Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Hello everyone I was wondering if anyone has ever heard of pachgyria? I also suffer from morning seizures only and the doctor has no idea of why they only happen than or why I started having them at the age of 22. I am currently on 1350 mg of trileptal and still am having trouble but they just keep telling that they have no idea. Does anyone have any suggestions? Thanks I hope everyone is having a good weekend J From: [mailto: ] On Behalf Of Sent: Saturday, March 01, 2008 6:40 PM Subject: Re: [ ] Unsure about VNS for my son Hi there, My daughter is 12 and has had the VNS 4 years. It has not stopped the seizures but it has lessend them and given us more control in getting the grand mals stopped fast. My daughter has a very similar history to what you describe. I still see it as one of the best things we have eve done. They increse slowly so sleep has never been a problem...really we have had no problems only good. God bless, Cristy Harding <cah6605@... <mailto:cah6605%40> > wrote: Hello, I could use some input from any one with VNS experience. I know it's not a cure. My 7 yr old son has drop seizures, generalized grand mal and was diagnosed with complex partial seizures. We have failed 6 meds. We are using Depakote- up to 800 mg a day. The Neurologists wants us to keep titrating up. He is also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures this past week and missed alot of school-he is now developmentally delayed. I am concerned about how he will sleep and if it will bother him in his chest. He is only 43lbs. I also worrry that if it doesn't work, he will always have a wire in him he doesn't need. It seems like we need to do this. Please share your experience with us. cah- 's Mom --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 HELLO, MY NAME IS ROBIN HENDRICKS. DO YOU HAVE NIGHTMARES?B/C IT MAY STRESS YOU OUT REALLY BAD AND CAUSE YOU TO HAVE ONE? Sliger <harishai@...> wrote: Hello everyone I was wondering if anyone has ever heard of pachgyria? I also suffer from morning seizures only and the doctor has no idea of why they only happen than or why I started having them at the age of 22. I am currently on 1350 mg of trileptal and still am having trouble but they just keep telling that they have no idea. Does anyone have any suggestions? Thanks I hope everyone is having a good weekend J From: [mailto: ] On Behalf Of Sent: Saturday, March 01, 2008 6:40 PM Subject: Re: [ ] Unsure about VNS for my son Hi there, My daughter is 12 and has had the VNS 4 years. It has not stopped the seizures but it has lessend them and given us more control in getting the grand mals stopped fast. My daughter has a very similar history to what you describe. I still see it as one of the best things we have eve done. They increse slowly so sleep has never been a problem...really we have had no problems only good. God bless, Cristy Harding <cah6605@... <mailto:cah6605%40> > wrote: Hello, I could use some input from any one with VNS experience. I know it's not a cure. My 7 yr old son has drop seizures, generalized grand mal and was diagnosed with complex partial seizures. We have failed 6 meds. We are using Depakote- up to 800 mg a day. The Neurologists wants us to keep titrating up. He is also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures this past week and missed alot of school-he is now developmentally delayed. I am concerned about how he will sleep and if it will bother him in his chest. He is only 43lbs. I also worrry that if it doesn't work, he will always have a wire in him he doesn't need. It seems like we need to do this. Please share your experience with us. cah- 's Mom --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 TO EVERYONE: THERE IS A VITAMIM NAMED MAGANESE THAT IS SUPPOSE TO HELP WITH SEIZURES. A WHILE BACK A HAD A BIG SUGERY AND I WAS WORRIED I WOULD HAVE ONE DURNING IT. THEY SAID,'THEY WOULD GIVE ME OXYGEN TO STOP IT. " I AM WONDERING IF WE ALL HAD ONE WOULD THIS WORK. " Robin W. Hendricks " <robinwool@...> wrote: HELLO, MY NAME IS ROBIN HENDRICKS. DO YOU HAVE NIGHTMARES?B/C IT MAY STRESS YOU OUT REALLY BAD AND CAUSE YOU TO HAVE ONE? Sliger <harishai@...> wrote: Hello everyone I was wondering if anyone has ever heard of pachgyria? I also suffer from morning seizures only and the doctor has no idea of why they only happen than or why I started having them at the age of 22. I am currently on 1350 mg of trileptal and still am having trouble but they just keep telling that they have no idea. Does anyone have any suggestions? Thanks I hope everyone is having a good weekend J From: [mailto: ] On Behalf Of Sent: Saturday, March 01, 2008 6:40 PM Subject: Re: [ ] Unsure about VNS for my son Hi there, My daughter is 12 and has had the VNS 4 years. It has not stopped the seizures but it has lessend them and given us more control in getting the grand mals stopped fast. My daughter has a very similar history to what you describe. I still see it as one of the best things we have eve done. They increse slowly so sleep has never been a problem...really we have had no problems only good. God bless, Cristy Harding <cah6605@... <mailto:cah6605%40> > wrote: Hello, I could use some input from any one with VNS experience. I know it's not a cure. My 7 yr old son has drop seizures, generalized grand mal and was diagnosed with complex partial seizures. We have failed 6 meds. We are using Depakote- up to 800 mg a day. The Neurologists wants us to keep titrating up. He is also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures this past week and missed alot of school-he is now developmentally delayed. I am concerned about how he will sleep and if it will bother him in his chest. He is only 43lbs. I also worrry that if it doesn't work, he will always have a wire in him he doesn't need. It seems like we need to do this. Please share your experience with us. cah- 's Mom --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 , Hi. I also suffer from morning seizures. They happen either in the middle of the night when I am waking up, or when I am waking up in the morning. I just started having these around the age of 20. I am 24 now and am undergoing diagnosis and am currently not on medication as I had no idea what was going on with me and I just thought they were really horrible nightmares. Are you conscious during your seizures? Do you remember anything about them, about the sensations? Warm Regards, Kishar > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 I have no nightmares or anything like that, I hardly remember my dreams. Re: [ ] Unsure about VNS for my son Hi there, My daughter is 12 and has had the VNS 4 years. It has not stopped the seizures but it has lessend them and given us more control in getting the grand mals stopped fast. My daughter has a very similar history to what you describe. I still see it as one of the best things we have eve done. They increse slowly so sleep has never been a problem...really we have had no problems only good. God bless, Cristy Harding <cah6605@... <mailto:cah6605%40> > wrote: Hello, I could use some input from any one with VNS experience. I know it's not a cure. My 7 yr old son has drop seizures, generalized grand mal and was diagnosed with complex partial seizures. We have failed 6 meds. We are using Depakote- up to 800 mg a day. The Neurologists wants us to keep titrating up. He is also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures this past week and missed alot of school-he is now developmentally delayed. I am concerned about how he will sleep and if it will bother him in his chest. He is only 43lbs. I also worrry that if it doesn't work, he will always have a wire in him he doesn't need. It seems like we need to do this. Please share your experience with us. cah- 's Mom --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Do you have pachgyria? Isnt this a brain issue? My son has agenesis of the corpus callosum(the movie " Rain man " ). My son's seizures was promenent during sleep time(this is when he had the worst grands). This always kinda baffled me. Maybe our brains are working differently during sleep verses wake and fatigue( a different neuro state). I can tell you that I did noticed he had a lot of gi distress during the nights/naps, maybe this is why they was so promenent for him during sleeping hours. Gi healing has controled his sleep seizures(the gi/brain are neuro linked). Maybe your brain isnt quite in full wake mode during the morning? Have you considered what you drink/eat when you first eat? Maybe a toxin, perfume, the room you first go to after waking? Consider taking magnesium!! It is a natural calming mineral! Jennie<>< > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 My son used to have seizure during waking hours only, that I knew. What finally ended working for him after we had done all the cleanses and keto diet (which worked well) but it was way to hair pulling to keep him going on it. I felt as if I was fighting against the world, in fact I was! I read a lot of different things and try them, I received this one book from a author that I truly admire Sam Biser. He was talking about protein and power it gives the body and he was telling his readers about the protein in raw eggs and how it feeds the body. So that got me to thinking hoe the keto diet work so well with him and he doesn't get a lot of protein in his daily diet (his preference is carb's) Like most Americans. At the time I would occasionally give him protein shakes for something different and I thought what the heck we will try Sam's idea so I threw some raw eggs in his shake and from that day on not a seizure nor a headache, it has been over a year and a half now. When we get sick with any kind of ailment, it is our body screaming for the missing nutrient your body assimilates and distributes it in your intestines and when your not getting the nutrients or you have the build of years and some few years to where it is much tougher to break threw that cement wall from the mucous forming foods. When you have a build up your only assuming 7%-8% of the nutrients that you are consuming. I can go more into it if anyone is interested. Please remember, whatever enters can exit! I Conquered MS and My son Conquered Epilepsy and so can you! You can read the start of my journey at www.ginakopera.com Kopera Jennie <mykidshisgift@...> wrote: Do you have pachgyria? Isnt this a brain issue? My son has agenesis of the corpus callosum(the movie " Rain man " ). My son's seizures was promenent during sleep time(this is when he had the worst grands). This always kinda baffled me. Maybe our brains are working differently during sleep verses wake and fatigue( a different neuro state). I can tell you that I did noticed he had a lot of gi distress during the nights/naps, maybe this is why they was so promenent for him during sleeping hours. Gi healing has controled his sleep seizures(the gi/brain are neuro linked). Maybe your brain isnt quite in full wake mode during the morning? Have you considered what you drink/eat when you first eat? Maybe a toxin, perfume, the room you first go to after waking? Consider taking magnesium!! It is a natural calming mineral! Jennie<>< > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi ! Thank you so much for this information! I well go explore your site! I have recently heard of this mucous! Are you referring to the mucous that lines the intestinal walls and causing problems(malabsorb, reflux, etc)! If so, I am thinking that when my son had a magnesium citrate cleanse(gastro script) that is why we seen huge improvements with our son after the cleanse ie. verbal, strength, viral issues, seizures etc. I can be way off on this, especially since the mucous issue is so new to me!! Is it possible this mucous was broken down? I agree that lack of is a big factor in triggering seizures as well! We found that magnesium worked for our son! I have often worried that my son is not getting the protein he needs. He is not able to have any meats(I have come accross info that the protein in meats is not the write/good protein our bodies needs anyways). I am leary with the protiens due to they can cause constipation issues. My son has motility issues that leads to this. But on occaision I do give him an egg. For the time being he is on a supplement that has some protein in it. That is awesome with you and your sons recovery!! Jennie<>< Kopera <ginakopera1@...> wrote: My son used to have seizure during waking hours only, that I knew. What finally ended working for him after we had done all the cleanses and keto diet (which worked well) but it was way to hair pulling to keep him going on it. I felt as if I was fighting against the world, in fact I was! I read a lot of different things and try them, I received this one book from a author that I truly admire Sam Biser. He was talking about protein and power it gives the body and he was telling his readers about the protein in raw eggs and how it feeds the body. So that got me to thinking hoe the keto diet work so well with him and he doesn't get a lot of protein in his daily diet (his preference is carb's) Like most Americans. At the time I would occasionally give him protein shakes for something different and I thought what the heck we will try Sam's idea so I threw some raw eggs in his shake and from that day on not a seizure nor a headache, it has been over a year and a half now. When we get sick with any kind of ailment, it is our body screaming for the missing nutrient your body assimilates and distributes it in your intestines and when your not getting the nutrients or you have the build of years and some few years to where it is much tougher to break threw that cement wall from the mucous forming foods. When you have a build up your only assuming 7%-8% of the nutrients that you are consuming. I can go more into it if anyone is interested. Please remember, whatever enters can exit! I Conquered MS and My son Conquered Epilepsy and so can you! You can read the start of my journey at www.ginakopera.com Kopera Jennie <mykidshisgift@...> wrote: Do you have pachgyria? Isnt this a brain issue? My son has agenesis of the corpus callosum(the movie " Rain man " ). My son's seizures was promenent during sleep time(this is when he had the worst grands). This always kinda baffled me. Maybe our brains are working differently during sleep verses wake and fatigue( a different neuro state). I can tell you that I did noticed he had a lot of gi distress during the nights/naps, maybe this is why they was so promenent for him during sleeping hours. Gi healing has controled his sleep seizures(the gi/brain are neuro linked). Maybe your brain isnt quite in full wake mode during the morning? Have you considered what you drink/eat when you first eat? Maybe a toxin, perfume, the room you first go to after waking? Consider taking magnesium!! It is a natural calming mineral! Jennie<>< > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 HI, Your welcome! The main organ that you want to keep clear is the colon and that is were all the mucous is getting stuck and after time it just keeps building up and pretty soon you have a hard casing over your intestinal walls, therefore the nutrients will not absorb threw. I went vegetarian for a couple of years and I know that I will never do that one again. Once I started consuming meat again , wow ! The energy that came back was incredible! You have to make that call and listen to your body. I do know to let the body heal you must stay away from meat, it is hard to process and takes a lot of energy to do so. The eggs that I gave my son are organic farm fresh from a local farmer and yes that makes the world of difference. If you never had farm fresh eggs, try to locate them and give it a whirl even in the frying pan, you will never want store bought again. And of course when you cook them as fruits and vegetables it takes away nutrients that is why the raw worked so well. To answer the question: Q:Is that gross tasting? A: No it is not it taste like you added vanilla to your shake and for my son I mix Spirutein Cookies and cream that is what he likes Q:Salmonella? A:Salmonella is transferred from sick chickens and dirty eggs, when you have a small farmer he pays attention to his cute little chicks and I know my guy would get rid of a sick chicken and he cleans the eggs before delivery. Kopera Jennie <mykidshisgift@...> wrote: Hi ! Thank you so much for this information! I well go explore your site! I have recently heard of this mucous! Are you referring to the mucous that lines the intestinal walls and causing problems(malabsorb, reflux, etc)! If so, I am thinking that when my son had a magnesium citrate cleanse(gastro script) that is why we seen huge improvements with our son after the cleanse ie. verbal, strength, viral issues, seizures etc. I can be way off on this, especially since the mucous issue is so new to me!! Is it possible this mucous was broken down? I agree that lack of is a big factor in triggering seizures as well! We found that magnesium worked for our son! I have often worried that my son is not getting the protein he needs. He is not able to have any meats(I have come accross info that the protein in meats is not the write/good protein our bodies needs anyways). I am leary with the protiens due to they can cause constipation issues. My son has motility issues that leads to this. But on occaision I do give him an egg. For the time being he is on a supplement that has some protein in it. That is awesome with you and your sons recovery!! Jennie<>< Kopera <ginakopera1@...> wrote: My son used to have seizure during waking hours only, that I knew. What finally ended working for him after we had done all the cleanses and keto diet (which worked well) but it was way to hair pulling to keep him going on it. I felt as if I was fighting against the world, in fact I was! I read a lot of different things and try them, I received this one book from a author that I truly admire Sam Biser. He was talking about protein and power it gives the body and he was telling his readers about the protein in raw eggs and how it feeds the body. So that got me to thinking hoe the keto diet work so well with him and he doesn't get a lot of protein in his daily diet (his preference is carb's) Like most Americans. At the time I would occasionally give him protein shakes for something different and I thought what the heck we will try Sam's idea so I threw some raw eggs in his shake and from that day on not a seizure nor a headache, it has been over a year and a half now. When we get sick with any kind of ailment, it is our body screaming for the missing nutrient your body assimilates and distributes it in your intestines and when your not getting the nutrients or you have the build of years and some few years to where it is much tougher to break threw that cement wall from the mucous forming foods. When you have a build up your only assuming 7%-8% of the nutrients that you are consuming. I can go more into it if anyone is interested. Please remember, whatever enters can exit! I Conquered MS and My son Conquered Epilepsy and so can you! You can read the start of my journey at www.ginakopera.com Kopera Jennie <mykidshisgift@...> wrote: Do you have pachgyria? Isnt this a brain issue? My son has agenesis of the corpus callosum(the movie " Rain man " ). My son's seizures was promenent during sleep time(this is when he had the worst grands). This always kinda baffled me. Maybe our brains are working differently during sleep verses wake and fatigue( a different neuro state). I can tell you that I did noticed he had a lot of gi distress during the nights/naps, maybe this is why they was so promenent for him during sleeping hours. Gi healing has controled his sleep seizures(the gi/brain are neuro linked). Maybe your brain isnt quite in full wake mode during the morning? Have you considered what you drink/eat when you first eat? Maybe a toxin, perfume, the room you first go to after waking? Consider taking magnesium!! It is a natural calming mineral! Jennie<>< > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi : I was reading about the protein issues that you are discribing. I have had for a long time a hard time with red meat. It made me very depressed and sick. I stopped eating it. Felt better. I also have parcial seizures in the morning and agravated by hormones. This improved tremendously with hormono replacement. It did not go away completeley. I went to India and went almost vegetarian for several months. At first I felt great, my skin was clean and had plenty of energy, but later I started having ringing in the ears. I noticed that when I don't eat protein it gets worst. If I eat fish 3 times a day it gets way better. years ago I stopped the ringing with magnesium, however, this time it did not work. I also take vitamins and notice a big difference when I don't take them in my energy level. I am suspecting mal absortion and disbiosis. does this ring a bell?? I have done liver cleanses, kidney cleanses and parasite cleanses. I am thinking of doing the 3 day colon cleanse . I don't understand how people say there is a plaque that lines the colon, because when they do a colonoscopy, there is nothing there. I am puzzled??? I am thinking that the body does not metabolize protein or absorves improperly and the brain is starving. My hair is also been falling out for a long time. Unexplainable. Any info is always appreciate. Thanks, Re: [ ] Re: Morning Seizures Hi ! Thank you so much for this information! I well go explore your site! I have recently heard of this mucous! Are you referring to the mucous that lines the intestinal walls and causing problems(malabsorb, reflux, etc)! If so, I am thinking that when my son had a magnesium citrate cleanse(gastro script) that is why we seen huge improvements with our son after the cleanse ie. verbal, strength, viral issues, seizures etc. I can be way off on this, especially since the mucous issue is so new to me!! Is it possible this mucous was broken down? I agree that lack of is a big factor in triggering seizures as well! We found that magnesium worked for our son! I have often worried that my son is not getting the protein he needs. He is not able to have any meats(I have come accross info that the protein in meats is not the write/good protein our bodies needs anyways). I am leary with the protiens due to they can cause constipation issues. My son has motility issues that leads to this. But on occaision I do give him an egg. For the time being he is on a supplement that has some protein in it. That is awesome with you and your sons recovery!! Jennie<>< Kopera <ginakopera1> wrote: My son used to have seizure during waking hours only, that I knew. What finally ended working for him after we had done all the cleanses and keto diet (which worked well) but it was way to hair pulling to keep him going on it. I felt as if I was fighting against the world, in fact I was! I read a lot of different things and try them, I received this one book from a author that I truly admire Sam Biser. He was talking about protein and power it gives the body and he was telling his readers about the protein in raw eggs and how it feeds the body. So that got me to thinking hoe the keto diet work so well with him and he doesn't get a lot of protein in his daily diet (his preference is carb's) Like most Americans. At the time I would occasionally give him protein shakes for something different and I thought what the heck we will try Sam's idea so I threw some raw eggs in his shake and from that day on not a seizure nor a headache, it has been over a year and a half now. When we get sick with any kind of ailment, it is our body screaming for the missing nutrient your body assimilates and distributes it in your intestines and when your not getting the nutrients or you have the build of years and some few years to where it is much tougher to break threw that cement wall from the mucous forming foods. When you have a build up your only assuming 7%-8% of the nutrients that you are consuming. I can go more into it if anyone is interested. Please remember, whatever enters can exit! I Conquered MS and My son Conquered Epilepsy and so can you! You can read the start of my journey at www.ginakopera. com Kopera Jennie <mykidshisgift> wrote: Do you have pachgyria? Isnt this a brain issue? My son has agenesis of the corpus callosum(the movie " Rain man " ). My son's seizures was promenent during sleep time(this is when he had the worst grands). This always kinda baffled me. Maybe our brains are working differently during sleep verses wake and fatigue( a different neuro state). I can tell you that I did noticed he had a lot of gi distress during the nights/naps, maybe this is why they was so promenent for him during sleeping hours. Gi healing has controled his sleep seizures(the gi/brain are neuro linked). Maybe your brain isnt quite in full wake mode during the morning? Have you considered what you drink/eat when you first eat? Maybe a toxin, perfume, the room you first go to after waking? Consider taking magnesium!! It is a natural calming mineral! Jennie<>< > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > ------------ --------- --------- --- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi : I also have morning seizures partial. here are somethings that make a difference. allergies especially to dairy. and spicy food. lack of sleep or staying up late low magnesium and B's low hormones progesterone and estrogen caffeine or other stimulants Calcium, ginko b ulova, exposure to computers or tv. Here is my theory about why they happen in the morning. I think the body puts out a chemical to put you to sleep and another to wake you up. I think that people who have seizures have a focal point that is irritated. When you wake up in the morning the brain puts out a stimulating chemical to wake you up and that only makes the irritated spot worst. Maybe the problem is a lack of calming chemical. That is why magnesium works. I recommend that you avoid all af the above for 1 week and add a the minerals and vitamins. Read the labels carefully to avoid the stimulating stuff. Take the B's in the morning so they don't keep you up at night. Take minerals at night. avoid calcium and add magnesium Try this for a few days and see if you get better. Then add each thing to see which one is a trigger. No drugs, No alcohol. If this is going to work you will see it right away. by the second or third day of being clean and well nurished as indicated above. What did you start doing at 22 that is different. Extreme stress or extreme upset can also trigger seizures the next day or that night. Good luck Re: [ ] Unsure about VNS for my son Hi there, My daughter is 12 and has had the VNS 4 years. It has not stopped the seizures but it has lessend them and given us more control in getting the grand mals stopped fast. My daughter has a very similar history to what you describe. I still see it as one of the best things we have eve done. They increse slowly so sleep has never been a problem...really we have had no problems only good. God bless, Cristy Harding <cah6605 (DOT) com <mailto:cah6605% 40> > wrote: Hello, I could use some input from any one with VNS experience. I know it's not a cure. My 7 yr old son has drop seizures, generalized grand mal and was diagnosed with complex partial seizures. We have failed 6 meds. We are using Depakote- up to 800 mg a day. The Neurologists wants us to keep titrating up. He is also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures this past week and missed alot of school-he is now developmentally delayed. I am concerned about how he will sleep and if it will bother him in his chest. He is only 43lbs. I also worrry that if it doesn't work, he will always have a wire in him he doesn't need. It seems like we need to do this. Please share your experience with us. cah- 's Mom ------------ --------- --------- --- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Thanks everyone for your advice. I will try a few of your ideas. Raw eggs I know will not be one of them...I can barly get cooked eggs down. I do have to say though farm fresh eggs are much better than store bought eggs. I grew up on farm fresh eggs and they taste better and are much better for you when it come to nutrients.? Jsut my own opinion. ?Thanks everyone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Kishar, ???? I also don't know what is going on with me as well.. All my siezures have been in the morning and my first one I had at age 21 as well was when I was asleep. I loss all consciousness and don't remember what happen. I do though have moments were I can tell if I don't stop and concentrate on one thing in the morning that I am going to have a seizure. I start to shake real bad and sometimes I make a snorting noise it is?really disturbing and my heart starts to beat hard. Its almost like a out of body experience. I am taking trileptal which I really am not happy about taking meds but I have tried not taking it and I end up having seizures in excess amounts in one day. I have gone from the 75 mg a day to taking now 1350 mg. My seizures though only happen once every three to four months on the meds but without them I wouldn't be able to function. I hope the doctors are able to help you. [ ] Re: Morning Seizures , Hi. I also suffer from morning seizures. They happen either in the middle of the night when I am waking up, or when I am waking up in the morning. I just started having these around the age of 20. I am 24 now and am undergoing diagnosis and am currently not on medication as I had no idea what was going on with me and I just thought they were really horrible nightmares. Are you conscious during your seizures? Do you remember anything about them, about the sensations? Warm Regards, Kishar > Hello, > I could use some input from any one with VNS experience. I know it's not a > cure. > My 7 yr old son has drop seizures, generalized grand mal and was diagnosed > with complex partial seizures. We have failed 6 meds. We are using Depakote- > up to 800 mg a day. The Neurologists wants us to keep titrating up. He is > also on Lamictal, Klonipin and the Ketogenic diet. He has had 12 seizures > this past week and missed alot of school-he is now developmentally delayed. > > I am concerned about how he will sleep and if it will bother him in his > chest. He is only 43lbs. I also worrry that if it doesn't work, he will > always have a wire in him he doesn't need. It seems like we need to do this. > Please share your experience with us. > > cah- 's Mom > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.