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Posts: 25
Joined: Jul 17, 2011

Conversion disorder with pseudoseizures (PNES)

Posted by @ditim, Aug 27, 2011

Well I hope I can be of help. In 2009 I had a my first ever seizure where I went into convulsions and the whole bit. It was a good thing my husband was driving cause we’re from Illinois and was almost to Georgia. I blacked out and ended up in a Tennessee hosptial overnight. Since that experience more things have developed. Since Sept. of last year my body started involuntary jerking and to this day has never completely stopped…some days worse than others. Since Jan. of this year I started having speech problems…slurring…thought I had a stroke. Like the jerking I continue to slur…more on than off. I got severe headaches after my episode in 2009 and continue to have them off and on…I think they are associated with the seizures…which are non epileptic. I’ve had two EEG’S and four MRI’S and a couple of scans…and they can’t find any medical reason for my physical symptoms. As a result they have diagnosed me with conversion disorder with pseudoseizures. By the way…it’s NOT in our heads…we have no control over how our body reacts. You see, I’ve been thru alot my whole life and as a result of this I’m told my body acts in such ways because of the stress, trauma, etc. I’ve always been strong throughout my whole life but I can’t handle stress and anxiety as I once did. I worked for Kroger for 35 years and haven’t been able to return. I applied for disability and was denied…but recently appealed and so it’s a working progress. I no longer drive…it’s just not safe…and because of my seizures. I sometimes feel “disconnected” as well. I’ll be 59 and my husband is 52 and working…thank goodness. I spend a whole lot of time at home…that’s just the way it is. I have a strong faith and that’s what keeps me going. I’ve always been happy go lucky and upbeat…this disorder has made a difference. I used to LOVE being around people…but it’s just not like it used to be. I’m more sensitive to noise at times and I started YELLING OUT couple of months ago…so I’m going back to Washington University next week to see my neurologist. I hope I’ve given you some answers and I’ll be glad to communicate more. I understand this is kinda rare of a disorder and it really hard to find someone who specializes in it as well. I take Lexapro, Amitryptline for anxiety and depression and Lunesta so I can sleep at night. God bless…Diane @guesslu

Liked by es6903



Posts: 25
Joined: Jul 17, 2011
Posted by @ditim, Nov 14, 2011

I have conversion disorder with psedoseizures. I have the jerking from the seizures on a daily basis. I passed out once with my first one in ’09. The jerking I’ve had since Sept. ’10. Now I have speech slur almost daily and I started yelling out when my body tries to rest. I’ve had a lot of trauma and stress in my life and my Neurologist [after much testing] said as a result I’ve been diagnosed with conversion disorder and the pseudoseizures are a symptom. I’m 59 and no longer drive. I’ve applied for disability, denied, and have appealed. I stay positive and thank the Lord for what I am able to do. @outback101


Posts: 1
Joined: Sep 23, 2015
Posted by @coleleeo, Sep 22, 2015

I feel for you. I was in an auto accident and I have pseudo seizures, TBI I have also become withdrawn. People don’t understand. I don’t understand. But the insurance company’s just call you horrible names. They victimize the victim to add even more demeaning pain. I try very hard to hold on to hope. It has been 8 years. I have lost my teeth falling face first. I feel for everyone. I pray for anyone hurt in an auto accident. They will shred you with your just crazy. Bless you


Posts: 7
Joined: Dec 09, 2015
Posted by @es6903, Dec 16, 2015

Thank you for sharing. It’s sad and yet a relief to hear I’m not the only one. I don’t understand why there are no clear cut answers or enough resources or disability for us. These NES or psuedo seisures are real! My prayers to all.

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