SEIZURE
(Epilogue. Sort of)
Well, my doc came in and talked with me before I was discharged from the hospital yesterday.
He said there are "spikes in the left temporal lobe" which are not technically seizures, but can become one if provoked. Though apparently not super likely. I should stay on the medication to control and prevent this possibility. Sleep deprivation is a major trigger. I will have a sleep study done over night some night with a sleep specialist, as it seems prudent to do something about my insomnia.
I said "do i have epilepsy?"
and he said "well, yes, but blahdy blah blah....."
Yes, but?
Anyway, I was on the medication already for depression, no biggy there.
He says after some time I may be able to go back down in dose. Though we also discussed that the only side affect that i had been having - blurred vision - may not be a side affect of the med at all and perhaps I should go back to my eye doctor.
So I am home.
Getting model airplane glue out of your hair and off your scalp is a huge pain in the ass.
I feel like a was gone a million years and not just a long weekend.
Atleast it is behind me now.
I guess.....
Still going for a follow appointmant in october.
Monday, September 20, 2010
Sunday, September 19, 2010
SEIZURE
(fourth installment)
RESULTS, OR LACK THERE OF
The rest of the story gets easier to tell.
I called and made an appointment with the neurologist my doctor recommended. I actually had to have my doctor call and finagle an appointment because the neurologist didn't really have one available as soon as she wanted. I saw him for an introduction, so we could make the EEG test appointment in his office. We spoke for maybe 15 minutes, some of which was actually the doctor on the pone with John getting the story from him. A week later I went in for the EEG. I now consider it the "little" EEG, as it only lasted 45 minutes. I had had very very little sleep the night before and sort of - what I thought - drifted off a couple of times during it.
Later that afternoon i got a call from the office saying the doctor wanted to see me for a follow up consultation. Appointment scheduled for a week later.
I was in the doctor's office. He walked in the door. We said the hi-how-are-ya-s and he said "so looking at the EEG there are definitely abnormal brainwaves , so you do have a seizure disorder, and you should consider your driver's license revoked as of now."
COULD YOU HAVE BOUGHT ME A DRINK FIRST?
Anyway, we spoke for a few more minutes, he explained he was increasing the medication I was already on, and expected to increase it again in a couple of months. I would be receiving paperwork from the DMV which I should bring into his office right away when I got it. Whether or not they would permanently revoke my license was up to them and they handle it on an individual basis.Then he went on at length about the way the laws regarding driving and epilepsy were different from one state to another, and didn't make sense, and California is too lawsuit ridden in general and do you see the adds on the backs of buses about injury cases? and blah blah blah.
I went home stunned. And freaked out about not being able to drive. It all seemed very abrupt and confusing. I had so many questions.
So I got on the Internet.
This is where people start screaming "NNnnooooooooo". But really, it was not a horror fest search. I went to the DMV website. And the official epilepsy websites. Mostly it seemed that diagnosis of epilepsy was after 2 unprovoked episodes. And it didn't seem like I met the DMV specifications for having my license suspended or revoked. Yet.
I called the doctor back. I explained that I was confused about the driving issue.
He said he had to legally report it. I understand that, but how could he say my license was suspended?
"I didn't say that. I can't make that determination. I'm not the DMV." Then came another round of babble about the legal system, the state of California, and the rest of the states and their different laws. if pressed he thought 3 months was a reasonable time to wait and see if the medication was keeping me stabilized.
I did not like the way things were playing out.
I had my follow up with my GP and she said she thought after 2 weeks of being on increased levels of the medication that I should forget about it and go on with my life.
So I decided to get a second opinion.
I found a place in Pasadena that specializes in epilepsy diagnosis and treatment. They seemed respectable and are covered by my insurance policy. Things have been a bit of a struggle with the office side of things, but I trust the doctor.
The first appointment was an hour+ long interview. He said "we don't know yet", and asked me to come in for a 4-5 hour EEG. He said if that didn't show anything he would then want me to do a 48 hour EEG in the hospital. And we know where I've been for the last two days so that fills in that part of the story. He also seemed to focus on my life-long insomnia as very much a part of this picture, and some of what he has been hoping to discover from this 48 hours is if there's a connection.
so as this was approaching I kept trying to remind myself that I could come out of this weekend with hope of solving the sleep problems as well as ruling out epilepsy.
Now I am just waiting for the doctor to come and write my release order so that the tech can start the unhooking, unwrapping, disconnecting process. They keep asking me if I've noticed any events. No. And I even slept pretty well last night.
I'm expecting that there was no evidence of seizures, no sleep apnea or other identifiable cause for sleep problems, and therefore, in the end, no idea what happened to me in June.
That's just my guess, though. I won't know anything for over a month. My follow up appointment can't happen before then because my doctor is going on vacation.
(fourth installment)
RESULTS, OR LACK THERE OF
The rest of the story gets easier to tell.
I called and made an appointment with the neurologist my doctor recommended. I actually had to have my doctor call and finagle an appointment because the neurologist didn't really have one available as soon as she wanted. I saw him for an introduction, so we could make the EEG test appointment in his office. We spoke for maybe 15 minutes, some of which was actually the doctor on the pone with John getting the story from him. A week later I went in for the EEG. I now consider it the "little" EEG, as it only lasted 45 minutes. I had had very very little sleep the night before and sort of - what I thought - drifted off a couple of times during it.
Later that afternoon i got a call from the office saying the doctor wanted to see me for a follow up consultation. Appointment scheduled for a week later.
I was in the doctor's office. He walked in the door. We said the hi-how-are-ya-s and he said "so looking at the EEG there are definitely abnormal brainwaves , so you do have a seizure disorder, and you should consider your driver's license revoked as of now."
COULD YOU HAVE BOUGHT ME A DRINK FIRST?
Anyway, we spoke for a few more minutes, he explained he was increasing the medication I was already on, and expected to increase it again in a couple of months. I would be receiving paperwork from the DMV which I should bring into his office right away when I got it. Whether or not they would permanently revoke my license was up to them and they handle it on an individual basis.Then he went on at length about the way the laws regarding driving and epilepsy were different from one state to another, and didn't make sense, and California is too lawsuit ridden in general and do you see the adds on the backs of buses about injury cases? and blah blah blah.
I went home stunned. And freaked out about not being able to drive. It all seemed very abrupt and confusing. I had so many questions.
So I got on the Internet.
This is where people start screaming "NNnnooooooooo". But really, it was not a horror fest search. I went to the DMV website. And the official epilepsy websites. Mostly it seemed that diagnosis of epilepsy was after 2 unprovoked episodes. And it didn't seem like I met the DMV specifications for having my license suspended or revoked. Yet.
I called the doctor back. I explained that I was confused about the driving issue.
He said he had to legally report it. I understand that, but how could he say my license was suspended?
"I didn't say that. I can't make that determination. I'm not the DMV." Then came another round of babble about the legal system, the state of California, and the rest of the states and their different laws. if pressed he thought 3 months was a reasonable time to wait and see if the medication was keeping me stabilized.
I did not like the way things were playing out.
I had my follow up with my GP and she said she thought after 2 weeks of being on increased levels of the medication that I should forget about it and go on with my life.
So I decided to get a second opinion.
I found a place in Pasadena that specializes in epilepsy diagnosis and treatment. They seemed respectable and are covered by my insurance policy. Things have been a bit of a struggle with the office side of things, but I trust the doctor.
The first appointment was an hour+ long interview. He said "we don't know yet", and asked me to come in for a 4-5 hour EEG. He said if that didn't show anything he would then want me to do a 48 hour EEG in the hospital. And we know where I've been for the last two days so that fills in that part of the story. He also seemed to focus on my life-long insomnia as very much a part of this picture, and some of what he has been hoping to discover from this 48 hours is if there's a connection.
so as this was approaching I kept trying to remind myself that I could come out of this weekend with hope of solving the sleep problems as well as ruling out epilepsy.
Now I am just waiting for the doctor to come and write my release order so that the tech can start the unhooking, unwrapping, disconnecting process. They keep asking me if I've noticed any events. No. And I even slept pretty well last night.
I'm expecting that there was no evidence of seizures, no sleep apnea or other identifiable cause for sleep problems, and therefore, in the end, no idea what happened to me in June.
That's just my guess, though. I won't know anything for over a month. My follow up appointment can't happen before then because my doctor is going on vacation.
Saturday, September 18, 2010
SEIZURE
(third installment)
BUT I DON'T WANNA TAKE A TEST
Three people have asked me questions this morning along the lines of; so, did you have a good night?
Well, let's update. I have 25 electrodes glued to my head and wrapped in gauze, 2 electrodes on my chest, a blood oxygen monitor taped to my left fore finger, an IV stint in my right forearm, and, oh yeah, i had to stay up until 3AM and it's now 7:30 (or whatever morning hours were applicable at the time of questioning).
Does this question mean something else? or really actually nothing at all?
I think there's a lot of uncomfortable small talk in hospitals.
When I checked myself into the ER last June, it wasn't clear when I would be released. I went hoping to be home that same night. What I have now figured out is that the more tests come back negative, which is a good thing, the more tests they need to do.
In the ER they did bloodwork, an EKG, lung Xray, and a ct scan.
While I was in my 'room' a smell developed that was something like meatloaf gone bad. I thought maybe somebody had brought gross lunch. Then after awhile the scent of oranges was everywhere. It was like being on the Soarin' over California ride at California Adventure Park. The next time the "patient representive' came to check on me I asked if it was a real orange or a cleanser. He said "oh, no, it's a deodorizer." (which is where he could have left it). The rest of his sentence was "someone came in with a really foul smelling wound. It's been really bad." Like bad meatloaf?
Then they let me know they were going to admit me to the hospital for overnight monitoring and more tests.
Eventually there was an ultrasound of the carotid arteries and MRIs with and without contrast added to the list of tests coming back negative. And I wanted to go home. My doctor said she would release me, but wanted me to see a neurologist for an EEG. If I wanted to go home I needed to promise to see him ASAP on an outpatient basis.
Done.
I went home knowing that I had not had a mini-stroke. There was no brain damage. I have a healthy heart. Basically, I am really healthy and there was no clue about what may have happened to me. It was not a "typical" episode of anything obvious. All the tests were saying I was fine. The only thing left, the EEG, seemed a bit unlikely. I was on a medication for depression that is actually a common anti-seizure medication. This made some sort of seizure seem unlikely, but the momentum was unstoppable. There is also another kind of event, called Global Transient Amnesia, which was being considered. Again, I would have had a very atypical version if that's what they decided had happened. I just needed to see the neurologist. For another test.
(third installment)
BUT I DON'T WANNA TAKE A TEST
Three people have asked me questions this morning along the lines of; so, did you have a good night?
Well, let's update. I have 25 electrodes glued to my head and wrapped in gauze, 2 electrodes on my chest, a blood oxygen monitor taped to my left fore finger, an IV stint in my right forearm, and, oh yeah, i had to stay up until 3AM and it's now 7:30 (or whatever morning hours were applicable at the time of questioning).
Does this question mean something else? or really actually nothing at all?
I think there's a lot of uncomfortable small talk in hospitals.
When I checked myself into the ER last June, it wasn't clear when I would be released. I went hoping to be home that same night. What I have now figured out is that the more tests come back negative, which is a good thing, the more tests they need to do.
In the ER they did bloodwork, an EKG, lung Xray, and a ct scan.
While I was in my 'room' a smell developed that was something like meatloaf gone bad. I thought maybe somebody had brought gross lunch. Then after awhile the scent of oranges was everywhere. It was like being on the Soarin' over California ride at California Adventure Park. The next time the "patient representive' came to check on me I asked if it was a real orange or a cleanser. He said "oh, no, it's a deodorizer." (which is where he could have left it). The rest of his sentence was "someone came in with a really foul smelling wound. It's been really bad." Like bad meatloaf?
Then they let me know they were going to admit me to the hospital for overnight monitoring and more tests.
Eventually there was an ultrasound of the carotid arteries and MRIs with and without contrast added to the list of tests coming back negative. And I wanted to go home. My doctor said she would release me, but wanted me to see a neurologist for an EEG. If I wanted to go home I needed to promise to see him ASAP on an outpatient basis.
Done.
I went home knowing that I had not had a mini-stroke. There was no brain damage. I have a healthy heart. Basically, I am really healthy and there was no clue about what may have happened to me. It was not a "typical" episode of anything obvious. All the tests were saying I was fine. The only thing left, the EEG, seemed a bit unlikely. I was on a medication for depression that is actually a common anti-seizure medication. This made some sort of seizure seem unlikely, but the momentum was unstoppable. There is also another kind of event, called Global Transient Amnesia, which was being considered. Again, I would have had a very atypical version if that's what they decided had happened. I just needed to see the neurologist. For another test.
SEIZURE
(second installment)
BACK TO THE BEGINNING
Well here I am. All wired up and no place to go. So I guess now is the time to play catch up. I've got all night. Or most of it since they plan on keeping me awake until 3 AM at least. Though with everything they've attached to me I'm not sure how I'll ever really get to sleep even when they let me.
I am here because I had some sort of seizure last June. I woke up one Sunday morning, went to the kitchen with my kids and sat down at the table to have some tea. John got up earlier than I was expecting, which was nice. He started to make himself coffee.
Now this is where it gets tricky. Do I tell it the way I remember it? Or do I tell it the way it happened? Cause they're not the same thing. Although now, 3 months and many tellings later, the line between them is fuzzy.
I was sitting and looking down at my phone. That I remember. Probably reading email or Facebook. Then my memory lapses.
The boys wanted me to move to a different chair. They asked me to move. They spoke to me several times. John got irritated that I wasn't responding and came to see why. I was perfectly still, not slumped, with my eyes shut. He put his hand on me and said my name. Still no response from me. After a few more attempts I opened my eyes and mumbled. He walked me to the couch. He brought me a pastry and some juice. At first he had to help me hold it. He asked if I wanted more food. I said yes, I'd like some eggs. My speech was low, mumbled and incomplete. He went to the kitchen and made eggs. He brought me back to the kitchen table and I ate eggs and another pastry. As I was sitting and eating the eggs I joined the conversation going on at the table (my dad and his wife, Monika, were visiting) as if nothing had ever happened. It was like I was just suddenly back.
My memory doesn't quite pick up right there. Things are kind of hazy about the whole morning, right through lunch. I do remember John trying to tell me that something serious had happened and he wasn't sure what to do. He called and talked to his mom. She suggested the ER. I didn't really understand what had happened, wasn't aware of how truly strange it had been. And I felt fine. I promised John that I would call my doctor in the morning. Besides, my Dad and Monika were visiting and we had a birthday party for a friend of the boys to attend. Life goes on, right?
(yes, I hear the booing and hissing now. Then I had no idea.)
The next morning we called my doctor. She yelled at me for not going to the ER. Apparently that's not a normal event in someone's life and should be taken seriously. She explained that the number of tests that needed to be done couldn't be handled on an outpatient basis easily and therefore I would still need to go to the ER, right away.
And thus began THE TESTS.
(second installment)
BACK TO THE BEGINNING
Well here I am. All wired up and no place to go. So I guess now is the time to play catch up. I've got all night. Or most of it since they plan on keeping me awake until 3 AM at least. Though with everything they've attached to me I'm not sure how I'll ever really get to sleep even when they let me.
I am here because I had some sort of seizure last June. I woke up one Sunday morning, went to the kitchen with my kids and sat down at the table to have some tea. John got up earlier than I was expecting, which was nice. He started to make himself coffee.
Now this is where it gets tricky. Do I tell it the way I remember it? Or do I tell it the way it happened? Cause they're not the same thing. Although now, 3 months and many tellings later, the line between them is fuzzy.
I was sitting and looking down at my phone. That I remember. Probably reading email or Facebook. Then my memory lapses.
The boys wanted me to move to a different chair. They asked me to move. They spoke to me several times. John got irritated that I wasn't responding and came to see why. I was perfectly still, not slumped, with my eyes shut. He put his hand on me and said my name. Still no response from me. After a few more attempts I opened my eyes and mumbled. He walked me to the couch. He brought me a pastry and some juice. At first he had to help me hold it. He asked if I wanted more food. I said yes, I'd like some eggs. My speech was low, mumbled and incomplete. He went to the kitchen and made eggs. He brought me back to the kitchen table and I ate eggs and another pastry. As I was sitting and eating the eggs I joined the conversation going on at the table (my dad and his wife, Monika, were visiting) as if nothing had ever happened. It was like I was just suddenly back.
My memory doesn't quite pick up right there. Things are kind of hazy about the whole morning, right through lunch. I do remember John trying to tell me that something serious had happened and he wasn't sure what to do. He called and talked to his mom. She suggested the ER. I didn't really understand what had happened, wasn't aware of how truly strange it had been. And I felt fine. I promised John that I would call my doctor in the morning. Besides, my Dad and Monika were visiting and we had a birthday party for a friend of the boys to attend. Life goes on, right?
(yes, I hear the booing and hissing now. Then I had no idea.)
The next morning we called my doctor. She yelled at me for not going to the ER. Apparently that's not a normal event in someone's life and should be taken seriously. She explained that the number of tests that needed to be done couldn't be handled on an outpatient basis easily and therefore I would still need to go to the ER, right away.
And thus began THE TESTS.
Friday, September 17, 2010
SEIZURE
PROLOGUE
I am in a hospital, hooked up to an EEG monitor for the next 48 hours. I arrived at 10:00 AM this morning and now, at 2:20 I am totally hooked up and ready to- well, do nothing.
Those who knew I was coming suggested it could be something to look forward to, like a weekend away from the stress of my life.I wasn't in that state of mind. For the last couple of weeks as this event was approaching, I tried not to think of it much because it just created anxiety. "It is NOT as if I am going to a spa for a weekend" I would say. I am going to have 25 electrodes attached to my head with glue and then wrapped with gauze,heart monitor wires, an oxygen level monitor and some sort of sensor attached to a thigh at night. They are going to deprive me of sleep. And the worst of it was the "posey vest". I was told they were going to use this thing with the happy sounding name to attach me to the bed (or chair if I wanted a change of pace)for my safety. All the while being video taped. (I have already resisted the urge to scratch my private parts more than once.)
Well, by this morning I was actually starting to look forward to it all,as long as it meant I was gonna be away from kids for a couple of days.
I also learned I wouldn't be required to wear the dreaded Posey Vest.
I was served lunch.
And, just as I had started to believe this might actually be kind of nice, everything was attached and wrapped and plugged in. I can tell you now, it is not only NOT relaxing, it is downright uncomfortable.
PROLOGUE
I am in a hospital, hooked up to an EEG monitor for the next 48 hours. I arrived at 10:00 AM this morning and now, at 2:20 I am totally hooked up and ready to- well, do nothing.
Those who knew I was coming suggested it could be something to look forward to, like a weekend away from the stress of my life.I wasn't in that state of mind. For the last couple of weeks as this event was approaching, I tried not to think of it much because it just created anxiety. "It is NOT as if I am going to a spa for a weekend" I would say. I am going to have 25 electrodes attached to my head with glue and then wrapped with gauze,heart monitor wires, an oxygen level monitor and some sort of sensor attached to a thigh at night. They are going to deprive me of sleep. And the worst of it was the "posey vest". I was told they were going to use this thing with the happy sounding name to attach me to the bed (or chair if I wanted a change of pace)for my safety. All the while being video taped. (I have already resisted the urge to scratch my private parts more than once.)
Well, by this morning I was actually starting to look forward to it all,as long as it meant I was gonna be away from kids for a couple of days.
I also learned I wouldn't be required to wear the dreaded Posey Vest.
I was served lunch.
And, just as I had started to believe this might actually be kind of nice, everything was attached and wrapped and plugged in. I can tell you now, it is not only NOT relaxing, it is downright uncomfortable.
Subscribe to:
Posts (Atom)