Lurker now joined

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
emilyobryant

emilyobryant

New
Messages
7
Reaction score
0
Points
0
Epilepsy Lurker finally joined

Hi, my name is Emily and I am a 30 year old wife and mother diagnosed with Generalized Epilepsy. The symptoms strarted in the spring of 06 shortly after the birth of my daughter and was positively diagnosed in January 2007.

I am lucky in that the first medication prescriped (Keppra) works for me. The dosages have had to be altered here and there. (Stress is a big trigger for me....always much stress before a seizure).

My last grand mall seizure was in July (i actually had two within the same 24 hour period..two trips to the ER).

My last seizure was November 4 - complex partial. My doctor attributes it to my insomnia. Been trying different sleeping pills, none have been helpful (ambien, lunesta, tromazepan). But, last Friday I was prescibed the lyrica, which does seem to be helping.

Its supposed to help with partial onset seizures and also helps with anxiety and sleeplessnes. This is my third day and so far I have no complaints.

Any thoughts on Lyrica? Anyone have any good or negative experiences with it?

Anyway - nice to finally join. I am sure you will hear lots more from me because I am still not the expert on GE that I want to be.

~Emily
 
Last edited:
Hi Emily,
Welcome to CWE. My daughter Rebecca has Tonic Clonic seizures too. Hers tend to be triggered, by hormones, diet, and stress. I have not seen any sleeping issues for her, so thankfully we haven't had to medicate for that. Her neurologist just took her off of her fourth med, due to concerns of the risks involved with rash, etc.

I am glad that you decided to join us. We banter ideas around here all the time, searching for clues, support, and alternative therapies.
 
Your daughter's triggers of horomones, diet and stress is almost exactly like mine. I have not experienced it TOO much with diet because I don't drink that much caffeine and haven't come across antyhing else yet, but my doctor gave me a BIG list that I needed to stay away from.

Stress and horomones are what really trigger me, though. In fact my neurologist told that I would have developed GE at some point in my life but all the hormonal changes of being pregnant and having my daughter "kick-started" it.
 
I found information early on about diet, and chose to experiment with gluten free, casein free, soy free, corn free menus. Soy can increase estrogen levels, so that is a no-no right away. I also believe her intestinal tract isn't healthy so that plays into the gluten and casein issues. I have not had her tested for allergies yet, but have been watching how she reacts to the removal of these "foods". I do think she is eating healthier, however, I am not convinced that I have enough of the carbs out of her diet to heal her "gut". Sugar is difficult with a teen, and the refined carbs are what she tends to go for when hungry. Let's face it.. I do too.

I agree... stress and hormones. Rebecca's came upon her the first year of her cycle.

So we still have our challenges.
 
ha - well I am 30 years old and I cannot keep myself away from the carbs or refined sugars either. AND NOW ITS CHRISTMAS TIME. lol.

I have actually never really tried doing the suggested low carb diets. I guess because I have found that my medicine controls my siezures.

But hey - maybe I should give it a try. A diet would definately do me some good. (after the new year that is)
 
I like to think of it as a nutritional plan, as it is only for the nutrients, that we eat.
A diet always has a nasty taste in my mouth. A bit of a dark cloud over my head. Where as a nutritional plan, I see health and clarity. Hey.. I am a visual person (artist).

Wouldn't it be great to do away eventually with the meds, if a change in eating would do the trick. Nope.. not saying it is for everyone, but for me it is my goal.
 
Welcome Emilyo!....

....Keep your stress down, have as much fun as you can this holiday season, ....enjoy life!

Here's wishing you a seizure-free holiday season!

Peace!
:rock:
 
:hello: Emilyo!

Welcome to CWE!
Wishing you a Stress-Free Holiday!
 
Hi Emily!

I just wanted to take a few minutes to say hi, and welcome you to CWE, Emily.........I've been running behind on that particular aspect as of late, it seems. :ponder:

I, too, have the lovely tonic clonics. :roflmao: :pfft: Sorry. I TRY to have a sense of humor about them. I haven't had one in over four years now, but once in a while, in my sleep, I have these other lovely myoclonic szs......part of the reason I haven't had a t/c in 4 years has been due to cutting out gluten and lactose products, since I'm allergic to them. I use a modified form of the GARD diet.

I've got to get going......I need to pick up one of my meds from the pharmacy & then go to work. You've picked a great place to make friends, and learn a LOT. Which, when it comes to ep, is important. My personal mantra when it comes to ep is KNOWLEDGE IS POWER. Feel free to ask questions, vent, rant, rave, whatever. We'll be here. Take care.

Toodles!

Meetz:e:
 
Does anyone think that the reasons my seizures have increased is because I found out I was Diabetic and started drinking diet pop and eating boca products????? oh my goodness! I have sooooooo many theroys in my head! I was diagnosed with Generlized tonic clonic frontal lobe Epilepsy at 5 years of age and now I have no idea what I have! I am so frustrated! Welcome Emily!
 
I can't really say for sure about the diet pop, I have been drinking diet pepsi for many years now it is my main drink, I know one of my daughters is always after me to stop drinking the diet pop because of my Epilepsy. However, my seizures started before I started drinking the diet pop. I am not sure what boco products are?
I have tonicclonic,partial, and complex partials.
I hope you find out real soon exactly what you have, I know from experience that being so frustrated doesn't help the seizures it makes them worse.
Tammy
 
Last edited:
Lovies,

I don't know what all ingredients are in boca products, BUT in diet pop.......the aspartame/glutamate in particular is an EXCITOTOXIN that DOES aggravate ep. Enough so that yes, it WILL trigger szs in some people.

If you click onto the section about Alternative Treatments (under the Navigation Menu on the front page when you first sign in) it will lead you to a chart.....on the chart is a whole slew of options to check out. Start looking at them......you'd be surprised at what you'll learn.

One of the others has a more detailed list of everything you might find it in.........I did, but I think I deleted it by accident.........:-(

Happy New Year!

Meetz
 
Yuppers... I agree with everything that was said above.
Diet Pop is not a food. It is a chemical and should be taken out of your daily intake. IMO
Certainly at the very least it is an excitotoxin, and those with seizures need to consider the impact of this chemical.

There is a lot of information about diet. Take a stroll.
 
Hi Emily, welcome to the forum. :hello:
 
I have diabetes as well as epilepsy. My neurologist told me that high sugars can lead to seizures. Also, experience has shown that for me at least, aspartame leads to seizures.

Welcome Emily

Kerin
 
Status
Not open for further replies.
Back
Top Bottom