Hi markrisgold,

From what you have posted it sounds like this neuro didn't care at all what was going on with you. I've had to deal with neuros like that in the past and one of them ticked me off so bad that I turned the Dr. into the Medical Conduct Board and the neuro had to answer up for all the wrong he had done and he got into a lot of trouble.

Like Darlene said you are better off with an Epileptologist they know and understand much more about epilepsy and how to help you out. I have a feeling the neuro was a little edgy because you knew more than he/she wanted you to know about the epilepsy. The neuro could have done a FMRI
(functional MRI), sleep deprived e.e.g., wada test, and many more tests. Take my word the Cleveland Clinic is a well known place to go they are at the top of the list in the medical field. Just make sure that they do a DNA test on you to find out what sz. med will help you the most with the least side effects. I wish you the best of luck and May God Bless You!

Sue

Thank you so much ladies! This Forum has been so educational.
Can I ask how a DNA test works and what it shows?

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