Looking to gain as much knowledge as I can

[s10sleeper]

For about the past year or so, I had started realizing that I was kind of in the dark about a number of things about my epilepsy. I had maintained copies of letters that my epileptologist had sent to other people when I requested him to notify them of things or to explain my issues. I was really looking at them along with remembering alot of my problems over the years as I have come upon the decision that I need to know every single thing possible about my disorder. One of these reasons is due to the local physicians and the ER doctors in the city I live seem to have absolutely no clue about epilepsy at all and the only doctors that do are the ones that personally know the doctors at the epilepsy centers.

Anyways, I have even come to realize that none of my family quite understand it and treat it like it is no worse than something such as medical issues that are easily controlled or cured. With the load they put me on, I need to somehow explain to them what is going on as even this week my psychiatrist got on me about it and so did the epilepsy center as they do each time I see the.

So I have been trying to research all I can, however to find any kind of scholarly articles or information is very tough as what I am able to find uses terms that pretty much requires a doctor to understand, it is easy enough to look up the definition of each word, but when used with others doesn't quite seem to be understood well. I have purchased some books, however books that are in terms that are easy to understand are generally very vague too, and what I would like to know are the details and theories. I know that epilepsy is not very well understood, but even information on it seems to be avoided.

The epileptologist is sending me some info over my history and going to try to be as easy to understand as possible, but I know there will be alot of terminology to figure out

Does anyone know of any good sights or places to locate this kind of info that does not cost an arm and a leg as I know google scholar requires you to pay and so do all the online libraries.

[RobinN]

I don't pay for research sites. I have read pub-med articles, and slowly over time I have learned some of the terminology. I have a library of relevant books, that were very helpful. I scoured websites, a lot of info here in the library, and followed the links. It slowly sinks in.

Perhaps take a class at a local college, or online, and do research on the subject for a term paper.

Find a mentor that you can ask questions

I am sure others here will have some suggestions.
I applaud you. That is why I have the signature quote that I do.

[s10sleeper]

Thanks, as for a mentor, I actually have a great rapport with the epilepsy center as they are willing to answer any questions I have. Sometimes though I feel almost like I am asking to much especially if I say I was reading something online as I would figure that they may look at it as self diagnosis which I have figured could be irritating.

The reason I figure that is because when I worked as a mechanic, the one thing I couldn't stand was when people were trying to tell me the diagnosis and trying to use terminology that was being used inappropriately because they thought they knew what they were doing and I also got a little annoyed when they would ask me questions about a problem they had when I was off work as I never liked to take my work home with me.

Unfortunately in this particular area I live in, even the doctors have very little clue as anything they try to tell me is stuff I have already heard or contradicts what the neurologists and epileptologists say.

The big thing though is that I would really like to find some kind of place that gives a plain english definition of alot of the terms used.

Some examples off the top of my head are "bilateral mesial temporal sclerosis" and "constant bitemporal epileptiform activities"

The words alone I understand but when placed in phrases kind of gets hard to figure out, especially when used in the same paragraph in discussion of my diagnosis.

I have actually considered taking a class at the local college or online, however, I have no funding whatsoever as I maxed my student loans and although I am on Voc Rehab, the state has pulled alot of funding and so I have not been able to get a thing from them even for necessities.

[Nakamova]

"bilateral mesial temporal sclerosis" and "constant bitemporal epileptiform activities"

I can help with those I think:

bilateral mesial temporal sclerosis = damage to, or loss of nerve cells in the middle temporal lobe sections on both sides of the head. This section includes the hippocampus, a part of the brain that plays a major role in encoding of memories, and in spatial orientation. "Mesial Temporal Sclerosis" is haracteristic of temporal lobe epilepsy.

constant bitemporal epileptiform activities = Ongoing abnormal brainwave patterns, characteristic of epilepsy, appearing in both temporal lobes. (This would be used to describe the results of an EEG.)

[Cint]

The big thing though is that I would really like to find some kind of place that gives a plain english definition of alot of the terms used.

Maybe this website will help you out some:

http://www.epilepsy.com/pdfs/Epilepsy-Handout.pdf

[Cint]

I don't pay for research sites. I have read pub-med articles, and slowly over time I have learned some of the terminology. I have a library of relevant books, that were very helpful. I scoured websites, a lot of info here in the library, and followed the links. It slowly sinks in.

I don't either, but I've read many books and articles written by experts from around the world and have been part of research myself in the past 30 years, so during all this time and trials, tribulation, I have learned the terminology, too.

[epileric]

Also, this online medical dictionary might help too.

http://medical-dictionary.thefreedictionary.com/

[s10sleeper]

Thanks for the info, so, Nakamova, if I understand this correctly, the bilateral mesial temporal sclerosis is meaning that I have it on both sides? I have been curious about this as I have really been trying to figure out exactly where my seizures may be coming from as that was a term used when my Epileptologist sent a letter to another doctor for me.

I have been getting told about the constant epileptiform activity all of the time by the doctors as my RNS has shown constant slow wave epileptiform readings of readings when I am asleep, from what I am gathering they are also saying that I am having constant waves and spikes during my sleep, which when trying to research that is said that it normally only occurs in childhood epilepsy, but they say that that is what the stimulator catches the most of along with during regular eeg readings I have had as many as 5 seizures a night.

I do use the information I can find on google, however many times I find things that contradict each other which is why I am looking into probably purchasing other articles or if it comes down to it, I have found books on kindle intended for medical research, unfortunately they tend to run over a hundred dollars. One other one I found though is basically a huge listing of neurological terminology

[s10sleeper]

Oh, and the other reason that I am really wanting to figure this out is that in these letters it seems to be stated almost every time that my seizures have been some of the most difficult to control that he has seen. I decided to ask about that to the other doctors that I know thinking it may have been embellished but they said he is always straightforward with everything. This is making me figure that the more I know the easier I can make it for the doctors.

[Nakamova]

yes, bilateral means both sides. Constant epileptiform activity doesn't necessarily mean constant seizures. But it does mean you are vulnerable to having them.

It's great that you are working on getting better informed about your health and what the doctors are saying about it. Doctors tend to throw around medical phrases without taking the time to explain them. They can also put things into your medical records that might be incorrect or a matter of opinion. So it's good to be prepared and on top of things.

[johnnachos]

hi my names john and the woman i love to no end suffers from epilepsy and honestly its scary as hell. i cant really give much but what i can tell you is that the people on this site are here to help eachother and we all care so i would keep looking here but you may also want to get some info from epilepsy.com or you can go on webmd.com and check out what they have. also i have come into contact with some people at the epilepsy foundation they are a huge help. i hope i can help now and possibly in the future and im sorry if i offend you for this but im praying for you

[s10sleeper]

Yes, johnnachos, you are correct, I go to epilepsy.com quite often as I am enrolled in the epilepsy therapy project in order to assist in some of the funding for my implant. Medicaid refuses to cover it and I found out medicare will too.

Another good thing I found was that the cofounder of epilepsy.com, Orrin Devinsky M.D. has written a few books, one of which I recently purchased and am almost finished with. There is alot of info on the site and so I go there everyday, plus I log my seizures there.

Nakamova, thanks for the feedback, that was something that I have picked up in my readings plus asking the doctors, unfortunately it is also one of the triggers for my implant to fire. What they are telling me is uncommon though is that it is literally constant, my brain is more active in my sleep than other peoples on a constant basis they say.

I am really considering buying a book on neurology to start with, reading it and then finding a comprehensive epilepsy book and just going through it slowly. Unfortunately I do best with Audible books as my ADHD causes some trouble in reading.