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Medical Forum / Diseases and Disorders / Epilepsy / August 2003SUDEP - Sudden Unexplained Death
BlankI just became aware of the term SUDEP (see below). (excerpt from http://www.aesnet.org/currents_pdf/EPC0012.pdf): "Sudden unexplained death in epilepsy (SUDEP) accounts for 7-17% of deaths among people with epilepsy. Both cardiac and pulmonary derangement have been postulated as proximate causes. Patients with uncontrolled seizures are at greatest risk for SUDEP, and experiencing tonic-clonic seizures, taking multiple antiepileptic drugs and having coexisting neurologic disease further increase the risk." . . . "status epilepticus must not have occurred". I recently had my meds changed from a combo of Trileptal and Keppra (ineffective) to Depakote (effective so far). I'm not sure if the previous quote, 3rd sentence, is saying that all three conditions should be in place, or simply any one of them, to increase the risk of SUDEP. Has anyone had experience with or knowledge of SUDEP occurring? The Toygirl > BlankI just became aware of the term SUDEP (see below). > [quoted text clipped - 4 lines] > greatest risk for SUDEP, and experiencing tonic-clonic seizures, taking > multiple antiepileptic drugs ***and having coexisting neurologic disease*** > further increase the risk." . . . "status epilepticus must not have > occurred". [quoted text clipped - 6 lines] > Has anyone had experience with or knowledge of SUDEP occurring? > The Toygirl A talk I saw 4? years ago suggested the research they had at that point suggested that Sudep was a 'bucket' where they were filing cases where someone had died, but where particular causes or complications couldn't be definitely linked. The percentage was Low (Sorry I don't remember *what it was -- less than 8%?) Howdy is the Statistician, but *I* read the text as Additive, so each AND has to ALL be present in that sentence you were worried about. So if you don't have "And Co-existing Neurological Disease" (the last one), that part doesn't add to your risk. You were having less than satisfactory control, so they changed you to some pills where it's Better for you. So there's less chance of you having seizures during the night (when most of the SUDEP cases were flagged at the talk *I* saw). They *thought it might be caused by a 'fibrillation' of the brain, where the signals get messed up between the signals to operate the Heart and Lungs, and that fibrillation led to the Cardio-Pulmonary system behaving erratically and interfering with Oxygen uptake and passing the oxygen properly into the Bloodstream to keep the Engines Running.... I don't know what would have been printed between the quoted part where the ...'s are in Second last Paragraph you quoted (above), although it was probably Medical stuff I wouldn't be able to interpret anyway. SUDEP by its nature, ends in Death of the person, so it's unlikely we have many people posting who have had it... So long as people are uncontrolled, or have kids who are, they have risk of their seizures becoming more serious. It's for that reason that the Drs. try to find a combination of Meds. or a Single med. if one works, that reduces the number of seizures or their severity. There are some people who can eventually get by with *no medications, but in many of their cases, their seizures were likely not as severe as some of the rest of us to start with. Because there are so many variables in the types of szrs., ages of people, and their medical histories, it's difficult to suggest that because one person can get by without medications, or using only one, that all the Others could too. Each of the types that people have need the Dr. to assess their severity, whether medications are giving good control without unacceptable side effects, and whether there are any negatives of long term use of particular pills. G.R. Howdy! Sorry to say, I have to agree with GR here -- "unexplained" is a catch all phrase. There are, of course valid cases of SUDEP. If somebody apparantly died without cause it would be labeled as such. If they find out that the person also had epilepsy I would not be surprised if they labeled SUDEP just to be able to have something to put on a death certificate.  SignatureDave ???? http://www.howdydave.com > > BlankI just became aware of the term SUDEP (see below). > > [quoted text clipped - 57 lines] > control without unacceptable side effects, and whether there are any > negatives of long term use of particular pills. G.R. > Howdy! > [quoted text clipped - 10 lines] > -- > Dave ???? This whole issue of SUDEP is a little too close to home for me. I have extraordinarily poor sleeping hours (100-110 hours awake, followed by 4-6 hours asleep) and there is nothing I can do about it; it has been an ever evolving problem. It may get worse. When I simply can't drag myself around any longer, I hit the sack and relax. As soon as I relax, I seem to flow in and out of *some* seizure state. The most noticeable feature is respiratory arrest. It is not that I can't breathe, it is much more in the area of forgetting to do so. Suddenly, my eye sockets seem to sink in, my jaw becomes extremely tense, my teeth will 'buzz' at about 50 hz, eyebrows and mouth contort (the latter two is simply because of the feelings I have) and if I don't start to breathe deeply and very soon, I am unfortunate enough to hear, often, an unmistakable 'last' sizzling exhale from my lungs. If I do catch it in time, I'll get in front of the TV as soon as possible and get mentally stimulated again. If I don't catch it in time, the exhale is followed by an aggressive bolt of tingling in my right hand, and I 'go under'. I will awaken after about 4 hours have passed, and am extremely weak, and I have a chewed up tongue. My physician seems to me to be reluctant to write *anything* in my file about this, because, I think, he doesn't want to take any responsibility for an unfortunate death. The neurologist I am also now seeing has ordered the first in what he calls perhaps many EEG's. Life isn't too good right now; I hate always saying goodbye world. I'll keep you informed. Chris New thoughts--> If you're conscious of what you do during the night (at bottom here) or during an event, any seizure you have I think would be classed as Simple Partial. The other types, usually the person only hears what they did or how they behaved (breathing etc.) from outside witnesses. If you're having disturbed sleep from tooth grinding or tongue biting there's one of 2 appliances you can get. If you have a Dental Plan, you can get a quote for fitting of an 'occlusal splint'. Canada dollars, fitting, lab fee and first splint should be in range $100-$130? Extra splints can be made for 3-4 years from the impressions above for about $40. They last about 3-6 months, up to 16 months, depending on the rate or wear. It's a soft plastic semicircle that fits over the Top Teeth at bedtime. It prevents tongue or tooth damage during the night. If you're doing that, it could be part of what's keeping you awake longer. Cheaper test version my Dentist suggested for kids -- he said to go to a Hockey or Soccer sports store and get the plastic mouthguards they sell for players or goalies. Those should be about $40. They cover both the top and bottom teeth -- cut it in half horizontally, since you only need protect the Top teeth to prevent damage. Now you have 2 at ~$20.00 each. The Dental version takes about 2 nights to get used to, but if you're getting that little sleep below, your's might be less. Other possibility someone else might know the name of. There's a type of sleep where the person stops breathing for an Extended Period, then 'starts' and begins breathing again. I don't think that's related to Epilepsy. I heard about it on a Radio Program where a woman phoned a Doctor there, since her Husband did that (stopped breathing often), and it was keeping HER Awake! There's a Medical name for it, something like 'asphyxia' but that's not it. Since I didn't have it (3 months ago when the show was on), I didn't write down the correct name. Something at the back of the throat relaxes and blocks the airway, then the brain reacts with a 'startle effect' that opens the airway again. There's probably some different therapy for that, if that's what it was. G./ > This whole issue of SUDEP is a little too close to home for me. > [quoted text clipped - 28 lines] > I'll keep you informed. > Chris Thank you. 'Sleep Apnea", I think. That's it, and after I logged off the real name 'popped up'.... I hate this delayed memory thing. You could search on that, and likely get 100s of hits, some that might match what you're looking for better. G./ > Thank you. > > 'Sleep Apnea", I think. > > Howdy! > > [quoted text clipped - 17 lines] > 4-6 hours asleep) and there is nothing I can do about it; it has been an > ever evolving problem. It may get worse. Holy mackerel! How do you function? And what do you do when everyone in the house is sleeping except you. I mean, you can't vacuum or do other noisy stuff. Barb > When I simply can't drag myself around any longer, I hit the sack and relax. > As soon as I relax, I seem to flow in and out of *some* seizure state. The [quoted text clipped - 24 lines] > > Chris "Function', I guess, is a relative term. For many decades as the situation grew, I used this odd hour behaviour to my family's benefit by writing major, major business plans for a telephone company and then a tellecommunications supplier, acheiving executive payscales and bonuses. I used to have a pager by my bed, and acted as a trouble shooter for the telephone company if regulatory situations went sour. But, in the end it was not sustainable, and I now live my strange life alone (not looking for sympathy here, I'm very content). Now this beastly thing has come to haunt me (first started mid April this year) and I hope I get some diagnosis/relief. I took Lamictal for about 12 days and developed the infamous rash, and thus far no other medications have been prescribed. There are funny moments y'know: went to a sleep disorders clinic, and the physician came in the room at 6:15am (no sleep whatsoever), and asked me if he could buy me a coffee and a doughnut. He did. There appears to be more determination of late by the physicians to dig for diagnoses and remedies, especially in respect to the 'seizures'. Maybe things will work out. I'll keep you informed, and will toss in the odd bit of humour once in a while. All of you are wonderful, supportive people, and I'm so glad to be among you. Chris Hi all, Of the data below; Status Epilepticus is the condition to most be aware of. "Status" is prolonged seizing without respite, until the brain and body just cannot tolerate the strain any longer. It is being in a prolonged state of tonic/clonic seizures(plural?). Most often treated in Intensive Care Units using i.v injections and infusions of drugs such as Clonazepam and Midazolam. regards to all, Rich. > BlankI just became aware of the term SUDEP (see below). > [quoted text clipped - 15 lines] > > The Toygirl
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