Many thanks

[mtngirldcm]

This is my first post, but I have been to the site many times. I am new to epilepsy - -truth be told-I must question if this term truly applies to me. I am 39 years old. Before this, VERY healthy-martial arts, running, horsebackriding, hiking, kickboxing---you get it. Never had anything to make me EVER think something could be going in on my brain-now or ever.

Have suffered severe insomnia for more years than I can remember. Was made worse by waking with children's nursing schedules (wait, WHAT schedule?), and what the docs thought was a generalized anxiety or depressive disorder. Did the prozac/xanax thing. Maybe it helped a little-I took more control of my diet and supplements, practiced yoga daily , meditated regularly and throughout the day to help keep stress at bay.Got away from the drugs.

Fast forward a couple years. My family and I moved from beautiful NY- (Appalachian Trail was 5 mins from my house-hiked a few times a week)- to Raleigh-Durham area of NC. My Dad and Stepmom were here and making trips to NY for each of the kids milestones-Tae Kwon Do testing, soccer games, pre-school graduation-and ALL holidays!! It was time for a move-and gladly we did. Unknowingly, my Stepmom had pancreatic cancer and died less than a year into our move. My kids (3 of them) all got to be with the best Grandma ever. She had none of her own-so she cherished my kids like the delicious creatures they are. I miss her painfully-especially now.

Doc put me on Efexor (AAAAAHHHHH) thinking th insomnia was anxiety or depression driven. HORRIBLE reaction to it.HOR_RI_BLE! SOOOOO-------he DOUBLES the dose. OMG-thought I would die. But, alas. You cannot stop taking these drugs.No-No. So after a very, very, very bad week, I had really become a shut-in . Where could I go like that? I had not slept-honest -for 5 days. A half hour here, 15minutes there. The brain zaps I thought were killing me. I thought I was crazy. Really, truly losing my mind. I was desperate. I finally had to tell my 15 year old daughter what was going on with me-Mommy really wasn't a loony-the meds were destroying me. On the 5th day of as many hours of sleep that week-I had my first tonic/clonic. In front of the little children(boys 7 and 8 yrs). Cracked head open on kitchen counter so had to go to ER by ambulance. Could not remember lots. Staples in head, but pics and eeg's and ct's looked ok-so they sent me on my way. Follow up with neurologist-all visits ok.This was 12/29/06-GREAT Christmas vacation for the kids!

All goes along just ducky-3/10/08-sitting at the computer-only meds I am taking are for sleep (mostly meletonin) and metoprolol 25 mg once/day for pvc's. Very limited caffeine, even less alcohol ( beer or two a couple days a week---maybe).And for the really bad sleep nights ( or non-sleep nights)-over the counter diphenhydramine. 8:30 am on 3/10-sitting at the computer in the kitchen, husband sees me take a swan dive up and backwards under all the kitchen chairs and stuff. Tonic/clonic lasts 4-5 mins-EMT's here again -as I like to catch my falls with my skull. Was ok-just takes MUCH longer to recall my name, age, address, month, etc.....That was really, really tough this time.

neurologist says now we must go on meds. The probability of more seizures without meds is not probability at all. It will happen. ER doc put me on carbamazapine (Tegretol). neurologist put me on Lamictal--almost weaned off carbamazapine. By-product of Lamictal is I feel, mentally and emotionally, more balanced than I have in long, long time. Think I have been bi-polar and never had the right people ask the right questions. Anyway-month and a half and no seizures. EEG ok. Not driving sucks-but my 15 year old daughter has her driving permit so she thinks it's great to be my designated driver!
My neurologist is great-but should I find a doc who specializes in seizures? Heck, I live less than an hour away from some of the best teaching hospitals in the country. The sudden onset and difficulty finding a common trigger ( I mean-only two seizures that i am aware of!).

I know my seizure activity pales in comparison to so many who struggle and do such great things and really live WITH their epilepsy. I am so humbled. What I find so challenging about my situation is the duration between seizure activity and lack of triggers. I am so afraid of becoming complacent and putting myself or others, in a dangerous situation.

Otherwise-I would not give this back for all the money in the world.I have opened my eyes to things that life was getting in the way of. I laugh-really laugh, so much more freely now. I delight in my children. I have a beautiful garden-lots of birds and butterflies visit daily.Most of the time, I don't sweat the small stuff.We can't control the things we can't control-so why worry. Be an active participant in your own life and in the lives of others. Epilepsy (????) has given me back to me --- so now it's up to me to figure out what to do with that.

[Bernard]

Hi mtngirldcm, "welcome" to the forum.

I'm glad you decided to say hello.

Did you ever have a sleep study done to test for sleep apnea? Sounds like lake of quality sleep is definitely a possibility for you. We have a thread here with tips for insomnia.

My neuro is great-but should I find a doc who specializes in seizures?

That's really a question only you can answer. Most people with epilepsy never get a definitive answer as to why they have it. Best you can do IMO, is get proactive, and it sounds like you are already doing that for the most part (do you keep a diary/journal?).

Otherwise-I would not give this back for all the money in the world.I have opened my eyes to things that life was getting in the way of. ...

Awesome attitude!

[RobinN]

Hi mtngirldcm - Welcome to CWE

My daughter is the one having seizures. I think many of hers were made worse by the medication. In the beginning I think it was the nutrition, metabolic imbalances, hormones. But once on the meds it caused a lot of very odd situations and seizures. I do believe that the brain then learns to release its energy/stress in that way every time.

At that point you have to train it to behave in a more balanced way. But how can you when you are on drugs that contradict what you are attempting to do. So she became med free with her doctors consent, upped her vitamins and minerals that support brain function, cleaned up her diet with very few infractions, and started neurofeedback.

That was the very best choice EVER. It is facinating to be the observer and watch the life comeback to a loved one. The aura and energy of the "self" is back. There is calmness, and focus that hasn't been there for a long time. School grades are rising, notetaking is better, ability to handle emotional upsets has improved greatly.

I agree, it has opened my eyes to things I had no idea about. I can't say I don't wish things were different for her. We are in the process of simplifying our lives quite a bit and this is one reason we are taking this step.

I am very glad that you decided to join us.

[skillefer]

Hi mtngirldcm! I'm glad to see that epilepsy benifitted you in some way. Kind of weird how things happen isn't it? I always say there's a reason we go through these things. We may not understand it at the time we're going through it, but afterwards there's usually an "Aha" moment where we have a moment of clarity and insight. I'm just glad that your meds are working for you, and that you're life seems to be picking up. Welcome to CWE. Feel free to ask any questions, and if you ever feel the need to vent, feel free to check out the padded room.

As for your question on whether or not to get a specialist in epilepsy, I'd say that that is up to you. It seems like your neurologist is on the ball. As for figuring out triggers, the only way to really do that is to keep a journal. Record how much sleep you get every night, what you eat and drink and when. Also, write down what you were doing just prior to each seizure. Some people are photosensitive. For example, I have seizures or am more likely to, when I'm around strobe lights. Other people are so photosensitive that video games, certain TV shows, or even computer effects can trigger them. IN my opinion, and it's just that, an opinion. You're first seizure might have been triggered by sleep deprivation. Anyway, welcome to the group.

[speber]

You know?...I've been seeing A LOT (unfortunately) of people starting epilepsy later in life!
...

Maybe the 'triggers' lie in there somewhere? I mean, really, it's pretty amazing how many are reporting having their first attacks your age (or about).

I don't know if it's underlying stress of raising kids and keeping a family above water these days, or some relatively silent physical change (not 'the change of life' of course) that brings this on...but it is certainly happening!

Your attitude IS great...and there ARE things you can do. You've come to a good place for support and information!

If you haven't already, check out Epilepsy 101 - Part FAQ, Part tips and advice and Alternative Epilepsy Treatments ...they're a good start!

Oh yeah!...de-stress with some nice soothing music!


Peace
Speber