new to trileptal - symptoms?

[kimba]

Hi, I was wondering what other people thought of Trileptal. I just started it and have noticed a strange sympton.
When I am almost alsleep, I wake up as if I bite the side of my tongue and it hurts pretty bad until I shake myself out of it. And then, I don't really notice anything. This happend a few times or more in only a couple weeks of taking it. I though it was my imagination then one day I thought "why does my tongue hurt, maybe I have canker sores" (i used to get them quited often), but then I realized but sides of my tongue (where it felt like I bit it) had sores on it.
Now my husband says I was twitching alot at night when I started it, but nothing like a seizure or anything. Has anyone experienced this with any med.?
I don't like the Trileptal. The twitching, anxiety, and I can barely focus at work!! Thank you for any advice.

[Meetz1064]

long have you been on it? It takes up to six weeks for drugs to really start to balance in your body.

That said, are you noticing anything else strange since you have taken the Trileptal? Check out this link:

TRILEPTAL

Honestly, what it sounds like is that you are having nocturnal seizures of some sort--possibly tonic clonics (I have them--all 4 kinds of my seizures are nocturnal.)

You really need to set up an EEG that is a MINIMUM of 48 to 72 hours, so that your sleep patterns can be tracked well, and preferably one that can be videotaped, too. If it's possible for you to set up a videocamera one night in your room to capture what's going on, so much the better.

Also, start keeping an E journal. Perhaps there's a trigger going on that you don't know about in addition to the Trileptal. I have a nice detailed list if you want it. Just let me know.

Good luck, and take care!

Meetz

[kimba]

Also, start keeping an E journal. Perhaps there's a trigger going on that you don't know about in addition to the Trileptal. I have a nice detailed list if you want it. Just let me know.
Meetz

Hi Meetz,
Im not sure how to do the E journal. That would be nice if I could get a list? Thank you for your help!!

Kim

[Melpier]

There is a web sight called seizure tracker
https://www.seizuretracker.com/
if you would perfer using that. I have never been good about tracking my seizures until a few months ago when I found this site

[Meetz1064]

does have a good site to use, at www.seizuretracker.com. Check it out and see what you think of it, too. I haven't checked it out in a while, but this is the information that I generally put into an E journal. Here goes.

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

IMPORTANT NOTE: Some people do include the movement of their bowels (sorry if TMI) because they do find that it is an issue/possible trigger for their seizures, so you may want to include this also.

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).

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.

Feel free to ask all the questions that you want.......we'll answer to the best of our abilities, and if we don't know the answer, point you in the right direction.

Take care, and good luck!

Meetz

[RobinN]

I just use a blank calendar.

You might consider rather than "getting use to a drug", that the medication is actually causeing more seizures of a different variety. I don't find that worth getting use to. An analogy (as I am learning to raise koi), fish might get use to water that is not quite clean enough, and a bit toxic to their system. But over time they will be developing skin ulcers, and swim crooked, etc. It might not be noticable at first but the quality of life will not be the best.

Yours began at age 40, so I would keep in consideration that for a good amount of your life you were seizure free. What has been slowly changing for you over time. Truly look at nutrition as a factor. I personally think we have an epidemic going on here that is largely due to products we choose to call food yet are highly toxic to our bodies.

That is my opinion and I am not a medical doctor. However my daughters seizures have been eliminated for the past four months, med free after eliminating certain items from her daily diet. On meds they were occuring at a rate of 6 per month. (trileptal was one of the meds)

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