[epiphanyd]

I have had a siezure for a little over a year now and have yet to find a medication that works with my nuerologist. I think he is an idiot,. Anyway I get petit mal seizures, and daily headaches on the left side dof my head. (No consistancy between the two. I have been on dilantin, depakote, lamictal, zonisamide, and a bunch of other crap that will work for like one month till my body gets used to it then I will go into regular seizures again....Any suggestions to suggest to him or rather the recommendation of a good nuero in Detroit, MI?

[Eileen F]

Have you eliminated aspartame and MSG from your diet? It's very complicated because most processed foods contain hidden forms of MSG. But you can start by not drinking diet soda (just a guess). Aspartic acid and glutamic acid are amino acids in most food - but the levels vary. Check out http://msgmyth.com/ for more info.

[peppermint1]

Could I ask if you're male or female and how old you are? I'm really not just being nosy....it can make a difference.

I'm not a doctor or nurse or anything but I sure do think it's important to try to take all the epilepsy drugs longer than one month (unless they have bad side effects) ... they all can take up to 6 weeks to gain strength and really start working.

And IMHO it's even more important that you have an EEG, CT scan, things like that .... all the testing possible to try to determine WHY you started having seizures.

Best wishes .... let us know how things are going.

[love2laugh]

I agree with Peppermint in the fact that meds-- especially seizure meds, often take longer than one month to work AND some meds ( such as Lamictal ) can take much longer than a month or even 6 weeks for a person to titrate onto them---much less see signifigant results. It took me 5.5 months to titrate onto Lamictal; about 6 weeks to reach my initial goal dose of Keppra (and after we stayed there for about 6 weeks, we decided to double my dose over a period of another 6 weeks), 3 weeks to titrate up onto Neurontin and well, I think you get the picture (and those are just my current meds--I've had E for 14 years and have been on variety more ). That is not to say you won't be able to see some benefits from the medication before you hit your target dose, but you might not be able to see full benefit.....

So, Seeing that you have already been on so many meds considering the fact that you have only been diagnosed for a year is a bit much. To further explain that, with meds you will often see some initial side effects that will pass with time--- and "time" meaning up to several weeks or longer. It can also take a while to figure out exactly what dose is best too.....

My opinion in that regard is that you probably need to give the meds some longer time to see the most benefits with the least amount of side effects.

I think another one of the things Peppermint was trying to get at in her question about age/gender, is that for some women (not all, but some), their seizures tend to increase (or perhaps its the only time they occur) at certain points in there cycle --- its commonly known as catamenial seizures. Different doctors have different strategies for dealing with this....

Keep you chin up-- so much of epilepsy and treatment is trial and error and it may take more than one medication or type of treatment (I am currently on a combination of 2 seizure meds and then another med for nerve pain that is also used as a seizure med). I know this is frustrating-- but you can do this and get through things .

Hang in there !
L2L

[peppermint1]

Thank you love2laugh ....

There were times when I was on THREE AEDs at one time and now I'm still taking Trileptal and and Topamax together.

Let's hope we hear from epiphanyd very soon.

[Ellie]

In combination with other suggestions here, is your neuro checking the med levels? It may be too low, which is why they're not working. I also think a month is too short (excluding bad reactions). I think checking levels and the idea of raising or lowering dosage (too much may do this, too) should be done.

Hang in there!!

PS: Trying a lot of meds (we typically call it the "Labrat Phase") is pretty normal and most of us have gone through it.
PSS: Welcome!!

[Porkette]

Hi epiphanyd,

Welcome to the forum! Just like you I've had petit mal (absence seizures) for 35 yrs. and I've tried 13 or more seizure meds (AED's) and not a single one has completely stopped my seizures. I finally had 2 brain surgeries to help reduce my seizures.
As Eileen mentioned stay away from aspartame (neutra sweet) it has been proven that it causes more electrical activity in the brain and can trigger seizures for some people. You should also cut back on the starch foods and carbohydrates. I learned about this after going on the ketogenic diet to help reduce my seizures and it has worked well.
You may be drug resistant like I am and that's why I had surgery. Today the Dr. can order a DNA blood test for you to see what seizure meds would help you the most by matching it up to your DNA profile.
Over the yrs. I've seen many neuros. and I found I got the best help going to a University hospital where they have an Epilepsy Center. There I have worked with an Epileptologist- Dr. specializing in epilepsy, a neuropsychologist who does tests to see what side of the brain is being affected by the seizures and a neurosurgeon. All these Drs. work together as a team to find the best treatment with the least amount of AED's.
I've found taking vitamin B12 1000 mcg. once a day a big help along with taking diamox and mysoline which breaks down into phenobarbital. Here's wishing you the best of luck and May God Bless You!

Sue

[shawn33]

Hi there,

I know what you're going through. I have had seizures for 15 years now, and they got worse from simple partial to grand mal last year. So now I have simple partial, complex partial (petit mal), and grand mal. I've been on every medication on the market, and NONE of them have helped me. I've also had 2 brain surgeries, and the VNS, and I'm still having all the seizures. So it's probably not your neurologist, you probably have severe epilepsy just like me. Currently I'm in the research study for the RNS, and that has helped some. It's reduced the amount by 50%, but they have yet to be controled.
I read about this one man that was born with seizures. He had them until he was 94 years old. When he was 94 is when they finally discovered the new med that got his under control. So we may need a medical device, or a med that might take a while to find.

Sincerely
shawn33

[shawn33]

Originally Posted by epiphanyd

I have had a siezure for a little over a year now and have yet to find a medication that works with my nuerologist. I think he is an idiot,. Anyway I get petit mal seizures, and daily headaches on the left side dof my head. (No consistancy between the two. I have been on dilantin, depakote, lamictal, zonisamide, and a bunch of other crap that will work for like one month till my body gets used to it then I will go into regular seizures again....Any suggestions to suggest to him or rather the recommendation of a good nuero in Detroit, MI?

I have been on every med on the market before my first brain surgery. Then I had the brain surgery, the right temporal lobectomy. Since the surgery didn't even stop the seizures, my neuro told me that I have SEVERE epilepsy. My seizures are also cause by scar tissue on left temporal lobe. But everytime I'd start a new med, I'd go 2 to 4 weeks seizure free, and then they'd start up again. Now I'm in the research study for the RNS.

[lor]

I have had seizures for over 35 yrs & have taken all the meds. One worked, with my tonic-clonics but not my complex partials. Like others have said, you should try them for longer than one month.