This is me

[shortie89]

Hello,
When it comes to me I am 21 and have had E since the age of 13. I have tried a bunch of different meds but my seizures are never under full control. At the moment I am on 1800 mg of trileptal and 500 mg of topamax daily. I also take ativan, but thats only to help me come out of seizures. I was going to college in hopes of moving forward in life however my disibility has held me back a bunch. Im no longer a student, mostly due to the side effects of topamax. Ever since i have been on the medicine i have felt very "stupid" i have the worst word recall, i cant hardly remember things from just the other day or maybe earlier in the day. Its really bad. That is what really made me stop going to school. All of my grades were dropping. Its so stressfull.

So here I am, 21 I cant have a job, I cant drive, I dont go to school and Im still at home with my mom; mostly taking care of her because she was in a work accident. She was hit by a fork lift. So I tend to her as much as i can while still dealing with epilepsy.


There is a little insight to the life of me

 

[Endless]

Hi, Shortie,

And WELCOME! You'll like it here in the forum. I've learned lots from the people here. They have a lot of helpful knowledge.

I'm sorry to hear about your memory. Also really sorry that you had to take a break from school. I have high hopes that you will be able to go back eventually.

There is a lot of talk about memory in here. Almost everybody has problems with it, either because of their epilepsy or the medication for the epilepsy.

Do you think it is all due to the Topamax, or maybe also the Trileptal and also the seizures? I'm on Trileptal and I sometimes can't remember what I had for lunch. Or even that I had lunch. Or breakfast. The doctor says it is from the seizures, but I'm not so sure. I blame the Trileptal.

Here are some threads about memory:

http://www.coping-with-epilepsy.com/forums/f27/memory-issues-7284/
http://www.coping-with-epilepsy.com/forums/f23/do-you-have-trouble-remembering-things-9622/
http://www.coping-with-epilepsy.com...obe-resection-linked-drop-verbal-memory-9710/
http://www.coping-with-epilepsy.com/forums/f34/memory-9624/
http://www.coping-with-epilepsy.com/forums/f20/concentration-memory-lamictal-epilim-9597/
http://www.coping-with-epilepsy.com/forums/f23/memory-loss-during-post-iptic-9578/
http://www.coping-with-epilepsy.com/forums/f34/memory-issues-9155/

 

[Nakamova]

Hi Shortie, welcome to CWE!

I'm sorry about the memory problems. A lot of folks call Topomax "Dopomax" becasue of it's side effects on cognition, so I suspect that's playing a big part in your word recall problems. Perhaps you can back off your dose slightly at some point.

Do you have a sense of what your seizure triggers might be? It's a good idea to keep a seizure diary in order to try and isolate the triggers and avoid them if possible. Triggers can be anything from fatigue or infection to dietary issues or hormones.

I hope you feel free to explore all the forums here, and chat or vent as needed.

Best,
Nakamova

 

[shortie89]

Nakamova,

Thank you for the welcome I Hope at some point i can lower my dose of meds, not too long ago i just got my dose lowerd to my 500 mg...i was on 800 mg daily. Then when i finally went to a new neuro to see about surgery he backed me down to the dose im on.

I have been keeping a seizure diary to try and isolate my seizures. For the longest time i figured it was just stress then, i narrowed it down to hormones. But honestly, that really hasent happened as often anymore :/ its just so confusing

Believe me i need a place to vent every now and again..and this seems like a good place to do it.

Shortie

 

[shortie89]

Endless,

Thank you for the welcome I thought in a place like this i might meet some others and learn some new things, at least im in high hopes i can.

When it comes to my memory, I really feel its the topamax. As even my Dr.'s have referred to it as "dopamax"...it really messes with your mind. However its the only drug that i have had the best reaction to. Even in a conversation sometimes it takes me a few min to think of a word or just what i was going to say... its pretty bad. I dont know it the Trileptal also plays apart in it, but for the most part i blame the topamax/dopamax. Im sorry to hear about your memory as well i know how you feel, it really does suck! (for lack of a better statement)

Thank you as well for the threads about memory, im going to take a look at those

Shortie

 

[RobinN]

Hi Shortie - my daughter was 14 when she had her first seizure. We tried an assortment of medication, but it seemed to make her seizure frequency worse. So I have moved towards alternatives, and making nutritional changes has made the most improvement in her episodes. She has gone 5 months without. Where as on medication she was having 6 each month.

Memory has been a problem for her too. When we did neurofeedback, she seemed to have improvement in that area. Which proves the brain can learn this if asked to do so.

 

[shortie89]

Robin,

The one thing i have not tried is changing my diet, i have heard many positive things as far as that goes. I just havnt tried it. I believe i mentiond it to my old neuro where i used to live, and he actually told me to wait on the diet change. Once that happend i just kinda "forgot" about it, put it on hold and then got used to the med changing.

Thats great to read that your daughter has gone so long w/out any seizures. When my seizures started in 2002...i went one year of having pretty bad seizures. Then when i was 14 i got put on topamax, that seemed to stop them "at the time" anyway...i went 2 years w/out a seizure. I thought i could get my license and everything, but right before my 16th birthday is when i had a few seizures in my sleep and a pretty bad grandmal.

Shortie:e:

 

[valeriedl]

This is a great place to come and find info and vent about things. I came across it about 8 months ago after visiting many other sites. On the other sites it would take days to get info or for someone to answer your question if you got anyone to reply to it at all! On here someone will usually get back to you in a few hours and they know what they are talking about because there are so many people that are dealing with the same issues that you are.

I can feel for you also. I started having seizures when I was around 26. I had to quit the job that I was working at and had to move back home with my parents. The relationship with the guy that I was dating at the time just sort of stopped because he lived about an hour away. He had trouble dealing with what I was going through. Since I can't drive it was too hard for us to get together so that didn't help much either.

Luckily I wound up finding a guy that takes great care of me. We wound up getting mairred. He's not afraid when I have a sez.

Also it is a great idea that you keep a sez diary, I do too. This helps me alot when I see the neuro that way when he asks me questions about what happened during a sez I have it right there and don't have to try to remember about it. Also any times that I think I may have had a sez I can tell him too. Most of the time I don't realize that I am having one unless there is someone there to see it happening. If I think that I may have had one I will write that down too.


I have horrible memory loss too. At first I couldn't remember things that had happened that morning, but now things that happened a few months ago are going away. If I have a sez though I will usually forget things that happened that day or a few days before.

I have damage to both sides of my brain so I am unable to have surgery. I have a VNS implant, however I still have to take meds. I have less sez than I used to have before I got it and they aren't as bad and they don't last as long.

I hope you find this site useful to you, nice to meet you too!