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ditim
@ditim

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

REPLY

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

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

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.

My daughter, age 20, started haveing what was diagnosed as pseudo seizures. She would convulse for 15 to 30 minutes on both sides of her body and was fully conscious. Her hands would claw up and her feet would sort of arch and curl in without control and she would buck. Afterward and sometimes before she would stutter.

Her Functional Neurologist believes that she is having problems in her mid brain (brain stem). These are not related to an emotional trauma. She also has migraines, dizziness and issues with poor sleep. Her sleepiness during the day became extreme and her sleep Neurologist prescribed Aderall. On the first day that she took it and every day since her stuttering, shakey hands and convulsions or pseudo seizures have completely stopped.

so happy for your daughter I stutter with the internal vibrations I have too, clonmazapam helped for a few months then stopped working my dr said adder all would make me worse seeing a new neurosurgeon in january

@ditim

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

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I have been diagnosed with Conversion Disorder as well; and am TIRED of having EPILEPSY from a STROKE on 05/04/01!!!!! I loathe PROVIDERS now, and NO LONGER CARE or wish to even have MEDICAL CARE, PERIOD! NO-ONE really UNDERSTANDS, unless THEY have been THROUGH it THEMSELVES!!!!! I also have PSEUDOSEIZURES, so what's the POINT of being a PATIENT, especially when MY FAMILY DOESN'T BELIEVE ME? I am sympathetic to your story, because I have also LIVED IT for the past 40 YEARS! I am 58 years young, will never be able to drive! I was writing a book entitled "Misunderstood and Understand and Resilient!" I fully UNDERSTAND your situation ! I also have experienced both slurred speech and jerking limbs!

@rachaelanne l am reading these post about conversion disorder and they said my was non-eplietic disorder and convulsion. But after a brain injury that was the diagnosis they gave me. Then later it turned out to be and autoimmune disease and then finally hepatic encephalopathy. So now l am educating my doctors. Then aren't aware of hepatic encephalopathy and that you can have seizures. But now l not sure if it's exactly seizures or allergic reactions to meds which can cause seizures. When they can't see seizure activity on a eeg or MRI then they will diagnose you have having conversion disorder because it is stressed induced. Which can be a bunch of nonsense. You can actually have seizures or something else that's causing the seizures. In my case it's my liver. So you have to educate yourself and go to the doctor with your information and what test you want run. I am learning every day but l have to have my facts because if not it's a wait of my time and his of a visit. I couldn't drive for awhile it was always on and off. I have to have a form filled out to see if l som still able to drive. I got my form for last year and was in the hospital for 11days because they thought l was having psychotic symptoms. When in fact that might be true but it was also because my liver meds l was having refilled l never recieved. Then when l got out the hospital they order the med a second time. But l kept the one l was given before. So now l am driving again. And l am doing great but the doctors are finally waking up. Keep fighting and don't give up.

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