I had epilepsy for 13 years, and lately started experiancing severe side affects from the medications. After switching to the keto diet I managed to control my seizures without any medications, and my overall health improved significantly!
I had epilepsy for 35 years. I did a very strict 4:1 keto diet long before it was "trending" as a weight loss gimmick. It did help considerably but it was only when I went fully carnivore that my seizures stopped completely. I am off of 4/5ths of the meds I used to take and working on that last 1/5. Epilepsy drugs are a bear to titrate off of. I have come to the conclusion that being in ketosis is important but chasing higher numbers on the ketone meter is not. Carnivore is wonderful because you don't need to weigh and measure every morsel of food. You just eat meat. Much easier to maintain. I stay in a steady low level ketosis. No supplements needed and no concerns about too little protein. That Metabolic Summit in May sounds fascinating. I would love to meet Dr. Kossoff. I think I will sign up for that.
I was left with Complex Partial Seizures in 2005 after blows to the head through DV which damaged my "Left temporal Lobe". The first year I was having CPS, 6 months apart until the Drs started me on Epelim which I stopped suddenly in 2006 because of the side effects. I have around 2-4 CPS over a period of a few days, monthly but over the past 2 years they have turned into Drop Seizures, I have had about 6 Drop Seizures over the past 2 years. I recently had 2 bad falls over a 6-week period and hit my head on the ground both times all is ok but it has taken me weeks to get over them, and I never remember anything except l am just drained of energy & a bit sore. They want me to start back on medication as I stopped meds in 2012 because of side effects and most have not really worked but I am refusing all meds at present. I am trying to find some help with the Keto diet & have been listening to Dr Steven Gundry ("Unlocking the Keto Code" recently published )& the Neurologist Dr David Perlmutter who has many books. I was recommended through a TBI site to look up Dr Eric Kossoff but by the sounds of it, he is not interested in helping adults with seizures. My email is hadley.laura@gmail.com if you could help. Thank you, Laura
@@LifeIsWonderful675 That sounds awful, Laura. Every case of epilepsy is different and I am not a neurologist. Your epilepsy is caused by an injury while my brain is structurally sound so our two cases are very different. That said, while I don't know if ketosis can cure your seizure disorder or not, I do know that it can help you be a healthier human being in general. It can also help your metabolism run better which can allow you to take a much smaller dosage of any given Rx thus avoiding the worst of the side effects. I'm not saying it won't work, I'm just saying that I can't promise it will. The website of Johns Hopkins is a good place to start looking for answers. Some other carnivore Docs to look up are Dr. Georgia Ede a psychiatrist and Dr. Anthony Chaffee who is a neurosurgeon.
@@robinbeers6689 Thank you so much for your reply I will look them up. It is all so time-consuming when you know you need to do something ASAP. It would be gr8 to find a Dr in Australia preferably Brisbane that could help but I seem to be doing it all on my own. I am about to look up a Dietician in Brisbane, maybe contact J.H.H to see what they could recommend as they are supposed to have Drs from all over the world there.
@@robinbeers6689 why keto and carnivore is so effective is not about "diet" but because we start healing Inner stuff..like lover inflamation, insulin..cortisol..so this is crutial for all disease..
Only 3 weeks ago, I had a huge tonic clonic seizure completely out of the blue. I have been low carb for 6 years, but my sleep was severely compromised and I have a small brain tumor. The first drug I received caused a terrible reaction that put me back in the hospital. I have restricted my carbs further, but I need to learn more.
The problem is not that. First, this thought that KD "dropped in popularity" because of antiseizure medication is false. It has been used almost continuously, and is still used IN KIDS. One problem is specific for "medical" KD. Fake, nasty foods. Most neurologists prescribe KD and a registered dietician implements it. The same RD who will tell an adult with diabetes a KD will kill them. The RD then NOW prescribes a series of corporate products, the epitome of ultra processed crap that no one should eat. This is a major problem because it no longer is a holistically healthy diet, it is a toxic concoction of seed/industrial oils and artificial chemicals. For adults, there is a lack of systems for the delivery of care. Most adult neurologists know this: "KD is a great option for children with severe symptomatic epilepsy. Adults? Oh, no... maybe if they have LGS or something... anyway, it doesn't work for adults because they can't be compliant". Because of that, there are no delivery systems: that includes doctors who will not prescribe or EVEN MENTION, dieticians and ancillary staff that can help start and monitor KD. This is not the same as KD for diabetes or weight loss, it is a little bit more unforgiving when it comes to "mistakes" so probably more intensive monitoring is required, on the one hand, and ALL patients require some education for this anyway. The patients are not to blame, but they also are more likely to have heard the mainstream media coverage of KD. Therefore, a majority will recoil if a doctor actually end up mentioning it. "My doctor said to never even do KD. I am afraid to even go to dinner with someone who eats a KD lest I have a heart attack right then and there".
A fast is sometimes used when starting off the diet to get someone into ketosis as soon as possible. As an adult with epilepsy, I eat OMAD style and do a longer fast (2-3 days) about once a month or so. This isn't anything a neurologist told me to do however. I had to figure it out on my own.
The more proof we throw at the general public on how great living in ketosis really is the worse the general public gets. People would rather chocolate cake with a side of prescription medication……very sad.
I see this sometimes on the epilepsy support forums I frequent. People are willing to get their heads cut open and take all kinds of meds with a laundry list of serious side effects but when someone says keto, the response is, "Oh, but I couldn't give up my bread and cookies". SMH.
So true and its hard. I went keto when my liver got sick and I was almost diabetic. I had lots of symptoms. I had been plant based by the way. Keto healed me 50% in 3 months and last check up 100%. I know have a Great Granddaughter with epilepsy, and they are going to try keto.
They at once tell us we can’t do it, and repeat that line over and over again and openly wonder when you’ve already stuck with it for three or more years, which is what gets me.
Now there's an adult centre at John Hopkins hospital. Last year I asked Kossoff advice for adult refractory epilepsy. His short answer for me, as an adult with refractory epilepsy for 28 years after a TBI. Despite being on numerous epileptic medications, temporal lobectomy and traditional keto diet for longer than 1 year, my epilepsy is not controlled. Kossoff told me that I shouldn't ask him anything according adult epilepsy because his interest is pediatric epilepsy and his not interested about adults. Don't waste your emotions to ask him anything if you are adult.
Did you see the reply from Robin Beers in this thread about only going totally carnivore not just keto stopped the seizures? Maybe you could dialog with her/him to see if that option would help you.
@@earlylearninggoodies2178 Yes I have had Complex Parcial Seizures since 2005 after a TBI through DV. I stopped meds but the seizures have become Drop seizures instead of CPS or Focal I think they call them now. I am trying to start Keto in Australia but can't get much help. Very disappointed to read Johann's post.
Hi, Johann were you able to contact Robyn Beers ? Very disappointed reading what you have said about this Dr that I was recommended to research. l suffered TBI in 2005 through DV and was left with CPS, l have had 7 Drop Seizures over the last 2yrs and stopped medication 10yrs ago. Because of the Drop seizures, the Drs are wanting me on Keppra, (which I tried but it didn't work) again. l have been looking into Keto, stem cells anything but these terrible drugs.
So sad to hear.. I heard from some patients their issues got resolved when they went fully clean carnivore.. And one of such comments I read just ten minutes ago at another video... I was wondering what about the adults. but hearing your experience I need a bucket to puke in. So rude
I'm a epileptic 57 about 172 weight and also have a enzyme deficiency disorder my ketones doesn't seem to go above 40 percent does this mean my body can't get into ketosis should I scrap the diet all together
I've had undiagnosed grand mal / clonic tonic seizure epilepsy since I was 14. Still shows up when I'm fatigued or some stress situation. I'm 63 medication hasn't been a total help. I'm a non red meat eater since 35. Find this interesting.
My epilepsy is caused by my exes steel toe boot kicking me over and over again in my head. Yeah I don’t think so. That’s something people don’t know, like with the photosensitive epilepsy, some of it is caused by injury
Sometimes electrolyte imbalances happen when transitioning to keto that can cause some heart palpitations. A bit of salt or a sugar free electrolyte supplement solves this. It's not a big deal.
Juvenile myoclonic epilepsy (JME) is the most common generalized epilepsy syndrome. If you are having seizures, please work with your doctor for appropriate diagnosis and treatment.
where are the adult epilepsy ketogenic experts? Why just children... I know it started there, but children become adults. We stop caring once people get public hair?
I would love to know why it generally works better in children than adults. Have a relative that does keto but it does nothing for the betterment of his temporal lobe epilepsy, unfortunately.
@@sandrasaddleman581 Yes, I like the simplicity too. For me I found that, while keto helped a lot, going fully carnivore has stopped my seizures entirely. I like being able to just eat without all the weighing and measuring and calculating ratios that goes into keto.
I had epilepsy for 13 years, and lately started experiancing severe side affects from the medications.
After switching to the keto diet I managed to control my seizures without any medications, and my overall health improved significantly!
I had epilepsy for 35 years. I did a very strict 4:1 keto diet long before it was "trending" as a weight loss gimmick. It did help considerably but it was only when I went fully carnivore that my seizures stopped completely. I am off of 4/5ths of the meds I used to take and working on that last 1/5. Epilepsy drugs are a bear to titrate off of.
I have come to the conclusion that being in ketosis is important but chasing higher numbers on the ketone meter is not. Carnivore is wonderful because you don't need to weigh and measure every morsel of food. You just eat meat. Much easier to maintain. I stay in a steady low level ketosis. No supplements needed and no concerns about too little protein.
That Metabolic Summit in May sounds fascinating. I would love to meet Dr. Kossoff. I think I will sign up for that.
I was left with Complex Partial Seizures in 2005 after blows to the head through DV which damaged my "Left temporal Lobe". The first year I was having CPS, 6 months apart until the Drs started me on Epelim which I stopped suddenly in 2006 because of the side effects. I have around 2-4 CPS over a period of a few days, monthly but over the past 2 years they have turned into Drop Seizures, I have had about 6 Drop Seizures over the past 2 years. I recently had 2 bad falls over a 6-week period and hit my head on the ground both times all is ok but it has taken me weeks to get over them, and I never remember anything except l am just drained of energy & a bit sore.
They want me to start back on medication as I stopped meds in 2012 because of side effects and most have not really worked but I am refusing all meds at present. I am trying to find some help with the Keto diet & have been listening to Dr Steven Gundry ("Unlocking the Keto Code" recently published )& the Neurologist Dr David Perlmutter who has many books. I was recommended through a TBI site to look up Dr Eric Kossoff but by the sounds of it, he is not interested in helping adults with seizures. My email is hadley.laura@gmail.com if you could help. Thank you, Laura
@@LifeIsWonderful675 That sounds awful, Laura. Every case of epilepsy is different and I am not a neurologist. Your epilepsy is caused by an injury while my brain is structurally sound so our two cases are very different. That said, while I don't know if ketosis can cure your seizure disorder or not, I do know that it can help you be a healthier human being in general. It can also help your metabolism run better which can allow you to take a much smaller dosage of any given Rx thus avoiding the worst of the side effects. I'm not saying it won't work, I'm just saying that I can't promise it will.
The website of Johns Hopkins is a good place to start looking for answers. Some other carnivore Docs to look up are Dr. Georgia Ede a psychiatrist and Dr. Anthony Chaffee who is a neurosurgeon.
@@robinbeers6689 Thank you so much for your reply I will look them up. It is all so time-consuming when you know you need to do something ASAP. It would be gr8 to find a Dr in Australia preferably Brisbane that could help but I seem to be doing it all on my own. I am about to look up a Dietician in Brisbane, maybe contact J.H.H to see what they could recommend as they are supposed to have Drs from all over the world there.
@@LifeIsWonderful675 what do you eat? I start carnivore is amazing
@@robinbeers6689 why keto and carnivore is so effective is not about "diet" but because we start healing Inner stuff..like lover inflamation, insulin..cortisol..so this is crutial for all disease..
The master. Dr. Kossoff's teachings are our guidance. Thank you so much.
Dr. Kossoff, please: more books, interviews, articles...!!! (and Cervenka!)
Cervenka
Thanks to the Charlie Foundation and the Movie; "First Do No Harm."
Only 3 weeks ago, I had a huge tonic clonic seizure completely out of the blue. I have been low carb for 6 years, but my sleep was severely compromised and I have a small brain tumor. The first drug I received caused a terrible reaction that put me back in the hospital. I have restricted my carbs further, but I need to learn more.
Wonderful and hope more info gets to adult patients who want this as an option.
The problem is not that. First, this thought that KD "dropped in popularity" because of antiseizure medication is false. It has been used almost continuously, and is still used IN KIDS.
One problem is specific for "medical" KD. Fake, nasty foods. Most neurologists prescribe KD and a registered dietician implements it. The same RD who will tell an adult with diabetes a KD will kill them. The RD then NOW prescribes a series of corporate products, the epitome of ultra processed crap that no one should eat. This is a major problem because it no longer is a holistically healthy diet, it is a toxic concoction of seed/industrial oils and artificial chemicals.
For adults, there is a lack of systems for the delivery of care. Most adult neurologists know this: "KD is a great option for children with severe symptomatic epilepsy. Adults? Oh, no... maybe if they have LGS or something... anyway, it doesn't work for adults because they can't be compliant". Because of that, there are no delivery systems: that includes doctors who will not prescribe or EVEN MENTION, dieticians and ancillary staff that can help start and monitor KD. This is not the same as KD for diabetes or weight loss, it is a little bit more unforgiving when it comes to "mistakes" so probably more intensive monitoring is required, on the one hand, and ALL patients require some education for this anyway. The patients are not to blame, but they also are more likely to have heard the mainstream media coverage of KD. Therefore, a majority will recoil if a doctor actually end up mentioning it. "My doctor said to never even do KD. I am afraid to even go to dinner with someone who eats a KD lest I have a heart attack right then and there".
Do they ever use fasting (8, 24, or 48 hours) in the treatment of epilepsy (for either children or adults)?
A fast is sometimes used when starting off the diet to get someone into ketosis as soon as possible. As an adult with epilepsy, I eat OMAD style and do a longer fast (2-3 days) about once a month or so. This isn't anything a neurologist told me to do however. I had to figure it out on my own.
Robin. How did that work for you?
The more proof we throw at the general public on how great living in ketosis really is the worse the general public gets. People would rather chocolate cake with a side of prescription medication……very sad.
I see this sometimes on the epilepsy support forums I frequent. People are willing to get their heads cut open and take all kinds of meds with a laundry list of serious side effects but when someone says keto, the response is, "Oh, but I couldn't give up my bread and cookies". SMH.
So true and its hard. I went keto when my liver got sick and I was almost diabetic. I had lots of symptoms. I had been plant based by the way. Keto healed me 50% in 3 months and last check up 100%. I know have a Great Granddaughter with epilepsy, and they are going to try keto.
Totaly agree!
No what happened was the pharmaceutical company started paying to suppress this info that’s how it disappeared
Really enjoyed this talk. thank you 🙂x
They at once tell us we can’t do it, and repeat that line over and over again and openly wonder when you’ve already stuck with it for three or more years, which is what gets me.
A lot of Dieticians need re-educating, my child's one suggested pouring rubbish veg/seed oils over her food to add fats! (For epilepsy)
Now there's an adult centre at John Hopkins hospital. Last year I asked Kossoff advice for adult refractory epilepsy. His short answer for me, as an adult with refractory epilepsy for 28 years after a TBI. Despite being on numerous epileptic medications, temporal lobectomy and traditional keto diet for longer than 1 year, my epilepsy is not controlled. Kossoff told me that I shouldn't ask him anything according adult epilepsy because his interest is pediatric epilepsy and his not interested about adults. Don't waste your emotions to ask him anything if you are adult.
Did you see the reply from Robin Beers in this thread about only going totally carnivore not just keto stopped the seizures? Maybe you could dialog with her/him to see if that option would help you.
@@earlylearninggoodies2178 Yes I have had Complex Parcial Seizures since 2005 after a TBI through DV. I stopped meds but the seizures have become Drop seizures instead of CPS or Focal I think they call them now. I am trying to start Keto in Australia but can't get much help. Very disappointed to read Johann's post.
Hi, Johann were you able to contact Robyn Beers ? Very disappointed reading what you have said about this Dr that I was recommended to research. l suffered TBI in 2005 through DV and was left with CPS, l have had 7 Drop Seizures over the last 2yrs and stopped medication 10yrs ago. Because of the Drop seizures, the Drs are wanting me on Keppra, (which I tried but it didn't work) again. l have been looking into Keto, stem cells anything but these terrible drugs.
So sad to hear.. I heard from some patients their issues got resolved when they went fully clean carnivore.. And one of such comments I read just ten minutes ago at another video...
I was wondering what about the adults. but hearing your experience I need a bucket to puke in. So rude
I'm a epileptic 57 about 172 weight and also have a enzyme deficiency disorder my ketones doesn't seem to go above 40 percent does this mean my body can't get into ketosis should I scrap the diet all together
I've had undiagnosed grand mal / clonic tonic seizure epilepsy since I was 14. Still shows up when I'm fatigued or some stress situation.
I'm 63 medication hasn't been a total help.
I'm a non red meat eater since 35. Find this interesting.
Sugar out..like all sugar ..eat meat. And Fats, this is the future of no disseases
My epilepsy is caused by my exes steel toe boot kicking me over and over again in my head. Yeah I don’t think so. That’s something people don’t know, like with the photosensitive epilepsy, some of it is caused by injury
Why are there cases of heart problems etc? Is this because of lack of protein or is that another issue?
Sometimes electrolyte imbalances happen when transitioning to keto that can cause some heart palpitations. A bit of salt or a sugar free electrolyte supplement solves this. It's not a big deal.
What is JME epilepsy? Do I need Keto diet to reduce my seizure
Juvenile myoclonic epilepsy (JME) is the most common generalized epilepsy syndrome. If you are having seizures, please work with your doctor for appropriate diagnosis and treatment.
where are the adult epilepsy ketogenic experts? Why just children... I know it started there, but children become adults. We stop caring once people get public hair?
I would love to know why it generally works better in children than adults. Have a relative that does keto but it does nothing for the betterment of his temporal lobe epilepsy, unfortunately.
It doesn't. It's just that children have been better studied, more data available. It works great for adults too.
Keto diet helped me with seizures. I found I did better with more protein & low carb vegetables. Keep diet simple.
@@sandrasaddleman581 Yes, I like the simplicity too. For me I found that, while keto helped a lot, going fully carnivore has stopped my seizures entirely. I like being able to just eat without all the weighing and measuring and calculating ratios that goes into keto.
I have seen Ketogenic diets that focus on polyunsaturated fat instead of saturated fat.
Setting up time bomb in the body.... one small inflammation explodes like 10 times?
Some of the "classic" keto diets did use a bunch of seed oil mayonnaise and such to get the fat content up. This was a mistake.
Why the past tense? All the products that sponsor conferences and the AES itself are made with seed oils and other toxic additives.
@@dunuth Well, most doctors have figured it out but people trying to sell you "keto chocolates" don't care.
Most doctors are so uneducated, my brother has had severe grand mall seizures for 40 years.not one doctor has recommended this.