Wanting to learn more

[trying2understand]

My wife has seizures and sometimes she gets really tired and irritated, sometimes frustrated. She says its the side effects from the medicines and the fact that she is sick. I just don't get it.

So I came here.

Do you guys all have those problems with your medicine?

 

[Bernard]

Hi t2u, welcome to the forum. :hello:

Yes, tiredness and irritability can be side effects of AEDs. Which ones are your wife taking?

 

[Cint]

Hi & welcome Trying2understand,

At least you're trying. My ex didn't get it either, so I give it to you for doing your part there.

Yes, the medications can make one tired, irritable, depressed, moody, and with being a woman, epilepsy can interfere with "that time of the month", leading up to bad PMS or other problems!! Be patient with her and try to understand from her point of view. It isn't much fun taking these miserable drugs with many side effects to control the seizures.

Cindy

 

[trying2understand]

She takes Tegretol and Topamax.

 

[morgan381]

Hi, and welcome to CWE! Yep, all those lovely things can be side-effects of the meds. For me, they're also part of the post-seizure fun...(sarcasm). I take keppra, and when I first started it, I had a monster headache all the time (lasted over a month), could barely stay awake and was quite grumpy. Think about it, most AEDs are central nervous system depressants--"downers"... She's lucky that you are trying to understand and willing to learn. Hang in there, they side effects are usually temporary. She's on 2 drugs, so she's getting a double dose....

 

[Meetz1064]

Yes, unfortunately

it's true. And it sucks. I'm sorry.

Stick around, you'll learn alot, make new friends, and really learn how to deal with your wife, and E.

Sometimes nutritional changes, such as adding Bvitamins can help, too. Or totally changing the diet. But, that's not always the case either. It's an individual thing.

I would suggest the vitamins anyway. Have her talk to her doctors, but at least a good multivitamin to start--never hurts.

Check out the link I've pasted in here, it should help for starters.

http://www.coping-with-epilepsy.com/forums/tags/epilepsy+101.html

Take care,

Meetz
:rock:

 

[josieb]

Hi & Welcome: First, I want to say that it's great that you are doing what you can to try to understand. It's very difficult for one person to go through the various bad experiences, as well as for his/her companion to try and comprehend it all. People have many different reactions to the meds, but they are usually not good experiences. I wish you and your wife good luck!

 

[paradise survivor]

Welcome t2u! You get 10 bonus points just for attempting to understand! Although you haven't given a lot of detail, I can tell you from my own experiance, the drugs can play havoc with your personality, memory, and quality of life over all. You will find a myriad of souls here who live with or care for someone with E. Some of us medicate and some of us choose not to. My own hubby has been where you are now. I was diagnosed about 20 years into our marriage and wow, what a ride it has been. But without his love and support, I would be dead. He fought for me when I could not. He fought with me when I would not fight for myself. For a long time I felt fear, fear that I was no longer the woman he married, fear of being alone, fear of not being able to care for myself or my family...( remember, fear is the basis for all anger). Be strong and visit here often as you will learn much. :e::mrt:

 

[skillefer]

Hi Trying! Welcome to CWE. Like you, my hubby is fantastic and did everything he could to understand my condition, including going with me to ALL doctor's appointments. As for your question....actually, that all depends. Myself, I never really had any issues while I was on phenobarbital..just tired. When I was on Depakote, I didn't have mood issues at all. But then again, it's a mood stabilizer. The doc is putting me on Dilantin now (after taking me off depakote and phenobarb....they quit working for me. And yes, meds can quit working.) and I don't have any issues. I've had friends on Tegratol who got moody at times...and keppra has a histroy of making some people irritable. For those on Keppra, it's suggested that they talk to their docs about a vitamin B-6 supplement. B-6 has helped alot of people deal with kepprage.

Now, thanks to the tonic clonics (grand mal) seizures, as well as the meds, my memory isn't what it used to be. But, Fish Oil capsules help. If your wife has just recently been diagnosed, she may be going through a bit of depression. Epilepsy does cause most of us to make some changes. For example, cutting back on caffeine, not getting to go on roller coasters, not being allowed to take baths by ourselves, and for some, not being able to drive anymore (that last one depends on which state you live in ). I had epilepsy before I married my husband. So he knew a little bit about it. But it did kind of freak him out when I had a seizure while we were dating. But his response was to ask me if he could go to my next neurologist's appointment with me. Ever since, he goes to all my doctor's visits, and sometimes, I think they like him more then me. I know he gets along wonderfully with all the receptionists. Anyway, at that first neurologists visit, he sat and asked all the questions he could think of. Including questions about my ability to have kids. After we got married, we decided to go ahead and try to have kids, so back to the neuro we went. We talked with him, and he started weaning me off the depakote (danger of causing Spina Bifida). Also, I started taking 800mcg folic Acid everyday...just in case. I didn't realize it...but the neuro pulled him aside and talked to him about SUDEP, as well as the fact that I might have more seizures if I ever did get pregnant. And then we went through a couple of years where I started having more frequent seizures. My hubby would call off at work to take care of me if I had had a seizure. At one point, his boss asked him to choose between his job or his wife. My hubby told him where to go, and how to get there. The boss thought I was faking it. A couple of months later, when the boss realized he couldn't afford to not have my hubby working for him, they begged him back. And I ended up having a seizure at the boss's house. Freaked him out, and proved that my hubby had not been faking it. (And yes, discrimination like that can happen here in the US. Because alot of people don't know the basic facts about epilepsy. )

Now, we've been through a lot of stuff. And honestly I think some of them were more worrisome then the seizures. The seizures have actually caused some humorous episodes . (For example, seizures and sex.) As well as some worrisome episodes. (once had one and went head first into a firepit...where we had a fire going. Hubby ended up with burned feet from running through the pit to grab me out of it, and I ended up with a black eye from the chunk of red hot concrete that was in the firepit. Hubby got dirty looks for weeks after that whenever we went out together. )

Now, can the irritability be due to meds? Possibly. Every brain is different...so everyone has a different reaction to meds. Some, like Keppra, are known to cause people to be more irritable. If she's just getting on the med, that can be a time of irritability too. If she's been on the Tegratol and Topamax for a while, I would suggest she call her doc and let him or her know. Maybe her levels need to be checked and either the meds upped or brought down.

This is a great site for info. So feel free to ask questions, vent in the padded room, or just chime in . And invite your wife to check out the site. It's not unusual for people with E to feel like they are the only ones. The truth is, she's not alone. Over 3 million people in the US have epilepsy. 300,000 new cases are diagnosed each year. And in a CDC study, they found that 1 in 100 people has epilepsy. so she's definitely not alone. Alot of people with E feel like it's shameful and they hide it. Some people don't feel like there's any need to hide it. We have both groups here. Anyway, I hope this helped. Check out the Epilepsy 101 thread in my signature...it has some great basic info on E.

 

[RobinN]

Hello - Welcome
I am a caregiver as well.
My daughters mood changed a lot while on meds. She is a teen though, so I can't give all the credit to the drugs, but since she has been off of them, she is soooo much better.

I owe a lot of improvement to her time doing Neurofeedback. Not only in seizure control, but also relaxation, and improvement in cognitive ability

I also want to add that the neurofeedback would not be as helpful it I had not also combined nutritional changes, and supplementation for brain and body health.

 

[seizures4ever]

Hi Trying,

Well, as others have said, kudos to you for trying to "get it." It isn't easy for any of us to understand, even those of us with epilepsy. Sometimes things come out of my mouth before I even get the thought formed in my head...leads to a lot of foot-in-mouth. These meds. are heavy-duty drugs. If it tells you anything about just how mind-altering they are, people are known to steal them to get high!

So imagine those of us who want to function normally taking one or more meds. that some take just to escape/alter reality! It's a [w]itch of a time trying to function when you're having seizures and/or are on drugs with such powerful side-effects.

Keep on trying to understand. We all wish more people who don't understand would try to "get it" and educate themselves as you're doing!

All the best. Keep the questions coming! -Julie

 

[alivenwell]

Welcome!!!!!!!!!!

Well, all those prior posts said it quite well. You are to be highly commended for your compassion and care for your wife. She is extremely lucky.

Drugs...what else can I say? They make one feel like a lab rat. Try this one. Does it work? No?....Try this. ..... Where's the cheese?

Some nutritional issues were mentioned in here. I do take medications supplemented by calcium and vitamin D. In PA, there's not much sunlight, so that's how I get most of my vitamin D. It is also known to help brain functionality as well. But, I'd ask her neurologist first.

 

[brain]

:hello: Trying!

Welcome to CWE! And I am sure
you are absolutely bewildered at
it all - in addition to all the posts
below, I must also add; a lot of
patience must go with it and don't
be afraid to go with your wife to
the Neurologist or Epileptologist's
appointments - you can learn even
more! Browsing around here, you
will learn even more.

And clicking below at the Epilepsy
Foundation - and learn about the
Women's Issues - for Women in
more ways than one, suffers more,
so she's lucky to have you - so stand
by her side and be with her! The more
you know and become enlightened;
the less you will become afraid and
become more supportive of your wife!

:rose:

Epilepsy doesn't have to reign in your
marriage but it can be trying at times,
however, once you've gained all the
insight and so much more - it will all
become a thing of the past!

:tup:

 

[paradise survivor]

I just realized you said your wife was taking Topamax. I would be remiss if I didn't give you a 'heads up' on that one in particular. Be watchful! Make sure she is eating-- this one has a nasty reputation and it starts rather isidiously. I was on it for I think a year, I even fought to stay on it. My hubby put his foot down and made me tell my doc all that was really going on. You forget,...everything. You forget to eat (which is why you loose weight), eventually you forget where the food is. I would forget how to leave a room I just walked into (no, I'm not kidding) Now there are those who do fine on it--just no one I have run into. I am not a doc but this one should be watched VERY carefully...in my opinion. OK -- I'm done, sorry for the rant.