Hello :)

[aboizd1]

Hi, I've just recently been put on medication for grandmal seizures. I've had two exactly one month apart. I don't yet have a reason for this...

I know very little about what is happening to me, and what the outcome of seizures is....I have just turned 20 and am finding it difficult having people constantly trying to keep me confined to the house or in constant question of my capabilities to do things outside now!

I was first put on tegretol which immediately gave me a cough, breathing issues and a rash- so now I'm on gen-topiramate? I'm only at 50mg and am supposed to get to 150 mg by the end of the month. Its only week 3 of this medication and I have already noticed extreme memory loss. - Has anyone else had memory loss? and has it gotten better over time?

Thanks! Anna

 

[skillefer]

Hi Anna! Welcome to CWE. Memory loss is unfortunately a side effect of many AED's. I found that taking 1000 mg. of fish oil a day helped. As for feeling like your being confined...I know that feeling. I'm pregnant and had a seizure several months ago...after that, my mother in law wanted me to sleep with my bedroom door open so that she could come and check on me. *eye roll* Trust me, I know how you're feeling. I'm finally back to being allowed to sleep with my door closed. (And loving every minute of it....) I got through it by reminding myself that the people in my family were doing what they were doing out of love for me.... ONce the doc gets your meds situated, if they work well for you, you'll find your friends and family gradually ease up. You said your seizures were a month apart...by any chance were they around your period? If so, you need to tell your doc..because it could be that your seizures are catamenial, and the most effective treatment for that is to make sure that your hormone levels are regulated.

 

[Chefgirl30]

Hello,

Memory loss is a common side effect. It does get better, or it gets easier to manage, I'm not sure. Either way it's very frustrating! I have become a slave to the post-it note and my calendar, not to mention my cell phone with the built-in reminder tones.

I'm weaning onto a new med, and it's helping to go slowly. Maybe you can talk to your doc about slowing down on the increase to 150 mg.

For me, one of the hardest things to deal with has been the family's reactions. They do it because they care, and epilepsy by definition is unpredictable. Keeping you in sight is about the only thing they can do to keep some feeling of control over the situation.

I've had seizures since I was a baby, but every time it takes a few weeks for my husband to relax and allow me to leave the house by myself. I understand, but the feminist in me rebels every time!

 

[dfwtexas]

I started having seizures January 2008 and take Keppra. I have noticed in past six months my short term memory is bad. I asked neuro if it was the Keppra. He said there are a lot of discussions about if it is meds or seizures that cause that, he said he believes the memory loss problem is the result of the seizures and not the meds.
I do make notes a lot. The good thing is my long term memory seems unaffected.

 

[aboizd1]

Skillefer- that eye roll is exactly where I'm at. I currently live at home and my mom has insisted on me having my bedroom door open, it's very frusterating. I know its out of concern...but its a bit too much. Sorry to hear that you've had seizures during your pregnancy, that's unfortunate :s I hope everythings alright! And coincidently both seizures were exactly 5 days after my period, on the exact same date of the month. But I just surpassed one with no problems...I don't know anything about catamenial seizures though-do you think its worth mentioning?

And fish oil...is that erm...gross or bearable? I guess I'm willing to try it out either way-how do you know how much to take?

 

[epileric]

And fish oil...is that erm...gross or bearable? I guess I'm willing to try it out either way-how do you know how much to take?

I take fish oils every day but they're in a capsule...... no need to taste it. There are also other oils with essential fatty acids such as flax seed oils but I believe the fish oils to be most effective for epilepsy.

 

[Kansas Educator]

If you still get a fishy taste when you swallow the capsules, try keeping them in your freezer. Works for me!

 

[epileric]

If you still get a fishy taste when you swallow the capsules, try keeping them in your freezer. Works for me!

I always keep them in the fridge since I don't know if they'll go bad if they get too warm despite being in capsules.

 

[aboizd1]

wow, sounds like fish oil is a popular thing... do i find it in stores or is it- well I have no idea! Is it something I should ask my doctor about first? thanks!

 

[epileric]

I get mine at a health food store but I see them in pharmacies & sometimes grocery stores as well. This might inform you a bit more as to the function of essential fatty acids.http://en.wikipedia.org/wiki/Essential_fatty_acid

 

[skillefer]

LOL...for the fishoil, take it in gel capsule form....that way you don't taste it.
I get mine at a local discount gorcery store...I know that they have it at walmart, k-mart, target...any place that has a pharmacy will sell it. I get mine at the discount grocer because I can get 2 bottles for $5.... You might want to try keeping a journal. That way, you can go back and see if there's a pattern... Here's what you should write down.

1. Food and drink (what, when, how much)
2. Sleep (how many hours each night)
3. stress (what's stressing you, and how do you deal with it)
4. odd feellings (odd smells/tastes/odors/sounds, migraines, and how long they last..)
5. seizures (when, how long they last, and what you were doing just before it...)
6. your period (when it starts, and how long)

You're keeping the journal to try to figure out what might make you more likely to have a seizure. Other problems like low blood sugar or low thyroid can also cause seizures. So the journal helps you to figure out what you can control that might be making you more likely to seize.

In the meantime, try putting these lifestyle changes in place:
1. Eat 6 small healthy meals a day. (sounds like a lot, but they should fit on a a dessert/salad plate...and you should have a protein as well as a carb for each one)
2. Get 7 hours of sleep every night. since your a teen...make that 8-10 hours of sleep every night...NO excuses.
3. quit taking over the counter cold medicines. (they can trigger seizures)
4. Quit drinking ALL caffeine (no more tea, coffee, soda, energy drinks, mate, etc....)
5. Try to eat as healthy as possible...that means fast food and precooked food should be relegated to 2 times a month at most (Your body may have developed an allergy to the chemicals that are in those types of food. )

Hope this helps.

PS: The kids are fine....I'm tired, but the baby is good. so, if you ever think you're going to want kids, you might want to make sure that your doc knows that, so that he can put you on a med that's safe to have kids on....also, you'll want to take folic acid everyday starting now, just in case.

 

[Chefgirl30]

My chiropractor suggests 4 tsp per day, of actual oil. He recommends this to all of his patients with neurological symptoms. Haven't taken him up on that yet, but so far his care and advice has been very good.

I've been taken 1000 mg capsules for some time now with my multi, just for general health. When my current bottle of capsules runs out I just might buy the oil to see if I can stomach it.

 

[aboizd1]

I like the idea of a journal I think? Sounds like a good way to keep track of my scattered ways-and the fact that you laid out exactly what I should write down makes it all the more likely that I will do it!

As for the lifestyle changes...I'm very bad at some of those...I don't know if its the meds or me just being very spuradic...but I eat very little- I drink lots, but eat barely anything...but I could learn to make myself eat properly- I look after a diabetic/celiac so am very good with menu planning funnily enough!

And I definately don't get those 8-10 hours of sleep...more like 5-8 if I'm lucky, really lucky. I've cut out bars and partying though, that was a big adjusment for young little me I see target in your list of shops, so in reference i live in canada and don't have that, so I am legal here age wise- so big adjustment!!!

Since the seizures I haven't taken any medications, not even tylenol and I'll be sure to stay away from the cough medicines- thanks for the warning! And I can only say that i'll try to say I'll take the good advice over coffee-starbucks just calls me sometimes though...but I don't do junkfood/fastfood. A subway sandwhich or the occasional icecream is as close as I get to junk

And i definately want kids!!!!! I have kids with me everyday all day and have for years- folic acid is important is it? glad all is well- did you have a boy or a girl? Your more helpful then you could imagine! my doctor seems useless compared to all of you!!!!!!!!!!!!!!!

 

[skillefer]

LOL...haven't had the baby yet....Not due till July. And trust me...I know quitting caffeine is hard...I used to drink 9 cups a day. I'm a teacher, and it was very rare for anyone to see me without a coffee cup in hand....the teachers joked and told me that it would be faster to just do the coffee as an IV drip. If I could have, I would have. If you have a history of diabetes at all in your family, then you really do need to make sure that you're eating. The reason being that low blood sugar can trigger seizures. That happened to me once while driving. Took out the gas main of a house. Luckily nobody was injured. And yes, folic acid is THAT important. If you take it prior to getting pregnant, it can protect the baby from birth defects that our meds can cause. Good luck! Oh, and yes, mention the fact that your last two seizures were five days after your period to your doc. Then, you might want him/her to do some bloodwork checking your hormone levels. Robinn at this site helped to greatly reduce her daughter's seizures by figuring out the that it was a hormone issue. She got her daughter a hormone cream, and the combo of that and several other alternative treatments and her daughter is off of meds.