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Medical Forum / Diseases and Disorders / Epilepsy / March 2005SUDEP
As all the people I've heard of in the past that have died of SUDEP were young adults in their twenties, the most recent being James Hirst who sadly died at only 21 years old just before Christmas, it made me a little curious not just about SUDEP itself, but of the age you are at risk of it. As somebody who gets many different types of seizures, including the nocturnal ones, I was just wondering if anybody knows of, or has ever heard of, anyone who's ever died of SUDEP who was over 30. You must understand my concern as a 39 year old who wants to live to 109 years old. > As all the people I've heard of in the past that have died of SUDEP were > young adults in their twenties, the most recent being James Hirst who [quoted text clipped - 5 lines] > heard of, anyone who's ever died of SUDEP who was over 30. You must > understand my concern as a 39 year old who wants to live to 109 years old. A talk I saw at Toronto Ep. Convention about 1996, the presenters didn't indicate *any particular age. One of them wondered if the profile was of people who weren't controlled and might have had multiple seizures in their sleep without waking up -- status epilepticus? (similar to a Heart Fibrillation, but happening in the Brain, where the electric signals get randomized enough that they interfere with synchronizing things like Heart Rate and Breathing). Another presenter added that some of the people might have had multiple *undiagnosed conditions, e.g. Heart Conditions or Stroke injuries in addition to whichever seizure type they had. Naturally the trouble with this latter idea is that unless there was a medical test they could do (post death) to see if other conditions were present, they might just list it as 'unexplained' or 'heart failure', especially if they didn't know that a person might have already been diagnosed with seizures. They also added (again not easily testable) that some people not previously identified as having seizures, might be dropping into statistics on Stroke or Heart Attacks, when they might have been 'SUDEP' candidates too. (Those talks were ~8 years ago now, so there could easily be New Findings since that time, by the way. ) Unless someone else has some links they prefer (mine were all left behind on my olde computer), you could try a Google search http://google.com ? and search on SUDEP (that's Medic's name but it would need to be in the Subject or Text that way, to have google pull it in?), Or unexplaineddeath&seizures or unexplaineddeath&epilepsy. I don't know if the words have to be compressed like that around the & or if it will let you use spaces, I've always compressed them since that's what someone did on another newsgroup 4 years ago. IF you get e.g. 300 hits and want to refine the search you can add more &s so that ALL have to be present to have it bring in a smaller sample, so 'sudep&epilepsy&medications'. Google sorts the messages by what it thinks you are looking for, from Most Likely to Least Likely to match. I found it surprisingly good at that part whenever I've used it. So when you get to article no. 12 or 13 the content is less and less what I was searching for. /G. >>As all the people I've heard of in the past that have died of SUDEP were >>young adults in their twenties, the most recent being James Hirst who [quoted text clipped - 43 lines] > whenever I've used it. So when you get to article no. 12 or 13 the content > is less and less what I was searching for. /G. I had a bunch of questions on how a medical examiner (or appropriate official) could even suspect the cause of death was from SUDEP, and SOME of my questions were answered at this web site: http://www.emedicine.com/neuro/topic659.htm In a lot of locations, the coroner does not have a medical background, an autopsy is not always performed (am talking about deaths in the home), and so on. When some of my family members passed on, I was really confused at what the cause of death was determined to be (by a doctor, MA, or coroner) because that's not exactly what the family knew. I don't know if they still include secondary factors or medical conditions that contributed to death, but even on the old death certificates I've seen, some of that stuff was way off. Barb > I had a bunch of questions on how a medical examiner (or appropriate > official) could even suspect the cause of death was from SUDEP, and SOME > of my questions were answered at this web site: > http://www.emedicine.com/neuro/topic659.htm Thanks Guys, I found the websites you gave me very informative and interesting, in particularly the part on the "Summary for possible risk factors of SUDEP" on the website above. Thanks again Sofie there was a program..about this on the discovery channel.....it is sometime dont know muchabout.....that program very informative......it is a dangerous condition...... > there was a program..about this on the discovery channel.....it is > sometime dont know muchabout.....that program very informative......it > is a dangerous condition...... There should be articles on it under http://efa.org or via Google (discard posts by me, they repeat this one). A talk I saw at Toronto Ep. Convention in ~1998, the Dr. said they didn't have enough information to know what caused it or who might be at risk. The odds appeared to be *low, and it might be related to a 'fibrillation' type seizure that happened during the night, that hadn't been detected on tests done during normal testing. As I said above, they didn't have enough information then to suggest who might be at risk and who wasn't. There could technically be part of another thread here where Dave describes his Sleep Apnea assessments, that might be related? In both my quarterly Newsletter I get from Toronto Ep. Group, or searches from time to time, I've never found any new information that spelled out any more information on risk factors beyond what I listed above. It's probably sufficiently low a profile or risk factor that there's still nothing that would identify it as a problem, and not something that should likey be worried about? G./ seems too happen when people dont take medicine.......how stupid can they be..but i am guilty of not taking it too....thought it was not doing its job.....boy was i wrong > seems too happen when people dont take medicine.......how stupid can > they be..but i am guilty of not taking it too....thought it was not > doing its job.....boy was i wrong There's a 7-day Pill Case you can get at Pharmacies, and by keeping a paper record of times that doses are due, and writing the time when it's taken, you can track that a pill is taken on time, and record any seizures that happen (to take to Dr. Appointments). I still keep the pill record even though I haven't had a seizure since June 1998. I was able to use above pill record and case from 1993 to now, and it was especially useful when I either Changed pills I was using over e.g. 4-5 weeks, or added a second pill slowly over 3-4 weeks. The Pill Record (written) and pill case above, worked very well for that. *Several of the pills have warnings about seizures possible if they are stopped abruptly or too many scheduled doses missed. Those warnings should come with the original prescription filling, but also will be on the http://efa.org website under the Medications Directory. (It was under there that I found out that Grapefruit Juice conflicts with Tegretol (for one), and shouldn't be taken with that medication.) ******** The "Sudep talk" I saw, mentioned before, was 'Sudden *Unexplained Death' so they weren't able to tell what caused the person's death. Autopsies would tell if the person had missed a dose of a particular pill like Tegretol, just from the level in the bloodstream versus the expected doses. The ones described at the talk I mentioned earlier had nothing to do with taking an Anti-Ep. Medication or missing a dose or 2. G./ > There's a 7-day Pill Case you can get at Pharmacies, and by keeping a > paper record of times that doses are due, and writing the time when it's > taken, you can track that a pill is taken on time, and record any seizures > that happen (to take to Dr. Appointments). Hello G.Ross, I just wanted to tell you how I already had one of these 7-day pill cases, but it wasn't helping me very much, you see, although these cases have one space for each day of the week, most of us take our medication twice daily. Even if the case I had did have two spaces for each day of the week, I still think I might blame my meds for a lot of my forgetfulness and memory loss, and therefore, also for forgetting to take either my morning or evening dose. After giving this case a trial after about a month, I just got so fed up when I kept finding the previous days dose still left behind, I just eventually went back to my old system. Sofie >> There's a 7-day Pill Case you can get at Pharmacies, and by keeping a >> paper record of times that doses are due, and writing the time when it's [quoted text clipped - 14 lines] > eventually went back to my old system. > Sofie The 7-day pill case I have is about 5 inches long by 3/4 inch square, so each day's compartments are large enough to hold up to about 6 average sized pills. I always leave at least one 'door' open (empty), and keep it with a 'log' page 5x7 inches, with the Date down left, column one 'morning dose 2 Teg. 1 Fris' (Tegretol and Frisium), column 2 'night dose 1 Fris', and 'Comments'. (I used to take the pill log (pages) to Dr. appointments when I was still having seizures, to track how often I was having them.) When I take the AM dose I write the *time in that 'space' on the page. Same for the night dose, and then I leave that pill compartment's door 'up'. So I can't take 2 doses by mistake, and I can tell if I took the AM or PM dose since the *time I took it was written in the correct column (and the pills are missing in that compartment). After 4-5 compartments are empty, I reload all but one with the day's doses (total 4 pills each day). Another advantage of the '7 day pill case', is I know 7 days before the prescription is due to run out, that it's time to call for a Repeat of prescription. (What it *doesn't do with my memory is prevent me from calling the Pharmacy Twice (like I did last month) to refill the prescription. We had a snow storm after I called the 'robot' the first time, then I noticed ~6 days later that I was due to run out in 2 days! (Not good to do with Tegretol). So I called the 'robot voice mail' again, with the prescription numbers. When I went to pick up the (2nd call) refill next day, they had called the Dr. to approve the repeat but then saw I hadn't picked up my Call No. 1 :-< . So now I have an extra repeat 'on file' in 3+ months- 100 days- for next time I need them refilled. ) G./ |
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