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  #1  
Old 09-23-2018, 06:21 PM
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In EMU right now...seizures not manifesting


Hi all. New member here. Not new to seizures and diagnostic woes, unfortunately.

I am writing from the EMU. Sorry in advance for the length. I hope someone has insight from the patient perspective.

I was diagnosed with partial seizures w/ secondary psychiatric symptoms in 2013, but deep in temporal lobe and no good EEG readings, except for tachycardia and a variety of physical symptoms (like pupil dilation, flushing and rigidity) during suspected seizures and EEG. I am on the autism spectrum. I have a long history of misdiagnosis of psychiatric conditions, so the neurologists and psychiatrists (consulted at two major hospitals) wanted me in the EMU back then. I did not go at the time, as the anti-epileptic drug medication Depakote completely controlled the supposed seizures and I was in grad school and tired of medical tests. Big mistake to say the least.

I had to discontinue the Depakote and the meds I was taking for psychiatric were continued. With the Depakote, I almost went into acute liver failure. However, it was a great med, and was told it was a matter of life and death that I remain on it. It made me feel clear headed and much better. Just couldn't be on it bc of liver. Whenever I did not have it things spiraled out of control with my psychiatric and supposed seizure symptoms. A spell followed by brief psychiatric symptoms that quickly resolved.

Flash forward to 2016, major spells day and night. Loss of consciousness at times and terrible sleep, as I was having convulsions in my sleep and bizarre posturing (observed) and biting tongue and mouth in sleep on a regular basis. I broke a bone in my foot after a particularly violent night spell this summer. I wake up in my own blood some times. Spells moved from a few times a day to up to 60 plus a month. I kept a record.

Went back to an epileptologist and she feels that I definitely have seizures, limbic issues, and problems w/ insular cortex. She feels it is a deep temporal lobe issue. She recommended EMU, and that is where I am now. She said that I needed to go to ER to be admitted to EMU right away, and that no matter what they did or did not see on EEG, she was confident in her diagnosis based on my history and description of symptoms, as well as my heart rhythm during the EEG. My reports say tachycardia.

I have a family history of seizure disorder and brain tumors, as well as lack of oxygen at birth and frequent head trauma in childhood. She said it 'just fits'. Psychiatry and counseling, almost 20 years of it and 40 psych meds have not done very many positive things for me. The first spell I remember was age 3. Docs back then said I was just intelligent and venting by doing repetitive movements.

Here in the EMU, they discontinued my psych meds and the spells are greatly reduced in number. They cannot catch them, just sharps and spikes only. They switched me to another doctor and he says that these waves are not enough for a diagnosis of seizures, contradicting his boss. He does not like to be asked questions and said that he thinks my spells are psychogenic seizures, even though I took Ativan and Depakote and they worked incredibly well controlling them. I am very anxious and just want to try another anti-epileptic drug, a newer one. This is what the original neurologist suggested. He is unwilling to help me. Next bone I break I am afraid it will be my skull. They have slowed down, but they are tricky -- I never know. The doc in EMU said he will do me a favor and not call them 'psychogenic' so I am not labeled (his terms). He said he will call them non-epileptic spells.

I asked to speak to my original neurologist, but they cannot get her into the EMU till after I would be leaving. I am very concerned, as the epileptologist used very definite language and the other neurology doc disagreed. He will not diagnose until he sees a complete seizure on EEG and not just spikes and sharps on EEG. He said I could leave AMA, but I don't want to do this. Not sure what to do or how to talk to him.

Advice welcomed, sorry if this sounds like complaining. I have just been through a lot.

-CW
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Old 09-25-2018, 07:15 AM
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The doc in EMU said he will do me a favor and not call them 'psychogenic' so I am not labeled (his terms). He said he will call them non-epileptic spells.
I'm not sure this doc is doing you any favors. By not leaving open the possibility that they ARE epileptic in origin (and negative EMU results can't definitively rule out an epilepsy diagnosis), he is making it hard for you to be treated with epilepsy meds. Is there an epileptologist you can see? Can you go to a Level 4 epilepsy center (such as OSU: https://wexnermedical.osu.edu/neurol...pilepsy-center)
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Old 09-25-2018, 03:58 PM
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Thanks for the reply Nakamova. He tried to say I had hysteria today. They recorded numerous spells on camera and severe tachycardia every time. I had a large one while awake and several while asleep last night. The monitor would wake me up throughout the morning with alarms while I went into tachycardia. The doctor is not very personable and does not show much emotion, but I will never forget the alarm in his eyes. I see an epileptologist outpatient. She put me in EMU, but she told me that I needed to be patient, as she believes that we would not see any discharges on EEG. The doc in the hospital EMU said he doesn't know much about partial seizures, so he had me have a psych consult. The psychiatrist said I did not have conversion disorder, hysteria, or any other primary psychiatric illness, after spending several hours with me. He said never to be on psychiatric meds, ever. Hospital doc conferred with my epileptologist, one of the best in my state. She placed me on anti-epileptic drugs specifically for partial seizures. Tegretol and Trileptal will be tried at a low dose and then worked up slowly. The EMU doc said he thinks I am emotionally disturbed and hysteric, but he wants to place me on a med for seizures anyway and increase the dose. I don't understand him at all. My epileptologist said I am definitely diagnosed with epilepsy and has written it down on paper. temporal lobe epilepsy and insular cortex seizures. She sees it in her practice with great frequency. As a side note, she is the only neurologist doc who ever took a history or asked about family medical conditions. Since I have a family history of organic brain disease and epilepsy (mother, uncle, aunts) she feels this is significant. She made me go to ER that is why I was in EMU. To top it off, one of the ER female nurses became sexually inappropriate (and then violent) with me. She lost it and kicked things around the room. Neither of us knew what she was doing as she was being really nice a moment ago and had many personality changes. My mother was driving me and witnessed it, even though I am an adult of nearly 30 and we were both shocked by the nurses behavior. I am home now and happy to be meeting again with my regular doctor.
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Old 09-27-2018, 05:03 PM
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Hi cw2018,

Just like you I have temporal lobe epilepsy and I had very few spikes showing it wasn't until I had brain surgery to reduce my seizures that my neurosurgeon and Epileptologist saw I had damage on both temporal lobes but it was in so deep that not a single test would show all of it. My advice to you is to go to an Epilepsy Center and get and 2nd opinion make sure the center has an Epileptologist, neuropsychologist, and neurosurgeon
working together as a team on your case. Often a person with temporal lobe epilepsy will be very sensitive or emotional especial if damage is on the right temporal lobe of the brain. If you are waking up in your sleep ask the Dr. to do a sleep study on you by doing this they will be able to see if you are having seizures in your sleep. I found out I was having them in my sleep when I woke up really tired day after day then I went on vimpat and those seizures stopped but I still have absence and complex partial seizures.
I also took Depakene for yrs. and it worked great until my body got used to the drug and it lowered my blood platelet level to the point where I almost bleed internally. To find the best seizure med ask your Dr. to do a DNA test on you. The Dr. will draw blood and get some salvia from the inside of your mouth. That will be sent to a lab where they will be able to see the amount of enzymes in your liver along with your body chemistry and then the Dr. can match that up to the best seizure med for you with the least side effect. When I had my test done they found out I was drug resistant to all seizure meds out on the market so I was put on medical marijuana (cbd oil) and that has done wonders for me reducing my seizures. I wish you the best of luck and May God Bless You!

Sue
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Old 09-27-2018, 07:38 PM
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Thanks for the info. I am kind of worried that they are giving me a kind of run-around because they may be afraid of lawsuit. I went to their ER with these symptoms in 2009, and they noted in reports that I obtained from medical records that I had unusual, seizure-like posturing and very bizarre mental health symptoms. In a moment of complete lucidity back then during my supposed psychotic episode in the ER (unusual for true psychosis a psychiatrist has since told me), I asked the doctor if I has seizures? He said no, and thus began a long history of psychiatric diagnoses that I have not found helpful. Many of the psych meds made my symptoms significantly worse. I asked to see a neurologist doc from the same medical system a year later to see if I really did have seizures. He said no after an EEG and gave no explanation other than I had sleep apnea (I had never had a sleep study) and that I was just tired in the day. I ended up getting two studies at other health systems, no evidence for it at all. The EMU is at the same hospital as the ER visit in 2009. I broke my foot and my mother who has decades of healthcare experience (reading EEGs and directing sleep labs, as well as administrative experience in hospitals) feels that something anomalous may be going on. Like fear of a lawsuit on their part, or some kind of liability concern. I know this verges on tin foil hat territory, but anything is possible when it comes to money and aggressive lawyers. I want to see what my epileptologist thinks, who is partners with these two EMU docs who insisted that I had conversion disorder. I am prepared for more of the same treatment, but I live in hope. A second opinion may be in order. They did much the same to my mother, who worked for them (this same system) and was injured on the job. She had to go to another state to prove her symptoms, as they labeled her a malingerer. She had seizures and finally was found to have severe brain tissue changes, caused by a work fall. Their lawyers went to her hometown and asked her in deposition if she knew a man who was friend's with her older sister in the 1906s, we believe to intimidate her. In my experience in the EMU, even with my permission the doctor would not let her, a trained specialist in EEG read the data. She has seen all kinds of seizure data and worked for a famous epileptologist who is now deceased. I would have gone to him. He was my friend.
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