hello to all

[supatortoiseboy]

Hi everyone this is now my second posting thought i should put my name down in the foyer and say wat i'm all about

My epilepsy doesn't seem to be too severe and i'm currently on a low dose of epilim 400mg twice a day... under the supervision of my neurologist i went off the meds ans i was seizure free for two years and then i woke up one morning to the perferatted mouth so back to the meds i went...

I'm glad to have found a forum with so many people who can sympathize with the torturous lifestyle that being medicated and the loss of (perceived) freedom associated with E

Anyway again a howzit and looking forward to chatting to you guys some more

Gav

[Meetz1064]

and how's it going? Nice to meet ya!

Welcome to CWE! I hope you're going to like it here, there are plenty of different nooks and crannies to check out--full of information and the like. And don't forget to check out the Padded Room when you need to vent.....

Sorry to hear of your setback, it IS a bummer when that happens. But you seem to have the right attitude about it, so that IS a good thing. Have you ever kept an E journal to help you find your triggers? Are your seizures nocturnal ones, or is there a specific pattern? Mine are strictly nocturnal, all 4 kinds.

Feel free to poke around, and kick your feet up. Oh, and hopefully someone will have some decent coffee (decaf) soon. I keep burning it, and literally just blew up the decanter! *hanging head* Hmmmmm.....is someone trying to tell me something?

Take care!

Meetz

[supatortoiseboy]

meetz

I'm good bro thanx for the speedy reply lol had a bit of a horrid evening yesterday and decided that being in denial was getting in my way so this was my next step

think the E journal is a good idea i will start it as soon as i have something to write

And as far as the grad mals go (That is wat the violent convulsing ones tend to be right.... the more common attack?) they are nocturnal... not sure if i may be having other types as well think i may blank out from time to time not sure if i'd know about that though...

mocha-choca for the win

[Meetz1064]

the journal now might be the best thing for ya. Let me know if ya want the list I have of stuff to put in it.

Grand mals (also called tonic clonics) are actually less common but MORE WELL KNOWN than any other type of seizure because of how dramatic they are. And if you're missing bits of time, you may very well be having other types of seizures. (Sorry.)

[supatortoiseboy]

No need to apologise think it's better to know

And yes i would greatly appreciate any suggestions of stuff to record

[Meetz1064]

It's a bit long, so be forewarned LOLOL

***********************

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. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

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. ****side note**** Auras ARE partial seizures!!!

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

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

******************************

Responses To The Above List


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, Skillefer, (we call her Skilly), 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 where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer 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.


*****NOTE*****Some people do keep track of their bowels also, as they find that that is a trigger, too.....

[supatortoiseboy]

Thanx alot budy

I shall start myself a journal asap

[Bernard]

Hi Gav, welcome to the forum.

Make yourself at home here.