Supporting husband with epilepsy

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lornatjepson

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Hi there,
I am currently trying to support my 25yr old husband who developed epilepsy about three years ago after an accident while on training with the army.He has recently been granted medical discharge and is technically on sick leave untill that date. My husband is not the type to talk about how the seizures are affecting him but I can see that each time it happens he gets more withdrawn and frustrated. I would give anything to spare him the pain and frustration he feels and if i could just chat to people who are going through the same thing then prehaps I can support him properly without worrying that im "mothering" him. If anyone has any advice on how I can help him through this I would love to hear from you.
Thanks Ltjepson
 
Hi lornatjepson,

Welcome! whether you know it or not, you're helping him by just being around. By not divorcing him, leaving him by himself, all of these kinds of things. We that have seizures often feel that we are a burden to those we love, we feel that we have let our friends, family and loved ones down some kind of way. We have mood swings, one day we're feeling fine and the next day we are so depressed till we can't stand ourselves. Love on him as much as you can, he appreciates it, believe me he does. Suggest not demand, give support because his whole world has changed. Its a big pill for him to swallow (no punt intended). It's going to be a challenge for you, but you love him, so it's worth it. :)
 
Hi lornatjepson, welcome to CWE!

It's great that you are looking for ways to help your husband. Please encourage him to visit and/or join CWE himself. The members here are empathetic and supportive. A number of them have been or are still in the military. We do also have members who are caregivers, friends, or family members of people with epilepsy, and you can find their posts on here as well.

Are there any local support groups your husband could join? You may find help by contacting the Plymouth rep listed here: http://www.epilepsy.org.uk/services/branches/southwest.html
Even if he doesn't like to talk about epilepsy, he might find some solace by listening to others.

Is your husband on any medication? Some of the meds can affect mood. It's possible that could exacerbating your husband's frustrations. If that seems to be the case, it's worth talking to his neurologist about the med or dosage.

In general it can help to be proactive about one's epilepsy and overall health. There are some great tips here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ They may help give your husband some sense of control -- he may not be able to control the seizures, but he can choose how he reacts to them.

There are forums here for chatting and getting a laugh, as well as for venting and posting questions. I hope both you and your husband are able to take advantage of them.

Best,
Nakamova
 
Thank you for your kind words about me supporting him, it breaks my heart when he apologises after a seizure has resulted in another A&E visit, I do remind him that it is not an inconveniance or problem for me, I just see it as something that we will get through together.
As for medication, he is on Keppra and Lemotrotine (not sure how to spell it!) it will be increased soon as he has just had another seizure recently.
Mood wise, it is usually just after a seizure he withdraws, which i completely understand, I know his frustration is growing also, everytime it happens he tends to hurt himself. I can try suggesting he join the forum or a group in Plymouth, mayby just mentioning it then letting him think about it.
 
I would suggest that you do some research on neurofeedback. My daughter did this brain training, along with making nutritional changes and it has improved the quality of her life immensely .

I see that you are in the UK and I am not sure of the work being done in the area there. I do know that training is being done in Switzerland often. We worked with the EEG Institute here in CA who has a program for Vets.

Please know that there are many known cases, that have had brain injuries and become seizure free.

My daughters have been related to nutrition and she is improving daily. She remains med free.
 
I think there is a lot of social pressure on men not to show emotions, especially in the army. I talk to someone or have a bit of a cry and ask for a hug, but men tend to punch things or go quiet.

This is all very new to him and is going to take some adjusting to. Hurting himself may leave him feeling very vulnerable and dependent. He's now seen as not physically fit and has lost his job. These are all huge blows to his masculinity.

I think a big part of the answer is going to be time.
 
I already had epilepsy when I met my husband. The first seizure I had with him I ended up in the ER. My family thought for sure that he was going to leave me but he didn't. He knew what he was going to be dealing with when he mairred me.

He doesn't try to mother me, if that's the correct way to put it. He'll sit beside me while I'm having the seizure to make sure I don't hurt myself. When the seizure is over he'll ask me if I need anything and get it if I do. He will usually then sit in the chair in the same room with me and watch tv. Every so often he'll ask me if I'm doing alright. I like the fact that he doesn't sit beside me and hold my hand for hours after I have one.

Alot of times when I have a seizure I'll do goofy things. The last bad one I had I kept trying to put a pillow on my foot like a shoe. It seems too that when I start to come out of one he asks me the simple questions to make sure I'm ok, like what's my name, where am I etc... When he will ask me who he is I never know, I even said he was my exboyfriend once. When he tells me the things that I've done when I have one we usually end up laughing about it. He still makes fun of me because I never know who he is.

I don't know if your husband does things like that but you could try talking about them like we do. He may not get upset about them then.

I'm going to a psychologist right now for a different reason. I'm having shaking spells but I'm not blacking out like I do when I seize so my neurologist suggested I go to one.

The psychologist can't believe that I'm not depressed about having epliepsy as many people are. When I go out with friends I'm usually the one that's having the most fun. I know how I am and I what's going on with me so I've learned to deal with it and not let it get me down.

The two of you could try going to some sort of counceling. Sometimes having a third person asking the right questions and will make the right answers come out could let him know how you are feeling and what he is feeling and the two of you could work on things together.

Try to get him to join this site. He might get some help off of it. These people don't know who he is so it might also be easer asking questions about what's going on with him. It's easier than looking someone in the face and seeing their expression when you tell them what he's dealing with. You also get alot of different answers about how to figure out how to cope with things. Many people might be dealing with the same issues as he is so it could help him alot knowing that he's not alone.

Sorry this is long but I hope you could get some help from it.
 
Valeried,
what you have said is very helpful, like your husband I do just sit in the room or just potter around nearby in case he does need anything. There are some things that we can talk about after and laugh such as my husband not knowing who I am etc, however as the majority of his seizures end up in A&E he is immediatly frustrated. I am going to suggest he join this community as I think it would do him the world of good to chat to others who are going through similar situations and understand the frustrations that I can only see as an outsider. He recently admitted to me that he feels like a nuisence having to rely on others to drive him places, we are currently staying at his parents who live in the middle of nowhere and if everyone is out he feels trapped as he cant go anywhere. I have looked into a support group where we live and may see if he would like to go to that. By nature he is not a person who opens up about how he feels or shows alot of emotion and im worried about him letting them build up inside. I feel so useless at times as I just want to "fix" things for him and make everything better. Thank you very much for your advice, it has been very helpful.

Lornatjepson
 
Hi lorantjepson,
Good on you for looking for a way to support your husband. I think everyone is different and deals/responds to 'E' in different ways. Trying to make light of it seems to be a common thing. Laughter is the best medicine. But a big part of it, is the person themselves. Your internal dialogue, what you think and say to yourself really shapes how you deal with it. I might seem positive to my family and friends and I am most of the time, but those dark feelings I keep to myself. Thats where this website is just so so helpful and supportive. You can be somewhat anonymous here and share all your thoughts and receive support from people who know what youre going through, no judgement.
If your husband doesn't share his feelings easily, this site may be for him. he can just tap away on his computer in his own private time.
Good Luck :)
 
Have you told the doctor about his feelings? I go with my son to all of his visits and let the doctor know what he does, how he feels and what the seizures are like. The doctor has told us that a lot of his feeling down and his mood swings had to do with Kepra and he took him off of it. From reading here I see that mosy people react differently to the meds and you have to find the one that works best for you with the least side effects. We are on number 5 in a little over a year. So far not to bad on side effects, and he wasn't having seizures until the last few days he seems to be having partial complex ones again.
 
So far all his appointments have been through the army doctor so I havnt actually been to any with him (not even sure im allowed!). I am a bit hesitant to talk to his doctor about how he is feeling as he hasnt even really spoken to me about them and I dont want him to feel im going over his head with things. Im going to keep trying to get him to open up to me first and then see how he feels about talking to his doctor or mayby I should just suggest he talks to his doctor without me, he may not want to talk to me as he feels it would "add to my problems".I of course have said that this isnt the case and I would rather know how he is feeling and have him open up to me but slowly we are getting there.He is beginning to talk about things alittle bit at a time.
 
I would think any doctor who works with an epilepsy patient would welcome another set of ears and eyes at the appointment since most patients have no recollection of any of the disorder activities that have happened not to mention the effect the disease and meds can have on the memory. I think my sons (who is 22) nuerologist talks more to me then my son because I can relate exactly what is going on and when. I agree you should try and get your husband to read some of these threads so he can see he isnt alone and some of his feelings could very well be because of the medications he is on and if it isnt relayed to the doctor there isnt anyway for it to be changed. My son thought he was having panic attacks and getting depressed, when I relayed that his doctor some was medicine related and some were actually types of seizures which prompted him to change his meds. Another med caused him to have outbreaks of rage, my son would never have mentioned this to the doctor but because I was in there and mentioned it, the doctor said it was a side effect of Kepra so he took him off of it.
I wish you luck and hope you can get your husband to open up or at least read the post so he can see he isn't alone and that there is possibly a solution to help him with his feelings that may be as simple as a med change
 
My husband always goes with me to the neuro appts. I have trouble remembering things and when I have a seizure I don't know what I did during it.

I think it's good to have him there because as said he's like another set of eyes. He sometimes knows if I will be acting different, possibly due to a med that I was put on or something like that, and I don't realize that anything different is going on. I like the fact that he's there to talk to the neuro and answer questions that I can't.
 
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