Hello, new here, and I have some questions. It's almost time for bed and I've skimmed the forums. Please point me in the right direction if I've missed a topic that's relevant here.
I'm going to give my short story and then ask the questions towards the end.
I'm a 22 year old female, and I've been going through a lot of trouble the past year trying to diagnose the issues I've been having. The big issues happened after a gallbladder removal surgery over a year ago (late 2010). I was under a lot of stress, having missed weeks of work, uninsured, with a $50,000 hospital bill. I started having "lost time", memory loss, walking dazed without remembering, derealization, deja vu, having severe visual disturbances (but not full hallucinations), and hearing noises that weren't there. Bright lights and loud noises would bother me. Every week or so during the roughest parts, sometimes two or three times a week, at night, I'd stiffen and shake, clench my jaw, and often be very disoriented and wouldn't remember much the next day. My mind would be in a constant foggy, fatigued state and I couldn't concentrate well.
The first mistake was to dismiss this as anxiety and panic attacks. I thought I was having severe anxiety due to the stress of many life-altering events and stress at work.
I visited two psychologists who talked with me for 2 or 3 months, but couldn't find much wrong, besides stress. One psychologist suggested I look into multiple personalities (due to the memory blanks), and one said I had some of the markers of schizophrenia and ADD (light/sound hallucinations and trouble concentrating). Neither had a solid idea so I decided to let things figure themselves out.
My financial issues cleared up, thanks to charity and my family, and my stress level went down. I went 3 months without a big problem. Then one night in September 2011 I was driving home on the interstate, felt extreme fear, and I became disoriented by the reflectors on the road. I missed my exit and almost hit another car. I was feeling serious jamais vu, fear, and disorientation. I was only 5 minutes from home and I made it home in time to collapse on the bed and have a serious seizure.
Then I had another in October I cannot remember, and another serious one in November 2011, the one that prompted me to go to the neurologist. Both September's and November's seizure had been precipitated by two stressful situations - I had to fire an employee, and then in November hire and train a new one.
Up until November I had actually dismissed all these seizure episodes as stress and anxiety, and maybe they are, I've not been formally diagnosed yet. After given the possibility of schizophrenia (terrifies me) it was a huge relief to look at the description of seizures and seizure auras and go "yep, yep, yep, that sounds EXACTLY like what happened!"
Now I'm in the process of diagnosis. I've had a normal MRI, and one normal EEG. My neurologist, boyfriend and myself heavily suspect epilepsy. My seizure episodes seem to happen once a month, with what I suspect might be simple partials a couple times a week. The neurologist has suggested a sleep study and more EEGs, and he wants to talk to my boyfriend.
I want to create a medical diary / seizure diary, but I'm not sure how to start one or what to put on it.
I wanted to start off with some vitals, medical history and family history, then list past injuries and illnesses, but my boyfriend is afraid this information is irrelevant. I want to describe past possible seizures or seizure-like activity, but I tend to be very wordy and I'm unsure how to describe this in the best possible way for a doctor.
Do I stick to brief bulletpoints or do I tell a story, like I did above?
How much information should I include in a diary entry?
Should I record any suspected seizure-like activity even if it's passing deja vu and a mild shock feeling, or should I only describe activity which is more serious?
How do you do your seizure diaries?
Thanks!
I'm going to give my short story and then ask the questions towards the end.
I'm a 22 year old female, and I've been going through a lot of trouble the past year trying to diagnose the issues I've been having. The big issues happened after a gallbladder removal surgery over a year ago (late 2010). I was under a lot of stress, having missed weeks of work, uninsured, with a $50,000 hospital bill. I started having "lost time", memory loss, walking dazed without remembering, derealization, deja vu, having severe visual disturbances (but not full hallucinations), and hearing noises that weren't there. Bright lights and loud noises would bother me. Every week or so during the roughest parts, sometimes two or three times a week, at night, I'd stiffen and shake, clench my jaw, and often be very disoriented and wouldn't remember much the next day. My mind would be in a constant foggy, fatigued state and I couldn't concentrate well.
The first mistake was to dismiss this as anxiety and panic attacks. I thought I was having severe anxiety due to the stress of many life-altering events and stress at work.
I visited two psychologists who talked with me for 2 or 3 months, but couldn't find much wrong, besides stress. One psychologist suggested I look into multiple personalities (due to the memory blanks), and one said I had some of the markers of schizophrenia and ADD (light/sound hallucinations and trouble concentrating). Neither had a solid idea so I decided to let things figure themselves out.
My financial issues cleared up, thanks to charity and my family, and my stress level went down. I went 3 months without a big problem. Then one night in September 2011 I was driving home on the interstate, felt extreme fear, and I became disoriented by the reflectors on the road. I missed my exit and almost hit another car. I was feeling serious jamais vu, fear, and disorientation. I was only 5 minutes from home and I made it home in time to collapse on the bed and have a serious seizure.
Then I had another in October I cannot remember, and another serious one in November 2011, the one that prompted me to go to the neurologist. Both September's and November's seizure had been precipitated by two stressful situations - I had to fire an employee, and then in November hire and train a new one.
Up until November I had actually dismissed all these seizure episodes as stress and anxiety, and maybe they are, I've not been formally diagnosed yet. After given the possibility of schizophrenia (terrifies me) it was a huge relief to look at the description of seizures and seizure auras and go "yep, yep, yep, that sounds EXACTLY like what happened!"
Now I'm in the process of diagnosis. I've had a normal MRI, and one normal EEG. My neurologist, boyfriend and myself heavily suspect epilepsy. My seizure episodes seem to happen once a month, with what I suspect might be simple partials a couple times a week. The neurologist has suggested a sleep study and more EEGs, and he wants to talk to my boyfriend.
I want to create a medical diary / seizure diary, but I'm not sure how to start one or what to put on it.
I wanted to start off with some vitals, medical history and family history, then list past injuries and illnesses, but my boyfriend is afraid this information is irrelevant. I want to describe past possible seizures or seizure-like activity, but I tend to be very wordy and I'm unsure how to describe this in the best possible way for a doctor.
Do I stick to brief bulletpoints or do I tell a story, like I did above?
How much information should I include in a diary entry?
Should I record any suspected seizure-like activity even if it's passing deja vu and a mild shock feeling, or should I only describe activity which is more serious?
How do you do your seizure diaries?
Thanks!
