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Conversion disorder with pseudoseizures (PNES)
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
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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.
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?