Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 Sha, Are you familar with SUDEP? It stands for Sudden Unexplained Death in Epilepsy? If not, I encourage you to do a Goggle search on the subject and ask your doctors about it. Even though I was diagnosed with epilepsy more than 34 years ago, I had never heard about SUDEP until recently. SUDEP is an strange correlation between the taking of numerous medications for seizure control and sudden death. During my lifetime I have been on numerous drugs for control of gran mal seizures. However, I was never one three drugs at the same time. In the beginning, I was put on Dilatin and Phenobarbital. But, that was way back in 1966. The medical profession has come a long way since 1966 when it comes to treating epilepsy. Back in 1966, if you had a single seizure you went on medication. Today, more and more doctors are reluctant to seek the solution in a pill if the person only suffered one seizure. In addition, more and more doctors today who treat epilepsy refuse to put their patients on numerous drugs to control their seizures for fear of SUDEP. In addition to asking your doctors about SUDEP, I would ask them about potential adverse reactions from your daughter's taking of three different medications. You can also find answers regarding adverse side-effects from the taking of numerous drugs by checking out The Drug Information Interaction Site. It should be listed as a resource in this group's group - . Good luck. Lamar shat345 wrote: > Hi Lamar: > > I am getting medical guidance for my daughter's seizures and > epilepsy. I have two neurologists working on my daughter's case. The > seizure frequesncy increased from 0-2 a month to 22 grand mal > seizures and hundresda of myoclonic jerks in september and october. > > The things that were changed in august were adding the drug Lamictal > and the second change was adding b-complex in end of september. She > had seizures but not this many. In september she had 11 gand mal and > in october she had 22 gand mal. > > According to my observation, I think that Lamictal or B-complex may > have increased her seizure frequency. I am seeing a DAn dcotor for > my daughter and tries several supplement suggested by him, but > nothing worked and the seizures problem increased dramatically. > > I never decreased any AED's without doctor's saying so. Right now > she is on three AED's Lamictal, topomax and Neurontin. One doctor > says that Nuerontin may have increased the seizures. > > I have all the medical records and there is no reason to pippoint > why the seizures have increased. according to me Lamictal or B- > complex have increased the seizures. I have no intention of > decreasing the med's without doctor's guidance. > > The doctor's say that the seizures nay be a genetic reason. But no > one in oue family had these frequent seizures. > > I read the book you said Epilepsy: A New Approach. > > Thanks > Sha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 > Sha, > > Are you familar with SUDEP? It stands for Sudden Unexplained Death in > Epilepsy? If not, I encourage you to do a Goggle search on the subject > and ask your doctors about it. Even though I was diagnosed with > epilepsy more than 34 years ago, I had never heard about SUDEP until > recently. SUDEP is an strange correlation between the taking of > numerous medications for seizure control and sudden death. During my > lifetime I have been on numerous drugs for control of gran mal > seizures. However, I was never one three drugs at the same time. In > the beginning, I was put on Dilatin and Phenobarbital. But, that was > way back in 1966. The medical profession has come a long way since 1966 > when it comes to treating epilepsy. Back in 1966, if you had a single > seizure you went on medication. Today, more and more doctors are > reluctant to seek the solution in a pill if the person only suffered one > seizure. In addition, more and more doctors today who treat epilepsy > refuse to put their patients on numerous drugs to control their seizures > for fear of SUDEP. > > In addition to asking your doctors about SUDEP, I would ask them about > potential adverse reactions from your daughter's taking of three > different medications. You can also find answers regarding adverse > side-effects from the taking of numerous drugs by checking out The Drug > Information Interaction Site. It should be listed as a resource in this > group's group - > . > > Good luck. > > Lamar > > > shat345 wrote: > >> > Hi Lamar: >> > >> > I am getting medical guidance for my daughter's seizures and >> > epilepsy. I have two neurologists working on my daughter's case. The >> > seizure frequesncy increased from 0-2 a month to 22 grand mal >> > seizures and hundresda of myoclonic jerks in september and october. >> > >> > The things that were changed in august were adding the drug Lamictal >> > and the second change was adding b-complex in end of september. She >> > had seizures but not this many. In september she had 11 gand mal and >> > in october she had 22 gand mal. >> > >> > According to my observation, I think that Lamictal or B-complex may >> > have increased her seizure frequency. I am seeing a DAn dcotor for >> > my daughter and tries several supplement suggested by him, but >> > nothing worked and the seizures problem increased dramatically. >> > >> > I never decreased any AED's without doctor's saying so. Right now >> > she is on three AED's Lamictal, topomax and Neurontin. One doctor >> > says that Nuerontin may have increased the seizures. >> > >> > I have all the medical records and there is no reason to pippoint >> > why the seizures have increased. according to me Lamictal or B- >> > complex have increased the seizures. I have no intention of >> > decreasing the med's without doctor's guidance. >> > >> > The doctor's say that the seizures nay be a genetic reason. But no >> > one in oue family had these frequent seizures. >> > >> > I read the book you said Epilepsy: A New Approach. >> > >> > Thanks >> > Sha > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 MIKE I THINK YOUR RIGHT,THE WAY THE DR. STATED IT WAS HIS BRAIN BUSTED/HEM. I JUST COULDN'T THINK OF WHAT IT WAS,MARK Mike Mchugh <mcpitza@...> wrote:This is likely what I believe Mark was referring to regarding the death of his brother. What is Sudden Unexpected Death in Epilepsy (SUDEP)? " SUDEP is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death. " 1 How common is it? Until relatively recently there was little known about this subject and it was believed to be rare. However, research now indicates that it is not that rare. There are around 500 cases in the UK every year which, as a comparison, are more than the annual cases of cot deaths. There are fewer deaths from SUDEP than asthma but, taking into account that more people have asthma than epilepsy, epilepsy carries a relatively much higher risk. Causes Many studies on SUDEP have researched the changes to breathing and heartbeat. These appear to be the most likely causes but further research is needed. It is, for example, unclear whether there is already an existing weakness to the heart and lungs and, if so, how this may be related to epilepsy. One theory is that epilepsy itself, and/or the medication taken, may weaken some people's major organs. The research on heart and respiratory function during seizures has identified the following as possible causes of SUDEP: Sometimes people stop breathing during a tonic-clonic seizure. Usually the breathing returns as the seizure ends but it seems that in some cases this natural recovery may not happen. During a seizure, part of the brain which controls the heartbeat may be affected. It is possible that this could cause an abnormal heart rhythm to develop and in some cases this could be unstable enough to cause the heart to stop beating. Risk factors There is still a great need for further research into SUDEP to ensure it becomes a rare occurrence. Research to date has not managed to identify the exact cause of SUDEP. What has come to light is that there are certain common factors that link many of the cases: a.. Forgetting to take some dosages or not taking the medication at all b.. Taking more than one type of anti-epileptic drug c.. Having frequent changes of anti-epileptic drug dosage d.. Poor seizure control e.. Having seizures during sleep f.. Being alone at the time of the seizure g.. Experiencing tonic-clonic seizures h.. Having brain damage i.. Being a young adult, particularly male When considering the risk factors remember that just because some or more of these may apply it does not mean that someone will die from SUDEP. Prevention Research into SUDEP has increased significantly over the last few years and pressure groups have lobbied strongly for this. Although this research has given us new information it is not clear enough to ensure that SUDEP can be prevented completely. Further studies are urgently needed. In the meantime we can use the information available to give us some ideas of ways of preventing SUDEP: a.. People whose seizures are not well controlled would benefit from regular assessment by an epilepsy specialist in order to ensure optimum seizure control. b.. If anti-epileptic drug treatment has proved unsuccessful treatments such as surgery or vagal nerve stimulation could be explored. c.. There is now a range of newer anti-epileptic drugs available on prescription and it is also possible, at some epilepsy clinics, to participate in trials of new drugs that are not yet licenced. d.. For those whose epilepsy is well controlled, it would be advisable to be monitored by a medical professional and to take the medication regularly as prescribed. e.. Medication should never be abruptly withdrawn as this could cause seizures to occur. This may also increase the risk of death. f.. If anyone has particular health concerns which they believe may put them more at risk, it would be advisable to discuss these with their doctor. g.. There is evidence that the part of the brain which controls breathing can be stimulated to start working again if the person's body or limbs are moved. This needs to be no more than what happens in normal first aid for a seizure, when the person is placed in the recovery position. h.. In many cases of SUDEP the person was alone. It would make sense, therefore, if possible, to stay with someone throughout a seizure and for 15 - 20 minutes or so afterwards to ensure breathing is normal. However this has to be balanced with issues such as the individual's wishes regarding independence and the practicalities of having a companion available whenever needed. Quote Link to comment Share on other sites More sharing options...
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