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[NancyJo]

Hi. I'm NancyJo and I am the wife of a person with seizures. He feels he has had them since his teens but following a car accident more than 20 years ago and an unknown viral illness more recently (11 years), seizures have taken over our life. From funny sensations, uncalled for laughing and other minor things, we have progressed to periods of forgotten agreements, conversations and decreased social life. There have been several episodes of status E, too, the last one was 50 minutes. I am frustrated with the lack of help I receive from professionals in trying to understand "what this means" and the changes it has brought to our lives. I long ago lost my coping skills and my husband's strong denials and stubbornness has made things all the more difficult.

Sometimes I feel like we are making progress, then he starts having regular seizures again, oddly, particularly in the latter part of the year. His neurologist (with a GREAT reputation) doesn't seem to identify with the seasonality of it. He has been on Dilantin (5 daily) for years. He is ultra sensitive to many other meds and basically rejects even considering any others because of previous bad experiences. He has chronic back pain from the prior car accident and requires narcotic medications to get out of bed. He does not keep a seizure diary because "writing is very difficult" for him.

I look forward to receiving the support I need as his caregiver. As many have reported, I have to stay ready and vigilant for whatever may happen to him during any given day while he basically "checks out" and has no idea what happens or how bad it is.

I'm very frustrated!

 

[marika853]

Welcome NancyJo,
You have come to the right place! Everyone here is very helpful. If they don't know the answer to something they will lead you to an article or website that does.
It's always good to know that we are not alone in our dealings with this illness.
Good Luck!
M

 

[lindsayschu2]

Wow NancyJo, you have a lot to carry and support as a caregiver. Dealing with the E isn't easy for anyone, and supporting someone who isn't doing everything they can to better their own situation must make it that much harder on you, and must make it hard for you to take care of your own needs as a person to boot. I'm glad you have come here for support. We can possibly help you figure out the 'what this means' part of what you are not getting from your neuro. Another thing to consider is whether or not finding other treatments for his back pain and reducing narcotics might help with the epilepsy situation. Feel free to ask specific questions and we can see if we can help. Don't neglect your own needs either--take breaks, take care of yourself, find ways to nurture yourself through this process. This isn't just about him. I'm sorry you both are going through this.

 

[arnie]

Welcome, and I'm sorry you and your husband are having to go through all of this. Because there seems to be a pattern to his seizures I would strongly urge you to keep a seizure diary. If writing is too hard I would suggest having a piece of paper with the hours of the day written down one side. If he has a seizure at, say, 1030 just put a check beside 1000. For a 1045 seizure put a mark at 1100, and so on. At the end of the week enter that information on SeizureTracker https://seizuretracker.com/ and before long you will be able to have graphs of when his seizures happen which can help in tailoring treatment. I credit SeizureTracker for helping me get seizure-free for the first time in over 30 years. Give it a try.
Best to you. You will get a lot of advice and support here.

Carry on!

 

[NancyJo]

Thank you so much for your responses. I guess I didn't realize how much I have taken on in trying to deal with E. I need to get my husband to take on more responsibility for his problem. I love the simplicity of arnie's suggestion for starting a seizure log.

I have wondered a lot about foods and how/whether they play a part in seizures. Most info I have read suggests that the ketogenic diet is mainly an assist for kids, not so much for adults. His neurologist says it is unimportant.

One comment I read (another forum, I think) was that coffee and leafy greens can interfere with effectiveness of seizure meds. We have been moving toward a diet lower in meats, heavy in vegetables, including green smoothies. I am interested in comments related to diet.

I'm sorry I didn't join a group sooner. Thanks for letting me in.:banana:

 

[Cint]

Welcome NancyJo, but sorry you're having a difficult time with your husband. Living with E is not easy and I applaud you for taking care of your spouse. But he needs to step up to the plate, too, and offer some help, something like Arnie suggested. Also as Lindsay said, he might consider reducing the narcotics for the back pain, as narcotics could be bringing on more seizures. Have either of you considered counseling? Or contacted the local Epilepsy Foundation?

Plus the stress in his life and yours could lead to more seizures.
http://www.epilepsy.com/learn/triggers-seizures/stress-and-epilepsy

Hang in there.

 

[Cint]

One comment I read (another forum, I think) was that coffee and leafy greens can interfere with effectiveness of seizure meds. We have been moving toward a diet lower in meats, heavy in vegetables, including green smoothies. I am interested in comments related to diet.

I'm sorry I didn't join a group sooner. Thanks for letting me in.:banana:

I also have Type 1 Diabetes, so diet is very important to me. They say coffee can interfere with seizure meds, but I do drink coffee to keep me going because of the seizure meds (they make me SO sleepy). But because of the diabetes, I watch and limit my carbs and increase my white meats and leafy green veggies. I don't think it has changed my seizure pattern. There is also the Modified Atkins Diet and the Low Glycemic Diet for E.
Here are links for those:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/modified-atkins-diet

http://www.epilepsy.com/learn/treat...ietary-therapies/low-glycemic-index-treatment

 

[masterjen]

Don't neglect your own needs either--take breaks, take care of yourself, find ways to nurture yourself through this process. This isn't just about him. I'm sorry you both are going through this.

This is so true. If you are concerned about leaving him alone, arrange to have a family member or friend of his stay with him. It would probably do him some good, too, to realize he can and sometimes must rely on someone besides you to help him. And the hardest part: stick with plans you have made even when he is pressuring you otherwise. It may be that he is more capable of looking after himself and coping than you and he realize, because he has always had you to rely on. Good luck and I hope things improve soon for you both.

 

[NancyJo]

Thank you, Clint. We have tried marriage counseling; then went to individual counseling during the past year. I don't feel it has helped much. The last time I saw my counselor she said "You're going to have to figure this out for yourself". I thought that was her job, to help me figure this out. We have grown very far apart because, I feel, he is not taking responsibility for his problems.

We do not live in the States and there is no support group here, as life is "family oriented" and we do not have family around us. I don't feel that he is getting proper medical treatment and I have stated this for the past several years. We do not have a local epilepsy foundation.

I have felt very alone since the apparent viral infection that set off this whole mess. I have long felt that the narcotics could very well be part of the problem.

Thank you all for listening. I have reached the end of my rope many times, but am trying to help him see the light and think things through differently. I don't believe in walking away from someone who is ill, but I am struggling to not let it make me ill as well.

 

[Cint]

Thank you, Clint. We have tried marriage counseling; then went to individual counseling during the past year. I don't feel it has helped much. The last time I saw my counselor she said "You're going to have to figure this out for yourself". I thought that was her job, to help me figure this out. We have grown very far apart because, I feel, he is not taking responsibility for his problems.

I'm appalled that the counselor said that to you. You are right, it is her job to help you figure things out. She obviously needed to be fired.... sorry you had to go thru that.

We do not live in the States and there is no support group here, as life is "family oriented" and we do not have family around us. I don't feel that he is getting proper medical treatment and I have stated this for the past several years. We do not have a local epilepsy foundation.

I have felt very alone since the apparent viral infection that set off this whole mess. I have long felt that the narcotics could very well be part of the problem.

Is there a hospital in your area that treats patients with difficult to treat epilepsy, or an epileptologist? Sounds like this is what your husband needs. And you need help dealing with all of it. You cannot do it all.

 

[Nakamova]

I have wondered a lot about foods and how/whether they play a part in seizures. Most info I have read suggests that the ketogenic diet is mainly an assist for kids, not so much for adults. His neurologist says it is unimportant.

Although everyone is different, many folks have found that generally avoiding simple carbs can help. The ketogenic diet is fairly restrictive, but the Modified Atkins Diet is less and may be worth trying if your husband and his doctors are on board. More info here: http://www.atkinsforseizures.com/

One comment I read (another forum, I think) was that coffee and leafy greens can interfere with effectiveness of seizure meds. We have been moving toward a diet lower in meats, heavy in vegetables, including green smoothies. I am interested in comments related to diet.

Coffee isn't known to interfere with seizure meds. Many people with seizures disorders avoid it because they find the caffeine triggering however, and that may be the case for your husband. Leafy greens (specifically the Vitamin K in thing like kale) don't interfere with Dilantin, it's the other way around: Dilantin interferes with the body's ability to use vitamin K. You might ask your husband's neuro if a supplement containing Vitamin K would be helpful.