Questions about epilepsy and meds

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darcness

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Hi all, just joined up here, and had a few questions I thought I could ask to help me better understand. My wife had 3 seizures now all tonic-clonic, the first being 1.5 years ago, then another 6 months ago, and finally one 2 months ago.

I guess I'm curious if anyone thinks the seizures can affect you long term? Also, is there any way to tell if any strange behavior is caused by the seizures or the meds?

I've noticed some strange happenings since my wife has had these seizures and I'm fairly concerned about it.

For reference, she is on 1000mg of Depakote, taken by 500mg in the morning, and 500mg at night. Doses are 12 hours a part, 12pm and 12am. I work second shift and we both tend to sleep in later than most so it's easier for me to help her remember when I'm home. She's been on that dose for almost 3 weeks now. She did have what we think was a partial seizure while she was on 500mg of Depakote, hence the increase to 1000mg. The neuro found no abnormalities on the MRI, CT scan, or EEG. Blood work was done and she is now at levels were he wants her (she wasn't on 500mg).

The first thing I notice is that she sometimes will get extremely tired. She will be doing something like folding the laundry and nodding off while she does. She also does this some times while she doing things like text messaging on her phone or riding in the car. This seems to have been happening even before she was on the seizure medication, but maybe more so now with the Depakote.

Another thing I notice is that some days she seems "out of it". Most days, when things are going well, she is her feisty old self. But some days she just seems to be a little slower and forgetful. It doesn't really seem to follow a pattern and seems to have gotten worse since she started on Depakote.

Her sleep schedule is also completely wacked since taking the Depakote. She will sleep normally some times, but it's rare. Normally she will sleep for hours and hours on end, then but up for almost 24 hours straight.

The most worrying thing to me is that some times I think she does things without fully comprehending it. Either that or her short term memory is impaired. She will take her meds, then forget she took them, and want to take them again. She denies up and down that she took them the first time and swears she doesn't remember. The reason this worries me is because she also is on Xanax for her anxiety. I try to keep a close eye on her pills, but she gets angry when I try to take them. I really don't want her to overdose or take too many without even realizing she's doing it.

It just seems like the seizures caused something of a change in my wife. She went from a very detail oriented person with a good memory to some one who can't seem to function normally on some days. It really scares me. Especially the bit about the meds. I still love her and accept her for all she is, but it pains me to see her like this.

Also, could the Depakote be causing any of this? It seems that some of the things were there before, but the Depakote seems to have really enhanced it. Between the seizures and the meds, I'm not sure which to even blame. I think it may be a combo of both.

But that makes me wonder. If the meds control the seizures, will these things improve? If the meds are causing these things, then will they improve as her body gets more accustom to them?

Has anyone else experienced anything similar? I've been mulling this over in my head for the past 2 months and it really is starting to drain me emotionally.
 
Ahhh the meds....

I've been on meds for a while now and all of the symptoms that your wife is going through seem familiar to me. I'm forgetful--both my short and long term are affected and moody (not daily). My only issue with sleep tends to be either if I've just had a seizure (anxiety) or a change in meds (anxiety as well). None the less, I'd put most blame on the meds as they are tough.

Yet, life has become much (I mean MUCH) more like normal with the addition of certain vitamins and nutritional changes. So much so that I plan on lowering my dosage.

It's a long road with many bumps. Yet, there is a lot of information that may help both you and your wife.---LMT
 
*chuckle* you'll find if you read here for a bit that alot of us have memory issues. :) That's a combination of the meds and the seizures. Another common trait is drowsiness when first going on a med....it takes awhile for the brain to get used to the chemicals.

For the memory issues, I suggest 1000 mg. fish oil capsule. It helps. And keep post it notes around. :)
 
*chuckle* you'll find if you read here for a bit that alot of us have memory issues. :) That's a combination of the meds and the seizures. Another common trait is drowsiness when first going on a med....it takes awhile for the brain to get used to the chemicals.

For the memory issues, I suggest 1000 mg. fish oil capsule. It helps. And keep post it notes around. :)

Ok, I'm glad it's the norm around here. I guess the more I learn, the better I feel about all this.

And trust me, the wife LOVES notes. She leaves them all over the house. It's rather funny. It always makes me laugh when she goes grocery shopping too. It's like a 2 day job just to make the shopping list. :roflmao:

I love her to death, just a little worried about all this stuff as it happened so quick. I'm sure the more I learn, the easier I will be able to handle all this. Thanks so much for the support and kind words so far all.
 
Haha yes, I definetly have memory issues. My teachers always look at me like im crazy because I wont remember what they said or I will forget assignments in my locker. So I write it on my hand and stuff. Im a human notepad :P
 
Yea, I just spent the better part of the last 3 hours reading about AED's. Seems that it's a common complaint of many of the people taking them. I guess I'll just have to be more diligent about keeping tabs on her meds and making sure she takes them at the same time each day/night.

I know she is suffering from the classic lethargy and sleepiness SE's. I think she also has a bit of memory issues and for sure the stopping in mid sentence from time to time.

Yesterday she said something along the lines of "Put the Ken doll in the bed". She was watching Friends earlier in the day and that was a line in the show. She blurted it out while talking to our roomate. Her and my roomate got a good long laugh out of it after she realized she had said it, and where she heard it from earlier.

I will ask this...

I know for some people the side effects lessen over time, but for some they stay the same or get worse. How long should I/she wait before decided to think about making a switch?
 
I know for some people the side effects lessen over time, but for some they stay the same or get worse. How long should I/she wait before decided to think about making a switch?

I honestly think that's a very individual question. Everyone on anti-epileptic drugs has to trade off a certain amount of side-effects for a certain amount of seizure control. It's a matter of what the individual is willing to sacrifice for what level of control.

I personally have had to sacrifice a bit of memory to not have tonic/clonic seizures. I compensate by always carrying a pen & pad to mark things down & by keeping routines.

I was on one medication that basically turned me into a zombie & was more disabling than the seizures so I would advise that you always be aware of which is more disabling.
 
Thanks for the suggestion.

Yea, I really will be leaving it up to her. If she's fine with the SE's, then I am too. I just think that if it's making her forget that she took her meds, that could end up being a problem. I suppose not though since we've got 2 sets of eyes on it. Well, 3 now that we have a roomate.

I'm feeling a bunch better tonight after reading many of the posts here and doing some more research on the AED's. I think the more I can learn, the better I feel.

I've been doing CBT therapy and that helps too. It just teaches me to worry about the things I can control, and not to ruminate about the things I can't. In this case, it's putting every bit of my cognitive ability to the test, but I think I'm winning. Day by day I learn more and feel better with what I've learned. In time, I really believe me and my wife will both be fine and happy together. It's just a scary and hard time right now.
 
darcness -
My daughter had a terrible time on anti-seizure meds. AWFUL
Then we found out about some alternatives, and memory is better, grades are better, seizures are better, ...

I started her on nutritional changes, and also Neurofeedback. I was told two years ago, "but you won't know what is working, if you start it all at once". I didn't really care. I just wanted the seizures to get better. You too would have to admit that there is an incredible improvement. I know the Neurofeedback was helping a lot. I also followed intution that nutritional choices were causing seizures as well. Blood sugar was tested, and there are imbalances that were not picked up on the conventional tests.

Have you considered that there is an underlying cause to her seizures?
IMO the meds are only a bandaid. Eventually they will need to be changed and the body will need to be readjusted. Also, other organs are damaged in the process. Quality of life is lowered along the way. My belief is that we need to heal from within. Loads of info on nutritional causes.
 
Thanks for the suggestion.

Yea, I really will be leaving it up to her. If she's fine with the SE's, then I am too. I just think that if it's making her forget that she took her meds, that could end up being a problem. I suppose not though since we've got 2 sets of eyes on it. Well, 3 now that we have a roomate.
I had the same problem of "Did I take my meds?? Oh crap.. I don't know!!!" So what helps me (And im sure almost everyone else) is one of those little pillminders.
This looks a little like the one I have, You may want to get the AM/PM one. But it does help remind you if you took your meds.
200.jpg
 
Jordan's right....try getting her a pill minder. Then she'll know for sure whether or not she took her meds. Keeping a steady level of meds in her system is important. As for side effects, weight gain and thinning hair are pretty common for depakote. If your wife doesn't like either of those, or if you two are someday thinking of having kids, I'd suggest that she talk to her neuro about switching to another med like Dilantin (can cause the gums to overgrow the teeth...) or Lamictal. Also, taking a folic acid supplement every day is a good idea. That way, if she does get pregnant, even by accident, the chances of birth defects are lessened.
 
Yeah, I got her one of this pill boxes right off the bat. It has 4 slots in it for different times of day so it helps us out quite a bit. I need to get one for myself as well, but since I only have to take my Zoloft once a day, it's pretty easy to remember.

Thanks for the suggestions on the medication too. I'll let Tera know about them and have her discuss them with her Neurologist. I've heard very good things about Lamictal so if the Depakote ends up being too much (with SE's) maybe it would be a good thing to switch to.
 
A notepad or PDA (I'm an IT guy, so gotta have the gadget! :) ) is a lifesaver for me. I was driving my wife nuts with forgetting stuff and I was getting incredibly frustrated because of it.
 
Ahhhhhh, Depakote

I HATED that stuff.

I was on it for 7 years. Played with my memory big time, made me tired all the time, slept all the time, gained weight in a big way, and the final straw was the edema (weird reaction, but it happened).

I had no short term memory at all on that stuff. Nor much of a long term memory either. My best friend had to keep track of all of my appointments (husband wouldn't) and she and my kids doled out my meds. I wasn't allowed to have them because I got to a point where I just couldn't remember if I had taken my meds or not that morning. or the night before, and my husband would have nothing to do with helping. So........

Depakote DOES cause emotional instability, too, sometimes, and it IS hard on others. And that's hard, and I'm sorry. It isn't easy for the patient, though, either. (You might try starting a journal....or doing some yoga, or listening to some meditational CDs to help you.)

HOWEVER. It DID do a GREAT job of controlling my seizures, and a side benefit of helping to control my migraines, too.

But, combined with the Lamictal, I was NOT having a good time with it. I refuse to go back on Depakote ever again.

I wish you and your wife luck with it. However........keep this in mind. First. It does take time for meds to titrate into the body properly. If you feel that after a while she still hasn't evened out.........and you don't say how long she's been on Depakote......then perhaps it's time to try a different drug. Or, look at adding another drug, OR changing her diet, too.

There are other options out there. You will eventually find your wife again. It may take some time. I'm sorry you're so frustrated. I can understand where you're coming from. I really can.

Feel free to PM me, if you'd like.

Take care.

Meetz
:rock:
 
:-)

Memory issues? Hell yeah! Drives my family & husband nuts!!! I've been on meds my whole life (I'm 33) and as far as they're concerned I have no short-term memory skills. Now, I take offense to that but I will admit that my short term memory is not as good as theirs. And if they want to me to remember something specific like travel dates, etc. I tell them they have to email it to me so I can remind myself. Otherwise, in one ear and out the other... I also carry around a notebook, pen & old-fashioned paper organizer in my purse. I'm a techie too but when I start wondering whether or not I forgot to enter something or if I've already deleted it...well, paper is easier.

I've gotten used to insomnia as a way of life by now. It's usually a side-effect of most of the meds. At one point (high school) I would get 4 hours of sleep if I was lucky (bad nights were 1-2 hours, average was usually 3 hrs). On day 3 I would come home and crash like a zombie. I still have horrible sleeping patterns and can sleep forever sometimes but thank goodness I can now get something approaching a normal span of hours asleep!

Keep in mind that all of these drugs are designed to work with the chemical balances in the brain. Since our emotions are the product of the same thing they're definately going to be affected by the meds. I remember Depakane was a serious depressive for me. Mood swings may be something you have to accept if it's the only way to control the seizures. On the other hand, make sure you research the options. "Wonder Drugs" don't work for everyone and each drug has a LONG list of side-effects. Most of the time they only tell you the most common ones. Case in point: I was put on Tegretol at one point by my doctors (it was considered a "wonder drug" since it worked for most people). Unfortunately, I fell into that miniscule portion of patients in whom it triggered seizures! Believe me, that was way down on the side effects list!

Hope that helps!

Keep in mind, the most important thing you can do is be supportive.

Sara
 
Thanks Sara.

So far so good on the mood front. In fact, I think the mood stabilizer of Depakote has actually helped my wife.

Actually there's good news to tell.

1) No seizures for at least 3 weeks now
2) No migraines since she started taking the drug
3) Today she is planning our wedding and is HAPPY

My wife isn't a happy person normally. Here family is a mess, she suffered from horrible migraines, and she has E. Not to mention all the stress gives her anxiety, depression, and some times panic attacks.

But despite all this, the Depakote seems to have helped her a bit with her overall moods. Today she said we were lucky because we have so many great people who are willing to help us with the wedding. That's not something my wife would normally say. It was really nice to hear her say positive things and planning for the future.

As I've said, I think she handles this much better than I do. Whether it's because she's been through so much or what, I don't know. She just keeps going on with life like it wasn't even a big deal. She's much stronger than she gives herself credit for, that much is sure.

I've been much better as of late too. I don't let every little noise spook me. I don't think she could be having a seizure at any minute. Today I was genuinely happy most of the day and that hasn't happened in quite some time.

I look forward to us both getting past this and accepting the fact that she has E and that's how it is. No one ever said life was going to be perfect. But no one said E has to ruin our lives. Live and love life, and trust the Lord to take care of the rest.
 
Ohh...migraines? There's some research that says migraines and epilepsy are related...and Magnesium supplements can help both. :) She might want to try it. :)

PS= Glad to hear the good news. :)
 
Actually she hasn't had a single migraine since starting on the Depakote. She had a headache during her monthly visit, but it wasn't a migraine, just a tension headache that wasn't nearly as bad or long lasting.

She used to get migraines for DAYS at a time. Now, she hasn't had one for over a month.
 
Glad to hear it. :) If she does get them again though, keep the magnesium in mind. The magnsium is a muscle relaxant. Calcium causes nerves to react to impulses to contract, and magnesium blocks some of those signals. people with migraines and some people (including myself) have found that with the addition of magnesium, the frequency and strength or the migraines/seizures dropped.
 
I'll definitely keep it in mind. Maybe if the headaches keep up during her cycle, I'll suggest it to her and pick some up for her.
 
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