Can't find the right medicine.....
 

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?

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.

Hello epiphanyd
 

Could I ask if you're male or female and how old you are? I'm really not just being nosy..:p..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.

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

Thank you love2laugh :hug: ....

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.

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!!

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

I know what you're going through
 

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

Me too
 

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.

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.

Give it time there.
 

I to have had seizures all my45 YEARS OF Life,and the Doctors could never help me as well ,there are some ppl that will never take well to medications that is a fact,I have tryed most kinds of seizure control medications there is out there but to no help they are to me that is just me thou,no they are right do give it some time in between times when taking a new drug it takes a while for a drug to go all thru your body sometime,and inbetween times the doctor has to do the cbc smack blood work to make sure that you are not toxic to the drug he has percribed so it will all take time The best of luck to you and every one out there.
TAKE CARE ALL HAPPY TRAILS TO ALL

Sorry you're having such trouble, but I have been there too as most on this board either have or will have. I think you called your doc a neuro? Seems like someone would have mentioned this already and maybe I missed it, but if he/she is a general neurologist, that is one of the main problems. Please go to a Comprehensive Epilepsy Center at a major medical center where the docs are Epileptologists who have additional training specializing in epilepsy. That s all they treat and most do a good job. It took 35 years for me to get to one, but I did not have this information that you now have. Epilepsy deserves a great deal more respect that it will ever get from a general neuro who will only play with the meds while it is your quality of life that is being affected. We too deserve good care and the same respect. The statistics are, once one med fails, there is less than a 15% chance that any meds will stop them. I am one of those people. There are other things available that do work, but your general neuro will not tell you about them because theyare outside the scope of his practice and he will have to admit he failed to strop your seizures if he has to refer. This is not about him. My docs hung on to me too, but it was my quality of life that took a real beating. You have the opportunity and knowledge now to make that be different. You have to do it as i did. Tell your primary care doc to refer you to a patient oriented Comprehensive Epilesy Center. Do not ask or mention it to the general neuro. Heill not like it but this is not about him. It is about you and your life. Tomorrow is the 10th anniversary of my surgery I had in 1998 for my epilepsy. I have not lost consciousness since, and I am now in graduate school. Good luck. Tattoo

Here's some HELP for you!
 

Here's a MAP for the nearest Epilepsy Comprehensive
Center (Level 3/4) - click on the link below:

LEVEL 3/4 EPILEPSY COMPREHENSIVE CENTERS - (USA ONLY)

And if that is not suitable, you can also Find a Doctor:

FIND A DOCTOR (Neurologist/Epileptologist) - AESNET/Epilepsy Foundation

Good Luck and Hope this helps!

I would not at all consider the above link to be one that might help a person find a quality Center. I put in my own zipcode and got numerous docs that I know are not epileptologists and others who are at the facility that allowed me to stay in status for over 8 hours during my VEEG!! That was Emory. There is a lot of politics involved ,and to find a good safe Center, it is necessary to talk to other,patients who have been treated by the Center you are interested in. Also, look for the Certificate on he wall saying that they completed the Fellowship in Epilepsy or Neurophysiology. That states that he/she is an epileptologist by training and not by desire only. There are lots of those too, but they do not have any more training than a general neuro does since that is what they really are. Look closely before selecting. You will find sites like this may promote only those they choose. The place that did my surgery and who did such a wonderful job, Medical College of Georgia in Augusta, was not mentioned on that site. Shame on the site. MCG is Emory's competition. Today is my 10h anniversary of my successful surgery by Dr. Joseph Smith at MCG. Some of the others on that site are actually at UCB the pharmaceutical company.Go figure. Tattoo

the meds
 

hi there epiphanyd,

Well to be 100% honest with you I know 2 things for a fact. Nothing is guaranteed to stop the seizures. Epilepsy is incurable! I have had seizures for 16 years now. I have been on EVERY med on the market for seizures, and NOTHING has stopped them. For the first 2 to 3 weeks I'll go seizure free, but then they start up again. Then I have also had the right temporal lobe removed. That only reduced the amount I have per month. I have a friend that had the same surgery, and she went seizure free for 9 and a half years. Then hers started up again. Back in 95 I had the VNS implanted, and that didn't do a damn thing for me for 11 years. Now I'm in the RNS research study, and that is helping me some. But it's not fantastic. In the past I read about where this man was born with seizures, and had them until he was 93. When he was 93 is when they finally came up with the new med that got his under control. You MUST always remember, NO ONE AND NOTHING IS PERFECT!
The research scientist's say they are a step away from a total cure for epilepsy. But it will be technical, not by medication
take care
shawn33