So are the days of our lives...
05-27-16, 08:55 AM
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Sorry I am unfamiliar with that term.
Perhaps you are trying to ask about a "status" seizure?
Status epilepticus is a continuous seizure lasting more than 5 minutes. The longer it is, the worse the potential outcome- in that there is greater chance of permanent brain damage and greater negative physiologic impact on the body as a whole (elevated body temperature, hypoxia due to incoordinated breathing, increased likelihood of aspiration pneumonia). There is also a greater risk of future seizures, both of similar and lesser severity.
It does not take that much brain to run a dog, so typically if I can stop the status episode immediately after the dog gets to me, I'm not too gloom and doom about it. Even a 40 min long seizure can leave you with a pretty normal dog a few weeks down the road, so I encourage people to hang in there & see what the animal looks like in a couple of weeks. But dogs don't do challenging math or play the piano, so I'm sure we don't appreciate those kinds of brain injury.
Do you know someone who went into status?
Status sounds right. I don't have full details on the length of seizure but she was in ICU for 5? days on anti-seizure medication, with signs of seizure based on brain waves (? I don't know how they monitor this stuff) pretty constant/regular for at least a couple days. Heavily sedated, induced coma it seems, breathing tube since the medication stopped her breathing. She was walking to school to pick up one of the kids and she must have just collapsed.
She doesn't know her 18 month old, and sometimes knows her 6 1/2 year old. She remembers her 9 year old, I think he's 9 now. I was really shocked when I heard just how little she can do now.
She can speak but I haven't spoken to her as it was unclear what was going on (and she lives on the other coast and all communication stopped for a few days). My little brother (he's 7 years younger than me) went out, then my brother (2 years younger) finally got to speak to her. She told him at some point "Oh, yeah, I'm trying to figure out the phone, it's complicated." And my brother thought, "Yeah, smartphones with apps and swipes and all sorts of stuff..." then he realized, "Oh, she means dialing the phone." He said it can take her 2-3 minutes to process a simple question, like "do you know how old you are?" (she doesn't). My little brother said "I'm 42 and you're 3 years younger than me. Now do you know how old you are?" She didn't. Sometimes her answer is, after a couple minutes, "Did you just ask me something?"
I read (now that I Googled "status seizure" instead of "static seizure" I see that Google pointed me to the right wiki page the first time) that prognosis can be anything, from death to full recovery. It seems that underlying physical problems become significant. I don't think she has any but I don't know.
I had very short seizures for about 6 months when I was about her age, but nothing really came of them (meaning I don't think I forgot anything, but then how would I know if I forgot something if I forgot it). I remember not being able to move my body, it was like a full body cramp without any muscles tensing. I couldn't breathe so that was a bit scary. I think I was making faces, it felt that way, but I don't know, I should ask the Missus when she gets back from her run. I don't have solid data but I'm pretty sure the seizures lasted no more than 15-20 seconds, possibly 30 seconds. They seemed like they lasted forever but so does a sprint that lasts a second longer than you want it to last.
I wonder if it's genetic or something. I thought I had the seizures because I was really sick and ran a 104 deg fever for a number of days.
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-27-16, 09:01 AM
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Apparently I was making faces but the rest of my body wasn't flexing/etc. Also apparently I had these seizures at night and I didn't know I was having them so maybe I had more than I realized, although enough would happen to wake up the Missus.
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-27-16, 09:17 AM
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damn cdr, hope things get better for your sister.
05-27-16, 09:41 AM
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05-27-16, 09:56 AM
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Wow. Hope she's on the full recovery side of things. Best wishes to your family.
05-27-16, 10:45 AM
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When she was in the ICU, they were monitoring the electrical activity in her brain via an EEG. That's kind of like an EKG for the brain. They could see that even though her body was not moving & there were no outward signs of a seizure (I assume), on an electrical level, there was seizure activity still occurring in the brain. This is called non-convulsive status epilepticus.
Its likely that the medications that required her to be on a ventilator were anti-seizure medications. When intermittent doses of seizure medications don't work, you would typically resort to a constant-rate infusion of anti-seizure medications, which will depress respiration and consciousness. Ergo, the ventilator.
Its almost certain they did an MRI on her brain & found no structural abnormalities, which means she has a form of epilepsy. So first thing that's good is that she doesn't have a brain tumor or other scary disease.
Prognosis is variable for return to normalcy. However, I am always surprised (at least in dogs and cats) at how resilient the brain is and how frequently the neurologic deficits resolve completely. I tell pet owners to just take it day by day and the more days of consecutive improvement you get, the overall better the prognosis. I really don't know if it's the same for people. But I treat this kind of thing pretty routinely and nothing you're describing would freak me out right now, it's not expected that she would be neurologically normal at this point. The brain is very sensitive to tiny perturbations in its chemical and electrical homeostasis and even though the seizures have stopped, the brain is still in the process of returning to status quo.
The other issue that she will need to contend with is long-term seizure management. Obviously her doctors will want to be pretty aggressive about her seizure meds. Sometimes the seizures are very responsive to meds & sometimes they are not. There are surgical treatment options for some patients, if it comes to that.
In light of this happening to your sister & your own seizure history, obviously a recheck & chat with your neurologist is in order too.
Hoping for the best, which is not Pollyanna thinking, it really all might turn out totally ok.
05-27-16, 12:17 PM
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I hope things work out CDR.
I have an epileptic dog, but his seizures generally last no longer than a couple minutes. And they vary from focal seizures of his face to full-on grand mal episodes. It was tough to deal with for awhile. I cannot imagine what it's like with a person.
That said, From what our vet told us and what we have read online, canine epilepsy is very similar to human epilepsy. And we get all of his medications at the local pharmacy. He is on a cocktail of drugs because phenobarbital kills his white blood cell production.
We've also noticed a correlation between changes in barometric pressure and seizure activity. I have found several studies that recorded similar correlations in humans.
I really do hope things work out.
I have an epileptic dog, but his seizures generally last no longer than a couple minutes. And they vary from focal seizures of his face to full-on grand mal episodes. It was tough to deal with for awhile. I cannot imagine what it's like with a person.
That said, From what our vet told us and what we have read online, canine epilepsy is very similar to human epilepsy. And we get all of his medications at the local pharmacy. He is on a cocktail of drugs because phenobarbital kills his white blood cell production.
We've also noticed a correlation between changes in barometric pressure and seizure activity. I have found several studies that recorded similar correlations in humans.
I really do hope things work out.
05-27-16, 02:27 PM
Senior Member
Damn, sorry to hear that.
When she was in the ICU, they were monitoring the electrical activity in her brain via an EEG. That's kind of like an EKG for the brain. They could see that even though her body was not moving & there were no outward signs of a seizure (I assume), on an electrical level, there was seizure activity still occurring in the brain. This is called non-convulsive status epilepticus.
Its likely that the medications that required her to be on a ventilator were anti-seizure medications. When intermittent doses of seizure medications don't work, you would typically resort to a constant-rate infusion of anti-seizure medications, which will depress respiration and consciousness. Ergo, the ventilator.
Its almost certain they did an MRI on her brain & found no structural abnormalities, which means she has a form of epilepsy. So first thing that's good is that she doesn't have a brain tumor or other scary disease.
Prognosis is variable for return to normalcy. However, I am always surprised (at least in dogs and cats) at how resilient the brain is and how frequently the neurologic deficits resolve completely. I tell pet owners to just take it day by day and the more days of consecutive improvement you get, the overall better the prognosis. I really don't know if it's the same for people. But I treat this kind of thing pretty routinely and nothing you're describing would freak me out right now, it's not expected that she would be neurologically normal at this point. The brain is very sensitive to tiny perturbations in its chemical and electrical homeostasis and even though the seizures have stopped, the brain is still in the process of returning to status quo.
The other issue that she will need to contend with is long-term seizure management. Obviously her doctors will want to be pretty aggressive about her seizure meds. Sometimes the seizures are very responsive to meds & sometimes they are not. There are surgical treatment options for some patients, if it comes to that.
In light of this happening to your sister & your own seizure history, obviously a recheck & chat with your neurologist is in order too.
Hoping for the best, which is not Pollyanna thinking, it really all might turn out totally ok.
When she was in the ICU, they were monitoring the electrical activity in her brain via an EEG. That's kind of like an EKG for the brain. They could see that even though her body was not moving & there were no outward signs of a seizure (I assume), on an electrical level, there was seizure activity still occurring in the brain. This is called non-convulsive status epilepticus.
Its likely that the medications that required her to be on a ventilator were anti-seizure medications. When intermittent doses of seizure medications don't work, you would typically resort to a constant-rate infusion of anti-seizure medications, which will depress respiration and consciousness. Ergo, the ventilator.
Its almost certain they did an MRI on her brain & found no structural abnormalities, which means she has a form of epilepsy. So first thing that's good is that she doesn't have a brain tumor or other scary disease.
Prognosis is variable for return to normalcy. However, I am always surprised (at least in dogs and cats) at how resilient the brain is and how frequently the neurologic deficits resolve completely. I tell pet owners to just take it day by day and the more days of consecutive improvement you get, the overall better the prognosis. I really don't know if it's the same for people. But I treat this kind of thing pretty routinely and nothing you're describing would freak me out right now, it's not expected that she would be neurologically normal at this point. The brain is very sensitive to tiny perturbations in its chemical and electrical homeostasis and even though the seizures have stopped, the brain is still in the process of returning to status quo.
The other issue that she will need to contend with is long-term seizure management. Obviously her doctors will want to be pretty aggressive about her seizure meds. Sometimes the seizures are very responsive to meds & sometimes they are not. There are surgical treatment options for some patients, if it comes to that.
In light of this happening to your sister & your own seizure history, obviously a recheck & chat with your neurologist is in order too.
Hoping for the best, which is not Pollyanna thinking, it really all might turn out totally ok.
Basically everything you said is how it happened. She's having seizures that aren't outwardly obvious except that she's not responding to normal outside stimuli, like someone saying "hello? hello?".
They put her on some serious anti-seizure medication and had to do a breathing and feeding tube. They removed the breathing tube after 4 days I think and then weaned her off the feeding tube over the next 4 days or so. At first we thought she wasn't talking a lot because her throat hurt from the tubes. It's obvious now that it wasn't that simple. I think it's been 2 weeks. Seems like more but they found her on the sidewalk on a Friday afternoon, so it's either 2 or 3 weeks today.
They did a slew of exams, including something like an MRI (or maybe CAT scan, I need to differentiate them in my head). They didn't find anything like stroke or other things. They also asked about any family history and I duly reported mine. No one else has has any kind of similar experience.
They discharged her yesterday because "she was improving so quickly". So I guess not knowing her 18 month old is not unexpected. Still, though, for us it was a shock.
Ironically mid last year I went to see a neurologist for a variety of very minor symptoms (nothing like seizures, more things like memory loss, not processing things people say to me, some other things like that). I postponed any follow up since it's all out of pocket, it's money I don't have, and it's not affecting me in a significant way.
Again I appreciate the info.
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-27-16, 03:03 PM
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CDR, hang in there, everyone just needs to give it time. Its really good that they feel like she is improving rapidly. It's hard when personality, intelligence, memory etc are affected but these are very high-order brain functions, it takes a really normal brain to pull this stuff off just right. Her brain needs time to unscramble itself. It's very likely if her docs are seeing an improving trend, you all will continue to see that trend for the foreseeable future.
She very likely had a CT right away, to rule-out a stroke. And then also an MRI to rule-out everything else.
Despite the cost of your follow-up with your neurologist, it really needs to happen now. He/she needs to revisit your symptoms in light of this new family history of seizures. Important stuff, don't neglect your health. Let us know if we need to have a BF bake sale to contribute to the cause. Lord knows you've given these BF schmoes so much racing advice over the years, the least they could do is bake a cupcake on your behalf.
She very likely had a CT right away, to rule-out a stroke. And then also an MRI to rule-out everything else.
Despite the cost of your follow-up with your neurologist, it really needs to happen now. He/she needs to revisit your symptoms in light of this new family history of seizures. Important stuff, don't neglect your health. Let us know if we need to have a BF bake sale to contribute to the cause. Lord knows you've given these BF schmoes so much racing advice over the years, the least they could do is bake a cupcake on your behalf.
05-27-16, 03:48 PM
Senior Member
CDR, hang in there, everyone just needs to give it time. Its really good that they feel like she is improving rapidly. It's hard when personality, intelligence, memory etc are affected but these are very high-order brain functions, it takes a really normal brain to pull this stuff off just right. Her brain needs time to unscramble itself. It's very likely if her docs are seeing an improving trend, you all will continue to see that trend for the foreseeable future.
She very likely had a CT right away, to rule-out a stroke. And then also an MRI to rule-out everything else.
Despite the cost of your follow-up with your neurologist, it really needs to happen now. He/she needs to revisit your symptoms in light of this new family history of seizures. Important stuff, don't neglect your health. Let us know if we need to have a BF bake sale to contribute to the cause. Lord knows you've given these BF schmoes so much racing advice over the years, the least they could do is bake a cupcake on your behalf.
She very likely had a CT right away, to rule-out a stroke. And then also an MRI to rule-out everything else.
Despite the cost of your follow-up with your neurologist, it really needs to happen now. He/she needs to revisit your symptoms in light of this new family history of seizures. Important stuff, don't neglect your health. Let us know if we need to have a BF bake sale to contribute to the cause. Lord knows you've given these BF schmoes so much racing advice over the years, the least they could do is bake a cupcake on your behalf.
She's doing really well, based on what she was like a few days ago. She's speaking pretty normally. I was steeling myself for the 2-3 minute pause when I said hi but was shocked when she responded a half second later. She sounds herself as well, just really, really, really tired (due to the medication). I think the phone was slipping down, meaning her arm was getting tired, but other than that she seemed pretty good.
I avoided asking her about her kids or what she remembered about them. She did tell me that in the hospital she tried really hard to remember what home looked like. All she could remember was Belgium and she lived there 20-25 years ago (early-mid 90s - I stayed with my parents when I went and did the races in Belgium, she and my little brother lived there). She really couldn't remember Japan (3 years), Chicago (10 years), and definitely not CA (about 10 years I think). She said that her house in CA doesn't look familiar. She's also forgotten all the day-to-day stuff, like what time the kids go to school and stuff like that.
She did dial her own phone. She says that now she'll get into an app but then not know what to do, so it's getting better.
She's not reading, not on a computer at all. She said that she wants to figure out the computer so she can email a friend. She's been composing an email in her head for a few days now. I asked if someone is showing her pictures of stuff and she was like "Oh, that's a good idea".
Lots of people coming and going, therapists and such.
In terms of personality and such she seems the same. I don't know if anything is different physically in person but to hear my sister sound like my sister, that was a huge relief.
I'm going to call my doctor. My sister going through this and the Missus telling me I had seizures during my sleep...
Thanks again.
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-27-16, 04:30 PM
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That's great news that she's on the right track.
05-27-16, 05:33 PM
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@carpediemracing, 
Sounds like things are moving in the right direction.
It takes a little while to accommodate to the sedative side effects of the seizure meds, depending on what they have her on. Tired is normal & it won't last forever.
Sounds like things are moving in the right direction.
It takes a little while to accommodate to the sedative side effects of the seizure meds, depending on what they have her on. Tired is normal & it won't last forever.
05-27-16, 08:44 PM
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Hang in CDR.
05-27-16, 09:23 PM
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Didn't have time to post until now but yes, it was a huge relief to hear her speak and stuff. This kind of stuff puts things in perspective, that's for sure.
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-28-16, 11:05 AM
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Good to hear. I hope she keeps improving.
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05-29-16, 01:44 PM
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I went over and spectated the local MTB race. This is a pro race that happens to be 5 minutes down the trail behind my house. My god, what a total suffer fest. The course is technical and somewhat exposed in the sense of sharp rocks to fall on and steeps to fall off of, and it is crazy hot and dusty today. Watched a number of strong northeast road racers (mostly racing cat 1 I think, but on course at the same time as the pros) just get chewed up by the guys with technical skills. The winner (local guy, pro cross racer) led wire to wire and I think put 10 minutes into 2nd place. Really an impressive amount of suffering involved by everybody.
05-29-16, 03:24 PM
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There was a Bahati Foundation guy in my race today. Dude was being way too aggressive considering the race was a 4/5. If you are trying to move up in the middle of the field, don't force your way and yell when trying to squeeze between two guys when there isn't room. I ended up moving over so he wouldn't crash into me and the guy next to me.
05-31-16, 06:08 AM
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So this past week and next weekend are supposed to be my target races except I'm feeling terrible (headache/dizzy/fever?), did awful over the weekend. The question is: do I stay off my bike until the next race on Saturday, possibly losing fitness but hopefully actually being competitive?
05-31-16, 06:24 AM
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Rest.
05-31-16, 06:34 AM
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So this past week and next weekend are supposed to be my target races except I'm feeling terrible (headache/dizzy/fever?), did awful over the weekend. The question is: do I stay off my bike until the next race on Saturday, possibly losing fitness but hopefully actually being competitive?
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"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
"...during the Lance years, being fit became the No. 1 thing. Totally the only thing. It’s a big part of what we do, but fitness is not the only thing. There’s skills, there’s tactics … there’s all kinds of stuff..." Tim Johnson
05-31-16, 11:49 AM
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I'm seriously tempted to buy a Stromer electric bike. They're so much fun to ride around town.
05-31-16, 12:06 PM
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They're a great idea. Put a luggage thing on it for groceries and I'd probably only touch my car to get to and from races.
05-31-16, 12:16 PM
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A buddy has talked about getting a bike like that with a rack or trailer to hold his golf bag. There's a course he plays where 80% of the route could be done on the bike path.