worrisome symptoms

[dorothymills]

Hi,
I am 37 years old and concerned that I may have a form of epilepsy. I have had sporadic symptoms since I was about 20 years old. I have experienced deja vu, jamais vu, confusion, time loss, people asking "where did you go?" etc. a dozen or so times since I was about 20. I had one noticeable (body movement) seizure when I was 21 - I seized during a blood test - I was sent for an EEG and nothing of concern was found.
Here's the problem - I've started to have a lot of trouble driving especially in sunlight. I feel dissociated from my surroundings and like I'm going to lose control of the car. It's kind of embarrassing and I'm terrified esp. since I have two children with whom I usually drive. I'm wondering if anyone has had experience with this type of feeling. Does this sound typical of a seizure? Or maybe a sleep disorder? I have to pull over, close my eyes, and the feeling usually passes, but it's extremely exhausting.
Thanks for your support.

[Meetz1064]

like you're becoming photosensitive, and you DO need to see a neurologist. Photosensitivity DOES cause seizures, and it seems that you may be having some from the description that you're giving.

You'll want to start a journal. Be specific in it. I can give you a listing of things to put in it to help you, but the journal would help you find patterns that may be the actual triggers for what is causing your problem--then you can present this to the doctor.

Sleep, video issues, light patterns, computers, food, stress and more are all considered triggers for seizures.........

Welcome to CWE, btw. I'm sure you're going to like it here..........there's plenty of information to be had, and you'll find that the Kitchen and Library are chock full of it.

Enjoy the party. Hopefully one of the others will be around with some decent drinks. I keep burning the coffee amongst other things.........*sigh*

Take care,

Meetz

[dorothymills]

You're awesome! I just needed a wee push to get me to make an apt. with the Dr. As a Mom, it's pretty easy to put yourself last. Thank-you. Thank-you. Thank-you. Funny you mention videos. I was trying a relaxation video on youtube and a warning came up not to watch if you have epilepsy. Since I only suspect I have some seizure-like activity, I thought I'd be OK. Oh boy, was I wrong. I had to shut it down fast. I felt disoriented within 2-3 seconds.
Can you point me to some information on what to include in a journal? I'm sure I will have to wait to see a specialist so I may as well be prepared.

[RobinN]

Hi dorothy - Welcome to CWE
The journal has been the heart and soul to my daughters improvement.
I just used an empty calendar page. I printed it off of a epilepsy website, and I think there are links here. I will try to find it.
I keep my daughters monthly cycle on it. I put down any dietary clues around an episode. I put down the time, type, duration of an episode, and I highlight it with a certain color. Her cycle is another color.
Anything worth considering should be noted. Over time you might see some indications that should be discussed with your doctor.
For my daughter it has turned out she is diagnosed with hypoglycemia. A trigger for seizures. I have also been able to prove that she had more seizures on the meds, than she does off of them. The doctors can't argue with the fact, because it is documented on my calendar.

[Meetz1064]

that you can use anything you want to keep track of it in. Calendars and notebooks work, so does a spreadsheet if you're so inclined.

One website I can think of off the top of my head is www.seizuretracker.com. But I believe the Epilepsy Foundation has one also.

However, here is a copy of what I tell people to put into the journal.

Oh, and by the way. If you DID react like that to the video, you are photosensitive....more than likely. Especially if you're having problems with patterns when you're driving, as you said. One person here that I know of--make that several--can't handle watching the shadow pattern of trees on the road.

And having been an E patient, and a mom of 3 kids, I DO know how u feel. Now mine are all grown, thankfully. In college or graduated, and I'm only 21!

OK, I digressed. Here's the journal stuff.

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

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 Statements

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.

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

One other note..........some people have found that they have a seizure when they have a bowel movement, so tracking if that actually does happen may be worth it as well.

If you don't take the time to take care of YOU, YOU are NOT gonna be able to take care of those kids properly............hint hint.

Take care,

Meetz

[dorothymills]

Thanks so much. I do have a lot of 'tweaky' things going on neurologically and it is such a relief to get all this info. The leaf patterns do really effect me when I drive. I also find that certain fluorescent lighting puts me into a stupour-like state.
I really appreciate your support and am making an apt. to see my Dr. when we get home from vacation. I also told my husband what I think is going on and we've agreed I won't be driving very far (or with the children) until I get this checked out.
It's so strange that the episodes (which are quite mild) embarrass me - nothing embarrasses me since I gave birth twice! Thanks for making me feel normal. Good luck to everyone out there fighting the good fight, especially all the brave Mommies. My thoughts are with you.