I need help finding information

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I am not the best researcher. I try, but I find I get overwhelmed so easily trying to sort it all out which triggers my overactive brain... lol... grrr :eek:

I know there are lots of resources listed here on CWE to find info. What I was wondering is if anyone would like to share with me their favorite sites to use for researching epilepsy and treatments.

I like sources that are not physician run studies. I can't read those very well because they stress my brain. I also don't like the real basic sites as I'm way past those. So something in the middle would be good. I've read a lot on wikipedia, but it always seems to stop short of the nitty gritty info I'm looking for.

Specific questions:
All tests used to record or test for seizures
How to interpret the results of your tests, eeg, mri, etc
"Standard of care" treatments for seizures
All meds used for seizures and their untoward side effects
Ongoing testing to expect in the future
Information on the prognosis of seizures/epilepsy

I don't expect answers to these questions, but if anyone has any links they want to send my way, that would be great. Or if anyone knows how to search this site to find a compiled list of seizure meds or side effects to meds as reported in these threads, that would be cool. Its really hard, in my current state (post concussion, and many simple seizures brought on by minimal brain use :rolleyes: ) to do searches and compile this info.

Thanks in advance. I appreciate any info or suggestions. I also appreciate all of you.

:flowers:
 
All meds used for seizures and their untoward side effects

Well it's not *every* medication, but here's a list of the most common and routinely used medications, with their common side effects, and the specific types of seizures they're normally used for.
http://www.webmd.com/epilepsy/medications-treat-seizures
Do note: that's a two page article so don't overlook the second page. :p

This link also gives a list of general treatment and care options, which leads to articles that explain further:
http://www.webmd.com/epilepsy/guide/epilepsy-treatment-care

The tests are typically these:
MRI - Magnetic Resonance Imaging
CT - Computed Tomogriphy
EEG (of various types) - Electroencephalogram - Long term, short term, ambulatory (where they give you a backpack and send you home with it for a few days)... there are lots of different ways to do an EEG.

That said, they can also do others, such as blood tests to measure red and white blood cell counts, blood sugar, blood calcium, and electrolyte levels, and to evaluate liver and kidney function. The blood tests help rule out the presence of other illnesses as well. Or lacking certain vitamins and minerals.

They can also do other scans like Magnetic Resononce Spectroscopy (MRS), Positron Emission Tomogriphy (PET scan) and Single Photon Emission Computed Tomogriphy (SPECT scan). Don't quote me on the spelling of those though... that's off the top of my head. :)

Ongoing testing to expect in the future
I imagine in certain cases genetic testing will become available. But we've still got a ways to go when it comes to really understanding our genes.

This might be promising as well:
http://www.webmd.com/epilepsy/guide/20061101/new-blood-test-may-detect-epileptic-seizures

How to interpret the results of your tests, eeg, mri, etc
It's pretty subjective. Gather as much knowledge and understanding as you can, and find a doctor who has done the same, and you should be able to figure things out well. Communication is what's most important, not so much the results of a single test... It would be nice to have one test that gave a "Yes" or "No" but I'm not sure that'll ever be the case with Epilepsy :p

Hopefully this helps a bit...
 
That's a great wishlist Julie. It's tough to find solid, easy-to-read sources for epilepsy data out there. I often use NIH/pubmed, though some of those can get highly technical. Here's the basic NIH info site: http://www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm
Epilepsy.com is pretty good too, especially the "professional" section.

I find that "askapatient.com" is good for a description of side effects as reported by actual patients. And it includes information like how long someone has been taking the med and what their dose is. You go to the site and plug in the med you want to know about. For example, here is the link to Lamictal ratings (27 pages worth): http://www.askapatient.com/viewrating.asp?drug=20241&name=lamictal

In terms of interpreting test results -- those are probably best left to the experts. There's a lot of training that goes into reading CT scans or MRIs. EEGs too, with an added level of complexity because of all the context-based variables that are in play. For EEGs I would recommend an actual illustrated textbook rather than anything on the web.
 
I agree with both and thanks to both!
I look up my meds and read everything I can I read webMD user reports of the meds so I can see how its affected them, and then, look up on the same pages as naka posted and as silat, never stop trying to learn julie you are your best advocate!
mike
 
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