How can I properly time my boyfriend's epileptic seizures?
May 22, 2006 5:48 PM Subscribe
My boyfriend has epilepsy. So far I've only witnessed two seizures (tonic-clonic, or what they used to call grand mal). While I felt mostly prepared for them (I'd done a lot of internet research) I found timing them quite difficult because while the beginning was distinct, the end wasn't.
His seizures seem to start with rigidity and convulsing, which lasts a minute or so, but then he falls into loud, gutteral, heavy breathing. The 'in' breath sounds a bit like a loud, ragged, snore, and the 'out' breath is a loud raspberry. In all my reading online, I found only one reference to this breathing, on an epilepsy forum: "The loud snoring is called stenorous breathing and it's when the trachea is collapsing or obstructed, and that's dangerous. Turning blue or purpole means a serious lack of oxygen content in your blood stream, which can result in brain damage and even death". This breathing goes on for a while and then tapers off.
So I guess I have two questions:
1. Is this breathing normal when someone's having a seizure? Is it dangerous? Do we need to do something about it?
2. When is the seizure actually finished? The 'heavy breathing' phase seems to last a long time - five or six minutes - but it gets softer towards the end and then he just rolls over and falls asleep. I'm worried that I'll miss my cue to call an ambulance if he's in status epileptus (he's never gone into status epileptus, I don't think, though his seizures seem to be quite long).
Anyone here got any experience in this sort of thing? I will definitely be asking to go with him on his next appointment with the neurologist so I can ask questions, but that won't be for a few months.
His seizures seem to start with rigidity and convulsing, which lasts a minute or so, but then he falls into loud, gutteral, heavy breathing. The 'in' breath sounds a bit like a loud, ragged, snore, and the 'out' breath is a loud raspberry. In all my reading online, I found only one reference to this breathing, on an epilepsy forum: "The loud snoring is called stenorous breathing and it's when the trachea is collapsing or obstructed, and that's dangerous. Turning blue or purpole means a serious lack of oxygen content in your blood stream, which can result in brain damage and even death". This breathing goes on for a while and then tapers off.
So I guess I have two questions:
1. Is this breathing normal when someone's having a seizure? Is it dangerous? Do we need to do something about it?
2. When is the seizure actually finished? The 'heavy breathing' phase seems to last a long time - five or six minutes - but it gets softer towards the end and then he just rolls over and falls asleep. I'm worried that I'll miss my cue to call an ambulance if he's in status epileptus (he's never gone into status epileptus, I don't think, though his seizures seem to be quite long).
Anyone here got any experience in this sort of thing? I will definitely be asking to go with him on his next appointment with the neurologist so I can ask questions, but that won't be for a few months.
So you're saying you should somehow try and clear the airway? In my experience, also with my epileptic boyfriend, his teeth are clamped far too tight for anything like that. I broke many a nail trying to keep him from biting off the tip of his tongue.
posted by wuzandfuzz at 6:21 PM on May 22, 2006
posted by wuzandfuzz at 6:21 PM on May 22, 2006
No, leave the airway alone. Don't put anything near or into the person's mouth or nose.
Just roll a person onto their side and let them clear their own airway naturally, by coughing and making rattly noises and spitting stuff out. The noises are alarming but the person will eventually get the job done.
Holding someone flat onto their back is one mistake that is sometimes made; it's hard to cough anything out in that position, as it just falls right back down the gullet. Also do not sit on someone and drive their face into the ground, as that can make a person smother. Roll them onto their side and make sure nothing is nearby the nose or mouth that could possibly obstruct those important orifices.
posted by ikkyu2 at 6:46 PM on May 22, 2006 [1 favorite]
Just roll a person onto their side and let them clear their own airway naturally, by coughing and making rattly noises and spitting stuff out. The noises are alarming but the person will eventually get the job done.
Holding someone flat onto their back is one mistake that is sometimes made; it's hard to cough anything out in that position, as it just falls right back down the gullet. Also do not sit on someone and drive their face into the ground, as that can make a person smother. Roll them onto their side and make sure nothing is nearby the nose or mouth that could possibly obstruct those important orifices.
posted by ikkyu2 at 6:46 PM on May 22, 2006 [1 favorite]
Don't ever try to stop someone from biting down during a seizure, by the way. The motive is admirable, but the results can be really bad. People have choked to death on the bitten-off fingers of well-meaning helpers, in the aftermath of a seizure.
Just leave the mouth and nose area alone. I think I've said that about 10 times now.
posted by ikkyu2 at 6:48 PM on May 22, 2006
Just leave the mouth and nose area alone. I think I've said that about 10 times now.
posted by ikkyu2 at 6:48 PM on May 22, 2006
Aha! 'Stertorous'! That explains why there was only the one Google result for 'stenorous': it's not a word.
Original poster here. Thanks, ikkyu2, for that advice. I didn't realise I should roll him into the recovery position during the seizure; I thought that was for afterwards. I've certainly never messed with his mouth or nose (my research had warned against that) though I did have to hold him up by the shoulder so he wouldn't fall out of bed. And he's heavy!
So the stertorous breathing means the business end of the seizure's over? That's a huge relief. I couldn't tell, since during that phase he's still unconscious and performing curiously automatic gestures.
posted by hot soup girl at 7:08 PM on May 22, 2006
Original poster here. Thanks, ikkyu2, for that advice. I didn't realise I should roll him into the recovery position during the seizure; I thought that was for afterwards. I've certainly never messed with his mouth or nose (my research had warned against that) though I did have to hold him up by the shoulder so he wouldn't fall out of bed. And he's heavy!
So the stertorous breathing means the business end of the seizure's over? That's a huge relief. I couldn't tell, since during that phase he's still unconscious and performing curiously automatic gestures.
posted by hot soup girl at 7:08 PM on May 22, 2006
Thanks for that information, ikkyu2. I wish basic care in such situations were common knowledge. I was sort of dating a woman last year who had a seizure 30 seconds after I walked through her front door. I had no idea what to do during the seizure, other than the most obvious (I lowered her to the floor, watched her carefully). My mom's an RN, so I immediately got on the phone and asked her if there was anything I should be watching for after the seizure ended. I also had to juggle two alarmed young children. That was fun.
But my main point is that it's awfully scary to have someone have a seizure and you have no clue whatsoever to do.
posted by Ethereal Bligh at 7:17 PM on May 22, 2006
But my main point is that it's awfully scary to have someone have a seizure and you have no clue whatsoever to do.
posted by Ethereal Bligh at 7:17 PM on May 22, 2006
As someone who has epilepsy, I was going to jump in here, but seems like ikkyu2 (who knows far more than I do) has covered the bases.
I'd just like to add that if something seems really REALLY wrong or it really seems like the seizure is taking too long, err on the side of caution. If for some reason he should stop breathing, you really want a professional (with oxygen masks) to be there.
Too bad you're all the way on the left coast, ikkyu2, I'm in the market for a neurologist ;)
posted by grapefruitmoon at 7:32 PM on May 22, 2006
I'd just like to add that if something seems really REALLY wrong or it really seems like the seizure is taking too long, err on the side of caution. If for some reason he should stop breathing, you really want a professional (with oxygen masks) to be there.
Too bad you're all the way on the left coast, ikkyu2, I'm in the market for a neurologist ;)
posted by grapefruitmoon at 7:32 PM on May 22, 2006
So the stertorous breathing means the business end of the seizure's over?
Usually, at least in my experience.
Seizures tend to be very 'stereotyped', which is to say that once you have seen a few of your boyfriend's typical seizures, you will have a better idea of the pattern they generally tend to follow.
posted by ikkyu2 at 7:33 PM on May 22, 2006
Usually, at least in my experience.
Seizures tend to be very 'stereotyped', which is to say that once you have seen a few of your boyfriend's typical seizures, you will have a better idea of the pattern they generally tend to follow.
posted by ikkyu2 at 7:33 PM on May 22, 2006
Thank you ikkyu2 for jumping on this right away, on the behalf of people with epilepsy everywhere.
And anonymous, thank you for being concerned and caring rather than alienated and scared. The world needs more partners like you, really.
I don't know how long your bf has had epilepsy, but if he (like me) has a protracted aura, he should have ample time to get himself someplace safe and into the rescue position, so just be there with him and let him know he's safe.
I do want to say that while YMMV, your boyfriend may be seriously depressed and overemotional after a generalized tonic-clonic seizure. In my experience, and based on what I've heard in the support groups, that seems to be a pretty common reaction. Just bare with him; the depression will pass, but it's pretty hard to see past, especially when he hurts all over from the seizing and all he wants to do is sleep.
Finally, a good rule of thumb is that any GTC that lasts five minutes or more is potentially status epilepticus and you should consider call 911 and/or get emergency help ASAP.
posted by wildeepdotorg at 7:48 PM on May 22, 2006
And anonymous, thank you for being concerned and caring rather than alienated and scared. The world needs more partners like you, really.
I don't know how long your bf has had epilepsy, but if he (like me) has a protracted aura, he should have ample time to get himself someplace safe and into the rescue position, so just be there with him and let him know he's safe.
I do want to say that while YMMV, your boyfriend may be seriously depressed and overemotional after a generalized tonic-clonic seizure. In my experience, and based on what I've heard in the support groups, that seems to be a pretty common reaction. Just bare with him; the depression will pass, but it's pretty hard to see past, especially when he hurts all over from the seizing and all he wants to do is sleep.
Finally, a good rule of thumb is that any GTC that lasts five minutes or more is potentially status epilepticus and you should consider call 911 and/or get emergency help ASAP.
posted by wildeepdotorg at 7:48 PM on May 22, 2006
Aside to grapefruitmoon: check out the Mass General Hospital epilepsy boards for referrals. Some of the folks are... eh (let's just say that a shared medical condition is all we have in common), but they know their stuff and they give good epileptologist referrals.
I found my guy in DC through those folks.
posted by wildeepdotorg at 7:51 PM on May 22, 2006 [1 favorite]
I found my guy in DC through those folks.
posted by wildeepdotorg at 7:51 PM on May 22, 2006 [1 favorite]
Is it incredibly rude for me to tag on to this question with some particulars about what happened to me? I am curious about some details in my particular case, the answers to which may (or, of course, may not) add information that the original poster or others could use. Here's the deal:
I have had exactly one (1) 'grand mal' seizure, and it was ten years ago (at age 36). I had no idea what was going on (of course), but a friend who was present whose mother is epileptic noted detail for detail what was happening and knew that that was what was going down.
At the time, I had no health insurance, but I did have a friend whose husband was a general physician. He gave me a few neurological tests at my home (I learned that I cannot stand on one foot with my eyes closed without toppling over), and pulled some strings to get me admitted to the hospital (through the ER) for extensive tests. These included an 'open' MRI and even a spinal tap. Nothing. My brain looked perfectly normal to all of the staff. They eventually sent me home saying something to the effect of 'when all the tests come back normal, we generally say "Everyone's entitled to ONE unexplained grand mal"', and that I should hope for the best.
As I said, it's been ten years now, but some part of me keeps thinking this could happen again. Could it? Could I be epileptic and not know it? Does the one seizure mean I AM epileptic? Am I a danger to others if, say, I'm driving a car? Like I said, it's never happened again, but it sure is the scariest thing that's ever happened to me.
(If the information is useful, I do think I have sleep apnia, at least that's what everyone who's ever heard me sleep says. I mention this because of the breathing issues described above.)
Thanks for any opinions, and sorry again if this is an inappropriate tag-on.
posted by trip and a half at 8:08 PM on May 22, 2006
I have had exactly one (1) 'grand mal' seizure, and it was ten years ago (at age 36). I had no idea what was going on (of course), but a friend who was present whose mother is epileptic noted detail for detail what was happening and knew that that was what was going down.
At the time, I had no health insurance, but I did have a friend whose husband was a general physician. He gave me a few neurological tests at my home (I learned that I cannot stand on one foot with my eyes closed without toppling over), and pulled some strings to get me admitted to the hospital (through the ER) for extensive tests. These included an 'open' MRI and even a spinal tap. Nothing. My brain looked perfectly normal to all of the staff. They eventually sent me home saying something to the effect of 'when all the tests come back normal, we generally say "Everyone's entitled to ONE unexplained grand mal"', and that I should hope for the best.
As I said, it's been ten years now, but some part of me keeps thinking this could happen again. Could it? Could I be epileptic and not know it? Does the one seizure mean I AM epileptic? Am I a danger to others if, say, I'm driving a car? Like I said, it's never happened again, but it sure is the scariest thing that's ever happened to me.
(If the information is useful, I do think I have sleep apnia, at least that's what everyone who's ever heard me sleep says. I mention this because of the breathing issues described above.)
Thanks for any opinions, and sorry again if this is an inappropriate tag-on.
posted by trip and a half at 8:08 PM on May 22, 2006
Trip and a half, what you experienced is called 'FUS', or "first unprovoked seizure," by those of us in the field.
Epilepsy is 'recurrent unprovoked seizures,' which means that everyone with epilepsy started by having a FUS, and then had a second unprovoked seizure (and, often, more).
First unprovoked seizure is a strong risk factor for the development of epilepsy later in life, but it does not guarantee the later development of epilepsy. Some folks do indeed suffer a single epileptic seizure during their lifetime and nothing further ever comes of it.
The AAN guidelines consider that a 3 to 6 months seizure-free period is sufficient to recommend driver's license reinstatement, if the recommending physician doesn't think there are other reasons to expect the seizures to recur. Most states' DMVs will accept a physician's recommendation in accordance with these guidelines.
posted by ikkyu2 at 8:30 PM on May 22, 2006
Epilepsy is 'recurrent unprovoked seizures,' which means that everyone with epilepsy started by having a FUS, and then had a second unprovoked seizure (and, often, more).
First unprovoked seizure is a strong risk factor for the development of epilepsy later in life, but it does not guarantee the later development of epilepsy. Some folks do indeed suffer a single epileptic seizure during their lifetime and nothing further ever comes of it.
The AAN guidelines consider that a 3 to 6 months seizure-free period is sufficient to recommend driver's license reinstatement, if the recommending physician doesn't think there are other reasons to expect the seizures to recur. Most states' DMVs will accept a physician's recommendation in accordance with these guidelines.
posted by ikkyu2 at 8:30 PM on May 22, 2006
Thanks, ikkyu2!
That does sound like what they told me at the time.
Like I said, it's been ten years now, so maybe I am just one of those who just have the one seizure... I guess it's just wait and see now, huh? Fortunately, I don't have a car and don't drive very often.
posted by trip and a half at 9:05 PM on May 22, 2006
That does sound like what they told me at the time.
Like I said, it's been ten years now, so maybe I am just one of those who just have the one seizure... I guess it's just wait and see now, huh? Fortunately, I don't have a car and don't drive very often.
posted by trip and a half at 9:05 PM on May 22, 2006
In my own defense (probably being too sensitive to comments that were meant for everyone in general rather than just myself) I've never tried to stick my fingers in his mouth during the seizure just completely after when he's still biting down.
posted by wuzandfuzz at 1:36 AM on May 23, 2006
posted by wuzandfuzz at 1:36 AM on May 23, 2006
Well, don't do that. I don't know how much clearer I can be on the topic.
posted by ikkyu2 at 4:59 AM on May 23, 2006
posted by ikkyu2 at 4:59 AM on May 23, 2006
I had a seizure in a travel agent's office once. When I later went back to pick up the tickets he told me how scary it had been for him. I was nonplussed. He did tell me the oddest thing I had ever heard in reference to a seizure though: he said that he put a spoon in my hand because he had heard that holding something metal could help end the seizure.
We've all heard the old "spoon in the mouth to keep from biting/swallowing tongue" thing -- which is WRONG, thank you ikkyu2! -- but spoon in the hand? I'd never heard that before.
By the way, I'm epileptic and as long as I'm taking my meds (which I hate, but what are you going to do) I don't seize. Are there many people with seizure disorders who can't be medicated and just have to live with the seizures? That would certainly suck. Good on you, OP, for sticking with your boyfriend.
posted by The Bellman at 11:12 AM on May 23, 2006
We've all heard the old "spoon in the mouth to keep from biting/swallowing tongue" thing -- which is WRONG, thank you ikkyu2! -- but spoon in the hand? I'd never heard that before.
By the way, I'm epileptic and as long as I'm taking my meds (which I hate, but what are you going to do) I don't seize. Are there many people with seizure disorders who can't be medicated and just have to live with the seizures? That would certainly suck. Good on you, OP, for sticking with your boyfriend.
posted by The Bellman at 11:12 AM on May 23, 2006
Was your travel agent Indian? It's common in India to put something metal that can make clinking sounds - spoons, a ring of keys - into a seizing person's hand there; 79% of people interviewed in Kerala state said they would do this. I don't know what the origin of this practice is.
There are many people whose seizures can't be controlled with medicines. For some of them, brain surgery is an option; others "just have to live with the seizures," as you say.
posted by ikkyu2 at 11:46 AM on May 23, 2006
There are many people whose seizures can't be controlled with medicines. For some of them, brain surgery is an option; others "just have to live with the seizures," as you say.
posted by ikkyu2 at 11:46 AM on May 23, 2006
Yes. I was going to say he was Indian but I thought it couldn't POSSIBLY be relevant. I actually considered whether to put it in or not. That's why I love AskMe.
posted by The Bellman at 11:48 AM on May 23, 2006
posted by The Bellman at 11:48 AM on May 23, 2006
Good show ikkyu2. I have worked in the past, professionally, with people who have epilepsy. There is nothing I can add to what has been said.
Fun side fact, i had a friend with epilepsy awhile back. the medication he took for it, caused his hair to change (from straight to very wavy I think).
posted by edgeways at 1:14 PM on May 23, 2006
Fun side fact, i had a friend with epilepsy awhile back. the medication he took for it, caused his hair to change (from straight to very wavy I think).
posted by edgeways at 1:14 PM on May 23, 2006
Thanks to wildeepdotorg for the recommendation, unfortunately though, I can't actually get a neurologist...
Which brings me to The Bellman's point about just having to live with seizures. I am currently sans health insurance and so, neurologists and anti-convulsants are completely out of the question. I take tranquilizers at night occasionally as my seizures are most often in my sleep (and also getting 9+ hours sleep is the best way I've found to prevent seizures during the day), but I still have them. The best I can do is one nocturnal seizure every two weeks or so. And don't think that they're any more fun because they'r ein my sleep - I have a BITCH of a time trying to wake up the next day, sometimes I end up asleep for 16 hours.
(Yes, I'm looking for a job with benefits, but uh, private health insurance is never ever gonna happen.)
posted by grapefruitmoon at 4:24 PM on May 23, 2006
Which brings me to The Bellman's point about just having to live with seizures. I am currently sans health insurance and so, neurologists and anti-convulsants are completely out of the question. I take tranquilizers at night occasionally as my seizures are most often in my sleep (and also getting 9+ hours sleep is the best way I've found to prevent seizures during the day), but I still have them. The best I can do is one nocturnal seizure every two weeks or so. And don't think that they're any more fun because they'r ein my sleep - I have a BITCH of a time trying to wake up the next day, sometimes I end up asleep for 16 hours.
(Yes, I'm looking for a job with benefits, but uh, private health insurance is never ever gonna happen.)
posted by grapefruitmoon at 4:24 PM on May 23, 2006
grapefruitmoon, your profile suggests you're a parent. Doesn't that make you eligible for RIte Care? And if not, have you checked out the Rhode Island Free Clinic?
All you really need is a doc and a scrip; the older anticonvulsants like Dilantin and Tegretol can be had for $12 a month or thereabouts.
posted by ikkyu2 at 4:45 PM on May 23, 2006
All you really need is a doc and a scrip; the older anticonvulsants like Dilantin and Tegretol can be had for $12 a month or thereabouts.
posted by ikkyu2 at 4:45 PM on May 23, 2006
ikkyu2: I'm not a parent, I'm a teacher. Easy mistake to make though.
I don't qualify for any state benefits or assistance because my husband makes a fair amount of money. I don't even qualify for a fee reduction at the clinic I go to for primary care! It blows.
I've got a good doctor though and the minute I'm ready to go back to a neuro, I'm sure I'll get a good referral. Problem is that I have a really weird diagnosis/history and I've been put on every med in the book and none have worked thus far, so if I were to take something, it would definitely be a newer (and more expensive) drug.
(And yeah, it blows that if I did have kids, I'd definitely qualify for assistance. I want kids, but having one right now would be really irresponsible since I don't have my seizures under control! Catch 22!)
posted by grapefruitmoon at 5:04 PM on May 23, 2006
I don't qualify for any state benefits or assistance because my husband makes a fair amount of money. I don't even qualify for a fee reduction at the clinic I go to for primary care! It blows.
I've got a good doctor though and the minute I'm ready to go back to a neuro, I'm sure I'll get a good referral. Problem is that I have a really weird diagnosis/history and I've been put on every med in the book and none have worked thus far, so if I were to take something, it would definitely be a newer (and more expensive) drug.
(And yeah, it blows that if I did have kids, I'd definitely qualify for assistance. I want kids, but having one right now would be really irresponsible since I don't have my seizures under control! Catch 22!)
posted by grapefruitmoon at 5:04 PM on May 23, 2006
As an epileptic, I'd like to once again thank ikkyu2 for all the considered knowledge he posts on AskMe (and Wikipedia, the entry on epliepsy benefited enormously from his participation).
posted by samh23 at 10:39 PM on May 23, 2006
posted by samh23 at 10:39 PM on May 23, 2006
OP, back again. It boggles my brain that you need private health insurance to get anti-convulsants for epilepsy in the US (I'm in Australia, and my boyfriend - well, fiance actually - is in the UK). I think that's just terrible.
My boy takes Dilantin, but for the past year and a half has been having GTC seizures once a month or so. Before that he was seizure-free for two years. His seizures seem to be triggered by lack of sleep or a surfeit of beer, but lately he's been avoiding both those triggers and is still having them. One neurologist put him Tegretol briefly last year, but then another took him off again; not sure why. These are all questions I will be asking the doctors when I get a chance.
Good on you, OP, for sticking with your boyfriend.
Well, we all have our complications, don't we? Some are just more visible than others. Plus, he's ace.
posted by hot soup girl at 11:50 PM on May 23, 2006
My boy takes Dilantin, but for the past year and a half has been having GTC seizures once a month or so. Before that he was seizure-free for two years. His seizures seem to be triggered by lack of sleep or a surfeit of beer, but lately he's been avoiding both those triggers and is still having them. One neurologist put him Tegretol briefly last year, but then another took him off again; not sure why. These are all questions I will be asking the doctors when I get a chance.
Good on you, OP, for sticking with your boyfriend.
Well, we all have our complications, don't we? Some are just more visible than others. Plus, he's ace.
posted by hot soup girl at 11:50 PM on May 23, 2006
ikkyu2 - I'd like to tag on a question to this AskMe as well. My husband started having tonic-clonic seizures not too long before we were married in June 2001.
The doctor in Fort Worth put him on Keppra which reduced the number of seizures to about three per year. We moved to Houston and the doctor there kept him on the same drug. We moved to Albuquerque in 2005 and his seizures got worse. We thought it might be because of the altitude? The doctor in didn't seem concerned and didn't change his medicine.
In June 2005, he had a seizure (unwitnessed) in the middle of the night and died. I found him on the sofa the following morning. As soon as I saw him, I knew what had happened.
My question is about the doctors. They never mentioned that anything like this could happen. I supposed that we should have done more research, but it's been pretty difficult to find anything about SUDEP even though I know what to look for now. Do you think that the doctors should have some responsibility to tell patients the risks of epilepsy even when they're taking their medicine and doing everything they're supposed to do?
posted by moosedogtoo at 9:13 AM on May 24, 2006
The doctor in Fort Worth put him on Keppra which reduced the number of seizures to about three per year. We moved to Houston and the doctor there kept him on the same drug. We moved to Albuquerque in 2005 and his seizures got worse. We thought it might be because of the altitude? The doctor in didn't seem concerned and didn't change his medicine.
In June 2005, he had a seizure (unwitnessed) in the middle of the night and died. I found him on the sofa the following morning. As soon as I saw him, I knew what had happened.
My question is about the doctors. They never mentioned that anything like this could happen. I supposed that we should have done more research, but it's been pretty difficult to find anything about SUDEP even though I know what to look for now. Do you think that the doctors should have some responsibility to tell patients the risks of epilepsy even when they're taking their medicine and doing everything they're supposed to do?
posted by moosedogtoo at 9:13 AM on May 24, 2006
I don't want to speak for ikkyu2 here, and I won't, but I think you might ought not expect an answer to this question. As a doctor himself, it seems to me to that there's not a good way he could answer this question. Of course a doctor should discuss all the possibilities with a patient about a serious disease. You can't expect ikkyu2 to say otherwise. Even so, there is the problem of the word "all" in that sentence. It has to be the case that there are possible outcomes that are so unlikely that it doesn't make sense to discuss them because there's about 500 other similarly unlikely outcomes. So when we pretty much agree that "all possibilities should be discussed" we're not really talking about all, we're talking about all possibilities within some limit of likliehood. That being the case, were ikkyu2 to engage you on this, then you'd be asking him to make a judgment of what is inside those limits and what's outside those limits in the case of your husband, which he has no experience with. And all of this implicitly has malpractice consequences and pretty much any doctor at any time is wise to stay away from making such statements about another doctor's practice. I personally think that it's fair, and professionally a responsibility, for another doctor who is also knowledgable and involved in the patient's care to be forthright with his/her opinions when something is disputed. But that's a far cry from some random doctor on the internet discussing the choices of doctor they've never met about a patient they know almost nothing about.
It may have been best that I not make this comment at all; but yours is a very sad story (and I happen to live in Albuquerque, by the way) and it breaks my heart to see your obviously anguished question just sit there with no response.
I have a genetic illness, I've spent my life dealing with illness and doctors and hospitals. And I am 120% in agreement with you that patients and families should be more fully informed. On the other hand, I'm a bright person with a lot of experience as a patient and as a family member of a patient and so I have the proper context to somewhat accurately evaluate the types of information that I desire. I've observed other patients and families of patients that simply didn't have the context to evaluate a huge amount of information from the doctor—in fact, I've observed doctors with poor bedside manner providing far too much distracting information to patients and families who are overwhelmed by it.
The one thing I try to talk about with friends and others who are not that experienced with doctors and the health care system is that, for better or worse and simply because it has to be that way, patients are very close to being co-equals with their doctors in their care. Medicine is such an ambiguous science and, at least at the present time, doctors and other health care professionals still rely a great deal both on a patient's own reports about his own body and his experiences, as well as a patient's willingness and ability to care for himself in the specific of treatment to the larger context of their own life experience with their illness. What I'm saying is that a lot of responsibility—not in the sense of "eat your vegatables" but in the sense of "there's no avoiding it"—still lies with the patient. Now it's true that there's a lot of doctors that are uncomfortable with inquisitive patients and patients who are otherwise very active in their own health care. But it's my opinion that they're neglecting some of their responsibilities as a doctor because of the reasons I mention earlier...a doctor truly cannot treat a patient without the patient's cooperation. And this means, again for better or worse, a patient's active cooperation. Good doctors know how to encourage patients to take charge of their own health and their own health care. Sorry, that's just my standard spiel and it seemed somewhat appropriate.
But in the end, what we're really talking about here is a tragedy—your personal tragedy. And I cannot imagine what it would be like to love and marry someone and then to lose them unexpectedly, as you lost your husband. It's a sad and frightening story to me just as words over the Internet. I just want to tell you that I'm deeply sorry for your loss. It is an awful thing you've gone through.
posted by Ethereal Bligh at 12:54 PM on May 24, 2006 [1 favorite]
It may have been best that I not make this comment at all; but yours is a very sad story (and I happen to live in Albuquerque, by the way) and it breaks my heart to see your obviously anguished question just sit there with no response.
I have a genetic illness, I've spent my life dealing with illness and doctors and hospitals. And I am 120% in agreement with you that patients and families should be more fully informed. On the other hand, I'm a bright person with a lot of experience as a patient and as a family member of a patient and so I have the proper context to somewhat accurately evaluate the types of information that I desire. I've observed other patients and families of patients that simply didn't have the context to evaluate a huge amount of information from the doctor—in fact, I've observed doctors with poor bedside manner providing far too much distracting information to patients and families who are overwhelmed by it.
The one thing I try to talk about with friends and others who are not that experienced with doctors and the health care system is that, for better or worse and simply because it has to be that way, patients are very close to being co-equals with their doctors in their care. Medicine is such an ambiguous science and, at least at the present time, doctors and other health care professionals still rely a great deal both on a patient's own reports about his own body and his experiences, as well as a patient's willingness and ability to care for himself in the specific of treatment to the larger context of their own life experience with their illness. What I'm saying is that a lot of responsibility—not in the sense of "eat your vegatables" but in the sense of "there's no avoiding it"—still lies with the patient. Now it's true that there's a lot of doctors that are uncomfortable with inquisitive patients and patients who are otherwise very active in their own health care. But it's my opinion that they're neglecting some of their responsibilities as a doctor because of the reasons I mention earlier...a doctor truly cannot treat a patient without the patient's cooperation. And this means, again for better or worse, a patient's active cooperation. Good doctors know how to encourage patients to take charge of their own health and their own health care. Sorry, that's just my standard spiel and it seemed somewhat appropriate.
But in the end, what we're really talking about here is a tragedy—your personal tragedy. And I cannot imagine what it would be like to love and marry someone and then to lose them unexpectedly, as you lost your husband. It's a sad and frightening story to me just as words over the Internet. I just want to tell you that I'm deeply sorry for your loss. It is an awful thing you've gone through.
posted by Ethereal Bligh at 12:54 PM on May 24, 2006 [1 favorite]
Moosedogtoo - I am so sorry to hear your story. It breaks my heart.
I often ask my fellow neurologists whether they counsel their patients about SUDEP. Why? Well, because I guess I don't always know when to bring it up myself.
Is it in the back of my mind every time I'm speaking to a patient? Yes.
Do I think there's anything to gain by saying to a person, "By the way, you're doing everything I told you, and you're still having seizures, and that means that you could drop dead at any moment! Come back and see me in 6 months if you're still alive!" Actually, I think that's a pretty shitty thing to say to someone. The amount of harm a statement like that can do is incalculable, especially to someone who already is struggling to deal with epilepsy, medication side effects, and the depression and cognitive problems that go along with the meds and the diagnosis.
Can a statement like that do any good? In cases where people tell me, "I'm thinking about going off seizure meds entirely. So what if I have 20 seizures a year instead of 2," that person is going to hear an earful about SUDEP and exactly what I think on the topic.
When people ask me about SUDEP, I generally tell them what I know about it. It's not a secret.
But do I bludgeon patients with yet more frightening and terrible truths when I have no effective way to ameliorate them? Not always.
Take good care of yourself - I can only imagine that the hurting hasn't stopped yet.
posted by ikkyu2 at 8:06 PM on May 24, 2006 [1 favorite]
I often ask my fellow neurologists whether they counsel their patients about SUDEP. Why? Well, because I guess I don't always know when to bring it up myself.
Is it in the back of my mind every time I'm speaking to a patient? Yes.
Do I think there's anything to gain by saying to a person, "By the way, you're doing everything I told you, and you're still having seizures, and that means that you could drop dead at any moment! Come back and see me in 6 months if you're still alive!" Actually, I think that's a pretty shitty thing to say to someone. The amount of harm a statement like that can do is incalculable, especially to someone who already is struggling to deal with epilepsy, medication side effects, and the depression and cognitive problems that go along with the meds and the diagnosis.
Can a statement like that do any good? In cases where people tell me, "I'm thinking about going off seizure meds entirely. So what if I have 20 seizures a year instead of 2," that person is going to hear an earful about SUDEP and exactly what I think on the topic.
When people ask me about SUDEP, I generally tell them what I know about it. It's not a secret.
But do I bludgeon patients with yet more frightening and terrible truths when I have no effective way to ameliorate them? Not always.
Take good care of yourself - I can only imagine that the hurting hasn't stopped yet.
posted by ikkyu2 at 8:06 PM on May 24, 2006 [1 favorite]
Ikkyu2 - thanks for taking the time to respond. I do see your point. I guess I wouldn't have wanted the doctor to make abig deal of it since Nick was already having a hard enough time with being forced to take medicine every single day, twice a day.
It's been almost a year now. The good days are really good and the bad ones are really bad. I just wish things had been different.
Thanks again for your insight.
posted by moosedogtoo at 8:21 PM on May 24, 2006
It's been almost a year now. The good days are really good and the bad ones are really bad. I just wish things had been different.
Thanks again for your insight.
posted by moosedogtoo at 8:21 PM on May 24, 2006
Moosedogtoo, I am so sorry for your loss. In preparing to marry the man I love, I have from time to time imagined myself in your situation - but even so, I cannot really imagine your pain. I am so, so sorry.
I was recently sent this link via an epilepsy mailing list, which discusses whether doctors ought to spell out the dangers of SUDEP to epilepsy patients when they're first diagnosed, or just if the treatment's not workng (ie. if the patient wants to stop taking their medication, as mentioned in ikkyu2's example):
The researchers explained that substantial debate surrounds the issue of whether and when to discuss the increased risk of premature death in people with epilepsy. While it is accepted that doctors have a responsibility to fully discuss any risks associated with a condition and its treatment, some have argued that the patient has a right not to know. Most people with epilepsy can become seizure-free with the right treatment and, therefore, would not be at increased risk of premature death from their epilepsy. The researchers added that giving information about risk to life from seizures has the potential to cause harm, for example through unnecessary anxiety.
I am glad I found out about SUDEP through my own research; my fiance and I have never discussed it, though he did mention it once so I gather his last neurologist had a word with him when his seizures started up again. I'm loathe to broach it with him, and won't unless the doctor suggests it: I don't want to pathologise my beloved, who is in every other way heathy. But like I said, I'm glad I found out about the risks before marrying him. It won't soften the blow - nothing could, really - if something happens, but I feel that I am at least taking this responsibility on with open eyes. And he's absolutely worth the risk of terrible heartbreak. There are no guarantees for anyone, after all: I could get hit by a bus tomorrow and he could live to be be so old they put him in the Guinness Book of World Records.
posted by hot soup girl at 1:09 AM on May 25, 2006 [1 favorite]
I was recently sent this link via an epilepsy mailing list, which discusses whether doctors ought to spell out the dangers of SUDEP to epilepsy patients when they're first diagnosed, or just if the treatment's not workng (ie. if the patient wants to stop taking their medication, as mentioned in ikkyu2's example):
The researchers explained that substantial debate surrounds the issue of whether and when to discuss the increased risk of premature death in people with epilepsy. While it is accepted that doctors have a responsibility to fully discuss any risks associated with a condition and its treatment, some have argued that the patient has a right not to know. Most people with epilepsy can become seizure-free with the right treatment and, therefore, would not be at increased risk of premature death from their epilepsy. The researchers added that giving information about risk to life from seizures has the potential to cause harm, for example through unnecessary anxiety.
I am glad I found out about SUDEP through my own research; my fiance and I have never discussed it, though he did mention it once so I gather his last neurologist had a word with him when his seizures started up again. I'm loathe to broach it with him, and won't unless the doctor suggests it: I don't want to pathologise my beloved, who is in every other way heathy. But like I said, I'm glad I found out about the risks before marrying him. It won't soften the blow - nothing could, really - if something happens, but I feel that I am at least taking this responsibility on with open eyes. And he's absolutely worth the risk of terrible heartbreak. There are no guarantees for anyone, after all: I could get hit by a bus tomorrow and he could live to be be so old they put him in the Guinness Book of World Records.
posted by hot soup girl at 1:09 AM on May 25, 2006 [1 favorite]
Moosedogtoo: I, too, am so sorry for your loss. I have had epilepsy for well over 20 years (is that accurate, ikkyu2, or have I always had it and just had my first seizure 20 years ago?) and I had never heard of SUDEP before. I was diagnosed as a teenager, and for several years I continued to have occasional seizures while doctors worked out my meds. During that time, no one mentioned it to me. I am sitting here, googling it, totally stunned that one day I could just not wake up. I've been seizure free for many years now, provided nothing screws up my meds (don't get me started about the idiot doctors who didn't tell me Lariam would give me a seizure--thereby ruining a once-in-a-lifetime chance to go photograph animals in Africa and landing me in the hospital) but does that mean I don't have to worry?
Shouldn't someone have mentioned this to me? I've made huge life decisions since then -- gotten married, had a kid etc. I wouldn't trade those decisions for anything else in the world and I hope my wife feels the same, but it would have been nice to be able to talk about it. Or would it? Maybe I'm glad I didn't know. . . Now I'm all confused.
posted by The Bellman at 9:46 AM on May 26, 2006 [1 favorite]
Shouldn't someone have mentioned this to me? I've made huge life decisions since then -- gotten married, had a kid etc. I wouldn't trade those decisions for anything else in the world and I hope my wife feels the same, but it would have been nice to be able to talk about it. Or would it? Maybe I'm glad I didn't know. . . Now I'm all confused.
posted by The Bellman at 9:46 AM on May 26, 2006 [1 favorite]
I think like hot soup girl said, that I could have been hit by a bus one day and Nick could have lived to be 100. I don't know what might have changed if we had known about SUDEP. I guess I would have tried to be sure that he came to bed at night instead of falling asleep in front of the TV in the living room.
The thing I'm the most angry about is that the doctors never changed his medicine. He was on Keppra which I've since learned is for partial onset seizures NOT tonic-clonic which is what Nick was having. Even when the seizures were getting more frequent here in Albuquerque (from 3 a year to 3 in a month) the doctor didn't mention anything about changing the medicine. We were in the process of finding a new doctor when he died. I used to trust doctors, but not so much anymore. I take everything they say with a large grain of salt and a lot of google research now.
Even if I had known exactly what was going to happen, I still would have married Nick. We had four wonderful years of marriage and I wouldn't trade that for anything.
posted by moosedogtoo at 10:08 AM on May 26, 2006
The thing I'm the most angry about is that the doctors never changed his medicine. He was on Keppra which I've since learned is for partial onset seizures NOT tonic-clonic which is what Nick was having. Even when the seizures were getting more frequent here in Albuquerque (from 3 a year to 3 in a month) the doctor didn't mention anything about changing the medicine. We were in the process of finding a new doctor when he died. I used to trust doctors, but not so much anymore. I take everything they say with a large grain of salt and a lot of google research now.
Even if I had known exactly what was going to happen, I still would have married Nick. We had four wonderful years of marriage and I wouldn't trade that for anything.
posted by moosedogtoo at 10:08 AM on May 26, 2006
See, now this is a can of worms.
The first thing to know is that if the seizures are fully controlled, the excess mortality associated with epilepsy fully goes away.
In America, If you take healthy adults 18-65 with refractory epilepsy (i.e., they're still having generalized seizures), the all-causes mortality is about 3 times that of Joe Average American 18-65 person. Much of the excess mortality is from accidental injury (car accidents, falls, drowning). Most of the rest of it is SUDEP - we think. By definition, the U in SUDEP stands for Unexplained, so if we have a good explanation of how someone died during an unwitnessed seizure, well, it's not really SUDEP now, is it?
The smart folks differ a lot on what SUDEP really is - i.e., we think there exists an explanation for it, or several; and we debate what that explanation might be. Leading contenders as far as I am concerned are airway obstruction, flash pulmonary edema (neurogenic or an effect of aspiration), or cardiac arrhythmia. All of the above have been witnessed to occur during seizures in closely monitored settings.
Finally, it's worth pointing out that Keppra is a broad-spectrum medication - it works for most seizure types - and that its FDA approval doesn't encompass all the ways that smart docs are now using it. It's not sensible to otherwise second-guess what a doc did in the past and I'm not going to try to do so. This stuff is tricky and uncertain business, and the right answer is not always obvious, nor even guaranteed to exist.
posted by ikkyu2 at 3:02 AM on May 27, 2006
The first thing to know is that if the seizures are fully controlled, the excess mortality associated with epilepsy fully goes away.
In America, If you take healthy adults 18-65 with refractory epilepsy (i.e., they're still having generalized seizures), the all-causes mortality is about 3 times that of Joe Average American 18-65 person. Much of the excess mortality is from accidental injury (car accidents, falls, drowning). Most of the rest of it is SUDEP - we think. By definition, the U in SUDEP stands for Unexplained, so if we have a good explanation of how someone died during an unwitnessed seizure, well, it's not really SUDEP now, is it?
The smart folks differ a lot on what SUDEP really is - i.e., we think there exists an explanation for it, or several; and we debate what that explanation might be. Leading contenders as far as I am concerned are airway obstruction, flash pulmonary edema (neurogenic or an effect of aspiration), or cardiac arrhythmia. All of the above have been witnessed to occur during seizures in closely monitored settings.
Finally, it's worth pointing out that Keppra is a broad-spectrum medication - it works for most seizure types - and that its FDA approval doesn't encompass all the ways that smart docs are now using it. It's not sensible to otherwise second-guess what a doc did in the past and I'm not going to try to do so. This stuff is tricky and uncertain business, and the right answer is not always obvious, nor even guaranteed to exist.
posted by ikkyu2 at 3:02 AM on May 27, 2006
Interesting information. As a member of the epilepsy club, I've often been asked by others what they can do if I have a seizure - and I've felt like the least equipped to reply. I had never been consoled on SUDEP either, even when making the choice to go subtherapeutic on my medications, but I don't know if it would make a difference or if it will make a difference to me now either.
posted by iamck at 6:12 PM on May 30, 2006
posted by iamck at 6:12 PM on May 30, 2006
This thread is closed to new comments.
During the time of the GTC, a person is not doing the usual things (like coughing, spitting, drooling) that they would usually do to keep the airway clear. Sometimes saliva, phlegm, or even regurgitated stomach contents enters the airway.
During a seizure, try to roll a person onto their side (the so-called rescue position), so that anything in their mouth or airway, such as saliva or regurgitated stomach contents, can drip out the side of their mouth. Don't flex or extend the neck; don't manipulate the chin; keep objects and fingers away from the person's nose and mouth. Never put anything in someone's mouth during a seizure.
I've noticed (in my work as a clinical epilepsy specialist) that one of the most common things to occur at the end of an epileptic seizure is what I call airway clearance. The breathing becomes what I call 'stertorous', what your site calls 'stenorous'. That just means that breathing in and out is creating a loud, ragged noise and there might be coughing, spitting, nose-wiping, or other behaviors that clear the airway of the stuff that's fallen into it during the seizure. Clearing the airway isn't dangerous; to the contrary, it's important so that regular breathing can go on. Elapsed time from the onset to the offset of a typical GTC is usually about two minutes. It's when the convulsive movements go on for more than about 5 minutes or so that it's time to think about calling an ambulance.
Once you hear all this funny noisy breathing, though, you can pretty much assume that the electrical activity of the epileptic seizure has stopped. Now you are in the 'post-ictal period'. It's usual to go to sleep after a seizure; it can also be usual to be confused or disoriented for a while (15-60 minutes is typical, though it can be shorter or longer.)
Please take a look at the Epilepsy Foundation website for more information. Your careful skills of observation and your obvious caring are just what's needed to help keep your boyfriend healthy and safe during a seizure; check out the good information on that website and you'll do fine.
posted by ikkyu2 at 6:15 PM on May 22, 2006 [12 favorites]