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booj

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Hello all!

I hope all is well, this is my first post in this forum. I do not have epilepsy but my fiancee does, she has had roughly 6 seizures in the last fives years and all of them have happened while she was sleeping. She have been taking trileptal for a few years now (I think 600mg in the morning and at night). Her last seizures were Sunday (around 12:30AM and around 6:00AM, this is also her first time having two back to back) and before those it was in May of 2008. This was also the first time I have witnessed her having one. We are getting married in June of this year. I would like to know if this is common? And what can I do to help her?

Thank you all for your help!

John
 
Welcome to the site

& congratulations on getting married:woot:. What kind of seizures does your fiancee have? I know nocturnal (night time) seizures are not uncommon. I had a some just a few days ago.

Do either of you keep a schedule of when she has seizures? Maybe that way you can find what it is that is triggering them. A few common triggers are foods http://www.coping-with-epilepsy.com/forums/f39/list-bad-foods-5710/, lack of sleep, & stress.

There's a lot of good stuff here so get comfortable & look around.
 
I can only imagine how scary it must be to see someone you love having a seizure. No matter which kind, they are unsettling. My husband admitted to being very scared when he saw my first one (I have tonic-clonic seizures). Yet, now that he knows how to handle the situation, he's more comfortable.

He tells me that as long as he stays calm (even during the postictal stage) I stay calm---that's half the battle:ponder:.

Both he and I have looked into alternative forms of treatment and were very happy to find this site. So, between vitamin therapy, neurofeedback, diet, etc. we've come a LONG way:clap:.

----LMT
 
Hello and welcome!

I was told by my neurologist that nocturnal seizures are the most difficult to control. Don't know if that is a proven fact or just his experience. I just thought I would mention it because I think looking into diet, etc., is an excellent way to stay proactive in a difficult situation.
Having some control over such an uncontrollable situation is a big help.

LuvMyTwins brought up a good point. The way you deal with the situation will transfer to how she deals with it. My husband has learned to keep the lights low (if at night), and to just sit next to me and hold my hand as I come around. Speak quietly, have medication at the ready so he doesn't need to leave my side, etc.
Waking up to a lot of activity or EMTs in your face is NOT pleasant, and if you can, avoid those situations. Help her to keep her dignity when she wakes up.
You coming to this forum to ask questions is proof that you will be a great source of strength and support for her.
I wish you a lifetime of love and laughter!
 
Hi John! What a sweet man you are to be asking for info now. :) My hubby first saw me have a seizure when we were still dating. It didn't make him run away, which only impressed me more. :)

Anyway, here's my take on what you should know....
1. Her seizures are currently only at night...that doesn't mean that later on in life that will still be the case. so be flexible...

2. go to her neurologists appointments and actively participate in the appointment. If you have questions, ask.. My hubby does this with all of my doctors. That way, if anything happens and I end up in the ER, he can know whatever the doc is going to ask him.
Discuss things like are you ever planning on having kids?? (That can effect which meds the doc has her on...) He'll probably explain SUDEP to you. Don't freak out when he/she does. How you react to her seizures will effect how your wife feels about her seizures.

4. don't be surprised if her seizures flare up after being controlled for a long time. Or if the doc says she needs to change meds later in life. Meds can just quit working. Also, hormone shifts like those that occur during pregnancy or menopause can trigger more seizures.

5. Seizures are more likely to occur when we're stressed out, not getting enough sleep, have low blood sugar, etc... So try to make sure that your fiancee gets enough sleep. 7 hours every night is what is most often recommended.

6. don't be surprised or hurt if she comes out of a seizure not knowing who you are. It takes us a while to completely come out of a seizure. That time is called the Post-ictal phase, and to be honest, we can have a hard time remembering our own names for a bit.

7. Oh! And just so it doesn't completely freak you out....some of us have had seizures during sex.... Which reminds me...our meds can diminish sex drive...so don't automatically assume that she's not physically into you at times....it might be the meds.

8. And, if she ends up wetting herself (it can happen if her seizures are tonic clonics...) act like it's no big thing. She's going to be embarrassed that it happened anyway.
 
Just wanted to say Welcome to CWE. We're glad you found us. There are some very knowledgable people on this site, as well as lots of support...so feel free to jump in and ask questions, look around the site, vent, or even laugh. :agree::e: :)

Congrats on getting married! -Julie
 
Thank you all for your help!

We are meeting with her doctor tomorrow, what are some good questions I need to ask the doctor?

Once again thanks agian!
 
Good questions...hmmm..

1) What kind of seizures does my fiancee have exactly?
2) What should I do if she has one?
3) How long is an acceptable length for a seizure?
4) Are there any activities that she should avoid?
5) What kind of medication is she on? Anything that we should avoid food or drinkwise? (Some foods and drinks can make medication metabolise slower...)
6) Since her seizures are happening at night, are there any precautions like special pillows that she should have if your not home when she goes to sleep?
7) What is the doctor's opinion on the following:
a) vitamin therapy (the use of vitamin supplements for help with seizure control,
for example, Magnesium.)
b) nutrition therapy (the use of high protein or vegetarian diet to help with
seizure control)
c) EEG neurofeedback (training the brain to not seize by using neurofeedback)
If the doc says that these are bunk and that they are not good alternatives to medication or as a complimentary therapy (to be used with meds) then be wary. EEG neurofeedback is being taken seriously enough that some insurance companies are willing to cover it.

8 )How will these seizures effect her during pregnancy? (Assuming you and her want to have kids someday...)


These are just a few....I'm sure that you'll think of other questions when you're there. :) And just remember, if you don't understand any of the docs answers, ask them to explain. A good doc will take as much time with the 2 of you as you need.
 
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Hi Booj,
Skillefer gave you a great starting list and I'm sure others will add to it.
There is one very important reason you are needed to be by your wife's side, and that is to be an outside observer.
I can't tell you the number of times my neurologist has asked me questions that I don't know the answer to (mood issues, seizure frequency, side effect questions, etc.), and thankfully my husband was paying attention and could explain what he saw...cause no way was I cognizant of what was going on, even if I thought I was!
And of course he would explain what he saw during my tonic clonics--there are meanings to the movements and sounds she makes if/when we have a generalized seizure. Each one points to a different part in the brain which is being affected. Making a point to record the length in time of the seizure is important as well.
If your wife has started a diary (which I strongly encourage), you could start one as well and bring it with you to your appointments.
 
Hi booj :hello: Welcome to CWE!!! You came to a wonderful place. I'm sure you can see that from the welcome and information that you've already received. You sound like an amazingly supportive guy. Your fiance is fortunate to have you standing by her and supporting her. It's really great to have you join us here :)
 
All,

We went to the doctor the other day and it went well. They are going to increase her medicine, and if she has one more seizure they are going to change her medicine to Keppra.

Thank you all sooo much for all your help!!

John
 
Hi John, welcome to the forum. :hello:

Aside from increasing the medications she is taking, consider some of the suggestions here:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

If her seizure activity is increasing, that's not a good sign. It wouldn't hurt to try implementing a consistent sleep regimen (9/hrs a night if possible) and reducing simple carbohydrates (sugars, white flours, etc.) in the diet. :twocents:
 
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