Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

How true are these stories?

Mon, 04/24/2017 - 16:53
I am helping my sister do some research surrounding epilepsy in pediatrics. My nephew has been seizing frequently and the doctors are unable to figure out why. A co-worker of mine sent me some information on "CBD" oil as a form of treatment. Has anyone heard of this or tried it? I read up on it a little bit here -- www.cbdoilexpert.com/cbd-101 -- The videos seem to good to be true. Any guidance would be greatly appreciated!

Comments

most people don't get an

Submitted by Amy Jo on Mon, 2017-04-24 - 20:00
most people don't get an explanation of why they have seizures, so that isn't unusual. imaging doesn't actually see everything such that it sees all damage (external or developmental) which can cause seizures AND genetics of epilepsy is complicated - what is known is dwarfed by what is unknown. at first they thought our child's seizures were due to damage (reasonable leap given the info available), now we have more data and it's expected it is genetic - well, no genetic testing was done but the data is solid and genetic is the only option that can explain it.the question isn't what caused the seizures but what kind of seizures occur, is there a syndrome this falls in, and are the docs qualified to treat it (because not every neurologist is appropriate, best results are most often with an epileptologist).so some people jump on fad bandwagons for profit all the time. there is cdb related research (see epidiolex testing with certain extreme epilepsies) which shows it helps some people but like any drug, it's not right for all, not perfect solution, and there's much to be understood (before it becomes available at a pharmacy). it is not something one just gives to kids. there are plenty of people promoting it inappropriately.

A question that needs to be

Submitted by just_joe on Wed, 2017-04-26 - 10:45
A question that needs to be asked is How long was the video?? A person can be fine for long period of time and then have a seizure that lasts some time. Testing is still being done. It may be available in some states but some states have not passed a law approving it yet. I was tested and had 20 EEG's that all came back normal. It was about the 26th EEG that came back with abnormalities. In that EEG I fell asleep. So testing may never show the origin. The origin may have something in that area of the brain, But then sometimes it does. If there is nothing showing on the MRI then the cause will not be known. For me the origin is the left lobes of my brain. Where the abnormalities in the EEG showed up. By looking closely in that area on the MRI of the 1960's they say scar tissue in those same lobes, So they found the origin for mine and  a cause which is the scar tissue. For some people the cause might be a tumor, a cell growth or something that is not normal. Like medications it works for some people but may not for the next.Like  Amy Jo posted you need to see a pediatric neurologist that specializes in epilepsy. Then can tell you more. Without knowing if the doctors are neurologists then they may not know the best treatment for him.

Honestly, it annoys me how

Submitted by lovelypinkx on Fri, 2017-04-28 - 00:29
Honestly, it annoys me how everyone makes CBD oil like it's a miracle treatment (sorry I just heard about it so many times and I got sick of hearing it lol). It works for some people and doesn't work for others. You also still have to take it with your medication if you are taking medication. I'm not sure what type of doctor you have, but maybe change doctors? Not sure what to tell you. I asked my doctor about CBD oil and he was kinda hesitant on it.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.