newbie help please

[bowly]

i had a grand mall seizure 9 months ago and the mri showed a legion which was diagnosed as tubercloma,dnet and calcification from cycticercosis by 3 diff doctors..the eeg is good so epilepsy is ruled out..i am confused as to what medication to follow as diff medications like lamtec,levera and tegretol was suggested

i have been having complex partial seizures since then every month due to lack of sleep,irregular diet and stress..

3 days back i had a 2nd grand mall after 9 months and did an mri again..the size of the legion has not increased so tubercloma was ruled out by the doc and he jumped to dnet as the cause..

so i met a fourth doc who has put me on oxcarbazepine and clobazam..

i am a 27yr old female and plan to conceive soon..dont know what medicine to follow ..can someone help here please

[Nakamova]

Hi bowly, welcome to CWE!

First off, a negative EEG does not rule out epilepsy -- plenty of folks here at CWE have definite epilepsy diagnoses and have never had a positive EEG. And "epilepsy"is just a loose diagnosis meaning that you've had more than one seizure, so it does seem that you fit that definition. There are a number of different anti-epileptic drugs out there, but no easy way to predict which will work for you. It tends to be a process of trial-and-error to find the right dosage and med. In addition there are preventive/proactive measures you can take -- you've noted particular seizure triggers (fatigue, diet, stress), which is a good start. If you can avoid these triggers, that will go along way toward seizure control and keeping any meds at as low a dose as possible. Some folks here are CWE have been able to avoid meds entirely using dietary methods, and people have found therapies such as neurofeedback helpful for seizure control as well.

It sounds like you need to get a set of doctors who are all on board with each other. In addition to a neurologist, you should try and find an OB/GYN who has familiarity with epilepsy, or works closely with an epileptologist/neurologist. Pregnancy can mess with your hormones (and trigger resulting seizures), so it's important to be under the care of someone who has experience with this. It's also considered optimal to be on as few anti-epileptic drugs as possible during pregnancy. I don't know if you have that option, but it might be worth seeing if you can get stable on one rather than two anti-epileptic drug meds before conceiving. And make sure you are taking a folic acid supplement -- it's considered a standard pre-natal vitamin, but is especially crucial for those on anti-epileptic drug meds.

The newer anti-epileptic drug meds are considered safer for the developing fetus than older one. There are a number of CWE members who have had successful pregnancies while on meds, and you may hear from them. You can search for pregnancy-related issues using the search tab at the top, and feel free to post specific questions.

Best,
Nakamova

[bowly]

thanks nakamova..thanks for taking time out to reply..currently i am on oxcabazepine which is supposed to be the newer one and a bit easy on the sides..and clobazam which is a temporary drug till the oxcabazepine settles in to the maximum dose..

am also on a folic acid supplement..

will search for pregnancy related posts too..thanks once again

[Nakamova]

You can also search here for info on oxcarbazepine (or Trileptal, the brand name) to see how folks here have experienced it.

[phoebecat]

yes my son has normal eegs also - I don't know why - if he is hooked up to an eeg and has a seizure there is very little disturbance so far - however he has not had many eegs -

a calcium or vitamin d deficiency can be a problem. My son was at NIH years ago for his seizure treatment and his blood calcium was boosted with supplements of calcium and 2400 IU of vitamin d to try to get the calcium through the brain barrier. I would think there is more info on this now. Also the Ketogenic Diet from Johns Hopkins, Baltimore MD may give you dietary help. This diet has been around since 1923 and helps a large percentage. Check it out online and see what you think. Sometimes doctors don't acknowledge diet as a remedy - even when clinically proven - they love their pharma, I guess. Take care of yourself and your little rider.

[Endless]

Hi, Bowly,

And WELCOME!

It sounds like your doctors are taking good care of you. This is good. Sometimes it takes people months or years to find good doctors.

I'm on Trileptal, too. The side effects from it vary from person to person. Some have none at all, some have a lot. I have a lot. The dr. had to cut back my dose because of a rash and flu-like symptoms. I felt like I had been hit by a truck, and was pretty much in bed most of the time. Now I'm still really tired, vision is blurry, thinking impaired, etc. But few seizures!

Trileptal is listed in Pregnancy Category C. This means that caution is advised. There really haven't been enough studies to tell how it affects the baby. Maybe there are better choices if you are planning pregnancy? Please make sure your neurologist knows that pregnancy is a short-term goal for you. Also, in some areas, there are epileptologist's that actually specialize in pregnancy. They really have a handle on what meds you can take. You might want to look and see if there is one in your city.

http://www.epilepsy.com/medications/...ptal_pregnancy

[phoebecat]

there is a movie starring Meryl Streep called "First Do No Harm" about a family dealing with their son's intractable seizures and finding the Ketogenic Diet.

Also google "Ketogenic Diet Johns Hopkins" and you will see the latest info for adult eplieptics

[bowly]

there is a movie starring Meryl Streep called "First Do No Harm" about a family dealing with their son's intractable seizures and finding the Ketogenic Diet.

Also google "Ketogenic Diet Johns Hopkins" and you will see the latest info for adult eplieptics

thanks phoebecat,appreciate all the help..will surely check out the ketogenic diet..

[bowly]

hey endless,i too am sleepy all day and lack the romantic feelings for my ever loving husband..in the morning before taking my meds i am back to my normal self and my husband feels very happy to see me in my chirpy avatar..

i also have dry skin and it feels itchy, can all this be controlled in some way..

another thing is do you know about category a and b meds for pregnancy..

[Nakamova]

You might want to check out this recent thread:

If you're thinking of getting pregnant...