Need help in Houston

[bareme]

I just discovered this forum after my latest grand mal seizure. Between seizures, I tend to live in a state of denial about having epilepsy (aside from having to remember my meds and dealing with the side effects). I just don't like to think about it, or talk about it with my loved ones because then they worry about me.

I am a 49-year old woman, and didn't begin having seizure issues until 4 years ago. For the first year, I had no idea that what I was experiencing were seizures. I called them 'episodes', and they were very frightening. I felt like I was having a heart attack or stroke, and several times lost consciousness briefly. I went to a number of doctors and underwent a battery of tests where they couldn't detect any brain abnormalities. After about a year, my situation escalated when I had my initial grand mal seizure.

I went to a neurologist who for the first time told me that I was having seizures all along, and put me on an AED.

I started out on Lamictal, but despite increasing the dose several times I continued to have seizures. I also didn't like my state of mind while I was on Lamictal. Next, we tried Keppra XR and I was actually able to go for a year with no seizures. When the seizures started occurring again in Novemer 2010, they were initally minor and the Dr upped my dosage of Keppra. I finally got to the point where I was taking 4000 mg a day. Even so, I had a seizure where I was unconscious for about 20 minutes in March of 2011, then a grand mal seizure last week.

The Dr has now added Depakote (1000 mg/day) and I am not tolerating it well so far. The side effects that bother me the most are nausea, headache, loss of equilibrium, and difficulties with speaking and controlling my saliva.

I would love to hear from anyone who had an onset of epilepsy later in life like I have, and/or anyone who is taking Dapakote and what their experience has been with it.

I am also concerned about combining 2 AED's....wouldn't it be better to experiment with other drugs first?

Also....I am going to quit the denial thing and educate myself about things I can do to identify my seizure triggers (I know stress is the biggie) or explore alternative treatments.

Any comments or suggestions would be appreciated! Thanks.....Ellen

 

[mel239]

I am 47 and dx 3yrs ago with left temp lobe--complex and simple partials only--on trileptal and zonergran added in March.I went thru denial and then depression then learning everything I could and now I am sick of it.Im pretty well controlled except for auras and funny feelings and warm weather makes it worse.Now Im just sick of it--Im ready to lie to my doc to go back to work and pretend everythings rosy--this has taken too much time and energy away from things that matter and I thought things would be done with by now and they are not so Im sick of it

 

[valeriedl]

I was diagnosed with epilepsy when I was 23 (about 8 years ago). The neuro still isn't sure exactaly what caused it. They think that some type of virus got into my spinal fluid and went into my brain. I know I love this web site, it's really nice to beable to talk to people who deal with the same things that are going on with yourself.

I take Depakote, Tegretol, Keppra and Lamictal. I also have a Vagus Nerve Stimulator. It took many years of trying different medicine combinations and dosages inorder to make me have less seizures and they aren't as bad now when I have them. It took a good bit of mixing around with things before I got to this point, as I said though, I am still having them although.

If you don't like the med that you are on then talk to your neuro about it and see about getting it changed to something else. I had a few different meds that I asked my neuro to take me off of. I can't remember exactally which ones they were but one all I did was sleep, I didn't eat or get out of bed hardly at all. I had another one I was on where all I did was eat, I don't remember how much weight I put on, but it was alot.

Also if you are having trouble remembering to take your meds alot of people, myself included, have an alarm on their cell phone that we set when it is time to take our meds. It works great for me.

It may take awhile to find the right combination of meds to work for you.

Ask lots of questions on here and you'll get some great answers.

 

[Nakamova]

Hi bareme, welcome to CWE!

I agree that it's preferable to try to achieve seizure control with just one medicine if at all possible; the more meds you add the more difficult it is to evaluate or prevent side effects. But for some people multiple meds are the answer. If Depakote is being problematic get in touch with your neurologist to see what your options are.

There is good basic info at the links below a proactive approach to epilepsy, and alternative treatments:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[matchu]

hi from houston, i have non epileptic disorder and am here if you ever need anythng. I can give you my number privately. Getting around can be difficult and I will do my damndest to get you wher eyou need to if I can ok. your not alone you found a great support group and friends.

matchu

 

[Endless]

Hi, Ellen,

Welcome to the forum!

I'm later in life, and was diagnosed with simple and complex partials about a year ago. I still slip in and out of denial once in awhile, and toy with chucking all the meds and living on Waldon pond for the rest of my life. (If no one sees the seizure, does it really happen?!) Of course, this is completely unreasonable even if it is nice to think about.

I agree, it is better to be on one drug to control seizures. If you must be on two, it helps to have changes made in only one drug at a time. It's easier to see which drug is causing which side effect.

Keeping a seizure journal is critical to understanding seizures, triggers, and side effects. Here are some pre-made journal formats:

http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[huskymom]

Welcome Ellen!! :hello:

My last name is Houston! So we are practically neighbors I was a late bloomer with E too. I am 51 now (as of last Friday) and have had it for about 5 years (that I am aware of) I hope you feel better soon with your side effects, and I wish you the best

 

[mia3769]

Hi Ellen and welcome :hello:

I too was diagnosed late I have been having seizures a lot lately too. :crying: :blowup2:

My doctor put me on lamictal as an addition to my tegretol but had to stop because apparently it was making me to easily aggravated,
.....as if i'm not aggrevated anyways
..........also i felt so loopy on it bad bad drug for me!!!! :huh:

I just wanted to say hey and that u are not alone and if you ever need to write, yell, rant, whatever well then......

.........................................Welcome to my world!!!!
:wave:

:rose:

Mia