My hubby passed away

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

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. 

Re: My hubby passed away

My condolences as mom with epi I take this message to heart

Re: My hubby passed away

I too have nighttime Epilepsy I am so sorry for your loss. God Bless!


Re: My hubby passed away

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

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

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

Re: My hubby passed away

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.


Re: My hubby passed away

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

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.

Re: My hubby passed away

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

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

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.

Re: My hubby passed away

My thoughts are with you and your family. And thank you so much for sharing your experiences and the loss of your husband. SUDEP has been kept in the dark too long. Luckily many people are trying to change this. Sharing your story and starting this thread for sharing is one example.

To everyone with epilepsy and family members, take a look at the SUDEP section here. More is being added all the time. Videos are also being made to teach health care professionals how to talk about SUDEP more easily.

We should all take heed in the other key message in this thread. Pay attention to changes in seizures. Don't assume that it will all be okay and accept continued seizures. Talk to the doctors. If you haven't been seen by an epilepsy specialist and still have seizures, it's time to ask for more help. Get a referral to an epilepsy specialist or Find an Epilepsy Center by clicking here or use this Find a Doctor link - Make sure you select by state or by type of specialist.

Hope this helps and thank you again!

Best wishes,

Resource Specialist