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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 PH on Wed, 2013-08-28 - 22:38

I can imagine how hard it is for you and my heart felt for you. I have epilepsy myself and it has been with me for 1x years  already. It seems that my current condition is pretty much the same as your husband's - on tegretol, attack usually happen 1-2times a year.

I am a Christian myself and I have been asking God why this is happening to be. My whole life just changed completely after I had been diagnosed with this disease. After all these years, I still do not knwo why but I trust that my life is in HIS hand. Thank you so much for sharing your story. I will sure pay more attention to it.

I have you in my prayers.

I can imagine how hard it is for you and my heart felt for you. I have epilepsy myself and it has been with me for 1x years  already. It seems that my current condition is pretty much the same as your husband's - on tegretol, attack usually happen 1-2times a year.

I am a Christian myself and I have been asking God why this is happening to be. My whole life just changed completely after I had been diagnosed with this disease. After all these years, I still do not knwo why but I trust that my life is in HIS hand. Thank you so much for sharing your story. I will sure pay more attention to it.

I have you in my prayers.

Re: My hubby passed away

Submitted by Frank Lee on Wed, 2013-08-28 - 23:47
One of the first people documented in histoy as having epilepsy was Saul, approximately 2000 years ago. If you remember, Saul was approached "on the road to Damascus". God caused him to have a seizure, and asked why he was persecuting HIM. He was told that his name will be changed to Paul. Paul ended up writing approximately two thirds of the New Testament.  (You're in good company).

Re: My hubby passed away

Submitted by Lucybiddy on Thu, 2013-08-29 - 08:30
I too am a Christian but I must say this rocked my faith massively. My husband and I discussed everything he found it very difficult to live with the stigma and biase attached to it, it effected so many things because he was very private about it, so very often had to lie to get out of invites like lads holidays. His epilepsy was very controlled and the last 6 months were like a roller coaster I put faith in docs and now wish I'd done more like private care to speed up things but the only thing I can do now is warn others. Any changes please please be on it. Sudep is far more common than we realized. Good luck to you and any time you need a chat I can empathize to a point because of going through my husbands fears x

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