New to this, wife needing help

[htl2010]

Hi I have recently had an introduction to epilepsy that I won't forget in a hurry. My darling hubby was diagnosed about 2.5 years ago after suffering a seizure at work. I didn't know him then. We recently married after being together just over a year. I have always known about his epilepsy but it has always been controlled apart from a breakthrough seizure last year, again at work so I had never actually seen him have a seizure until last Sunday.

That morning he says he got up about 6am to go to the bathroom. He must have got back into bed because about 7am I was woken up to the sound of him having a seizure next to me. I was absolutely terrified as this was the first one I had seen him have but I knew what was happening and called an ambulance. He actually fell off the bed onto the floor during the seizure as the convulsions were very violent and he badly bruised his shoulder. He went blue and stopped breathing for a while, his eyes rolled back and I thought he was dead. I know now that these can be typical symptoms of a Tonic Clonic but at the time I honestly thought he was gone. Once it was over he started breathing again, very noisily and snorey.

He was allowed home from hospital once they had taken bloods. He was fine all Monday, albeit tired, but then Tuesday morning he had two more fits so was taken to hospital again. This time they kept him in overnight and I am so glad they did as he had 5 more in the early hours Wed morning and went into Status Epilepticus and they had to administer drugs to halt the seizures. He also inhaled fluids so they had to intubate him (is that the right term?).

He is having to stay in hospital until at least Monday until they get the results of scans and bloods.

When he was first diagnosed they found a small tumour at the front of his head which they think is causing the seizures and I am very worried that something has changed which has caused this latest batch of seizures.

I have to admit I am new to epilepsy and probably know little about it but I want to find out as much as I can to help my hubby. I love him dearly and want to do all I can to support him. I am currently very emotional as I hate leaving him in hospital as I keep thinking what if he has a fit in the night and nobody gets to him in time and he dies, is this a normal thing for partners to think? They have actually been very good and as he is in a room of his own I can stay over any time I like on a chairbed which I have been doing but I am very tired and really need to be in my own bed but then I think I won't sleep at home due to worrying about him.

I'm sorry this is so long-winded but I feel lost and helpless right now and just need to get all of this off my chest in order to be the strong capable partner I need to be for my hubby. I don't get too emotional around him as I don't want to upset him and so am full of pent up emotions which are taking their toll at present.

I think I need to know, where do we go from here, what is our best plan of action, and does it ever get any easier to witness a loved one in so much distress.

Thanks for listening
xxx

[tase37]

Hi!
When our little baby was having seizures, I don't think I ever got used to them but in time I excepted what they are and I was calmer.. I think it is always heart breaking to watch maybe due to the fact that whatever we do we can't really and truely help that person.. all I could do was stroke her and peak to her calmly..I still feel tears fill my eyes..especially if I stop and think about her first ever seizure at 2 days old
I really hope and beleive that you will get a lot of support and help from this forum..I wish you lots of strenght to help you cope with your husbands condition and I hope that they will get it all sorted very soon in the hospital!! I think if you can get a sleeping pill or something to let you get a good nights sleep that it would be a good idea..your husband needs you healthy and alert..not tired and lost Big virtual hug to you..

[Nakamova]

Hi htl2010, welcome to CWE!

We're glad to have you here, though very sorry about the circumstances. No need to apologize for being long-winded. We're here to listen. (Plus your post isn't that long. Trust me!). I send a big hug your way, and hope things improve for you and your husband.

I know it must be very hard to witness his seizures. I hope other CWE members who are caregivers of people with seizure disorders will chime in with their empathy and understanding for what you are going through. Friends who have witnessed my seizures have become less disturbed by them. I've never had to see my own flopping around, but I'm sure it looks worse than it feels. I want to reassure you that being unconscious during the seizure means there's no pain, and no disturbing memory of the actual event. Afterwards there's definitely soreness and fatigue and confusion, but during there's no suffering.

It's completely normal to feel anxious about your husband in the hospital. But rest assured, if he has another seizure, that is the best place for him to be. Now that they know that a tumor is causing the seizures they can monitor it and him and decide what the next step is. You are doing the right things by reaching out and asking for information -- the more you know, the more it will help in making decisions about treatment and care for your husband. Don't be afraid to ask the doctors tons of questions, and to keep asking if their answers aren't clear. If you can, write down what they tell you, and write down any follow-up questions you may have as well.

Your husband must be exhausted at this point, and you must be too. Do you have family members and friends who can be with you to lend a hand or an ear? It's always good to spread the stress around. Feel free to spread it around here!

Best,
Nakamova

[htl2010]

Hi!
When our little baby was having seizures, I don't think I ever got used to them but in time I excepted what they are and I was calmer.. I think it is always heart breaking to watch maybe due to the fact that whatever we do we can't really and truely help that person.. all I could do was stroke her and peak to her calmly..I still feel tears fill my eyes..especially if I stop and think about her first ever seizure at 2 days old
I really hope and beleive that you will get a lot of support and help from this forum..I wish you lots of strenght to help you cope with your husbands condition and I hope that they will get it all sorted very soon in the hospital!! I think if you can get a sleeping pill or something to let you get a good nights sleep that it would be a good idea..your husband needs you healthy and alert..not tired and lost Big virtual hug to you..

Hi Tase37!
Thanks for your reply, I feel a lot better today and hubby seems a lot brighter which is good. I am sorry you had to watch your little baby have seizures, it must have been very distressing for you. I trust things are better now for you. I am really glad I found this forum as I have read some interesting stuff on here which will help me to deal with what's going on in a practical way and maybe take some of the 'scariness' out of the situation. I think we're just looking forward to getting back to some sort of normality when hubby gets out of hospital, whatever 'normal' may be lol....! Thank you for your support, it means a lot...: )

[htl2010]

Hi htl2010, welcome to CWE!

We're glad to have you here, though very sorry about the circumstances. No need to apologize for being long-winded. We're here to listen. (Plus your post isn't that long. Trust me!). I send a big hug your way, and hope things improve for you and your husband.

I know it must be very hard to witness his seizures. I hope other CWE members who are caregivers of people with seizure disorders will chime in with their empathy and understanding for what you are going through. Friends who have witnessed my seizures have become less disturbed by them. I've never had to see my own flopping around, but I'm sure it looks worse than it feels. I want to reassure you that being unconscious during the seizure means there's no pain, and no disturbing memory of the actual event. Afterwards there's definitely soreness and fatigue and confusion, but during there's no suffering.

It's completely normal to feel anxious about your husband in the hospital. But rest assured, if he has another seizure, that is the best place for him to be. Now that they know that a tumor is causing the seizures they can monitor it and him and decide what the next step is. You are doing the right things by reaching out and asking for information -- the more you know, the more it will help in making decisions about treatment and care for your husband. Don't be afraid to ask the doctors tons of questions, and to keep asking if their answers aren't clear. If you can, write down what they tell you, and write down any follow-up questions you may have as well.

Your husband must be exhausted at this point, and you must be too. Do you have family members and friends who can be with you to lend a hand or an ear? It's always good to spread the stress around. Feel free to spread it around here!

Best,
Nakamova

Hi Nakamova,
Many thanks for your reply. Thanks for putting my mind at rest regarding hubby not suffering during a seizure. It was good to look at the situation from a different point of view, ie the person having the seizure. What you say pretty much echoes hubby's point of view. He says he is never aware of anything until he comes around and sees people standing over him. I do have lots of support from friends, family and the pastor of my church so I'm thankfully not alone in all this, but I think it has helped to come onto this forum and talk to people that actually know and can empathise with our situation. Thanks for your support and advice so far...I am sure I'll be back with lots more questions soon! : )

[tase37]

So glad to hear that your hubby is home
Our baby has been doing really well now..seizure free since the beginning of Febuary