LCHF for Seizures
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swezeytba
Posts: 624 Member
Wondering if any of you out there are following a low carb high fat diet to help with epilepsy or seizure reduction? I have tried low carb before for dieting, but contemplating following a more strict modified ketogenic diet to help with my seizure reduction as my luck with medicines thus far hasn't been too great....
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Today's podcast of Livin La Vida Low Carb has a dr talking about keto for epilepsy today - 1190: Dr. Susan Masino – 2016 Metabolic Therapeutics Conference. I haven't listened to it yet, as I am a few behind. If you go through the past episodes, I know there was at least one other speaker recently on this topic.
http://www.thelivinlowcarbshow.com/shownotes/
I believe I have seen at least one post on here regarding this topic. It has been a while and I don't remember who it was. If you look through the previous discussions, you may be able to find if from the title. I would say it was at least a month ago or more. If you find that, you would be able to see who it was and tag them.1 -
I eat very low LC/HF for a neurological movement disorder, Spasmodic Torticollis aka Cervical Dystonia. I noted some improvement (less involuntary movement) initially but not additional improvement over 8 months. I was not on a daily medication for my disorder.
Without question if you are contemplating keto related to seizures you should definitely consult with your neurologist who will most likely work with you regarding your dosage of CURRENT medication and will most likely refer you to a Registered Dietitian regarding a 4:1, 3:1, MCT Oil Diet or other ketogenic type diet.
I am guessing you have read (and it is fact) a ketogenic diet was used to decrease/eliminate epileptic seizures prior to the creation of anti-seizure meds. I am guessing you have also read the diet is currently used for those who are non-responders. This is not interwebz woo. It is fact.
If your medications are not effective, contact your neurologist and explore your options prior to starting a full-fledged ketogenic diet. Good luck.2 -
I am not, but I have a friend who has her daughter on a modified version of keto to help with pre-diabetes and epilepsy. She's working with her pediatrician and is an early teen, so it might be different for adults. There's no calorie counting or limitations on how much she can eat, but she is only to have starchy items (like bread/corn/potato/sweets) a max of twice a week (two servings a week, not two days a week) but she can pretty much have all the salad and greens she wants in addition to the normal meat/eggs/dairy which makes up the bulk of her meals. She packs her lunches with almond milk and salads with tons of meat or meat/cheese roll-ups plus nuts, etc. Once a week she gets Sweet Frog as a treat, and one other day during the week she can have cookies or biscuits (the child loves sweets and bread) with dinner, but the rest of the time she's pretty good about sticking to what she's supposed to have. I think they started this August or September and her number have been good so far, they aren't putting her on any medications since the dietary changes are working.0
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My niece was on the ketogenic diet from a very young age up until about 18 or so for seizures. It actually worked for her. She was very low carb, ate lots of heavy whipping cream, meat and maybe some low carb vegetables (I can't quite remember). Sugar free jello was her only treat. Today she is grown up, can eat anything she wants, doesn't have seizures anymore and off all medications. Please work with your neurologist, that's what her family did and went in for constant testing.1
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My daughter was put on the keotgenic diet as we waited for epilepsy surgery (her seizures were bad enough that we were worried about the damage that was happening as we waited for the surgery). For us we were followed by a nuerologist and a nutritionist and she had to remain on meds. The diet did reduce the number of seizures, we followed it for about 6 months before her surgery and reduced seizures from about 12 or more a day to 6 or so a day (the surgery has dropped that to 2 a month). The biggest challenge for us was that she was a toddler so if another child gave her a cheese it at preschool, she ate it and no matter how much caregivers watched her she would still occasionally get something not on her diet (it was a developmental preschool and being there was part of trying to help her learn to talk and walk because her seizures affected that). That would kick her out of ketosis and seizures came back a lot worse when that happened. We had lots of blood draws to watch electrolyte levels (most anti-seizure meds actually reduce potassium levels on their own).
In a kid her age it was really hard but we saw pretty decent results (not as good as the surgery though which is why I am so thankful we did it). I will say though that doing this kind of diet in a toddler combined with the sensory issues her epilepsy and the surgery has created has led to some significant sensory issues around food that we still struggle with at age 9 (she basically is a vegetarian and refuses to eat meat now). I don't feel like our story is a great representation of using ketosis to reduce seizures because everything for her was out of the norm (she was 3 when we did epilepsy surgery, the type of epilepsy she has is usually only found in adults, her epilepsy was intractable and not responding to most meds and so on).2 -
Www.charliefoundation.org might have some resources but as far as I know you just want to achieve therapeutic levels of ketones.
Look up the glucose ketone index. I used to have a link, but it'll explain how to determine your index. It's a good idea for those using keto diet for therapeutic reasons like seizures, demntia or cancer for example.
I use keto for ADHD and overall health. I actually started just for weight loss then realized the pot of gold I had discovered! Lol
I consume about 10g carbs most days and am able to attain therapeutic ketone levels with no problems. Even though some days I'll go around 20g and I have wine on the weekends. I've been doing it for long enough now that it's easier to maintain ketosis.0 -
cstehansen wrote: »Today's podcast of Livin La Vida Low Carb has a dr talking about keto for epilepsy today - 1190: Dr. Susan Masino – 2016 Metabolic Therapeutics Conference. I haven't listened to it yet, as I am a few behind. If you go through the past episodes, I know there was at least one other speaker recently on this topic.
http://www.thelivinlowcarbshow.com/shownotes/
Thanks for the link. I have listed to a couple of podcasts from this site. I'm listening now....It is interesting but lots of highly technical terms so a little hard to follow while I'm multitasking!
Might have to listen again later.0 -
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If your medications are not effective, contact your neurologist and explore your options prior to starting a full-fledged ketogenic diet. Good luck.
I was actually recommended the diet from my nuerologist, but I think because I'm currently on anti-seizure medicine he is looking at is more as an adjunct therapy and hasn't really given me a lot of direction on exact ratios, etc. I am attending a class on the ketogenic diet being given by one of our clinics here in town today and I have an appt. with my neuro next Monday so will probably try to explore it further with him then.
My main reason for asking about others here that might be using this therapy was to see if any adults have had any luck reducing their seizures. It seems it has worked well with children and I'm seeing lots of success stories on line but not so much in regards to adults.2 -
In a kid her age it was really hard but we saw pretty decent results (not as good as the surgery though which is why I am so thankful we did it). I will say though that doing this kind of diet in a toddler combined with the sensory issues her epilepsy and the surgery has created has led to some significant sensory issues around food that we still struggle with at age 9 (she basically is a vegetarian and refuses to eat meat now). I don't feel like our story is a great representation of using ketosis to reduce seizures because everything for her was out of the norm (she was 3 when we did epilepsy surgery, the type of epilepsy she has is usually only found in adults, her epilepsy was intractable and not responding to most meds and so on).
That must have been tough seeing her go through all that. I feel that really I have been lucky overall. My seizures are a partial seizure. I know I had them as a child but wasn't diagnosed until adulthood as my seizures were very few and far between until about the time my hormones became more active. I am currently on Keppra and while it definitely as decreased my seizures it hasn't completely stopped them and I'm at the max dose. Two other medicines I've tried have had terrible side effects to the point where I just couldn't even continue taking them. I was sort of hoping that I might be able to continue taking the Keppra and adjust my diet and become seizure free. That's a big if though!0 -
Sunny_Bunny_ wrote: »I use keto for ADHD and overall health. I actually started just for weight loss then realized the pot of gold I had discovered! Lol
I consume about 10g carbs most days and am able to attain therapeutic ketone levels with no problems. Even though some days I'll go around 20g and I have wine on the weekends. I've been doing it for long enough now that it's easier to maintain ketosis.
I have been on the Charlie Foundation website quite a bit.....I'm impressed by your ability to keep to a 10g carb level. I have done a low carb diet previously and was able to keep around 20 fairly well.
Part of my difficulty will be with any recipes requiring sweeteners other than sugar. I have a definite sensitivity to aspartame and so I have pretty much kept away from all other sweeteners just to be safe. Even Stevia. I don't necessarily have a big sweet tooth, but may get the whole family in on eating lower carbs for all of our health and I know they would enjoy being able to eat some cookies/cakes, etc. now and then.0 -
Do a google search for The Epilepsy Foundation. Plenty of good information there. In part, it states that a ketogenic diet is used mostly for children but is as effective for adults. Adherence to the diet is the problem. I guess adults are better at managing their child's diet than managing their own?
Yes, do continue to explore it further to make your educated decision. Again, good luck!0 -
https://academia.edu/30288892/Exogenous_Ketone_Supplements_Reduce_Anxiety-Related_Behavior_in_Sprague-Dawley_and_Wistar_Albino_Glaxo_Rijswijk_Rats?auto=download
Not Epilepsy related directly but it is about ketosis without eating a keto WOE. While a rat study I do find Exogenous Ketones an interesting study by a guy that we read about.
loop.frontiersin.org/people/364178/overview0 -
Sunny_Bunny_ wrote: »I use keto for ADHD and overall health. I actually started just for weight loss then realized the pot of gold I had discovered! Lol
I consume about 10g carbs most days and am able to attain therapeutic ketone levels with no problems. Even though some days I'll go around 20g and I have wine on the weekends. I've been doing it for long enough now that it's easier to maintain ketosis.
I have been on the Charlie Foundation website quite a bit.....I'm impressed by your ability to keep to a 10g carb level. I have done a low carb diet previously and was able to keep around 20 fairly well.
Part of my difficulty will be with any recipes requiring sweeteners other than sugar. I have a definite sensitivity to aspartame and so I have pretty much kept away from all other sweeteners just to be safe. Even Stevia. I don't necessarily have a big sweet tooth, but may get the whole family in on eating lower carbs for all of our health and I know they would enjoy being able to eat some cookies/cakes, etc. now and then.
I got control of my sweet tooth. I avoid aspartame like the plague myself. Lol
I will have a keto dessert at holiday functions and maybe on my birthday though I just had a big steak last birthday instead. Lol
Other than that the only sweet I get is real dark chocolate, (not the artificial sweetener candy bar kind), natural peanut butter and tea with stevia/erythritol blend sometimes. All in very minimal amounts. I am satisfied with just a little as long as I don't introduce the artificial stuff. That gives me crazy cravings. The days I venture up toward 20g carbs, it's because of chocolate and peanut butter. Lol1 -
I have heard that the Stevia/erythritol blend doesn't have as much of a bitter aftertaste as the straight Stevia....Do you find that to be true?0
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Have you tried liquid Stevia? I hated the powder - so bitter - but love flavored liquid Stevia.0
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I have heard that the Stevia/erythritol blend doesn't have as much of a bitter aftertaste as the straight Stevia....Do you find that to be true?
Yes. That's why so many people use a mix. But it can also be a way to adapt to the taste of stevia alone as well. After a while you may find you don't mind the stevia flavor anymore. Also, the stevia you use makes a big difference.
I like the sweet leaf brand. The aftertaste isn't as strong as others I've tried.2 -
I do not suffer from seizures but migraines. As no migraine meds or pain meds seem to help my and I get 2-3 migraines weekly my next option was topamax. A seizure med. looking at the list of side effects I gave it a pass(even thought the potential for weight loss was tempting) and that is one of the reasons I try to eat keto. A bit of research told me that migraines and seizures can be related so that is what led me here. My migraines reduce greatly, and my energy levels are so high!
I find it so hard to stick to though! I am getting better but when life gets too busy then I make poor choices. I would love those poor choices to be fruit or high carb veg but it is usually grains and sugar. I am getting better at maintaining stress with exersise though.3 -
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I do! I also use pure therapeutic ketones (a supplement) daily. I have seen a huge improvement thus far.2
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Went shopping on Saturday and got all of the necessities to get me off to a good start. Did get some of the liquid Stevia and seem to be able to tolerate the taste pretty well. Also got some powdered Erythritol to use in recipes but that will probably come later once the whole family starts this WOE too. I don't have all that much of a sweet tooth but do like some sweetener in my coffee so that's what I'll be using the liquid Stevia for right now. Started full force yesterday with keto.3
