So here is a good story for laughs for all you fellow seizure peeps!
I am new to the "Seizure World" I was recently hospitalized for what was thought to be a stroke. A neuro is called in for consult and takes over my case. After some test he happily annouces that I have had a massive seizure and begins to tell me that all these years I thought I had migraines were instead seizures. So he proceeds to put me on keppra 500mg x3per day. Says I'll be back to normal in a week. Turns me over to the Physical Medicind doc who is in charge of my rehabilitaion...since I couldn't walk(weakness on entire left side) or talk and couldn't focus to see at all.
So fast forward 4 weeks to my first neuro appt since being released from hospital...
Neuro says that I should be 100% by now..why aren't I? I say you tell me! Personally I thought given how I came home from hospital I was doing pretty darn good!
Neuro preceeds to tell me that my keppra should have taken care of ALL SEIZURE activity and that since it hasn't I should go see the NeuroPsycologist that evald me in the hospital(who said Iwas mentally very healthy...I was so glad she cleared that up...I was so worried I wasn't! LOL)
So I proceed to ask him if I need a different or stronger seizure med...Neuro says that the Keppra is enough and seizures don't work like that......if the Keppra was helping(which the EEg showed it intially did) then it doesn't just stop working...so I say but isn't it possible that it worked at first cuz it helped to calm my brain with the MASSIVE loading doses you put me on in the hospital and now my brain is use to that particular drug and dose and it is saying it isn't enough? He proceeds to belittle me by NOT answering mine or my husbands questions and only gets hot headed because we challenged him!
He proceeds to push the psych bit on me because my speech wasn't 100% and my walking was still unbalanced..although without the assistance of the walker or anyones help! He further more got irritated when I reminded him that I didn't come looking for him or the siezures he agreeded to take on my case and gave me that dg and I was only trying to not only understand what had happened to me but WHY and how to prevent it!.....further more I told him that I know peeps who are on many different seizure meds at one time and that not all meds work for all seizures and that he hadn't evald me for what type of seizure I had even had! Then my hubby proceeds to ask him about the stroke that the ER doc was adament I had even though the CT didn't show a bleed...he says I didn't and that was that...so after much debate he finally admitted to us that neither he nor the hospital had the "right" testing equipment to further eval me and that I needed to be referred to a specialist else where...like Cleveland Clinic....so I think that maybe he is the crazy one since he couldn't just admit that HE WASN'T SURE what to do or why I have continued to have issues...and 3 hours after this visit I saw my Rehab doc also for the first time since hospital and he was EXCITED at my progress in my speech and muscle coordination in left side!! He further said that another month and I'll be good as new...a far cry from the 6 months that he had projected it to take! Thank God for him! The neuro had me feeling like it was all in my head and I was faking it all because his precious Keppra isn't working...so Mr neuro I think you need a pysch because you obviously don't know your butt from your head!
One last thing....we asked him if there was a chance that the MRI didn't pick up on something and did he pysically look at it...he said the MRI is like God and he believes he did look at it! So we ask if there is another MRI or something like it that we can do for a follow up and he says no...well little ol ignornant crazy me found all kinds of research today that clearly states a CT and MRI with contrast should have been done on me and neither were!
So frustrated with docs who DO NOT LISTEN TO THEIR PATIENTS!!!

markrisgold,



I am had epilepsy ever since I was 10 and now I am 58. I did have surgery in 2009 and have not had another one since and it really feels good, but since I had it in early life I just lived with it and found out who was my friends. My DH has always stood right beside me and so has our children.

I had a neuro here in town that work with a lot more than the rest of the doctors. He sent me to an Epileptologist (Dr. specialzing in epilepsy), he was so good. He is located in a school of medicine, seems they come around with great solutions.

Back when i was having them I wood have them a few days before my period, so I knew when it was coming. Most of them accorded in the summer time, everyone is different.

Some of the many things to do is, always stay away from flashing lights as in a theater, take Vitamin B complex, nutra sweet (aspartame) which causes more electrical activity.

Hope I have help you out. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

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

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