All right
then, let me ask you this. Have you changed anything in particular in the last few months that may have aggravated things?? In other words, has your sleep pattern changed, your diet changed drastically, or anything like that???
I personally think it's time you need to start keeping a journal--by doing that you can possibly find what may be triggering the myoclonic events that are evidently going on. I'm going to post a list of what I tell people to put in the E journals so that they have a good idea of what to look for. You can then take this with you to the doctor, and it can help them figure out any triggers/patterns to the seizures.
Here it is. Please don't be overwhelmed. Feel free to take things out if you want. Also, some people do track their bowels, too, as they know that is one of their triggers.......
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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.
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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.
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I hope this helps you out some.
Holler if you need anything.
Oh, and before I forget. I was on Dilantin, too. For 35 years. It helped me quite a bit.......but I still had breakthroughs on it, and had to have another AED all the time.