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 AED 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 AED, 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
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 AED 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 AED, 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