby on the way. I am hoping my seizures don't spike severely when the baby arrives as I will be the primary caretaker while my wife works. I had a period of time a few years ago when my seizure control was very poor and really when I look back I think I am lucky to be here. I was having multiple seizures every single night though I was on three epilepsy medications. At one point I fell coming back from the bathroom at night and broke my jaw at the top of a flight of stairs. Had I fallen differently I may have broken my back or neck instead. My wife is very supportive, but my family seems to go out of their way to stay as ignorant as possible.

Re: My hubby passed away

Submitted by Lucybiddy on Sat, 2013-08-31 - 00:11
Hi, I hope I didn't worry you too much it's not my intention to give anyone anxiety. It just helps to speak with people who get it. A baby puts such a strain on a house and me and my hubby were solid, but inevitably I couldn't give my time to him as I wanted because we had 3 other children I had a terrible pregnancy and was working upto a month before. Plus we had massive amount of work on the house also. For us the timing was really bad. I honestly think in my heart stress and tiredness was to blame. With your new baby coming my advice to you would be get as much support as you can and don't let things get you stressed. I'm no doctor but I'm sure things would be different had we not had so much stress. I wish you luck with your baby and hope your family come round, I cannot understand their ignorance. Just pay attention to any changes.

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