Looking for Answers for my Non-Epileptic Seizures

By jillian1981 Thursday, March 08, 2012

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Last year I was diagnosed with non-epileptic seizures. We don't know the exact cause, but the doctors think that they are stress and anxiety realated. The first cuople of weeks I was having 2-3 a day, then 2 a week, now I am at 1 a month. I am on Trazodone, and Topamax. I also have Migrain headaches, and a PFO. I am seeing a therapist for the anxiety for axiety and depression. I have seen Neurologist and they have no answers for me. I am getting frustrated!! The seizures affect my job. The side effects of the meds are really getting to me, especially since I am losing my hair. I am starting to feel like a freak of nature. Is there anyone out there that has gone through this. Or knows anything about this condition? I can't seem to get very far. I don't have insurance, and have to go through a free clinic for all my health care needs, and some times I feel like I'm being over looked or not heard.

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Comments (8) | Add comment

Eileen Bailey, Health Guide

3/ 8/12 10:27am

Jillian

Thanks for posting!

Unfortunately, I don't have any experience with non-epileptic seizures and don't really have any information for you.

You say these seizures are stress and anxiety related and you are currently getting treatment for this. How is the treatment going?

Do you keep a journal about the seizures? You may want to write down each time you get a seizure and what is going on, where you are, what you have recently done. This might help you find some of the triggers for the seizures.

Eileen

jillian1981

3/ 8/12 5:28pm

I have been seeing a therapist once a month, and that does seem to help some, but I can't stop the seizures from happening. Usually they happen to me when something emotional is going on, which I should add I am also being treated for depression, and a former domesic violence victim (8yrs). Sometimes I feel that my body took so much abuse for so long that it no longer knows how to react. I have been out of that relationship for 5yrs now. But my body and my brain haven't fully recovered I believe. I was admitted to UK Chandler Hospital, in Lexington,KY for a while and the team of neurologist there were unable to find anything wrong with my brain activity...But I know somthing is not right. I have to find a doctor that will listen to me, and seems to really care, and not treat me like a number, or a good deed. omething is wrong with me and I need help!!

cking

3/ 8/12 11:29am

Hi Jillian:

Reading your post was an education for me. I never thougth about "non-epileptic seizures" but I googled them after reading your post. It must be scary to experience several per day. I just wanted to make certain you are seeing a certified neurologist since seizures are nothing to take lightly?

Also wanted to share that I have had non-epileptic seizures, but they were acutely related to donating blood. My body can't deal with blood donation, because I pass out on and off for a day afterwards, have seizures and end up at the ER to get IVs. I have been told by Red Cross to never donate again.

I also have been treated for muscular paroxysmal activity (but not really seizures) including blepharospasm (non-stop eyelid twitching) and other continual muscle spasms of the lips which have lasted as long as 11 months. Each instance has been related to viral illnesses that preceeded the onset. It appears that a virus invades my nerve endings resulting in spasms.

One of my preventatives for migraines is the antiseizure drug depakote. I was not able to take Topamax due to drug allergy, though it has helped so many people (read your other post about Topamax). I hope you are seeing a really top notch neurologist who is aware of ALL of your symptoms and conditions, to see if there is any link or underlying cause. I will keep you in prayer and hope that your condition improves.

Clemmie

krista

7/28/12 2:47am

omg! i am having the same problems with seizures and anxiety! my doctors are also starting to look at me like i am crazy. i cannot deal with this anymore. not only is my anxiety extremly bad, but i also go through episodes of throwing up for hours and sometimes days on end! and get migraines at least 4 or more times a week and the random seizures without a disorder scares me so bad. ive never had seizures until the past year and i am 26! so i can relate and my entire life is effected. everyday i am sick. so i totally relate. and if anyone can help me i will gladly hear your advice bc ive tried everything and nothing is helping me.

angie

7/29/12 10:29am

My daughter has those. The technical term is Pseudo-seizure same as "fake seizure". DOESN'T make it any less real...... Trust me. Heres an idea that is a last resort but unfortunately may be imperative for you to get the care you need. If you have a university hospital near you, ours is 2 hours away, but worth the drive... They are teaching hospitals as well as they think outside the box... Local hospitals are not trained to do that, they are for the emergent here n now type stuff. Before my daughter recieved her disability for Aspergers,etc., she had no insurance. I googled the closest university hospital and called their neuro clinic. They told me when she was in an episode to drive her down and go to the ER. They have specialist on staff 24/7, and they will see you. They love challenging cases. Kinda like the show House....They also have funds for uninsured and low income patients. Ask their discharge person or buisness rep.

sounds like you got alot goin on and need help. I can let you know it will be a slow process and you need to advocate for yourself. I posted on Advocating for RA on the healthcentral section for RA, I think its also on the FB site too. Could b helpful... http://www.healthcentral.com/rheumatoid-arthritis/c/194064/154222/ra.Hope this is the right link. Let me know what happens and if I can help with anything. Sorry, I didn't have anymore answers for you. God Bless

angie

7/29/12 10:39am

Sorry, I missed the UK Hospital visit. There are 3 near us.UNC Chapel Hill, Wake Forest Baptist, and of course Duke University hospitals. Each one is ranked for its highest specialty on the internet. Wake Forest is the best neuro of the 3. So look at another one. Take your records with you just in case, Most of the time they wanna do their own though. I don't know much about Kentucky's hospitals so I cant help there. Sorry. Oh and check with your local medical society for your county. Alotta times they have programs for uninsured for certain issues. Ours is called Project Access. Yes, free clinics are a pain, had my share of those. Keep me posted.

jillian1981

7/29/12 8:12pm

I will definetly keep you posted. I was fortunate to recently get Medicaid in KY. I have a doctors appointment with a doctor in October. It is the soonest this doctor could get me in. But I think it will be worth the wait. I am finally out of the free clinic system, and will be able to see the right doctors for a change. So I am going to hang in there and have faith, even though my condition, and my health seems to be getting worse. Please keep me in your prayers as I will you and your family.

angie

8/ 1/12 8:27am

Good!!!!! yay!!!! Yes, keep us posted. God Bless you and I'll be praying for you. Keep calling the doctors office weekly and see if they have any cancellations. Even if they tell you they put you n the cancellation list. Sometimes we get overlooked, take care.

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