Epilepsy Community

Meetz posted:
Hi there.

I don't want to sound bossy or presumptuous, but after 44 years of practice with E, I have a bit of experience.

I post on a couple of other forums, and Candi knows that I am a moderator on one of them in particular.

E Journals is a topic that a lot new E patients truly don't understand the importance of, and I just can't stress them enough. I'm going to post below what I tend to tell the newbies on the other forum that I moderate on to put in their E journals. You can adapt it as needed, and I know some of the others here, such as Tammy, have brought them up before. But, having one has certainly helped MY neuro. It can certainly help YOURS.

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.

******

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods at one of the other forums promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down. Especially in patients like me, who have multiple diagnoses going on (Candi can vouch for this).

I've got to get going--I'm hooked up to a portable EEG as we speak, and I've got meds to take. If you have any questions, please feel free to let me know. Candi knows how to find me, as I really don't know if I can find my way back in here again.

Good luck, and take care everyone. Hopefully, I can find my way back here again.........*eyeroll* Don't count on it though..... *chuckling*

Meetz
(From the Epilepsy: Support Group)