Seeking advice on how to deal with fear for newly diagnosed patient. thanks

[jesse]

Hi, Good Morning, everyone. My husband is around 40,he is just newly diagnosed several months ago. He is very worried and scared especially at night. What is the best I can do to help him conquer the fear and be not that stressed? When you were newly diagnosed, what are the kind of support that you felt was most helpful to you? And what are the things that make you feel better? Especially guys please provide your input, but inputs from anyone is greatly appreciated!

 

[Fedup]

jesse

Both of you are bound to be scared, its a new situation. The best you can do for him is what you are doing right now, being there for him, yes that sounds stupid I know but being at his side means more right now. The help starts when he accepts he has epilepsy, and he has no control over it unfortunately. It is not his fault, its not anything he did, it would make no difference what he did differently it would still happen. What makes you feel better, well for me its knowing that my wife loves me and understands I have no power over this and neither does she. Yes we still argue about it and what she wants done, what I should not have done or how I should have done it, this is all part of love. The knowing that I am still useful is important to me, I know the depression will get me, that I will feel bad for having this but its not my fault or your husbands.

Start with this first and with CWE, because at CWE you will get support which is important, you will be understood and you can learn new things. The people here are the best and will help you.

 

[Nakamova]

Hi jesse!

Your support and love will go along way towards helping your husband adjust and cope. My seizures arrived when I was 35, just after I'd broken up with my long-time boyfriend. So in my case I turned to friends and family to help, and they came through in different ways -- checking in from time to time, letting me vent and think aloud, coming with me to appointments, driving me around as needed. I especially appreciated that they didn't treat me with kid gloves -- for me, their being matter of fact helped me feel more grounded about what was going on.

Based on my experience, I would say that it's normal for your husband to be scared and worried. It can take a while to adjust to the idea of epilepsy and also to feel confident in how your body and brain are behaving. I've found that it can help to do progressive relaxation exercises in bed before going to sleep: Slowly tensing and relaxing one's muscles starting with the toes and working on up to the neck/head/face. Ideally the exercises should be accompanied by "belly breathing" (see https://en.wikipedia.org/wiki/Diaphragmatic_breathing) with longer exhales than inhales, but if that seems too complicated, one or the other is fine to try.

You should encourage him to ask for help if he feels like his anxiety is getting out of hand. Your husband's neuro or regular doctor can refer him to a therapist -- worth considering, even if he's never been to one before.

If your husband is on anti-seizure medication, there's also the possibility that it could be affecting his moods or his sleep. It can be hard to tell, but if you think that might be a factor, he should make a note of it and let his neuro know.

Best,
Nakamova

 

[Joseph]

Just like your husband I was very afraid, worried and frustrated when I first got the diagnosis. I kept thinking that there was something wrong with me and I didn't want to accept any of it. Two things helped me accept the fact that I have epilepsy.
1. Being told that it was ok to be scared (and it is!)
2. Having support from someone close to me.
This is not to say everything was fine and dandy once I accepted it, it was still scary but it got easier. Getting a better understanding of what epilepsy really is and sharing how my epilepsy affected me are the two things that rapidly helped me lose my fear after accepting the fact.
You obviously love him very much. Show him your love and be there for him. Ask him if he wants you to join him at the doctor appointments (if you are able), that was a really big support for me. To this day being open with my epilepsy and talking about it makes me feel more comfortable with it.
I wish you both the best.
//Joseph

 

[valeriedl]

I am a woman with epilepsy but I'll try to give you as much advice as I can.

I had my first seizure when I was 27 and had to be put into a coma for a few weeks and wasn't able to leave the hospital for a over a month, until they were able to get my to stop coming one right after the other.

I really didn't know what was going when I left the hospital because I didn't have to deal with knowing all about it from the very beginning but my family did. They were completely over protective and didn't want me doing anything by myself, I always had to have someone with me. When I went to the bathroom I had to leave the door open and someone would sit outside the bathroom till I was done. When I took a shower someone had to sit in the bathroom with me to make sure I was ok while I was in the shower. They would check on me at least every hour at night when I was in bed sleeping. If we went shopping I'm surprised that they didn't get a 'child leash' for me so I didn't wonder away. I think this was more frustrated than having epilepsy itself.

When they finally calmed down about it then I was able to do things by myself. I've had epilepsy for about 12 years now and there are still many things that they don't want me doing. I just want to hit them over the head most of the time and tell them that I can do these things alone!

As Fedup said 'Be there for him' just don't be like my parents were because it may make things and make him think that things are worse than they actually are.

At times I'll have trouble falling asleep at night. I don't know if it's due to one of my meds or if it's just me in general. Is there something that he can do at night before he goes to sleep. I read before I go to bed every night and at no other time. This sort of help my mind think that 'reading' means it's bedtime. I'll count myself to sleep. I start at 1 then go to 100. It may take a good many times to go through this but it relaxes my body and gets my mind thinking about nothing else but the numbers.

It's nice to see that you are on here trying to find ways to be there for him and give him as much help as you can!

 

[Matthew74]

I think what Fedup said. Just be there, emotionally, practically, and physically. You know him, what he likes and so on. Epilepsy can be very isolating.