New to CWE and happy to be here!!

[Tink]

I have had non epileptic seizures since 2010. I do all the things you see a colonic tonic or grand mal epileptic do during an attack. The only thing different is I can hear everything that is going on and if my eyes stay open and focused I can see. I have stumped all the doctors and all of my EEG's have come back normal. I have tried all kinds of seizure medications, to only find out that they increase my seizure activity. I am gluten and wheat free which has not increased or decreased my seizure activity. But, since I have been off it for three years now it is a real killer to my body if I have any of it. The only medication my neurologist and I have found to help with the seizures is a combination of paxil, buspurine, and nortriptlyn. Which when mentioned everyone quickly assumes are stress induced. Unfortunately I have seizures with stress and without stress and when placed in the hospital three different times with the head probes glued to my scalp, sleep deprived, and stressed induced I show no epileptic brain activity. My attacks can start with an aura, slurring of my speech, or I lose muscle control of my legs or get stuck (as I call it ) I can't get my body to move. I then will typically begin to contort my body, roll my eyes back, cross my eyes, shack uncontrollably, grind my teeth, grunt and so on. Pretty embarrassing and frustrating. I have spent the last three years trying to maintain a normal life style and reminding myself that I am not some crazy women. I have an amazing husband and two wonderful boys who have been nothing but supportive through all of this. But, it is still lonely being the weird one. That being said I just came across this site yesterday through a parent of one of my students (I teach 2nd grade) who asked if I had considered catamenial epilepsy. I spent last night and this morning (before and after doing Zumba, my addiction) reading posts and decided to become a member in hopes to find someone out their having similar symptoms as me. Wow, guess I am a little wordy, hope I haven't bored any of you. I look forward to hearing from someone out their that may have non epileptic seizures like mine. God Bless
Cheers,
Tink

 

[Nakamova]

Hi Tink, welcome to CWE!

Do you keep a seizure diary? that can be a good first step to look for triggers, and can be helpful regardless of whether your seizures are epileptic or non-epileptic in origin. If your symptoms are triggered by spikes in estrogen (as with catamenial epilepsy), they would appear at fairly regular times during the month. There are several different patterns of catamenial epilepsy. You can read more about catamenial epilepsy here http://professionals.epilepsy.com/page/catamenial_patterns.html and here http://professionals.epilepsy.com/page/catamenial_treatment.html

You might also look into approaches such as Cognitive Behavioural Training -- often suggested for psychogenic seizures -- or neurofeedback treatment. More info about neurofeedback can be found here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ Those treatments might potentially help reduce the seizures that aren't completely controlled by your meds, and might allow you to reduce the doses.

It can be a rocky road to diagnosis. Even with a concrete diagnosis, it can be a long journey to find a treatment that works. I hope that CWE can help shorten those journeys for you, and provide support and empathy along the way.

Best,
Nakamova

 

[Tink]

Thank you Nakamova,
I have not done a seizure diary but am going to start one today. As far as catamenial epilepsy I am just starting to research it. I have already had a hysterectomy and have one ovary left but it is worth looking into. Because of where we live their isn't a Cognitive Behavioral or neurofeedback treatment but I have been going to a counselor that understands the Cognitive Behavioral therapy and we have been working on it for three years now. Pretty funny that Harborview the lead epilepsy center in our area didn't even know what to do for me. They felt awful about it and wished me the best of luck. I love my neurologist because he is open for anything if it will work for me. I am just so happy to find this site and am excited to meet other people who live with this as well. Thank you for taking the time to reach out to me. I look forward to more chats
cheers,
Tink