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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Many Of You On This Site Actually Teach Other People With Or Without Epilepsy First Aid For Epilepsy Or What Epilepsy Actually Is ?

How Many Of You On This Site Actually Teach Other People With Or Without Epilepsy First Aid For Epilepsy Or What Epilepsy Actually Is ?

A MyEpilepsyTeam Member said:

Good to hear other people are doing it. I have found most if not all GP's, Family doctors, PA's are usually clueless about epilepsy and seizures so I teach them. I have even taught specialists in my different fields, I have even taught Neurologists things they have never heard before. It shocked me at first to see how limited people's knowledge is it about seizures and epilepsy, but after years of teaching people I'm not surprised anymore. I usually expect limited knowledge now. I try to keep it simple what I have found for most people, but I can get technical with specialists and they can follow what I'm talking about for a bit, but I can go into areas even a specialist can't keep up with me and I'm telling the things I've know since 1980. The things I teach are not even in a book but it's all factually. I figured this stuff out in my early 20's. They can understand something in a book, but if it isn't in a book I totally lose them. I can tell just by the look on their face. I have learned to stop seizures by fighting them off. I've done it in front of a number of different doctors in various fields and they are all specialists and they are totally dumbfounded and have no explaination. I even have told them what I had just done and they have no words, only a shocked look on their face, because it something they have never seen before in their life and didn't know it could be done. About 2 weeks ago I was talking to a cancer specialist and telling him about epilepsy and seizures. After about 90 seconds he was totally lost and had no clue what I was talking about. I remember him looking at me and saying "How do you know so much about the Brain?" I used to be ashamed of my condition like most people are with epilepsy. Just over 8 years ago I was teach a young girl with epilepsy about her condition and it finally dawned on me how much I know and understand the condition I might as well stop being ashamed and start teaching everyone about it so others don't have to experience what I went through in the 70's and 80's. So now I teach as many people as possible, even if I don't know them. It's pretty basic and so many people have thanked me for teaching them. You can see how their psychology changes as you speak to them and teach them things they have never heard before and they are grateful to have learned something new and different. I even teach people over the phone and they are glad I had taught them something new and interesting and many get so interest the go home that day and look up more things on the internet because they get so interested in what I had taught them. I get some people so interested in the brain and seizures they tell me I should write a book and I just might one of these days.

posted about 7 years ago
A MyEpilepsyTeam Member said:

I remember in college I couldn't take a full load of classes because I would get so tired from all the medication I was taking. I have over 130 units of college which is a college equivalent, but I have gone past that with my own studies, reading and figuring out things about epilepsy and seizures you can't even find published. It's a lot of personal knowledge and that is pretty advanced now, but I'm still learning all the time.

edited, originally posted over 6 years ago
A MyEpilepsyTeam Member said:

I've over the years have been able to break down and teach advanced Neuroscience, epilepsy and seizures so even children in 6th grade can understand it. It doesn't confuse people the way I teach it. People don't even realize I'm teaching them advanced subjects unless I was to tell them. I've taught thousands of people since 2007 and people are usually very fascinated in what they are learning and even want to learn more. I just keep it simple to understand. The only problem is there is so much information that I teach them I'm not sure how much they retain.

edited, originally posted over 6 years ago
A MyEpilepsyTeam Member said:

I'm happy to see this information on Herbalife. With the chemical interaction of medications, physicians had me on, problems existed. The medication was just twice per day. To overcome some of this, the variation of medications have been reduced and now taken four times a day. Still have some difficulty with consuming milk within an hour of dilantin.
Our daughter-in-law works for a woman certified in herbs before opening her business. She has many customers desiring natural products for certain health oriented reasons. This is even part of your Native American heritage, Cary. Although only in elementary school while living in Oklahoma, many friends in a very small school, were like you, 1/4 or more Native American for free lunch, and even the cooks had remedies for illnesses.
However, the natural health products may not work as expected, when an individual is on FDA approved chemical medications prescribed by physicians. Knowledge of these interactions are not usually high priority in chemical development of the medication. Plus, Herbalife appears to use a process to create a product used as substitute for parts of fruits, vegetables, cereals, and herbs.
Dieticians worked with, at VA Cooperative Extension, suggested non-use of high-processed products, when possible. Evidently higher level of process, usually increases additives used. In each of us, different additives can create problems by themselves. At the time, no regular medication was taken by this Seafood Agent.
We each have our own system to consider in items consumed, medications taken and addition of processed products, overall effects on each of us.

posted about 7 years ago
A MyEpilepsyTeam Member said:

I once tried Herbalife and it did notice it mess up my medication levels. From my understanding of what it was doing is it would speed up my metabolism and my meds would go through me to fast for me to absorb what I needed and it could cause you to have more frequent seizures. So I stopped taking it, glad you brought that question up. As soon as I saw that word Herbalife I thought uh oh, sorry to tell you that but that is my personal experience with that stuff. If I remember correctly(this was over 20 years ago) I think I saw my blood tests afterwards and it made my medicine levels drop not a good sign so I stopped it as soon as I saw that. I hate to tell you that but will most likely do the same thing to you. I drink coffee still but most would think it is very weak. I use about 2 tablespoons to my 5 cups and I have not noticed any affect other than giving me a little boost. I have even tried 5 hour energy because I got so tired so I would drink only half the bottle or less and I can actually feel it affecting my brain usually the frontal lobe on both sides like a mild headache, but It doesn't seem to affect my medicine levels and it doesn't seem to make me have more seizures. I even told my neurologist what I was doing. It was a small experiment and I did gain some more knowledge about it and he had no problem with it but was curious how it was working for me. Now I just take a nap if I'm tired and that will give me the energy I need to help me through the rest of the day. I always feel like I'm giving bad news to so many people. What I told you I doubt you will find that information anywhere not even on the internet but I know from personal experience what it does and what it can do to someone like use with epilepsy. Herbalife will tell you it is fine for you to take but they have no clue what they are taking about. I'm glad you reminded me about that stuff. I'll have to tell more people one this site to stay away from Herbalife.

posted about 7 years ago
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