Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 In a message dated 12/21/2005 11:33:22 AM Eastern Standard Time, rhbailey@... writes: But since several here have been speculating about the cause of 's death, here's what she said: " The autopsy said that he died of a seizure in his sleep. " I wrote it down. Sue , Upstate New York Thank you Sue, for posting this. Seizure drugs can be very hard to titrate.... too much or too little can also trigger seizure activity. I would suspect that he went into status epilepticus. It took inducing coma for a week to bring my late son out of this kind of seizure. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Helen I tried to warn , too. I have had too much experience with these seizure drugs to not understand their dangers. Although you talk about half life, also consider the clearance time which can be much longer. GABA can be supported with a combinations of amino acids and other nutrients, so there are options to drugs. THank you so much for the depth of information you provided. I only wish I could write as much and as well...... MJH In a message dated 12/21/2005 12:54:59 PM Eastern Standard Time, helenjora@... writes: I am so upset about 's death. When I saw him struggling with Neurontin withdrawal, I wrote to him offlist a bit, but he didn't seem very interested in continuing the conversation or listening to what I recommended. How I wish I had persevered with my attempts to help him. I know I have told my story of klonopin before on this list, how it gave me suicidal depression, how I had to use a water titration method to get off it, how I wish people would read up on it before taking it, how I wish CFIDS doctors would consider the dangers of this drug before prescribing it. I had to take Neurontin to get off klonopin and now I am slowly coming off Neurontin, by a method I tried to share with . But he said what I was doing was too slow for him, he wanted off that drug because it was making him ill. He was doing the reverse for a bit, taking klonopin to come off his high dose of Neurontin. Everyone's brain is different. Some who take Neurontin become suicidal, there are lawsuits out on it. In my case it saved me from suicide, but like many, I built tolerance to it rapidly. Tolerance is a little-known danger of the benzodiazepine drugs like klonopin and Neurontin as well. God only knows about this Kreppra drug he may have started taking. Both Neurontin and klonopin are antiseizure drugs. If you are on them for more than a couple of weeks and then take them away abruptly or even anything less than very gradually, you run the risk of seizure. I have spent the last three years in benzo forums where it is known that some people have died from benzodiazepine drug withdrawal. I can't tell you the number of people who have come to grief trying to come off this class of drugs and how few doctors will even acknowledge the severity of the problem or provide sensible guidelines to help their patients in this difficult process. Less is known about Neurontin, but I remember saying he couldn't keep anything down, as he tried to cut his Neurontin dose back. He was obviously very sick with withdrawal, a lot of people have to inch their way off Neurontin, as I am cautiously doing, having been burned but good by the klonopin. Earlier this month he was so psyched about taking Recuperation and saying he wanted to clear his other meds out to take Recup alone. How I wish I had written to him again to warn him not to push his way off those drugs quickly. For that is what I fear he did, in his desire to experience Recuperation in a purer state. He may have tried to crossover to the Kreppra, which I know nothing about, but it is described as another anti-seizure med. It is tricky going from one drug to another, and should generally be done gradually. Neurontin has a very short halflife, you really need to take it three times a day because it washes out so fast. If Kreppra has a longer halflife, it would take more time to build up to cover the Neurontin withdrawal. Klonopin has a halflife of about three days, depending on your metabolism. So if you stop it, watch out three days later. Some people experience problems for months and years after too rapid withdrawal from benzos and I do not know how long the seizure risk would last or if it could be retriggered by alterations in similar medications. We will probably never know what happened with 's medication, but I am thinking it is something with these very dangerous drugs, and we should all pay heed. They affect the GABA receptors in the brain and being distraught as he was in his last post would throw a great load of stress onto those receptors as well. I am sitting here in great remorse, feeling guilty that I didn't try harder to talk to about what I know about the dangers of withdrawal from these drugs. I had told him to write to me any time about his struggle with Neurontin, but he was so focused on his research, such a brilliant young life so needlessly gone. Helen mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Helen, I was taking Depakote and lamictal for a few years for migraine prevention and cognitive functioning. My hair became like straw. I am now taking topamax instead, the last 6 months.( I weaned off the othyers in 4 weeks time). These are also anti seizure meds. I guess I should be concerned about these as well? Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Carol Absolutely YES. Try these instead, they work for many for migraines, seizures and cog functioning. fish oil + DHA Magnesium + B6 B complex this is the short course. In a message dated 12/21/2005 4:10:43 PM Eastern Standard Time, Cattttttt@... writes: Helen, I was taking Depakote and lamictal for a few years for migraine prevention and cognitive functioning. My hair became like straw. I am now taking topamax instead, the last 6 months.( I weaned off the othyers in 4 weeks time). These are also anti seizure meds. I guess I should be concerned about these as well? Carol mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 That makes so much more sense than suicide and is infinitely more comforting. He was so UP the day before and was so up in general it was hard to believe he would do himself in no matter how difficult his circumstances. He had lived in difficult circumstances for years. Its scary too; another person with CFS all of sudden dies. Why would that be? We dont hear alot about people with CFS dying, let alone young people with CFS dying. I really want to get that autopsy report. It only explains half the story - what brought on the seizure? When we get more information I'll post it all on my website and on Co-cure. At least 's death will go to helping more people understand just how serious this disease is. <rhbailey@...> wrote: Hi all, Jill wrote, > ...at first I thought it was suicide and it still may be. But > if he was taken off benzos, that alone could have made him mentally > and physically unstable, for instance. You can have fatal seizures. After I talked to 's mother I didn't post what she told me about the results of his autopsy because I didn't want to get it wrong. I thought that 's friend might have more accurate details. But since several here have been speculating about the cause of 's death, here's what she said: " The autopsy said that he died of a seizure in his sleep. " I wrote it down. Sue , Upstate New York This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 That was just my hunch. I feel chilled in a very....spooky way. Upset. Thanx Sue. > > > In a message dated 12/21/2005 11:33:22 AM Eastern Standard Time, > rhbailey@d... writes: > > But since several here have been speculating about the cause of 's > death, here's what she said: " The autopsy said that he died of a > seizure in his sleep. " I wrote it down. > > Sue , > Upstate New York > > > > Thank you Sue, for posting this. > > Seizure drugs can be very hard to titrate.... too much or too little can > also trigger seizure activity. I would suspect that he went into status > epilepticus. It took inducing coma for a week to bring my late son out of this kind > of seizure. > > mjh > " The Basil Book " > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I kept thinking that someone who had a responsible personality like would leave a note if he had committed suicide.This is very sad.When will medicine be able to find cause and cure so that we won't be need to experiment drugs ourselves? Nil 's autopsy > Hi all, > > Jill wrote, > >> ...at first I thought it was suicide and it still may be. But >> if he was taken off benzos, that alone could have made him mentally >> and physically unstable, for instance. You can have fatal seizures. > > After I talked to 's mother I didn't post what she told me about > the results of his autopsy because I didn't want to get it wrong. I > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Thanks for letting us all know. BW, Sheila Wednesday, December 21, 2005, 4:28:24 PM, you wrote: RB> Hi all, RB> Jill wrote, >> ...at first I thought it was suicide and it still may be. But >> if he was taken off benzos, that alone could have made him mentally >> and physically unstable, for instance. You can have fatal seizures. RB> After I talked to 's mother I didn't post what she told me about RB> the results of his autopsy because I didn't want to get it wrong. I RB> thought that 's friend might have more accurate details. RB> But since several here have been speculating about the cause of 's RB> death, here's what she said: " The autopsy said that he died of a RB> seizure in his sleep. " I wrote it down. RB> Sue , RB> Upstate New York RB> This list is intended for patients to share personal experiences RB> with each other, not to give medical advice. If you are RB> interested in any treatment discussed here, please consult your doctor. RB> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I just spoke with his mother and got a different impression about the autopsy. She told me the results of the autopsy would be available in two weeks. She suggested " seizure " as a possible cause and said had discharge around his mouth. I asked that when she knows for sure, she tell Sue. His mother was (imaginably) very distraught. Regardless of the fight had just had with his parents and whatever relationship they had before, we should remember that they are grieving parents burying their own child. She was very kind to call Sue and I, even though it was obviously extremely difficult for her to talk about the whole situation. , Dan Keshet Dorchester, MA On Wednesday 21 December 2005 11:28, wrote: > Hi all, > > Jill wrote, > > > ...at first I thought it was suicide and it still may be. But > > if he was taken off benzos, that alone could have made him mentally > > and physically unstable, for instance. You can have fatal seizures. > > After I talked to 's mother I didn't post what she told me about > the results of his autopsy because I didn't want to get it wrong. I > thought that 's friend might have more accurate details. > > But since several here have been speculating about the cause of 's > death, here's what she said: " The autopsy said that he died of a > seizure in his sleep. " I wrote it down. > > Sue , > Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Thanks Helen, I can't take the hormones because of the melanoma. Maxalt and imitrex my MD won't prescribe any more because he is afraid of heart rhythm abnormalities. I resisted his point of view, but had to accept it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 In a message dated 12/21/2005 5:25:28 PM Eastern Standard Time, Cattttttt@... writes: Thanks Helen, I can't take the hormones because of the melanoma. Maxalt and imitrex my MD won't prescribe any more because he is afraid of heart rhythm abnormalities. I resisted his point of view, but had to accept it. My heart rhythm abnormalities were substantially reversed when my cardiologist prescribed Mg, B6, l-Taurine, Hawthorne berry tea and Motherwort tincture. Hope this helps mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I am so upset about 's death. When I saw him struggling with Neurontin withdrawal, I wrote to him offlist a bit, but he didn't seem very interested in continuing the conversation or listening to what I recommended. How I wish I had persevered with my attempts to help him. I know I have told my story of klonopin before on this list, how it gave me suicidal depression, how I had to use a water titration method to get off it, how I wish people would read up on it before taking it, how I wish CFIDS doctors would consider the dangers of this drug before prescribing it. I had to take Neurontin to get off klonopin and now I am slowly coming off Neurontin, by a method I tried to share with . But he said what I was doing was too slow for him, he wanted off that drug because it was making him ill. He was doing the reverse for a bit, taking klonopin to come off his high dose of Neurontin. Everyone's brain is different. Some who take Neurontin become suicidal, there are lawsuits out on it. In my case it saved me from suicide, but like many, I built tolerance to it rapidly. Tolerance is a little-known danger of the benzodiazepine drugs like klonopin and Neurontin as well. God only knows about this Kreppra drug he may have started taking. Both Neurontin and klonopin are antiseizure drugs. If you are on them for more than a couple of weeks and then take them away abruptly or even anything less than very gradually, you run the risk of seizure. I have spent the last three years in benzo forums where it is known that some people have died from benzodiazepine drug withdrawal. I can't tell you the number of people who have come to grief trying to come off this class of drugs and how few doctors will even acknowledge the severity of the problem or provide sensible guidelines to help their patients in this difficult process. Less is known about Neurontin, but I remember saying he couldn't keep anything down, as he tried to cut his Neurontin dose back. He was obviously very sick with withdrawal, a lot of people have to inch their way off Neurontin, as I am cautiously doing, having been burned but good by the klonopin. Earlier this month he was so psyched about taking Recuperation and saying he wanted to clear his other meds out to take Recup alone. How I wish I had written to him again to warn him not to push his way off those drugs quickly. For that is what I fear he did, in his desire to experience Recuperation in a purer state. He may have tried to crossover to the Kreppra, which I know nothing about, but it is described as another anti-seizure med. It is tricky going from one drug to another, and should generally be done gradually. Neurontin has a very short halflife, you really need to take it three times a day because it washes out so fast. If Kreppra has a longer halflife, it would take more time to build up to cover the Neurontin withdrawal. Klonopin has a halflife of about three days, depending on your metabolism. So if you stop it, watch out three days later. Some people experience problems for months and years after too rapid withdrawal from benzos and I do not know how long the seizure risk would last or if it could be retriggered by alterations in similar medications. We will probably never know what happened with 's medication, but I am thinking it is something with these very dangerous drugs, and we should all pay heed. They affect the GABA receptors in the brain and being distraught as he was in his last post would throw a great load of stress onto those receptors as well. I am sitting here in great remorse, feeling guilty that I didn't try harder to talk to about what I know about the dangers of withdrawal from these drugs. I had told him to write to me any time about his struggle with Neurontin, but he was so focused on his research, such a brilliant young life so needlessly gone. Helen > > Hi all, > > Jill wrote, > > > ...at first I thought it was suicide and it still may be. But > > if he was taken off benzos, that alone could have made him mentally > > and physically unstable, for instance. You can have fatal seizures. > > After I talked to 's mother I didn't post what she told me about > the results of his autopsy because I didn't want to get it wrong. I > thought that 's friend might have more accurate details. > > But since several here have been speculating about the cause of 's > death, here's what she said: " The autopsy said that he died of a > seizure in his sleep. " I wrote it down. > > Sue , > Upstate New York > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Hi All, Having had dreadful and I believe potentially life threatening reactions to many drugs - especially those of the neurological/physcological ilk, I can't help but repeat what I have said before - that we must as patients be very very circumspect about the cocktail of drugs we are willing to put into ourselves. I know we all want to be better and would do anything to get to that state, but so far in my 35 yr history of this illness the best thing (for me at least) is to let my body heal itself. It has been the drugs that have given me the glimpses of real hell. I understand this will not be a very popular thought and I don't mean it to be inappropriate at this time, but we do need to be very careful. Rosie Its scary too; another person with CFS all of sudden dies. Why would that be? We dont hear alot about people with CFS dying, let alone young people with CFS dying. I really want to get that autopsy report. It only explains half the story - what brought on the seizure? When we get more information I'll post it all on my website and on Co-cure. At least 's death will go to helping more people understand just how serious this disease is. <rhbailey@...> wrote: Hi all, Jill wrote, > ...at first I thought it was suicide and it still may be. But > if he was taken off benzos, that alone could have made him mentally > and physically unstable, for instance. You can have fatal seizures. After I talked to 's mother I didn't post what she told me about the results of his autopsy because I didn't want to get it wrong. I thought that 's friend might have more accurate details. But since several here have been speculating about the cause of 's death, here's what she said: " The autopsy said that he died of a seizure in his sleep. " I wrote it down. Sue , Upstate New York This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Please do not feel guilty Helen. I am taking temezapem for several years now (my one concession to lyme in terms of any drugs). I am up to basically a full capsule a day because of recent ongoing excruciating pain from a bad tooth extraction with many complications, plus constant demolition/construction in m building starting 7 a.m., requiring me to fall asleep by 10 or 11 to get some sleep. Anyway, I am well aware...and maybe this is catuionary to all of us. I want to get back down but when I taper I go by little teeny amounts. So maybe from a full capsule to 5/6 capsule, that kind of thing. I had gotten down to 1/2 capsule before the tooth extraction debacle. Please do not feel responsible, but it is good that you post again. I think as I noted in a previous post anybody with a chronic illness like this needs to be careful taking new drugs and going off old drugs. There is one lymie I know who went into vasculitis and almost died when put on mepron/zith and one other abx. She was too MCS to handle it. SHe pulled out of that and had to start with 5 mg doxy IV along with low dose steroids. Some people are that sensitive. > > > > Hi all, > > > > Jill wrote, > > > > > ...at first I thought it was suicide and it still may be. But > > > if he was taken off benzos, that alone could have made him > mentally > > > and physically unstable, for instance. You can have fatal > seizures. > > > > After I talked to 's mother I didn't post what she told me > about > > the results of his autopsy because I didn't want to get it wrong. > I > > thought that 's friend might have more accurate details. > > > > But since several here have been speculating about the cause of > 's > > death, here's what she said: " The autopsy said that he died of a > > seizure in his sleep. " I wrote it down. > > > > Sue , > > Upstate New York > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Helen, This is a great mssg and a great reminder of just how dangerous these drugs really are. You did what you could to try and share that with , so please don't beat yourself up about this, you did try and share with him but each person will ultimately make their own choices and have to pay the consequences for them. It pays to be so very cautious with treatments, esp with the brain drugs. This is a mssg I hope everyone who has taken these drugs or considers it will file away for future reference! Marcia Re: 's autopsy I am so upset about 's death. When I saw him struggling with Neurontin withdrawal, I wrote to him offlist a bit, but he didn't seem very interested in continuing the conversation or listening to what I recommended. How I wish I had persevered with my attempts to help him. I know I have told my story of klonopin before on this list, how it gave me suicidal depression, how I had to use a water titration method to get off it, how I wish people would read up on it before taking it, how I wish CFIDS doctors would consider the dangers of this drug before prescribing it. I had to take Neurontin to get off klonopin and now I am slowly coming off Neurontin, by a method I tried to share with . But he said what I was doing was too slow for him, he wanted off that drug because it was making him ill. He was doing the reverse for a bit, taking klonopin to come off his high dose of Neurontin. Everyone's brain is different. Some who take Neurontin become suicidal, there are lawsuits out on it. In my case it saved me from suicide, but like many, I built tolerance to it rapidly. Tolerance is a little-known danger of the benzodiazepine drugs like klonopin and Neurontin as well. God only knows about this Kreppra drug he may have started taking. Both Neurontin and klonopin are antiseizure drugs. If you are on them for more than a couple of weeks and then take them away abruptly or even anything less than very gradually, you run the risk of seizure. I have spent the last three years in benzo forums where it is known that some people have died from benzodiazepine drug withdrawal. I can't tell you the number of people who have come to grief trying to come off this class of drugs and how few doctors will even acknowledge the severity of the problem or provide sensible guidelines to help their patients in this difficult process. Less is known about Neurontin, but I remember saying he couldn't keep anything down, as he tried to cut his Neurontin dose back. He was obviously very sick with withdrawal, a lot of people have to inch their way off Neurontin, as I am cautiously doing, having been burned but good by the klonopin. Earlier this month he was so psyched about taking Recuperation and saying he wanted to clear his other meds out to take Recup alone. How I wish I had written to him again to warn him not to push his way off those drugs quickly. For that is what I fear he did, in his desire to experience Recuperation in a purer state. He may have tried to crossover to the Kreppra, which I know nothing about, but it is described as another anti-seizure med. It is tricky going from one drug to another, and should generally be done gradually. Neurontin has a very short halflife, you really need to take it three times a day because it washes out so fast. If Kreppra has a longer halflife, it would take more time to build up to cover the Neurontin withdrawal. Klonopin has a halflife of about three days, depending on your metabolism. So if you stop it, watch out three days later. Some people experience problems for months and years after too rapid withdrawal from benzos and I do not know how long the seizure risk would last or if it could be retriggered by alterations in similar medications. We will probably never know what happened with 's medication, but I am thinking it is something with these very dangerous drugs, and we should all pay heed. They affect the GABA receptors in the brain and being distraught as he was in his last post would throw a great load of stress onto those receptors as well. I am sitting here in great remorse, feeling guilty that I didn't try harder to talk to about what I know about the dangers of withdrawal from these drugs. I had told him to write to me any time about his struggle with Neurontin, but he was so focused on his research, such a brilliant young life so needlessly gone. Helen > > Hi all, > > Jill wrote, > > > ...at first I thought it was suicide and it still may be. But > > if he was taken off benzos, that alone could have made him mentally > > and physically unstable, for instance. You can have fatal seizures. > > After I talked to 's mother I didn't post what she told me about > the results of his autopsy because I didn't want to get it wrong. I > thought that 's friend might have more accurate details. > > But since several here have been speculating about the cause of 's > death, here's what she said: " The autopsy said that he died of a > seizure in his sleep. " I wrote it down. > > Sue , > Upstate New York > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 hi Carol: I'm sorry but I don't know anything about those drugs. For migraines I take Maxalt and am experimenting with Tri-Est cream, since mine are all hormonally triggered, just about. Good luck to you, Helen > > Helen, > I was taking Depakote and lamictal for a few years for migraine > prevention and cognitive functioning. My hair became like straw. I am now taking > topamax instead, the last 6 months.( I weaned off the othyers in 4 weeks time). > These are also anti seizure meds. I guess I should be concerned about these as > well? > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I know what you mean! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Arghh, I have the Cheney problem. Maybe I shouldn't take the Maxalt but the migraines are so damn bad I pray for a guillotine. Helen > > Thanks Helen, > I can't take the hormones because of the melanoma. Maxalt and imitrex my MD > won't prescribe any more because he is afraid of heart rhythm abnormalities. I > resisted his point of view, but had to accept it. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I meant to say the Cheney heart problem and I am on some of the things you list below. Thanks, Helen > > > > In a message dated 12/21/2005 5:25:28 PM Eastern Standard Time, > Cattttttt@a... writes: > > Thanks Helen, > I can't take the hormones because of the melanoma. Maxalt and imitrex my MD > won't prescribe any more because he is afraid of heart rhythm abnormalities. > I > resisted his point of view, but had to accept it. > > > > My heart rhythm abnormalities were substantially reversed when my > cardiologist prescribed Mg, B6, l-Taurine, Hawthorne berry tea and Motherwort tincture. > > Hope this helps > > mjh > " The Basil Book " > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 could you guys please change the subject heading on this? its morbid to read all these posts that have nothing to do with :-( Re: 's autopsy hi Carol: I'm sorry but I don't know anything about those drugs. For migraines I take Maxalt and am experimenting with Tri-Est cream, since mine are all hormonally triggered, just about. Good luck to you, Helen > > Helen, > I was taking Depakote and lamictal for a few years for migraine > prevention and cognitive functioning. My hair became like straw. I am now taking > topamax instead, the last 6 months.( I weaned off the othyers in 4 weeks time). > These are also anti seizure meds. I guess I should be concerned about these as > well? > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 I'm not sure I understand how an autopsy could determine this. Unless perhaps he had a cut tongue from biting it during a seizure. A seizure is generally a clinical diagnosis made from observation, and it is not always correct, even if observed. If it observed during an EEG, then the diagnosis of seizure is definitive. There is no way of determing a seizure after death that I am aware of. It is possible there was some indication of brain damage that could potentially have caused a seizure. Kris RE: 's autopsy Hi All, Having had dreadful and I believe potentially life threatening reactions to many drugs - especially those of the neurological/physcological ilk, I can't help but repeat what I have said before - that we must as patients be very very circumspect about the cocktail of drugs we are willing to put into ourselves. I know we all want to be better and would do anything to get to that state, but so far in my 35 yr history of this illness the best thing (for me at least) is to let my body heal itself. It has been the drugs that have given me the glimpses of real hell. I understand this will not be a very popular thought and I don't mean it to be inappropriate at this time, but we do need to be very careful. Rosie Its scary too; another person with CFS all of sudden dies. Why would that be? We dont hear alot about people with CFS dying, let alone young people with CFS dying. I really want to get that autopsy report. It only explains half the story - what brought on the seizure? When we get more information I'll post it all on my website and on Co-cure. At least 's death will go to helping more people understand just how serious this disease is. <rhbailey@...> wrote: Hi all, Jill wrote, > ...at first I thought it was suicide and it still may be. But > if he was taken off benzos, that alone could have made him mentally > and physically unstable, for instance. You can have fatal seizures. After I talked to 's mother I didn't post what she told me about the results of his autopsy because I didn't want to get it wrong. I thought that 's friend might have more accurate details. But since several here have been speculating about the cause of 's death, here's what she said: " The autopsy said that he died of a seizure in his sleep. " I wrote it down. Sue , Upstate New York This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 I am a stranger to many here. I am very suprised at all the speculation taking place on 's sudden death. Surmising that certain drugs may have lead to his demise, is without scientific merit. had experienced a seizure in the past, in a stock room at work, and was discovered by a fellow worker. believed in scientific research not mere speculation, and this will take place through the proper channels. His physician, who has been informed of 's passing, I am sure will be collaborating with the M.E.'s office. They have the data neccessary to draw conclusions. To begin discussing one or more person's adverse effects to some prescription drugs which others must use as part of neccessary and well directed treatment and frighten those patients, well, this is not the thread to debate benefits/risks,imho. It is quite possible that 's death, may not be attributed to anything further than possible seizure, as this may be what his parents are told or can understand of the results reported to them. We may not be privy to all the details. What should be clear though at this time, is that these diseases have a face to them. Real people with real dreams and aspirations are suddenly lost. Lives are cut short. Be at rest , you were a bright beacon in life, and now a shining star in the Heavens. > > > > Helen, > > I was taking Depakote and lamictal for a few years for migraine > > prevention and cognitive functioning. My hair became like straw. I am > now taking > > topamax instead, the last 6 months.( I weaned off the othyers in 4 > weeks time). > > These are also anti seizure meds. I guess I should be concerned about > these as > > well? > > Carol > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 On Dec 21, 2005, at 7:57 PM, karen wrote: > I am a stranger to many here. I am very suprised at all the > speculation taking place on 's sudden death. Surmising that > certain drugs may have lead to his demise, is without scientific > merit. Since you are a stranger here, allow me to tell you a little about the people on this list. All of us are living with, or living with someone who is living with, a disease that has no sure diagnostic test, no reliable treatment, and no known cure. All we know is that somehow we got it; and that the vast majority of us will be living under its shadow for the rest of our lives. In this impossible situation, we respond in various ways. Some retreat into despair. Others distract themselves with drugs, religion, or other obsessions. The healthiest and sanest of us, however, fight back with whatever wit and energy we have left. We become compulsive seekers of information, working alone and together to pull together pieces of a puzzle that has eluded our doctors, and that even the world's best researchers have been unwilling or unable to assemble. Through the years, this constant discussing, ruminating, speculating, and dissecting on every piece of information we discover becomes an ingrained habit of mind. By and by, it emerges as a dominant strategy for dealing with any kind of uncertainty. Find out as much as you can. Lay it out. Look at where the holes are; and see what you can guess about what might fit into them. Maybe there's a pattern. Maybe you'll learn something new. Just often enough, you find a hint of a direction, a glimmer of something you didn't see before. For most of us, whatever healing we achieve will be won by working this strategy, over and over, ever on the lookout for the answer that will make our days a bit more bearable. It is, in the end, the only cure that has been proven to work. You are, of course, right in that we have no business making such speculations about a deceased man we did not know. We're well aware that it's not " good science " (though remember, please, that the practitioners of " good science " have long ago let us down in ways that can only be described as criminal), let alone in good taste. But, upon hearing of 's death, we found ourselves once again in an all-too-familiar situation: A medical problem. A tragedy. A loss. And precious little information. And so we did what we always do: Laid out what little we knew, and began to look at where the holes were and where the pattern might lie. We valued specifically because, among us all, he was one of the masters of this process. If it had been another member of this list, and had been here grieving with us, rest assured that he'd have been out front of the pack as usual, assembling what was known about the situation and trying to draw the correct inferences from it. You may be horrified. would not have been. In fact, I suspect he's somewhere, smiling. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 > > > I am a stranger to many here. I am very suprised at all the > > speculation taking place on 's sudden death. Surmising that > > certain drugs may have lead to his demise, is without scientific > > merit. > > Since you are a stranger here, allow me to tell you a little about > the people on this list. > > All of us are living with, or living with someone who is living with, > a disease that has no sure diagnostic test, no reliable treatment, > and no known cure. All we know is that somehow we got it; and that > the vast majority of us will be living under its shadow for the rest > of our lives. > > In this impossible situation, we respond in various ways. Some > retreat into despair. Others distract themselves with drugs, > religion, or other obsessions. The healthiest and sanest of us, > however, fight back with whatever wit and energy we have left. We > become compulsive seekers of information, working alone and together > to pull together pieces of a puzzle that has eluded our doctors, and > that even the world's best researchers have been unwilling or unable > to assemble. > > Through the years, this constant discussing, ruminating, speculating, > and dissecting on every piece of information we discover becomes an > ingrained habit of mind. By and by, it emerges as a dominant strategy > for dealing with any kind of uncertainty. Find out as much as you > can. Lay it out. Look at where the holes are; and see what you can > guess about what might fit into them. Maybe there's a pattern. Maybe > you'll learn something new. Just often enough, you find a hint of a > direction, a glimmer of something you didn't see before. For most of > us, whatever healing we achieve will be won by working this strategy, > over and over, ever on the lookout for the answer that will make our > days a bit more bearable. > > It is, in the end, the only cure that has been proven to work. > > You are, of course, right in that we have no business making such > speculations about a deceased man we did not know. We're well aware > that it's not " good science " (though remember, please, that the > practitioners of " good science " have long ago let us down in ways > that can only be described as criminal), let alone in good taste. > > But, upon hearing of 's death, we found ourselves once again in > an all-too-familiar situation: A medical problem. A tragedy. A loss. > And precious little information. > > And so we did what we always do: Laid out what little we knew, and > began to look at where the holes were and where the pattern might lie. > > We valued specifically because, among us all, he was one of the > masters of this process. If it had been another member of this list, > and had been here grieving with us, rest assured that he'd have > been out front of the pack as usual, assembling what was known about > the situation and trying to draw the correct inferences from it. > > You may be horrified. would not have been. In fact, I suspect > he's somewhere, smiling. > > Sara Beautifully expressed Sara, thanks. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Respectfully, I disagree. All drugs have costs, and people with these illnesses are very sensitive. It has been a good discussion. Some of us take benzos but we are aware they are addictive. It's always good to remind folks that going off them too quickly can be dangerous. > > > > > > Helen, > > > I was taking Depakote and lamictal for a few years for > migraine > > > prevention and cognitive functioning. My hair became like > straw. I am > > now taking > > > topamax instead, the last 6 months.( I weaned off the othyers > in 4 > > weeks time). > > > These are also anti seizure meds. I guess I should be concerned > about > > these as > > > well? > > > Carol > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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