New to forum, always looking for ways to help

[tecknojoe]

Hey everyone. My name is Joey. I'm 23 and I live in VA. I've been dating a girl with epilepsy for 2.5 years now. She's supposed to graduate from college in the spring. She's been struggling with epilepsy since she was about 15. She rarely has grand mal seizures, maybe once every 4 months. it used to be less but I think the stress from school has been getting to her lately. Obviously she doesn't have her driver's license, which is hard to deal with. She's worried about being able to live on her own when she graduates college. I'm going to start a new thread on this in the lemonade section(seems like the right place for it). anyway, I look forward to hearing from all of you and really appreciate all the help on future topics.

[Meetz1064]

and how do you do, TecknoJoe?? It's very nice to meet you!!

Wow, it's really cool that you're willing to take the time to understand E, and to help your girlfriend. E can be frustrating, to say the least sometimes.

Has your girlfriend ever talked to her professors about her E? Has she ever talked to the disabilities office about what they can do for her? She might want to consider that, especially if she wants to consider going on, and getting an advanced degree,

And yes, you're right, stress is one of the biggest problems for E patients. Has she tried keeping an E journal? One where she lists EVERYTHING in it from what she's eaten, sleeping patterns, video patterns (TV, computer & game) as well as menses? I have a really good list if you'd like it. It does help to track down patterns for triggers of seizures.....some people like me are triggered by foods-I am a celiac patient, so wheat and milk are my big things.

Welcome to CWE, and check out the Library and Kitchen for lots of information. The Padded Room is great for venting, too, trust me, we've all been there.

And, if you can, try to get your GF to join us. We'd love to have her. There's plenty of friends and support to go around, I promise.

Take care!

Meetz

[tecknojoe]

and how do you do, TecknoJoe?? It's very nice to meet you!!

Wow, it's really cool that you're willing to take the time to understand E, and to help your girlfriend. E can be frustrating, to say the least sometimes.

Has your girlfriend ever talked to her professors about her E? Has she ever talked to the disabilities office about what they can do for her? She might want to consider that, especially if she wants to consider going on, and getting an advanced degree,

And yes, you're right, stress is one of the biggest problems for E patients. Has she tried keeping an E journal? One where she lists EVERYTHING in it from what she's eaten, sleeping patterns, video patterns (TV, computer & game) as well as menses? I have a really good list if you'd like it. It does help to track down patterns for triggers of seizures.....some people like me are triggered by foods-I am a celiac patient, so wheat and milk are my big things.

Welcome to CWE, and check out the Library and Kitchen for lots of information. The Padded Room is great for venting, too, trust me, we've all been there.

And, if you can, try to get your GF to join us. We'd love to have her. There's plenty of friends and support to go around, I promise.

Take care!

Meetz

that E journal sounds like a good idea. I didn't know you could narrow it down to causes like that.

[Meetz1064]

can. There's actually a form of E (epilepsy) called CATAMENIAL EPILEPSY which is tied to a woman's cycle......

Would you like for me to post what I have for a list, or would you like to make one up yourself?

[tecknojoe]

can. There's actually a form of E (epilepsy) called CATAMENIAL EPILEPSY which is tied to a woman's cycle......

Would you like for me to post what I have for a list, or would you like to make one up yourself?

yea please post. I think it would help

[Meetz1064]

ya go. One thing I haven't added to it, that some people do keep track of is their bowels......yes, they DO find that to be a trigger......

DON'T get too overwhelmed by the list. Most of it's common sense once you really think about it....

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

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.

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

Replies To The Above Topics

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.

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

Let me know if you need anything else, I or anyone here will be happy to help!!

[KelVarQ]

Hi Technojoe,

Welcome and good for you for being there for your girlfriend and trying to educate yourself on E. Sounds like she has herself a real winner!

College can be tough for those with E for a lot of different factors: memory problems, stress, lack of sleep, etc. Meetz is right in that she should inform her professors. I know it helped for me when I went to college. For ex: Part of the final was writing a paper on a video that we had watched and since I have visual memory problems (due to E since that's where the abnormality is) he allowed me to do the paper based on a book that he had us read during the semester as well. So prof.'s can be accomodating if they know your situation.

Also, CAFFEINE! I know coffee and college go together, but caffeine can be a trigger for MANY, including myself. If your girlfriend does drink coffee I would probably throw that in the category with alcohol and cigs. and just eliminate it.

Good luck and use Meetz's list because it really is incredibly helpful.

[mglynn2]

Hi everyone, I am tecknojoe's girlfriend. Thanks so much for all of your information it has been really helpful and made me feel a lot better! I have informed my professors of my epilepsy, and stress and lack of sleep has played a big role in when I have seizures. Thanks so much for the list, I will definitely keep that on hand and I haven't kept a journal in the past, but I just had a few petit-mal seizures so that is where I will start and go from there I suppose.

[Meetz1064]

mglynn, it's nice to meet you!! I'm so very glad joe got you to come join us! I'm sure you're going to find lots of support here, so make yourself at home!!

[mglynn2]

Thanks meetz! I already feel like I have a great support team and I haven't even been a member for 2 days!

[seizingbeauty]

Hi Joe and MG,
Glad you found this place! The support here is awesome. But I'm guessing you already figured that out.
I have to say that Meetz is one of the best on the site (Meetz, you really rock ).
Hope that CWE helps you deal with all of this, as much as it helps me.

[cher1985]

well hello there Joe and MG. It's nice to see that a boyfriend would care so much about his girlfriend that he would look into finding more info.

also MG i'm guessing you're not going to be a math major? my mom found out early 1990 that people with seizure disorders aren't really good in math(i use to rock it).

if you feel like talking you can message me anytime.
~cher~

[mglynn2]

No, I'm not a math major. I'm a marketing major and I've struggled with the required math related classes for that (accounting 211 and 212 and currently finance). That's a very interesting piece of information to know considering I am not good at math.

[RobinN]

Hi MG and Joe - Welcome

well... I think I will beg to differ with that assumption. My daughter is good with Math. Her issue over the years has been reading.

Anyhow, stress most definitely will lower your seizure threshold. It also can damage neurons. We all need to find ways to relax and de-stress often. I am also going to get on my soapbox and say, nutrition good and bad has a huge impact on neurological health. It is not just "eating well". There are a lot of connections between food/ingredient, allergies/sensitivities that can cause seizures.

My daughter remains med free and continues to improve as her nutrition has changed.

[Bernard]

Hi mglynn2 and tecknojoe, welcome to the forum.

My wife has gotten a lot better about it lately, but she used to have a really bad habit of overloading herself with projects and commitments (social, academic or business).

Once she even got a burr in her saddle about running for a position on the local school board. The stress from these commitments had a noticable effect on her seizure threshold. The day she decided to drop out of the school board race, her seizure activity at the time vanished.

She has gotten a *lot* better about managing her schedule within more reasonable limits for herself and her seizure control lately has been really good.

A steady dose of anxiety doesn't do anyone any good.

[mglynn2]

Bernard,

Stress, lack of sleep, and poor nutrition has played a huge role in my seizure activity as well. However it has been hard for me to not be stressed considering I am in my senior year of college and I am freaking out about everything and I also have loads of work to do so that contributes to the lack of sleep and poor nutrition just happens. However, when I had better sleep patterns, better nutrition, and was more calm back a few years ago I still had a few years ago I still had my seizures so who knows..

Regarding those links you posted I viewed the one about alternative seizure treatments and I have a VNS. I got the surgery in June 2007 and am still on 3 meds. But my doctor and I are still trying to control my seizures and hopefully it will happen at some point

[cher1985]

well... I think I will beg to differ with that assumption. My daughter is good with Math. Her issue over the years has been reading.

its not an assumption, my parents went to the superintendent of our towns school system so they could home school us kids and was told by her that people with seizure disorders can have problems with math(it could just be the kind my mother and I have).

[Meetz1064]

have to disagree with the Math thing, too. I'm pretty good at it....I mean, I substitute teach in a variety of subjects, including Algebra 3, and pre-cal, and I usually have to TEACH the subjects, which means I have to UNDERSTAND the subjects.....


Oh, and seizingbeauty.........Thanks for the compliment! You're too sweet!!!

[Cinnabar]

Welcome MGlynn! I always tell a new member to check out The Kitchen and The Library. Both good sources of information. If you enjoy music and enjoy discussing it go to Speber's Auditorium. Fun and very stimulating. Very glad you joined the crew!