Question to those who have a loved one with E

[girlwithadog]

So my husband and I are newly weds and for the two years prior to our wedding he's been incredible through it all. I had a Tonic clonic in August 2011 and a drop in 2012 at 25 years old. I got diagnosed with E a few weeks before the wedding. After the tonic clonic and the drop seizure I became so fearsome of everything and so did my husband. If I dropped soap while showering he would come banging on the door. He was there every moment after the seizures crying and so afraid. When my anxiety hit he would wake up all throughout the nigh giving me back rubs to help calm me down. He's been so incredible. But he's so afraid.

This whole time I've been worried about myself and how I was handling it not thinking it effected him so much. But it does. He doesn't like to talk about it because it scares him but he will if I want to for me. He told me the other day just how much it still upset him. Not in a negative way but he hates leaving me alone because he's always afraid something will happen to me. He has so much worry and I've been so focused on helping my worry and he's just been in the back pushing his feelings to the side and that isn't fair. He still cringes thinking about the tonic clonic and that was almost two years ago. He thought I died that night because neither of us have ever been through that.

I want my husband to feel better. I want him to be happy. I don't want him to be afraid and I feel so horrible for neglecting his feelings for so long. So I'm here to ask... How can I help him? How can I help him to not be afraid? It hard trying to convince myself to be afraid, how can I help him to do what I myself can't do?

What can I do to help my husband?

 

[Cint]

Is there a local Epilepsy Foundation that meets regularly in your area? Or have him go with you to your neurology appt and speak with your dr. about his fears. You are very fortunate to have someone who's so concerned. Education is the best way to get over the fear. Check this website for more info: http://www.epilepsy.com/epilepsy/safety/overview

 

[girlwithadog]

Thank you Clint! I really am blessed to have such a wonderful supportive husband. We read over the link and part of it was scary. The part about SUDEP and irregular heart beat when I already have an irregular heart beat and am unmediated. I may go on meds but we are trying to conceive ATM so until we have a child I would prefer to not be on meds. It's very sobering reading all of that but I thank you, with knowledge comes some power and my husband had a good laugh at the idea of me in a helmet like the page suggested for drop seizures

 

[Nakamova]

This is a question that comes up a lot here at CWE. All seizures are dismaying and unpleasant, but tonic-clonic seizures can appear especially scary to the observer. It's very difficult for a loved one to see it and not fear the worst.

The temptation for the caregiver is to wrap their loved one in bubble wrap, and maintain a 24/7/365 high alert. The toll this takes on both of you is unsustainable and it's an unrealistic way to live. Essentially, epilepsy has taken control of you, rather than the other way around.

At some level, your husband must know this. If he's struggling to find a way to manage his fears, you might start by having him talk to your neurologist to get a realistic sense of what goes on in a seizure. It may be scary to witness, but for the person having a tonic-clonic it's not painful during the actual event. I've had nearly twenty tonic-clonics; the aftermath is no fun, but the actual seizure doesn't bother me. I'm lucky -- my seizures are currently controlled by medication -- but I know there's no 100% guarantee that I'll remain seizure-free. Still, I happily live alone, drive everywhere, swim by myself, and generally refuse to let epilepsy take over my identity.

Your neuro may be able to recommend a caregiver support group, or there may be one available through a local epilepsy support group. You could encourage your husband to join CWE (which was founded by Bernard in support of his wife Stacy who has epilepsy.) It can provide a huge amount of relief to know that you are not alone. Encourage your husband to accept help from others -- let friends and other family members shoulder the load. Remind him that no one is a "perfect" caregiver, that he shouldn't feel guilty about asking for help.

In order for you two to support one another, you both must feel a degree of autonomy and independence. This means he has to make sure he takes care of his own needs, and it means he has to let you find reasonable ways to do the same -- otherwise you can both feel limited and diminished. Encourage him to get connected to sources of emotional and social support. And focus on activities (both together and separately) that that make you feel healthy and positive.

 

[KarenB]

The temptation for the caregiver is to wrap their loved one in bubble wrap, and maintain a 24/7/365 high alert. The toll this takes on both of you is unsustainable and it's an unrealistic way to live. Essentially, epilepsy has taken control of you, rather than the other way around.

Nakamova, you couldn't have said it better!! I remember our epileptologist saying once, "It's about living with epilepsy, not having it control you."

I do still feel fear, but (now that Jon's stable again -- seizure free 5 months) we're starting to take some baby steps -- like, letting him go up and down the stairs by himself.

Girlwithadog -- if you're wanting to conceive, be sure to get started now on folic acid. And, I would suggest that if you don't want to be on meds during this time that you look into dietary means for maintaining seizure freedom (as hormone changes during pregnancy might trigger a seizure). I forgot the name of it, but there's one listed in these forums somewhere that basically controls glycemic load -- it's sensible and looks easy enough to follow, and you should be able to get good nutrition on it that you'd need while pregnant (which would be harder to do on the stricter Modified Atkins).

 

[KarenB]

Ah!! Here's the diet I was talking about -- the LGIT (Low Glycemic Index) -- that I would especially recommend for someone planning to get pregnant.
http://www.coping-with-epilepsy.com/index.php?p=low-glycemic-index-diet

Hormone changes during pregnancy can cause a rise in blood sugar (also this happens when on menstrual cycle -- the nutritionist at the Charlie Foundations thinks this may possibly be why some ladies tend to have seizures at that time as well as during puberty).

The LGIT diet is designed to keep blood sugar levels at a safe level, and to prevent the spikes and crashes in blood sugar that can trigger seizures.

Here's a list from Harvard U to give you a general idea of the glycemic index of various foods:
http://www.health.harvard.edu/newsweek/Glycemic_index_and_glycemic_load_for_100_foods.htm

I've been pretty much following this plan since late last Fall, and it's fairly easy to stick to, as long as I stay away from the bakery!!

For myself, I cut out sugar and any refined grains. I eliminated most wheat products. I still consume other whole grains (high fiber helps slow carbohydrate absorbtion), but about half a serving rather than a full serving (this reduces calories, so to prevent weight loss, you'd need to increase protein and healthy fats, which also help slow down absorbtion of carbohydrates). Lots and lots of leafy green veggies, and summer squash, and broccoli, and cabbage, and carrots, and asparagus, and also daily eat fruit (1 or 2 servings) with a lower glycemic load.

 

[Cint]

The temptation for the caregiver is to wrap their loved one in bubble wrap, and maintain a 24/7/365 high alert. The toll this takes on both of you is unsustainable and it's an unrealistic way to live. Essentially, epilepsy has taken control of you, rather than the other way around.

:agree: If you continue to live this way, you will never have a life and end up miserable. I didn't mean to scare you with that website, only educate you. I've had E for over 30 years. I've had two children during those years and was taking AED's during that time. Both kids are now college educated (one just graduated from law school) and healthy. And both have witnessed some ugly tonic/clonic seizures while growing up, too. Even went status once and they saw their mom being taken away in an ambulance. They thought I was dying, but I'm still here! Plus, I was married to a pilot and lived 1500 miles from family, so had to cope with seizures by educating my kids and friends/neighbors about epilepsy/seizures. That is why I asked if there is a local Epilepsy Foundation in your area? And like I and Nakamova said, have your husband go with you on your neuro visit and talk with your dr. about your/his fears.

Like Nakamova, I now live alone, but lost my driving privileges so once again I have to rely on friends and family for transportation. But I'm not scared that I will have seizures or think the "what if" because I have had plenty of seizures (CP and TC's) in public. Sure, I know it could happen, but have learned to deal with epilepsy and life. That way of thinking nearly destroyed me years ago. Epilepsy is part of my life just like asthma was part of my son's life. One learns to deal with it.