Many Seizures Were Non-Epileptic Seizures Caused By Stress

Are you familiar with dysautonomia (autonomic dysfunction)? Many folks with dysautnomia have these non-epileptic seizures. I have genetic disorder & have dysautonomia. So does my daughter ... but she does have epilepsy as well ... primarily from her stroke.

I believe that the autonomic dysfunction she has is exacerbated by seizures ... I also believe that the seizures exacerbate the autonomic dysfunction.

We are working on trying to improve the autonomic function.

I agree with you about trying to find a doc that sp in a certain area. For epilepsy we of course see an epileptologist. For the dysautonomia, we will find a doc that sp in this.

Hi Elizabeth --
How does your daughter feel about being off Keppra? Has she noticed an improvement in her thinking and focus? Is the plan to keep her off meds from now on?

The Cleveland Clinic is supposed to be excellent; did you find that to be the case? I know that they will do remote consults. You can send them your medical records, and they'll give you a second opinion. It costs $565 and insurance won't cover it, but it could be a really good investment in Sarah's health. Did you see a particular epileptologist there that you liked?

For anyone else who's interested, here's the info on the Cleveland Clinic second opinions.

We see a huge improvement in her. She is speaking much mor4 clearly and having fewer problems with syntax. Her mood is also very different. Aparently psychologists don't like keppra because of the many side effects, also. She is still on Topamax and Zonegram. We have always been happy with the Cleveland Clinic. They are very thorough and more than happy to work in concert with your doctor. You should check into the possibility tht your doctor consult with them. It may be a way for your insurance to cover the cost. Some doctors are reluctant to admit they don't knw something. I find that to be a personal problem and my daughter's quality of life is more important than a doctor's ego. This condition is not a spectator event. You have to be proactive. You have a duty and a right to educate yourself so you will know the questions to ask. Don't be afraid to ask! If we had not gone to Cleveland we may never have known that the recent clusters of seiures she was having were not brain related but stress related or how to spot them. They also started her on a new med to control them which seems to be working well. I often read entries here that I so relate to they make me cry but some do not. Epilepsy is an individual thing. Something that works for one person may not work for another which is why is it so important to have the right doctor that is a good fit for you and your family. It is also a good idea to keep a detailed journal of any and all activity related.Sometimes things you may not see as significant may be very importnt information you doctor needs to get a clearer picture of exactly what is going on.

What was the stress seizures like? Were they similar to her other seizures?

Hi Elizabeth --
That's good advice about having our doctor consult with the CC. I don't think he'd really mind, and, even if he does, too bad. So it's back to the phone with the insurance company...
I'm really glad to hear that she's clearer. I've only heard negative things about Keppra, so I'm not surprised that she's feeling better.
What med did they start her on for the stress seizures?

It's called Celexa. It is an anti-anxiety med.

Thanks for all this info about Keppra, a drug that my son is still on. He has just started to have seizure control with the keto diet and we have to keep him on the meds for six months and then start to wean him off. Well I will push for this to happen sooner. We start to wonder why my just turned two year old son is not walking but when I read what you say about Keppra it does not surprise me at all. He is also on Clobazam. Thanks for the info about what drugs feel like from someone who can tell us the truth. Sincerely, Kim

Hi Kim,
Well, at least you know for sure what drug you want to wean him off of first!!

I haven't heard as many bad things about Clobazam as I have about Keppra. Seriously, if there's a parent on here who's had a good experience with that drug, I'd like to hear from him or her.

I completely agree about how important it is to know what these drugs feel like from the 'inside', not just what we can observe.

Elizabeth, your daughter's story made me wonder about something. I remember that Arlene said the last straw for her with the meds was when the drs. wanted to put Adam on anti-depressants. And now your daughter needs an anti-anxiety med for non-epileptic seizures.

Here's what I'm wondering. Do you suppose that anti-seizure drugs somehow, and maybe especially when used in certain combination, screw up ALL the neurotransmitters? I'm no expert in brain chemistry, but I can't help but wonder...It probably doesn't help to wonder this, it's just the way my brain works.

Her non-epi seizures sound very painful. A whole body charley-horse. I'm glad the Celexa is helping to control them.

Hi Annie-

First let me clearify, my daughter is 24 years old, a full time college student majoring in anthropology and aiming for a scholorship in French. When Adam was having the bulk of his problems, he was a young child. I would certainly think long and hard about putting anyone under the age of 21 on an anti-depressant as they have been known to cause phsychotic episodes.

This is also one of the reasons why the ketogenic diet has not been successful for her. It shows much more promise in younger chidren than adults. Some seizure meds have been taken off the market because they casued serious neurological problems. That is why it is very important to be very aware of any personality changes in anyone taking any of these meds and report them immediately. This includes malaize, irratability, OCD-like symptoms, lethargy and depression. This is not a one-size-fits-all thing and so very important you have a doctor you can work with and that knows his stuff! I'm sure you have heard the stories about Prozac. Some people hailed it as a wonder drug that saved their lives while others killed themselves while taking it.

The biggest problem with the field of neurology is it deals with the unknown. Doctors know very little about just what goes on in the brain and every brain is different. I'm sure it must be much more difficult dealing with a small child trying to discribe how and what they are feeling. As far as the neurotransmitters...well, anytime you change something inside your head your going to have the possibility of having some unintended effects. Fortunately, Celexa only raises the serotonin levels in the brain. It elevates your mood and helps you sleep better (which is another problem she had...sleeping).

Back in the 1920's a drug was being developed for depression. It was given to the patients at a mental hospital. That night they noticed that all the patients were sleeping soundly in their beds instead of wandering around all nightand the next day they were all in a much better mood. That drug is still around today because it works and it's not habit forming. If my doctor ever recomended my child be put on an anti-depressant it would talk to him about one of these. Unfortunatley most people don't know they exist.

Elizabeth,
It's really inspiring to me that your daughter is 24, a fulltime college student, majoring in anthropology and trying for a scholarship. You can't tell me that often enough. Maybe you could just post that every day.

I'm thrilled for her that she's off the Keppra and sleeping and feeling better. I could use a little more serotonin myself some days...

Well, here is another note that might make that light at the end of the tunnel a little brighter. A friend f my husband had the same form of epilepsy our daughter does, tonic-clonic, and became a surgeon. At one point he had to stop operating when his seizures were not under control but he is one of the top doctors at a local hospital. All epileptic children need to know that there is no limit to what they can accomplish. In the past, the ignorance of people created a stigma that held them back. Hopefully that is changing.

How inspiring! A great story to share with our kids when they are feeling a bit down about their limitations. It's good to point out that their limitations are not necessarily something that will prevent them from doing what they want to in their lives!

Sheri

That's a great story! A surgeon! Now there's a man who didn't let his seizures get in the way of his dreams.

I know we're on here to talk about our kids' epi, but I love to think about Elizabeth's daughter in college and speaking French. It makes her a whole person to me, not a young woman with epilepsy.

And I think it's important, maybe especially here, to honor the whole people that our kids are, despite their challenges. So I personally would love to hear more about the non-epi parts of our kids' lives.

I'll start. Sarah is an Irish dancer. She takes class twice a week and goes to regional competitions, called feisanna, three times a year. She's just beautiful when she dances--and has a shelf full of medals and trophies to prove it. (We were so excited when she started to dance again after her accident!)

She also sings (badly) all the time.

She wants to be an archeologist -- don't ask me why, because digging in the dirt sounds like zero fun to me. But that's her goal... to run a 'dig' somewhere and put pieces of skeletons back together.

My little goofball, Michaela, loves to play with her American Girl doll and to tell 'knock-knock' jokes. Would you like to hear a knock-knock joke? I know them ALL.

She also loves to pester her sister and watch her do her makeup and all. Her sister is better than TV to Mich. If she could just watch Emily all day long, she would. She'll do anything to get E to pay attention to her!

We also have a little dog, and Mich thinks she's an animal psychic. She'll tell me what Bubbles is thinking--and usually it's that she (Mich) should be able to do something she wants.

She's VERY excited about starting school next month, too. She wears her school backpack every day and has pack and repacked her crayons and pencils and glue and tissues about a hundred times. I'll probably have to buy her replacement school supplies before she actually starts.

He is two and just starting to 'wake up'. He has the biggest smile. He is starting to do more furniture walking and he has let go to stand a couple of times. He has started to carry around a little green car. He crawls all around the house and you can hear the car banging on the laminate floor. He has never showed any attachment to toys before this. When I pick him up, he melts in my arms and he puts his head on my shoulder. He plays with his hair when he is tired. He likes to be held and touched. Austin loves to makes sounds and have me repeat the sounds back to him. He adores other children and smiles from ear to ear when they play close to him. He loves his Keto snacks of Whipped cream and apple sauce. He has recently learned how to use a straw to drink water. He is persistent when faced with a task and he never once gave up on himself during all of his seizures. I can sure learn alot from him. He is my little miracle.

I hope that all of you read your comments about your children becasue they were beautiful. You have no idea how full of hope and love you all sound. We all get caught up in our fears of..Is this normal, Was that wrong, Should I change meds and on and on. For Sarah, Michaela and Austin those fears are not there. Read your comment again. Then the next time you look into their eyes, "see" their eyes and if they are watching you with a "How'm I do'n" look, they will see what you wrote here.

My boy is just seven. He's a wild man! He's either in motion or asleep.

He LOVES the wicked witch from the Wizard of Oz -- she's his favorite movie character. He's probably seen that film 30 times, and if he could be a flying monkey, he would.

Reading is coming slowly for him, but, like Austin, he's so persistent. I can tell how frustrating it is, but he just keeps at it. Really, I admire him for this.

He's a total goofball. I love some of babytalk things he says, so I haven't corrected them yet. I know he'll grow out of them all too soon. Mazagine for magazine, and baling scoop for bathing suit. Plus, my all time favorite is 'breakfix' for breakfast.

He still sleeps with his baby blanket, but he hides under his pillow every morning. He lost three baby teeth in one day at the end of last school year, and the tooth fairy left him a major bonus!