Epilepsy Community

• I have a 27 year old daughter currently on this medication- she has had siesures since they were detected as petite mal (starring spells) in the 3rd grade, she now has both. We have had along road, with many medications, some causing lapses of szs but, inevitably came Brain surgery to remove Epileptic damage in the left tomporal lobe last June, after a great deal of testing, It was to hopefully take them all away with no promisses on the petite mall. Shortly after she started them up again, they felt surgery was a success- they were different, that it maybe a spiral down healing syndrom type thing. that theyll go away. However, now more often again- hense the medication she is on..... there are many side effects and practically no siesures and i dont know what to think........

Practically No Seizures should be "No Seizures At All!" Especially on that many AED's. Especially after Surgery. As for side effects, if they are affecting 'Quality of Life" then she needs to Tell them to ween her OFF & Try Again. Try to keep it Mono Therapy, for at least a yr. There are Newer meds available. But, I would chek out 'alternatives' also. Diet can help a Lot in diminishing & even eliminating seizures in some. Please use our resources. I will assume you keep a Journal. But, please read our Journal Tip, to be sure you are including all necessary info. I ain't a doc, but, That is my Opinion.

If her DRs don't agree to any of this, please seek yet another opinion. We are indeed on a Dr/med Merrygoround & our Journey is full of going round & round & up & down.

I do hope you will continue to visit us. Feel free to ask More questions, vent or just update us. Know we care. Hugs for you &&& Your Precious Daughter.

Love Candi

Thankyou so much , i wish i had known about this sooner, i stumbled apon it quite by accident when i was re-reading about her meds and the side effects, i do feel that they should take her off the phenobarb and now especially the Depakote there has been so many side effects that it has interferred with her quality of life and ours.
We just dont have any help that really helps. I thought i might be journaling things correctly but Learning is better than giving up and letting her go live somewhere else -because its to hard at times.
I feel im just not doing it right .... or that maybe she will do better else where learning - am i holdin her back? lol I just dont know after today.
thankyou again for atleast giving me hope~ god bless you

Hello Vicki,

I stumbled onto this site searching for med info, also. About 20 yrs ago. I have been seizure free for over 20 yrs. Thanks to Phenobarbital. But, as I have learned 'what works for one may not work for another. And w/ Epilepsy, Treatments are All 'trial & error'. The only way to Know what works is to try it for at least 6 weeks. Then increase dose or change meds again. You & DRS should notice the diff if/when she is on the rite treatment.

Holding her back? In what way? How often do her seizures occur? You said she has petit & Convulsive seizures. Are both Still occurring?

Want to Learn more? Would you like to read some books, also? You don't have to join these sites to read/search for info. Visit epilepsyfoundation.org or epilepsytalk.com (Both site links are in our resources) for books you mite be able to locate thru your local library. Just ask for your Research Librarian. Book most recommended over the yrs. Treating Epilepsy Naturally By Pat Murphy. All books Can be found on Amazon.com if interested in purchasing.

Mom, Best Advice for parents/caregivers: Continue to treat the person w/ Epilepsy as Normal as possible! We Are Still Normal. We Are Just Unique!

Never Give Up Hope! It took me & my daughter over 10 yrs each to find our seizure control. Time & Patience. Easier said then done, but, worth it!

Love Candi

Hi vickilyn,

welcome to the family.

I have been on a variety of meds since 3/75 when I was first diagnosed with ep. I was in the 8th grade when I had my first one.

The meds' side-effects certainly interfered with my schooling cause they caused me much discomfort regarding attendance, memory, and simply feeling yucky/dopey.

I don't think that I ever took the combination of the ones that you mention in your title but I have been on those at different times.

Prior to my surgery in 4/02 I was taking keppra, trileptal, topomax, and lamictal. I think it was about 7000 mgs/day. That was a combination!!!

No med is going to be without side-effects of some sort. Some mild whereas others will be totally too much for someone to handle. That is why I have been on such a variety of meds since day one.

Like Candi says, if a med is disrupting quality of life for your daughter, think about a new one. I had one med that totally kept me feelling lousy/high for most of the morning. But after an in-patient eeg(my meds were drastically reduced and the 1 sezure I had didn't show), I asked that it be taken away. My doc agreed and was thrilled that I felt it unnecessary.)

Taking meds daily is tough. Particularly when they keep changing types or dosages. But it sounds like your daughter has a good support system, YOU, and she will keep moving forward. It is a roller coaster that many of us have trouble riding.

After surgery, I had a 1 year period of no seizures. Then I went 4 yrs. For some reason the seizures started again and were much milder. But right now I'm moving along a 35 week period without any and plan to cont counting the weeks.

As usual, candi is wonderful with her suggestions. Does your daughter have any questions that she would like to share with us?

I stumbled on this site sometime last year. It is a blessing to have others to share with who fully understand what we're saying.

Hugs to you and your daughter. Happy Mother's Day to you(and all the other mothers who are reading this)

angie.

angie

Thank You Angie, Happy Mothers Day to All from me, too.

Love Candi

I was on Lamictal and Depakote together and never liked that combo. I took 2000 mgs of Depakote at that time and it made me toxic. So the neuro cross-titrated them down so i was just on lamictal. For the pheno at the same time ask Candi since she combo stinks but here again what works for one may not wprk for another.

hula_dancer

thankyou- im sorry i didnt see this sooner, i have not been well myself lol. i am going to have a discussion with them next we meet at Dartmouth/hitchcock medical hospital in Lebanon, NH . I am in hopes that i will feel better about this and that they will take her off the meds and possibly try her on something else. They did remind me of her last 5 day stay for monitoring in the neuroscience ward, that this may be a spiral down effect and they may go away. However, it has almost been a year since her lobectomy surgery and although she is well , i am still convinced that the side effects of the medications are mostly her problems daily.
I thankyou all for your comments and help it matters to me.
i feel i myself need to learn so much more, to help her.

Vickilyn

Becky as had sz since 1997, when it was discovered petites were mislabeling her as a behavior problem, she has had some really poor doctors, until 7 years ago, her doctor came from DartmouthHitchcock medical and he really wanted us to see his professor there. Finally 2 years ago we moved to NH and got the refferal to see him and as a result she had left lobe ectomy/hipocampus removal surgery last june to take away 4 different types of petite and so they say rare grand mall. At that time she was on lamictal and vimpat, it and nothing would stop them.
After her surgery we made it a few weeks and she had a big one and they said it maybe from surgery so to wait and see.
then 2 others came and it put her in a 2 day coma and they intabated her and rush her to Dartmouth in Lebanon NH .
Yes, very scary!
they put her on phenobarb then. It worked as to reduce the amount of siesures but didnt stop them. in november they added zonegran and took away vimpat.
That made things worse. so they did the week study in january - this found a new created 1 spikewave petite they didnt know where it was coming from, and the grand mall unfortunately was coming from the surgery site.
they said it might go away- in time.
in the mean time they now insist that the combination of lamictal/depakote is the answer to this type she is having. and thy have left her on phenobarb but are now reducing it, a bit due to it interferring with the lamictal levels.
She was on depakote from 97-2000 and the side effects were not good and she developed a metabolic disorder. so i worry...
They did put her on Carnitor as well knowing her past.
I am rambling lolol
anyway thankyou very much for your post, and for the book and web refferences. i have read some.
I have always tried to treat Beckyjean as normal as can be, she was my first born and was only 1lb.13oz. back then they didnt have what they have for preemies, and although we have a million dollar baby she is perfect!!! and i will never give up.

It is so worth it!!!
Vickilyn

thankyou , i was told that the depakote would mess with the lamictal level by driving it up- and could make her toxic....
to date however, the phenobarb is overpowering that and making the lamictal low .....eeek!
I just think it it is to scary of a combination to mess with after reading- and her past and with all of your opinions on here that seems to have not changed how i feel , so i will tell them.

Thankyou agian and i hope this finds you well
Vickilyn

Hi vicki,

You're welcome. Apology accepted, but it isn't necessary. Thanks.

My docs initially diagnosed my seizures as petit mal. But tests later showed them to be complex partial(aka psychomotor.) That began the roller coaster of meds.

As the others are saying, it's possible that the meds are countering each other. Such problems caused my hair to fall out in the early 80s.

Remember that I asked my doc to eliminate a med. It was Vimpat. My thoughts are much clearer w/o it.

Your daughter's medication problems sound similiar to what I went through prior to my lobectomy. Changes, addition, eliminations did little in regards to long-term effectiveness. It was frustating.

In addition to the sites that Candi has mentioned, please check Amazon.com for additional readings.

Is there an epilepsy foundation near you? Someone there might be able to supply you with additional info and resources.

How does your daughter(what's her name?) feel about all this?What are her concerns?

I tend to agree with you that her meds are a hindrance to her abilities and progress. I wish you well with the upcoming appt.

Get those questions ready!!!! Your's and your daughter's.

til next time,
angie

hi, her name is Beckyjean and she doesnt know to say much except that she doesnt want siesures anymore , sweet thing. thankyou again for your help...

Good morning Beckyjean and Vicki,

Miss Beckyjean, I understand how you feel. Seizures can be a bother. Seizures can interrupt so many things that we want to do...schoool, driving, living alone, relationships It does bring on a life of isolation that is hard to adjust to.

Miss Beckyjean, I am now 51 years old. I have never let me ep stop me from moving on. Yes, it caused me to alter my plans or take a different road, but it NEVER STOPPED me from finding something that kept me happy and moving on.

I'm sure it is hard on you but do your best not to give in. You are stronger than this over-active brain that has become a part of you. Remember, epilepsy/sezures is not your identify you unles you let it take control of who you are.

I hope I'm making sense to everyone. Miss Beckyjean, think about joining us in these discussions. There are no dumb questions. If you simply need to rant out all of you frustrations, we're here to listen 'cause we have all been throught something similiar to what you're feeling.

Be strong. Have a good day.
angie

Thankyou~ i tried explaining to her your comments- i read what you wrote to her , she has said it was nice. she doesnt understand much she not only has epilepsy , she has cerable Palsey and she is metally delayed due to mr.
she doesnt know how to join our discussions or how to tak about what happens to her, except to say she hates them and wants them to go away lol.
thankyou for speeking to her- she is a very strong girl and lives life to the fullest.

stay strong too, happiness always
Vicklyn and Beckyjean