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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 just_joe on Fri, 2013-08-30 - 18:29

I feel for you and am truely sorry for your loss.

Sudep does hit many epileptics and it can hit fast. In the last 50+ years I have dealt with epilepsy they have made more changes and more are being made. New medications are reducing the seizures along with the time in the seizures and the focus time. More people are becoming aware of epilepsy today. I do believe they are working to find out more about Sudep.

You will be in peoples prayers

I was one of the many people that asked God 'Why Me" I did get an answer which was why not you. I got on a really religeous kick when I was 20. I stopped taking my meds and had no problems for well over a week. I wound up in status epilepticus. I was brought out of it but went back in in less than an hour. I came out of a coma 3 days later.I didn;t have any questions after that because I was told that he created the people who are doctors and his reasoning was they need healing and not everybody will look to God. From that day forward I have known I was put here for a reason and it is my job to find out what it is and do what I can to assist in any way I can.

I truely hope your and your child find the assistance you need and you also get the answers you are looking for.

Joe

I feel for you and am truely sorry for your loss.

Sudep does hit many epileptics and it can hit fast. In the last 50+ years I have dealt with epilepsy they have made more changes and more are being made. New medications are reducing the seizures along with the time in the seizures and the focus time. More people are becoming aware of epilepsy today. I do believe they are working to find out more about Sudep.

You will be in peoples prayers

I was one of the many people that asked God 'Why Me" I did get an answer which was why not you. I got on a really religeous kick when I was 20. I stopped taking my meds and had no problems for well over a week. I wound up in status epilepticus. I was brought out of it but went back in in less than an hour. I came out of a coma 3 days later.I didn;t have any questions after that because I was told that he created the people who are doctors and his reasoning was they need healing and not everybody will look to God. From that day forward I have known I was put here for a reason and it is my job to find out what it is and do what I can to assist in any way I can.

I truely hope your and your child find the assistance you need and you also get the answers you are looking for.

Joe

Re: My hubby passed away

Submitted by Lucybiddy on Fri, 2013-08-30 - 23:44
Thank you for taking the time to respond, I find it very reassuring that your faith is still there after what you've been through. Your a very strong person at least faith wise. I guess at the moment it's still very soon and raw but I feel like somehow I need to help just not sure where? Or how? That's my long term aim. Right now it's one day at a time.

Re: My hubby passed away

Submitted by mereloaded on Thu, 2013-08-29 - 21:58
I am so very sorry for your loss. I hate how waiting for a neuro takes forever! This is something that needs to change because access to specialized care is scarce and waiting periods too long. God bless your family and be strong for your little ones. You now have 4 beautiful reminders of your sweet husband. My sincere condolences.

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