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smilemily

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Hello,
I have been diagnosed with a seizure disorder for a little over two years. I have generalized tonic clonic, complex partial, simple partial, and absence. Unfortunately, most of the EEGs have come back negative. My neurologist thinks I have psychogenic non-epileptic seizures. I am confused and hurt in this new diagnosis. I had a hard time adjusting to seizures in general. I am still in school and it is very hard to get good marks and lead even a semblance of normal life. Any help or advice would be welcome.

Thanks in advance!
 

AlohaBird

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Oh, goodness. You remind me of me 30 years ago. Mine started when I was a senior in college. A perfect storm of sleep deprivation, stress, living on junk food, caffeine, partying. It all caught up with me.
Having E does not mean your life is over. But it does mean that you are going to have to live your life differently.
1)Make yourself get enough sleep (8-9 hours) It's not optional.
2)Cut out any and all booze, caffeine, sugar. Fruit is your dessert.
3)Find some way to deal with the stress. Whatever works for you. Yoga, meditation, deep breathing exercises
4)Get outside (your vitamin D treatment) daily
5)You don't have to do heavy workouts but do something every day. Even if it's just going for a walk. Get your blood circulating and oxygenated.
6)I know pizza and such are student cuisine staples but not any more. Try for single ingredient foods like meat, fish, veggies, etc.
7)Consider the recommendations of Dr John Symes (website dogtorj.com). He advocates cutting out all grains, corn, soy, and cow milk products.
And before Epileric jumps in to "dog on" Dr. Symes.... Yes he is a veterinary doctor. Doesn't mean he isn't onto something.

I so wish I had known what I know now at your age. I wish a board like this had been available. I wish you the best and let me know if I can help.
 

masterjen

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Hi, and welcome to CWE smilemily!
First of all, besides the negative EEG what makes your doctors think the seizures are psychogenic? What type of EEGs have you had done? For instance, have you had just the standard 30 min EEG or have you had a sleep deprived EEG, or had video EEG done in a hospital setting? Have you tried anti-seizure medications? Are you on any right now? As you may already know, a negative EEG alone does not imply the seizures are psychogenic; for example, the seizure focus could be too deep to be picked up by surface electrodes.

As for coping with life and the seizures, take control of the situation as best you can. As Alohabird mentioned, make sure to get sufficient sleep and watch your intake of potential seizure triggering foods/chemicals (like caffeine, aspartame, alcohol, diet drugs, recreational drugs), reduce stress as much as you can (for example talk to your teachers about longer times to do assignments, reduce your course load even if it means having to go to school for an extra semester or two), and ensure a healthy diet and regular exercise.
You don't say how old you are, but your parents can be great advocates for you even in the early college years when the student is in their late teens or early 20s. Unlike when I was in university in the early 90s, it is more accepted now for parents to become involved when their child is having a tough time. Don't be embarrassed to have them join you when you meet with your instructors. Also, take advantage of disability support services, which most colleges have. They can also advocate for you.
 

Nakamova

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Hi smilemily!

Your neuro should know full well that a positive EEG can help rule in epilepsy, but a negative one cannot rule it out. Your neuro should be able to make a diagnosis based on your clinical symptoms alone. If he doesn't feel comfortable doing so, you should get him to explain why -- and consider switching to a neurologist who has more experience with epilepsy symptoms.
 

smilemily

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1. Thank you to AlohaBird for your recommendations and for saying what I needed to hear.
2. To Masterjen: I have had a two three day VEEGs, one of which showed spikes and abnormal activity but I never had a seizure while hooked up. I am on Lamictal now, I was recently weaned off of both Vimpat and Topamax. I have the medical proxy form so my parents have the decisions for me during a seizure.
3. Thank you Nakamova! I am supposed to go into a epilepsy specialty center and am scared if everyone already thinks these are psychogenic events.

Thank you all!!!
 

Belinda5000

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smilemily,

I've had epilepsy over 50 years and in all my years had plenty of sleep deprived eeg's.
Have you ever had a sleep deprived EEG? stress can definitely bring on seizures.There are a lot of things that can bring on seizures I. I also have,tonic clonic,absence,simplepartial, complex partial seizures.I'm refractory and my seizures are changing all the time.You can have epilepsy seizures and also have psudo seizures. I wouldn't drive while having seizures.I've never driven.
 
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