Conversion disorder with pseudoseizures (PNES)

Posted by ditim @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

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.

Today after dealing with a psychiatrist , neurologist, rhemontologist, pcp and pulmonologist. I can say that some of my doctors need to go back to med school.or just prescribe pain meds. It probably easier. I just got two of my medical records and from being diagnosed first with Partial seizures for years l can't see now how you can have PNES. I was just looking at the epilepsy society and they were saying just because a eeg or PET test comes back normal if a patient has convulsion, slurred speech, tremors and passing out just don't assume it psychological go test deeper. It could be AE, tumor anything.i been dealing with doctors for 20yrs and yes l have had some that we great but now l am getting more who are sloppy and in for the money. But we have to have a change. And l thank God right now l have a few good ones and l just fired one yesterday and now l will be firing another on Monday. I first have to deal with the pharmacy and the insurance. It's a shame you have to always tell you doctor about medicines you can't take because of you health. The doctor put me on a medicine for seizure and it's a mood stabilizer but you not looking to see how it will affect your patient. And hospitals running like businesses and not listening to the patients. I want to be able to see my doctors files because this psychiatrist was acting like he was on drugs. I am told l.am unstable but yet he was all over the office and taking a phone call why l.was in his office seeing him. And then when he gets off he says you are psychotic, manic, depressed. And l came in for a follow-up and l am telling him l can't take these sleeping pills and this seizure medicine because of liver. And l.am reading articles about this now. There are so many people who are miss diagnosed and in mental hospitals because of AE and also doctors who say PNES are a psychiatric disease. Is every illness psychiatric illness. I just Thank God for give me my memory back so l can think logically and try to make a difference.

Yesterday l have an appointment with 2 cardiologist after being given prednisone for bronchitis and causing tachycardia. I could have canceled one appointment but l wanted to have a choice. And also to see which doctor would listen. Well both did, l was glad about that. One is putting a holter monitor on me for 2days and he wants to see me in a month. And he told l can go back taking one of my high blood pressure medication. The other one a little different. He said l want to draw some lab do a stress test and echo before l prescribe any meds. Because you are allergic to so many medication land you pressure was ok here and when you were at the hospital. So l don't want to start you on something and it makes it hard on your liver. But when they both asked me about my medical.history they brought up seizures. And they asked me about that. I told them after my brain injury l was diagnosed with Absence seizures by one of our states #1 neurologist. But that in 2014 by another neurologist he diagnosed me with PNES and conversion disorder and l have also been diagnosed with FND. Now one of the doctors knew my neurologist l was talking about and he said if he said you have seizures you have seizures. Because he treated his family member. Then the other cardiologist said you had viral encephalitis. Yes you have seizures. I told them both l know l did but l guess l just have to let these other doctors make fools of themselves. Even my insurance nurses who call me say the same thing you have seizures. So now l just waiting for the cardiologist to get the lab back and he said l will then prescribe you something that will work. And God his so good his wife works at his office and she is an internist medical doctor so l have an appointment with her next. We have to hold doctors accountable because it shouldn't take 5yrs to say l am wrong you are having seizures now let's work on this together. Thank God l am still alive to tell my story. But l listen to this recording by Marvin Sapp. God favors Me.

@techi

Yesterday l have an appointment with 2 cardiologist after being given prednisone for bronchitis and causing tachycardia. I could have canceled one appointment but l wanted to have a choice. And also to see which doctor would listen. Well both did, l was glad about that. One is putting a holter monitor on me for 2days and he wants to see me in a month. And he told l can go back taking one of my high blood pressure medication. The other one a little different. He said l want to draw some lab do a stress test and echo before l prescribe any meds. Because you are allergic to so many medication land you pressure was ok here and when you were at the hospital. So l don't want to start you on something and it makes it hard on your liver. But when they both asked me about my medical.history they brought up seizures. And they asked me about that. I told them after my brain injury l was diagnosed with Absence seizures by one of our states #1 neurologist. But that in 2014 by another neurologist he diagnosed me with PNES and conversion disorder and l have also been diagnosed with FND. Now one of the doctors knew my neurologist l was talking about and he said if he said you have seizures you have seizures. Because he treated his family member. Then the other cardiologist said you had viral encephalitis. Yes you have seizures. I told them both l know l did but l guess l just have to let these other doctors make fools of themselves. Even my insurance nurses who call me say the same thing you have seizures. So now l just waiting for the cardiologist to get the lab back and he said l will then prescribe you something that will work. And God his so good his wife works at his office and she is an internist medical doctor so l have an appointment with her next. We have to hold doctors accountable because it shouldn't take 5yrs to say l am wrong you are having seizures now let's work on this together. Thank God l am still alive to tell my story. But l listen to this recording by Marvin Sapp. God favors Me.

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Hi, @techi – you may have noted I moved your post here, so that you could update the members in this discussion where you were participating before related to the seizures and conversion disorder.

@techi – confirming the breakthrough was that doctors were acknowledging you experience seizures? When will you hear back on the labs from the cardiologist?

Have they drawn spinal fluid to have that tested for things like Encephalitis? I started with jerks on my left side that went into seizures. I have autoimmune Limbic encephalitis type LGI1 related to Voltage Gated Potassium Channel antibodies. My serum from the spinal draw was sent to Mayo and they confirmed the antibodies. These antibodies normally attack viruses, etc but went after my brain instead. A lot of people are misdiagnosed and go for years without proper treatment. The sooner the treatment the better the outcome (in majority of cases). Look up autoimmune encephalitis. There’s many different types with different syptoms.

@lisalucier

Hi, @techi – you may have noted I moved your post here, so that you could update the members in this discussion where you were participating before related to the seizures and conversion disorder.

@techi – confirming the breakthrough was that doctors were acknowledging you experience seizures? When will you hear back on the labs from the cardiologist?

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I have heard back from one cardiologist this weekend. One of my labs came back elevated and he wanted me to get a stat ct scan. I went on Saturday but they didn't do it. He was very upset and called me today. So l had the test done Monday. Now as far as my test for seizures l haven't received those results yet. I am suppose to see the neurologist next week because he wanted to admit me but not tell me the results of the eeg. So l made it clear to him you tell me the results first. Then we will proceed because l know he's going to take me off of my meds to see which ones are helping and if any are causing problems. And what meds he can give me for seizures that l can take but l really don't understand how difficult it could be to diagnose seizures.

I went to 2 cardiologist last Thursday just to see which one l felt confident with to my surprise l.liked both of them. When was talking to the first one he looked at my records and said l see you have seizures. I told him well in 1998 after my brain injury l was diagnosed with absence seizures by a number 1 neurologist in my state. He asked his name and l.told him and he said if he diagnosed you with seizures then he's correct. That because my previous neurologist took care of his father in law. Then when l went to the second one we discussed my heart and he asked about my meds and the ones l was taking. I told him l use to take seizure meds but l was told l.didnt have seizures instead PNES, convulsions, conversion disorder, depression, anxiety and so forth. He asked me about what type of brain Injury l had. When l told him he said you have seizures but the crazy thing is why l still getting tested and not on meds? Has anyone gone through this before?

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