New to this site but sure glad to be here

[Jenniferinva]

I am 42 and have had at least 7 grand mal seizures since the age of 16. Until the age of 21, they thought I just passed out a lot. The rigidity, jerking, combativeness, came later. These came with college exams, pregnancy, flu, and now over past 3 years more often for no known reason other than EEG worse now than 10 years ago with severe left temporal lobe seizure activity. Lights in malls, certain stores, make me sick on my stomach. The only thing I can remember from a seizure is feeling for a split second like I am not really there and everyone else is talking around me and being really thirsty. In fact two seizures resulted in falling.onto the glass of water I woke up to get in the middle of the night to get. I wish I had more notice! I have had numerous facial xrays and ct scans due to seizure related injuries. I thought this would go away. Keppra is not working so now they have added topamax. They will take me off keppra slowly if topamax works. I am scared. I need advice on how to adjust my lifesyle. My memory is horrid! Routine is a must, sleep is a must, finding words and my own purse is a challenge! Will it get better? What can I do naturally to help?? Thanks so much to anyone who has the time to answer,
Jennifer
:e:

PS: the combativeness was only when my hubby tried to wake me up from sleeping off my seizure in all that broken glass! You guys know I was tired!

 

[valeriedl]

. My memory is horrid! Routine is a must, sleep is a must, finding words and my own purse is a challenge! Will it get better? What can I do naturally to help?? Thanks so much to anyone who has the time to answer,
!

I know what you are talking about with your memory. My short term memory has gotten better, but my long term memory is horrible. We just joke about some of the stupid things that I've done and get a good laugh about it. I have a calandar that I keep track of things that have gone on, I've learned that this has helped alot because I can look back and see what I've done and where I've gone.

I've got a alarm clock on my cell phone so I set alarms for important things to make sure they get done, and on time. I use this to make sure that I take my meds on time too. I've got a good bit of post-it notes hanging up all over the place with things written on them.

I can never find words that I am looking for, even if it's something easy. I might be talking to someone about something and just loose the word so I will describe what I'm talking about. For example I've been talking to someone and the word's gone so I'll just say "Oh, that furry thing that runs through the house with the long hair". They will just look at me very weird and say - "you mean your cat?" I've had to do this so many time's that I don't feel stupid doing it any more.

I've learned to just deal with it. I hate running into someone in public who completely knows who I am, but I have no idea what so ever who they are. I've just gotten over the fact that I say -"I'm sorry, but who are you?" I sort of try and make a joke about it and we both get a good laugh about it.

I always have to take my nap in the afternoon, I think it's more the med that causes being tired.

I try to make sure I keep things in the same place, my purse, glasses, paper work and anything else that I don't want to spend hours roaming around the house looking for.

I hope it does get better. Hopefully the switch of meds will work for you. Keep a positave attitude towards it and that may help some.

You'll get alot of good answers on here and alot of help, glad to meet you:lol:

 

[mel239]

I have left tle and have problem finding words and completing ideas and sentences.sometimes its like info goes in but cant come out and if too much goes in at once its too jumbled to make sense so I steer clear of groups and confusion.I also dont do simple arithmetic very well and cant count out money very well

 

[Nakamova]

Hi Jenniferinva, welcome to CWE!

Sometimes the meds can contribute to memory problem, so maybe the switch to Topomax will help. I agree with valeriedl -- leave notes for yourself, write stuff down, keep a journal if you can. The journal can potentially help you see any patterns in your seizures too. Since you know fluorescent lighting can be a trigger, consider wearing sunglasses when you go to the mall. (A lot of people report having seizures in WalMart - - their lighting must be especially bad!).

It always helps to be proactive with your general health. Good tips here:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
And here's some introductory info about alternative treatments:
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[Cint]

Sometimes the meds can contribute to memory problem, so maybe the switch to Topomax will help.

Topamax=Dopamax. For most, Topamax adds to memory problems.

I take 3000 mgs. Keppra and 200 mgs.Topamax. When I took a higher dose of Topamax, I couldn't remember simple things or would loose my train of thought mid-sentence.

Difficulty with concentration/attention and difficulty with memory
TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as "difficulty finding the right word" or "losing my train of thought."