Coping with a seizure of a loved one

[GJH63]

Hi All, this is my first time of posting on this forum and am I looking to help by Daughter and her Fiancé. He has Epilepsy and we have recently discovered that it has been not been manged correctly for about 10 years. This has come as a shock to us all.

Although we are trying to see the positive side of the recent assessment, i.e. better managed can only be a good thing, my Daughter really struggles with seeing her beloved Fiancé have a seizure. Thankfully it has only been one, but she really really struggled to see him go through it. She is worried that as they change his medication the likelihood of a seizure maybe heightened.

Can anyone advise of how a loved one can be as supportive as possible to someone with Epilepsy but also manage their own emotions and feelings if they see their loved one have a seizure.

BTW my daughter is a Health care professional in the NHS and although is used to dealing with medical situations every day at work finds it so hard seeing her Fiancé having a seizure.

Any advice or information would be gratefully received.

Thank you

[Anonite]

Hi GJH63 ,

I can totally relate to your daughters feelings my son was diagnosed with epilepsy last March and from March to September had 5 seizures 2 of which I was with him. I have flash backs and constantly worry about seeing him go through that again it is not easy at all. I found counselling helped it did not stop the anxious feelings and worry but definitely helped me think a bit more positively. I suppose what you can do for your daughter is just be there for her having people listen to me vent definitely helps me. If her anxiety gets too much maybe anti anxiety medication might help a little, ease it a bit,help her think more rationally. I myself have days that are ok but I still worry constantly I sometimes think is it always going to be like this it is like life has stopped and epilepsy has taken over. The positive in your daughters fiancé’s story is that they seemed to be able to have good control previously and hopefully if they do get him on the best medication for his seizure type then he will become seizure free. I think if I could talk to someone who has gone through the same experience and is at the other side it would be great but it is very hard to find people who share positive epilepsy stories as they tend not to be on forums unfortunately. Sorry I can’t be more helpful. Wishing you and your family all the best.

[GJH63 in reply to Anonite]

Hi Ruth107,

Thank you so much for your reply and you kind words. As you say it is very difficult to see your loved go through such an awful thing. I had been thinking about trying to find a councillor or someone that could help her with her anxiety. Hopefully the new medication review will ensure her Fiancee epilepsy will be better managed but it is the transition that she is so anxious about. With the wedding in nine weeks it’s all adding to the stress . Thank you so much for taking the time to reply and I wish you and your family all the best best. Take care

[wxy123]

It seems you have made a positive step by contacting this site. Can you find a local epilepsy group for help and advice?

Could I suggest some positive planning for the wedding, such as working out what you would all do if her fiance has a seizure at the time, discussing it with whoever takes the ceremony and if there is some way to delay if necessary. Whatever works for your circumstances. This should remove some anxiety and thus reduce the risk of a seizure.

I wish you all the best of luck and hope you get the support you need.

[GJH63 in reply to wxy123]

hi wxy123, thank you so much for your reply. I am actively seeking some local counciling support for my daughter to help her with her anxiety. Have reached out to a local psychologist to see if they can suggest anyone that may have experience with managing the impact of witnessing a seizure of a loved one.

Thank you for your kind words they are much appreciated

[GillyA]

I’m writing from the perspective of someone who has epilepsy, which started after I left home so my family have never actually seen me have a seizure. But others have, work colleagues, friends, strangers and hardest of all perhaps professional contacts who see me at my absolute worst.

It’s worth your daughter talking to her partner about what he experiences during a seizure. For many of us, we have no knowledge of the seizure at all and actually find recovery harder than the seizure itself. What we remember is possibly the aura beforehand, but mostly coming round, often confused, disoriented and possibly injured. So what we need is someone to be calm, kind and follow seizure first aid protocols. For me, I’m so disoriented that often I can’t really understand what’s going on. I find someone holding my hand or stroking my head really helps, it seems touch is the first sense that comes back.

I can only imagine how upsetting seeing someone you love have a seizure is, but it may help your daughter to understand how she can best help her partner, find out what he needs and have something to focus on.

Best wishes to all of you, I really hope the medicine changes help.

[GJH63 in reply to GillyA]

Hi GillyA,

Many thanks for your reply and advice. After the recent medical review we have had lots of conversations about how we can all try and help each other and understanding the impact on each other has been key. Best wishes to you and thanks again for your reply

[EpilepsyAction1 Partner Epilepsy Action]

Hi GJH63

Thank you for your post. What your daughter is experiencing is something we often come across on the Epilepsy Action Helpline. Living with the uncertainty is not easy, but with time many find their own way of coping.

Now they are reviewing her fiancé treatment, hopefully things will improve for them both.

Please do make your daughter and her fiancé aware of the Epilepsy Helpline (freephone) 0808 800 5050. Callers to the Helpline are guaranteed a friendly welcome and can discuss their concerns confidentially or we can just listen.

Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm

Regards

Diane

Helpline Team