Hi...new here and newly diagnosed with epilepsy (about 8 months ago...)

[nikki85]

To start off with I will just copy my profile info and paste it here...

I had my first epileptic seizure (tonic clonic) at work in December 2008. I was referred to a neuro who thought it may have been stress or lack or sleep related, until 6 days later I had another seizure, this time at home in the bathroom when I turned on the shower. My 4 year old daughted found me in the bathroom on the floor - I has smacked my head on the side of the bath tub. I was then put on 600mg Valpro per day. One week later I had another seizure, this time in the kitchen when I was running a glass of water to take the medication! That time I flung backwards and hit my head on the oven door, shattered the glass and in the process cut all across my shoulders and back and got glass in my eyes and cut up all under my eyelids. My meds were then increased to 800mg per day. (400 in the morning, the same in the evening). I got a licence ban for 3 months but my employer packed me on my way for forced sick leave for 7 weeks which helped a lot! I returned to work in late Jan 09 with a lot of help from family, friends and workmates. I started driving again with a lot of apprehension but eventually started to push my fear to the back of my mind. In April 09 I had another seizure in my sleep - I was staying at a friends place and she saw it. I had been sick and couldn't remember if I had taken my meds the night before. I ended up in hospital with a suspected fractured spine, but it turned out to just be severe muscle damage. Again, I went for a few months with nothing until last Friday morning when I came to work (running a little bit late) and one of the girls asked me what had happened to my head. I put my hand up and felt a big egg on my forehead and suddenly became very confused and couldn't remember how I got to work. The worst bit was the overwhelming fear that engulfed me when I could not for the life of me remember dropping my daughter off at creche that morning. I am going back to see my neuro next week but I am back in that emotional frame of mind I was in 8 months ago when it all first started happening

I have changed my sleeping habits, diet, exercise, and a lot of aspects of my life since this started happening...but I find I'm always run down and always cranky! I don't know anyone with epilepsy and would love to have that 'support' network of people who know what it is like to live through it

 

[RobinN]

Welcome nikki
I can tell you are at the end of your rope. You have found yourself a lifeline here at CWE. We all know what it is like, whether or not we have experienced a seizure or care for someone that has them.
My daughter began having seizures at 14. She is now 17 and we have controlled them recently by making nutritional changes.

Can you tell me what you have done to change your diet?

 

[darcness]

First off, let me say welcome to CWE. You certainly came to the right place for that support you're looking for. This place is amazing and there is tons of knowledge here to go around too.

After reading your story I had to say "wow" outloud. Multiple times. I can't even imagine how scary that must have been to get to work and then realize you have no idea how you got there. Amazing to say the least. I'm so glad you made it there and you are and your daughter are ok. I simply can't even begin to fathom that.

My wife has epilepsy, but I came here because I had a nervous break down after seeing her have her third t-c about 4 months ago. It was certainly a shock to me, even though I thought I was mentally prepared. Apparently that wasn't the case.

Your story sounds much like my wifes. 3 seizures (all t-c's) in about a year and 3 months. The first 2 were seperated by a year and the first one we didn't even know was a seizure until her mom and sister actually witnessed the second one. She wasn't on medication or seeing a nuero for any of the first 3 seizures, but after the third one we promptly got married and added to my insurance and into the neuros.

They started her on 500mg of Depakote and she had a partial seizure at WalMart after being on it for 2 weeks. That's the first time she had a seizure of that type, as all her other 3 were t-c's. They quickly upped her to 1000mg of Depakote (AM/PM 500/500) and then her side effects got pretty bad. I thought for a while she was still having seizure activity, but as time passed she got much better and the strange "happenings" stopped. These would be anything from spouting off some nonsense during a conversation to nodding off all day. Very strange indeed.

She's now been seizure free for 4 months on the Depakote and she is doing much better overall. Her mental health has improved along with the seizures. I'm not sure if it's from the control, or the fact that she switched up anti-depressents right around the same time the Depakote was upped. Either way, she is doing well as am I.

I figured I'd just share my story with you because your story really reminded me of my wife. I hope you can find control and get well both physically and mentally again. I know it can be such a scary thing to deal with, but being here at CWE will help.

The best thing I can say is educate yourself and learn your own body and seizure activity. Learn all you can about E and what could be your possible triggers or lower your threshold. Keep a seizure log where you record everything so you can determine if it's foods, sleep, other meds, anything that could be causing you to lower your threshold. I'm sure Meetz will give you his list, which is a great tool for logging all this stuff.

In the mean time, hang out, rant and rave, share your story, and just chill. We're all here together to get through this together.

Also if you'd like, I have a link to a great forum specifically for mental health and I can send you a link to that. PM me if you want the link as I can't post links here.

Almost forgot: Don't get discouraged if your neuro wants to try something new. There's many different type of AED's meds and many people have to try different ones or even a combination of them in order to get full control. Don't feel like a failure or give up hope if the first steps don't work. There's always more things to try. You can also learn a lot here about alternative methods to combine with or eliminate meds all together if that's something your comfortable with doing.

 

[Meetz1064]

Lolololol

I see darcness has already introduced me. Hehehe. Thanks, darlin'!

Hi, hello and how do you do? It's nice to meet you Nikki. It seems that you have been through quite a bit. I'm sooooo sorry for that.

Feel free to check out the different nooks and crannies here at CWE. The Library and Kitchen are full of information, and the Padded Room is great for venting when you really need to. RobinN, whom you've already met, is chock full of nutrition information, and knows quite a bit about neurofeedback, too.

Darcness is right, though. There are some things to keep track of to help you find your triggers, and I am one of those people that have that list. Sooo, that said, here's the list:

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

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.

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.

NOTE: Some people do also find that they need to track the movement of their bowels, too.......

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

Take care!

Meetz
:rock:

 

[nikki85]

I gradually cut out almost all caffeine, eat breakfast every single day without fail (this is mainly so my medication doesn't churn up my insides though!) and generally eat a balanced diet with lots of fresh fruit and vegetables. I try to fit in at least half an hour of exercise daily (which is hard when you're a single mum and work 50+hours a week!), and instead of the 5-6 hours sleep a night I used to squeeze in I'm on a minimum of 8 now! A few people have suggested acupuncture and chinese medicine so that's perhaps the next path I'm heading down...

 

[Meetz1064]

You've already

started to make some good choices there, Nikki. Keep it up. :clap::clap: And for a single mom, I'm SURE it's not easy. I remember being a married mom of 3, and having a hard time, too. Still am for that matter.

Something to keep in mind though, is what I brought up about the diets. You may very well be allergic to something else you're eating. Are you still eating wheat or dairy? You could be allergic to the gluten........or you may be allergic to MSG, aspartame or something along that line. And yes, it can honestly be what sets off a seizure. As odd as that sounds, it's really true.

Keep up the good work, Nikki. And no matter what, we'll be here for you. :bigsmile:

 

[epileric]

A few people have suggested acupuncture and chinese medicine so that's perhaps the next path I'm heading down...

I"m a big fan of acupuncture, I just got my treatment 2 days ago & haven't had any seizures since -pretty good considering I was getting between 1-4 a day for the week before that. The results aren't always that great though but I try to maintain regular treatments.

There are also other things that might help. I know members here have had good results using neurofeedback. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Let us know what if you try anything new & keep us updated on how (or if) it helps.

Also welcome to the site. It's always good to know that there are so many others out there in a similar situation.

 

[KellyD]

Hi Nikki, I'm glad you found us, this site has been great for me with support and information. Just the thought of the fear and panic you must have felt when you couldn't remember dropping your daughter off just overwhelms me. It sounds like you have made some positive changes though so hopefully things will get better for you.