Hi Markrisgold,

A DNA test is done when the Dr. will take saliva and blood from a person this will show what DNA the body is made up of and by doing this the neuro can find out what AED's (sz. meds) will work the best for a person to control the sz. and they will have the least side effects inside of trying drug after drug and then finally finding out that only certain meds will work.
I had this test done a few yrs. ago and I found out I was mostly drug resistant meaning that no sz. med is going to stop my sz. but they found that the drugs mysoline, diamox, and vimpat have helped me the most and I didn't have that many side effects like I have with many other meds. Here's wishing you well and May God Bless You!

Sue

Hi there,

Isn't it funny when the Neuro-surgeon's don't have the answers in a analysis/catchup with you, reach for their iPhone to get the description of a new medication you are being told to be put on from the Neurologist catchup, and scratch their head while you are getting frustrated by them not knowing?

They didn't even know what 'Trileptal' was...the new one on top of Keppra I am now to be taking.

I must admit, my partner, brother and mother were in the room, and the Neuro backed up and listened when questioned 'shouldn't you know this?'.

It sort of makes you go 'well if I don't get the answers NOW, then the second opinions will be getting searched for somewhere else' asap.

Hi timlaw,

Welcome to the forum! I can't believe that the neuro didn't know what trileptal is that drug is older than keppra and it's like a second cousin to the drug tegretol because they are so similar.

You might want to look into finding a different Dr. or get a back ground check on the Dr. you are seeing right now.

One thing that's very important is never eat grapefruit or drink grapefruit juice while on trileptal or tegretol because the enzymes in the fruit will mess up both of these drugs and lead to seizures. Also make sure you use a sun block if you burn because both of these drugs draw the suns rays in more. I've taken both of them in the past and then I ended up with a rash from the drug after taking it for many yrs. Here's wishing you the best and May God Bless You!

Sue

Hi Sue,

Thanks for those details! I have written that down to make sure that I dont go near those kinds of things while I have what I have

And you are right...if the Dr. does not come up with the date of my biopsy for one, and this drug Trileptal doesn't keep the seizures away, I am going to ask to be taken off it. Simply because it has, what I think, not done a thing and only multiplied my seizures, as well as made me more 'dosile'.

Cheers,

Tim

Hi Tim,

If you try and find a new Dr. you might want to try seeing an Epileptologist (Dr. specializing in epilepsy) and be sure to go to an Epilepsy
Center which are usually at University Hospitals or very big hospitals. I've seen many neuros over the yrs. but I found seeing an Epileptologist (Epi) the best thing I ever did. The Epi. works with a neurosurgeon and a neuropsychologist and they work together as a team to find the best help for people with epilepsy. I was on many different seizure meds over the yrs. and then my Epi had a DNA test done on me to find out I was drug resistant to most of the seizure meds. You might want to get a DNA test done to find out what sz. meds will help you the most and have the least side effects. I've learned taking vitamin B12 1000mcg. once a day reduces seizures for many people including myself. Cut back on caffeine, starch foods and carbs and start eating foods high in fat this is known as the ketogenic diet which helps stop or reduce seizures. I have had absence (petit mal), complex partial, and aura (simple partial) seizures for yrs. and this diet cut back my seizures this past yr. so I had 81 fewer seizures. Here's wishing you well and May God Bless You!

sue

You know what...it's when you look outside the square you find places like this that help!

The things that you have mentioned to start looking at suit me down to a T like cutting back on caffeine etc, because some of those things I am already on top of

I have one question though; lately I found out that my cholesterol is just below 8, which is not good coming from a Neuro's mouth. So if I was to cut back on caffeine etc, and do what I am already doing to lower my cholesterol, what would happen if I started eating fatty foods at a higher rate? Would that elimate my chances of lowering my cholesterol?

Appreciate any help there, because clearly around a hospital and some Neuro's you don't get the info you need

Hi Tim,

My Epi. has limited me to 4 cups of caffeine a day and in regards to cholesterol on the ketogenic diet mine has dropped because instead of using carbs and starch foods for energy you are burning off the fat for energy. If you are interested in this diet you can buy the book titled; "The Epilepsy Diet Treatment" by Dr. John Freeman. I know I was overweight when I went on the diet and within 4 months I lost 75 lbs. it was great losing all that weight and I was able to eat cheesecake, foods with a lot of cheese, butter, heavy creams etc. Here's an ex. of a breakfast:
2 eggs cooked in butter
5 strips of bacon, or 2 slices of ham, or 2 sausage patties
1 cup of coffee or tea
1 cup of juice

Your body is building up ketones which curb your appitite and the keytone reduce/stop the seizures. Here's wishing you well and May God Bless You!

Sue

Hi markrisgold

I would be going to look for a new neurologist. I had a 72 hour EEG done a few years ago and my doctor refused to read it after I demanding 3 times. Walked out of his office. One of the best things I did. I have a excellent neurologist now. I had a stroke when I was 10 months old and my first seizure wasn't till I was about 27 years old. I think my first seizure was a grand mal but not sure. Currently diagnosed with partial focal seizures, and under control with meds.

Hello and welcome, happy to see you have come to be with us, it a great place to be. We caring fellow members here, welcome to a supportive and relaxing place. Our shoulders are here for support in many ways.

Sue has given you some wonderful information on epilepsy. Until I found a very good neuro willing to take the time to listen to my situation and do as he could, including sending me to an Epileptologist. There I was successful in the need in testing and then was returned to the care of my neuro.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hello all! So much good info on this Thread...thx to everyone.
I am Cleveland Clinic bound this friday! YEH!!
I had an Epitologist call me directly last week to let me know that he had reviewed all my hospital records from my admission and that based upon it all I needed to be seen asap. Plus he already has me scheduled for the Monitoring Unit in the Epilepsy Center.
He looked at the same test results as my crazy "former" neuro did and never evaled me in person and said I needed to be admitted to the Monitoring Unit asap as well.
So they got me in in record speed from what iam told and I am so thankful