hey guys,
My husband has epilepsy. I guess I just need a bit of a vent or some support as being the support is sometimes totally knackering physically & emotionally & maybe through this forum I can understand more about epilepsy & how it affects our relationship.
First time he had a seizure was terrifying, I had no idea what was going on as he's very ashamed & embarrassed by his condition & never told me or spoke about it. When I found his medication & asked what it was for he said "to stop me falling down" that was it. I suspected it was epilepsy but wanted him to tell me in his own time.
The first time it happened with me I was so upset & worried he was going to die that I couldn't even call an ambulance. I was so angry & ashamed at myself! I managed to call my mum & she figured out between my sobs that he'd had a seizure (thankfully my mum who works with special needs children has epilepsy training & could talk me through what do to)
He's extremely fortunate his seizures always are triggered by red wine & forgetting to take medication & next day you can guarantee he'll have a seizure. They happen about once, twice a year. Having to double check everyday to see if he's remembered to take the medication annoys him no end & I feel like a nag but I have to because if I trust him, as I normally do, eventually he'll slip up & forget.
I have a hard time trusting him to look after himself after we were on holiday in Europe, he was driving & my worst nightmare happened, he had a seizure while driving on the autobahn. I thought we were going to die. He has no warning if a seizure is about to occur, we were mid conversation & all of a sudden the car started drifting to one side & I yelled at him to turn the car & then realised he was having a seizure.
Our guardian angels were looking after us that day as I somehow managed to run the car into an overpass & into a lane full of witches hats that slowed the car down, thankfully there were no cars nearby & I rammed the car into a wall & it stopped. Apart from shock & whiplash we were fine. Not being in an English speaking country, with no idea where we were & hardly any phone battery left was one of the worst experiences of my life. I honestly thought we would die & he was blissfully unaware of the whole thing.
As he had no idea what happened & couldn't understand the severity of what had happened, he couldn't really relate as he wasn't "there" mentally during the ordeal, so to him its as if it happened to someone else & thus not really sympathetic to why I was so upset or really thankful for me saving our lives or sympathetic to the anxiety I suffered afterwards which was tough.
During a seizure he's normally out for 1-5 min & can't remember anything, (when he cant remember who I am truly breaks my heart) Eventually his brain re boots & he'll know who I am half an hour later & needs to spend the rest of the day sleeping.
I am terrified of him doing this again especially if we had kids in the car. I don't know if I could forgive him if that happened again, not that its his fault for having epilepsy, but the fact that he can control it & can be careless with his medication. Everyday he drives to work & I am anxious that he gets to & from work safely (we also live in south africa, which is a dangerous place to drive with the chance of being highjacked etc)
I guess I'm sort of getting this off my chest & I am sorry for rambling, once you start it doesn't stop!
Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?
I love him more than anything & would do anything for him, all I want is for him to be ok & live a long healthy life together & maybe have reassurance that when we go through a rough patch & he says things that hurt so much it may be due to other factors caused by his epilepsy (ie one day he came home & said it was over with no warning, no problems before etc & it utterly crushed me) then wondered why I was so upset the next day as he said he didn't mean it. It can be tough taking all the punches sometimes!
thanks for listening cheers s
My husband has epilepsy. I guess I just need a bit of a vent or some support as being the support is sometimes totally knackering physically & emotionally & maybe through this forum I can understand more about epilepsy & how it affects our relationship.
First time he had a seizure was terrifying, I had no idea what was going on as he's very ashamed & embarrassed by his condition & never told me or spoke about it. When I found his medication & asked what it was for he said "to stop me falling down" that was it. I suspected it was epilepsy but wanted him to tell me in his own time.
The first time it happened with me I was so upset & worried he was going to die that I couldn't even call an ambulance. I was so angry & ashamed at myself! I managed to call my mum & she figured out between my sobs that he'd had a seizure (thankfully my mum who works with special needs children has epilepsy training & could talk me through what do to)
He's extremely fortunate his seizures always are triggered by red wine & forgetting to take medication & next day you can guarantee he'll have a seizure. They happen about once, twice a year. Having to double check everyday to see if he's remembered to take the medication annoys him no end & I feel like a nag but I have to because if I trust him, as I normally do, eventually he'll slip up & forget.
I have a hard time trusting him to look after himself after we were on holiday in Europe, he was driving & my worst nightmare happened, he had a seizure while driving on the autobahn. I thought we were going to die. He has no warning if a seizure is about to occur, we were mid conversation & all of a sudden the car started drifting to one side & I yelled at him to turn the car & then realised he was having a seizure.
Our guardian angels were looking after us that day as I somehow managed to run the car into an overpass & into a lane full of witches hats that slowed the car down, thankfully there were no cars nearby & I rammed the car into a wall & it stopped. Apart from shock & whiplash we were fine. Not being in an English speaking country, with no idea where we were & hardly any phone battery left was one of the worst experiences of my life. I honestly thought we would die & he was blissfully unaware of the whole thing.
As he had no idea what happened & couldn't understand the severity of what had happened, he couldn't really relate as he wasn't "there" mentally during the ordeal, so to him its as if it happened to someone else & thus not really sympathetic to why I was so upset or really thankful for me saving our lives or sympathetic to the anxiety I suffered afterwards which was tough.
During a seizure he's normally out for 1-5 min & can't remember anything, (when he cant remember who I am truly breaks my heart) Eventually his brain re boots & he'll know who I am half an hour later & needs to spend the rest of the day sleeping.
I am terrified of him doing this again especially if we had kids in the car. I don't know if I could forgive him if that happened again, not that its his fault for having epilepsy, but the fact that he can control it & can be careless with his medication. Everyday he drives to work & I am anxious that he gets to & from work safely (we also live in south africa, which is a dangerous place to drive with the chance of being highjacked etc)
I guess I'm sort of getting this off my chest & I am sorry for rambling, once you start it doesn't stop!
Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?
I love him more than anything & would do anything for him, all I want is for him to be ok & live a long healthy life together & maybe have reassurance that when we go through a rough patch & he says things that hurt so much it may be due to other factors caused by his epilepsy (ie one day he came home & said it was over with no warning, no problems before etc & it utterly crushed me) then wondered why I was so upset the next day as he said he didn't mean it. It can be tough taking all the punches sometimes!
thanks for listening cheers s