Husbands first seizure

Hi :grinning:
My husband had his first ever seizure this week which was really bad it was his full body locking and seezing , his eyes rolled into the back of his head he was froffing and the mouth and breathing abnormally I genuinely thought he was going to die in my arms we were in bed as it happend so I was right next to him I had to drag him on the floor ready to do cpr if needed when he did come around about 3 minutes later he couldn’t speak which then gave me a new fear we ended up going to the hospital and got no answers.
I’m really mentally struggling Iknow I’m smothering him and getting on his nerves constantly asking is he ok but I feel like I am walking on pins waiting for the next one to happen if he looks off I’m straight on him asking is he ok does he feel off , I remember every detail of the seizure I can see it clear as day as all day everyday it plays through my mind if I cuddle my husband I hold him a little tighter I am struggling to work through the trauma of the situation as I really though he was going to die but to him I’m being smothering he had been understanding but I don’t want to over bear him I would love any advice on how people cope with witnessing someone they love having a seizure :disappointed:

Hi Chelsea,
My son was diagnosed with epilepsy in March after his second seizure we didn’t witness the first. I hadn’t witnessed a full seizure until he had one in July sitting beside me as we were having breakfast even writing about it now I can feel myself getting anxious. I was the same as you constantly checking on him asking him was he ok every 5 mins. He went on to have another seizure in September after the initial shock the one thing he was most upset about was the fact that he felt that I was beginning to relax a little with him and that we were back to square one again. It made me think that I was causing him more stress than anything and he was concerned more about me than himself. He had said to his sister that when they happen he has no clue what is going on and can’t feel anything. Witnessing a seizure is not easy and I can’t say that I don’t think about another one happening but as time goes on it gets a bit easier. Your husband may never have another seizure :pray: I would say if you can try and get an appointment for an eeg as soon as possible there is more chance of something showing if he is not on medication and if he is eventually diagnosed with epilepsy if the eeg can show the cause then they are able to make a more informed decision on the best medication to use. Unfortunately my son only had an eeg after he was medicated so he has had 2 eeg’s now both showing nothing. I also went to the doctor as I knew I was struggling to come to terms with my sons diagnosis and he prescribed medication which I take for anxiety which has really gotten me through some stressful moments where my mind was filled with overwhelming fear of something terrible happening to my son. I searched the internet constantly for answers and to be honest it didn’t help calm the anxiety sometimes it made me worse. If you are searching online try find positive stories what we have to remember epilepsy is very common and I think part of the reason it is not talked about as much as it should be is that the majority of people are taking their medication and their seizures are well controlled. I hope your husband is ok and that this is a once off. Wishing you all the best.xx

Hi Chelsea,

I hope you are doing well. I am sharing my story in case it is of any help to you as knowing other people are going through the same thing can be comforting.

In 2021, my fiancée had his first ever seizure a week before our wedding and a month before his 30th birthday. It was a 10min long tonic clinic seizure which happened while he was asleep next to me. The second seizure happened a week later on the night of our wedding (yes, the actual night of our wedding) in the hotel we were staying in. Again in his sleep and while I was laying next to him. Both times the paramedics were called and 3 days later he was diagnosed with epilepsy.

On both occasions I dealt with the sight of seeing him have a seizure very badly. I was very panicky, I was hysterical, I had physical responses (a little graphic but I kept gagging as if I was going to vomit). As you say, it looks like the person is dying and is the worst thing I’ve ever dealt with. In the following months I kept replaying the scenes over and over again and it disrupted my quality of life. I have a high stress job in the city so it was doubly hard. On top of this, the emotional stress of grieving our old life and having to adjust to a new life that we didn’t ask for caused me a lot of pain. All of our friends were doing honeymoons, going for holidays, going out drinking etc and we couldn’t do any of it which felt like our chance at happiness was being taken away from us. I found both the trauma and the grieving very hard to deal with. My husband, however, has been the bravest man which has really helped.

Since then, I have had CBT therapy and undergoing EMDR treatment which is specifically for PTSD (I was diagnosed with it last year). The passage of time has also helped me to progress and we have since done some ‘normal’ things that I initially thought we would never be able to do. Don’t get me wrong, there are obstacles. I still can’t sleep next to him because my PTSD won’t allow me, which is both sad and also hinders holidays etc. He also had another seizure on New Year’s Eve which has set me back slightly. However, the place I’m in today is miles away from the first ever seizure. This shows me that things move on, you grow and you adapt. At the end of the day I love my husband and I want to help him through it so he can live a good life.

I urge you to get a doctors appt to diagnose him, and then see a psychiatrist for yourself. Therapy is a strong tool and will help you move on. Take some comfort that the passage of time also helps to heal. Be kind to yourself and give yourself the space you need. We’re all going through it and there’s no right or wrong way, but you will come out of the other side.

Take care.

Hi @Annie

I came across your post and was struck how similar it is to my own story.

I am 30, and my husband is 29. I was awakened one night, 6 months after our wedding, to find him having a seizure. I too thought he was dying, and I have so much empathy for you that this happened so closure to your wedding and how hard that must have been.
My husband again had a seizure a week later, on holiday in Amsterdam. This was incredibly frightening and I too suffered with a lot of anxiety upon seeing this. Unfortunately on our return my husband was diagnosed with encephalitis rather than epilepsy and he rapidly got worse, loosing his eyesight and memory. I felt very alone in all of this, with very little support from his family.
Thankfully, He made a full recovery and we were sent home. 6 months later, he had another seizure again in bed. I have also had EMDR therapy and have found this really useful. It’s so hard to feel safe in your own bed, a place that is meant to be comforting. When my husband makes any noise or twitches, I immediately feel my heart racing.
It does get easier over time, but it’s helpful to know others have shared a similar experience. Thank you for making me feel less alone.

Hi @Disneyologist

Firstly I’m so sorry for what you’re going through. It’s difficult to go through it while feeling alone. I hope you’re finding some good coping mechanisms to help you through.

I’m glad you found my post useful. It’s such a unique issue meaning it’s difficult to find other people who (1) understand what you’re going through and (2) can validate your feelings / make you feel like you’re not going crazy!

It’s great that you’re getting EMDR. Did you also get diagnosed with ptsd?

I can completely empathise with the feeling you get while laying in bed. I still find it difficult to lie in bed next to my husband so we’ve been sleeping separately since they first happened as I was not sleeping a wink and it started to really affect my ability to function. How have you found it being it bed knowing a seizure could happen? It would be really helpful to hear how you’re coping with that.

If you’d like to talk any further on any of this let me know - we can exchange contact details. As I said it’s a unique issue and not a lot of people can understand what it’s like to go through it.

Hi @annie

I am coping much better than I was thank you. I’ve been having EMDR for around 6 months now and I find it so useful. I wasn’t diagnosed with PTSD but I am a psychologist so I referred myself and I see my therapist privately. She is amazing and I’m so thankful for her.
I am sleeping better in the bed. I do really feel for you that you are unable to do this. My fear is sleeping elsewhere I will not be able to hear my husband as our house is 3 stories and we have no other rooms on the top floor. I know what time my husband had his seizures (within an hour of sleep) so the first hour is the hardest. I do have some quiet music on and I tend to go to bed later than him to avoid lying there an hour panicking.
It would be great to swap details , how would we do this?
I’m feeling as though I’m coming out the other side but it’s so tricky trying to talk to people about, especially as my husband is recovered and works full time so I feel people think I’m exaggerating. But they aren’t the ones that saw the seizure!
Thank you for your reply

I have followed you :smiling_face: look forward to chatting

Hi I am experiencing the same as you my boyfriend who is 32 to his first seizer in bed and he has never had them before. I thought that was it and he was dying. We are currently waiting for hospital appointments to be tested for epilepsy and they also found something with his heart. I feel I can’t sleep and every time I close my eyes I see it happening. I felt so helpless seeing him like that he fell off the bed and onto the bedside table and carried on fitting it was just awful. And now waiting for these hospital appointments I can’t rest. He thinks he is absolutely fine and asks why I keep crying as he doesn’t remember it and he doesn’t realize how bad it was! I am constantly checking in on him and just thinking the worst :frowning: