Rally Around Me Troops - Needing Encouragement Today!
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swezeytba
Posts: 624 Member
So as some of you who are on the forum regularly may know I started keto last month in hopes that it would help with my epilepsy (seizures). I had done so much reading and research and had such great hopes that this might be the ticket that would free me from my seizures either along with my epilepsy medicine or possibly even to make it possible for me to eliminate my medicines.
I have stuck to my carb macro very diligently, never going over 20 carbs a day. I have lost weight which I just considered as an added benefit because the health benefits were my most important goal.
However, today I had my first seizure in 60 days and I am very discouraged. I know I am throwing myself a big pity party, but I feel like I am seriously trying to do everything in my power to help my body heal itself and now I feel a big let down that it's not working.
I have stuck to my carb macro very diligently, never going over 20 carbs a day. I have lost weight which I just considered as an added benefit because the health benefits were my most important goal.
However, today I had my first seizure in 60 days and I am very discouraged. I know I am throwing myself a big pity party, but I feel like I am seriously trying to do everything in my power to help my body heal itself and now I feel a big let down that it's not working.
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Awwwww. I'm sure you are very disappointed. I understand.
I recall your neurologist suggested keto as an adjunct to your current medication. Did the neuro refer you to a Registered Dietitian to prescribe a therapeutic ketogenic diet specific to you that can systematically be tweaked by you and the professional, as needed?
I really recommend you see a Dietitian. Don't give up hope. If you haven't worked with a dietitian yet, please give that a try.1 -
I am also sorry to hear that. You must be very frustrated! I must have missed your other posts about your seizures. How often do they happen, have you seen any improvement since starting a keto diet? Sometimes the body takes awhile to heal...I don't know much about seizures, so I won't give any advice since it will be uneducated. I hope you find relief from your illness, and I am offering my support! I hope you get this figured out very soon!0
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I would be discouraged too. How frequently did you have seizures prior to keto?0
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Awwwww. I'm sure you are very disappointed. I understand.
I recall your neurologist suggested keto as an adjunct to your current medication. Did the neuro refer you to a Registered Dietitian to prescribe a therapeutic ketogenic diet specific to you that can systematically be tweaked by you and the professional, as needed?
I really recommend you see a Dietitian. Don't give up hope. If you haven't worked with a dietitian yet, please give that a try.
Unfortunately my neurologist really did not help me much in that respect. He really only told me that he felt like it certainly couldn't hurt to try a ketogenic diet, but warned me that they are really hard to stick to and that most people can't keep it up. My husband laughed and said he obviously didn't know me very well.
So that may not be a bad idea to see a Dietitian. I may ask him to refer me to one at my next appointment.1 -
Honestly, the only people I know doing low carb/keto to help their seizures have had to take their carbs all the way down to 5 or 10 grams of carbs a day. Additionally, as lesions in the brain start to heal, you might have seizures intermittently until the new connections heal, too. As in your body might have managed a "bypass" past areas that were formerly seizure triggers that didn't result in seizures itself. But maybe the bypassed area is now back to functional, but has to take time to heal. The bypass is no longer needed, but there's still an adjustment period. All I can suggest is detailed tracking. Foods, macros, micros, seizures, headaches, every. Record as much data as you can so the professionals you see without outside experience can see the data impartially and maybe see something you can't see, being too close to it. Maybe a food sensitivity or random spice combo could be at play....so many factors.3
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Kirstie155 wrote: »How often do they happen, have you seen any improvement since starting a keto diet? !I would be discouraged too. How frequently did you have seizures prior to keto?
I had seizures when I was younger and then they disappeared (very strangely). In 2010 they came back while I was driving home one day. I had a very bad car accident which I fortunately survived. We did not even realize it was a seizure that caused it until later in the hospital when I had another one. Since that time I have tracked my seizures quite a bit. They are a partial seizure so not a grand mal and at their worst I was having 50-80 a year. A year and 1/2 ago on Mother's Day I had one just as we were going to sleep which must have been a grand mal as I stopped breathing and husband had to perform CPR and be hauled to the emergency room. That is when they started experimenting with different medicines which is a very frustrating process trying to find something that works that doesn't have horrible side effects. After being on medicine the frequency has reduced quite a bit to where I'm only have approximately 10-20 a year. That's why I was hoping keto would help in conjunction with a medicine that I'm currently on that has minor side effects, but just isn't quite keeping the seizures at bay.1 -
Oh how terrifying
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here is my understanding, I do not keto, but have a friend treating her daughters seizures with keto
keto for seizures it not just total carbs, it's a 3:1 or 4:1 ratio of fat:(carbs+protein)
you don't have your diary open, so I don't know what kind of a ratio you are eating, but my first suggestion would be to increase the ratio - if you are currently 2.5:1 or 3:1 go to 4:12 -
Kirstie155 wrote: »How often do they happen, have you seen any improvement since starting a keto diet? !I would be discouraged too. How frequently did you have seizures prior to keto?
I had seizures when I was younger and then they disappeared (very strangely). In 2010 they came back while I was driving home one day. I had a very bad car accident which I fortunately survived. We did not even realize it was a seizure that caused it until later in the hospital when I had another one. Since that time I have tracked my seizures quite a bit. They are a partial seizure so not a grand mal and at their worst I was having 50-80 a year. A year and 1/2 ago on Mother's Day I had one just as we were going to sleep which must have been a grand mal as I stopped breathing and husband had to perform CPR and be hauled to the emergency room. That is when they started experimenting with different medicines which is a very frustrating process trying to find something that works that doesn't have horrible side effects. After being on medicine the frequency has reduced quite a bit to where I'm only have approximately 10-20 a year. That's why I was hoping keto would help in conjunction with a medicine that I'm currently on that has minor side effects, but just isn't quite keeping the seizures at bay.
Sounds like keto may be helping in your case and only a longer period of time will tell but it seems to work for some adults.
drperlmutter.com/new-study-validates-ketogenic-diet-epilepsy-treatment-adults/2 -
@swezeytba - I can certainly understand the frustration, but first in 60 days vs 10-20 a year is still not bad.
Although not doing keto for seizures, I am a research nut who goes down rabbit holes frequently, so I have read up on this a fair amount. What has been stated above about being even lower in carbs than most need to be as well as being lower in protein than most of us need to be are things that have come up at least a few times.
Also, regarding Alzheimer's and Parkinson's - which I know is different, but are also brain related - there seems to be effectiveness for many to supplement with either MCT (C-8 in particular) and/or exogenous ketones.
According to pretty much all the experts (Phinney, Westman, etc.), the requirements for reaching optimal ketosis are very individual. Although 20g works for most, there are some who need to go much lower and some who can get away with higher. Dr Naly mentioned in a recent podcast that he had assumed he was in ketosis for years but then when he started regularly testing realized he was cycling in and out and was not able to maintain consistent ketosis without supplementation no matter how low he went with carbs. His issue has to do with extreme IR.1 -
tcunbeliever wrote: »here is my understanding, I do not keto, but have a friend treating her daughters seizures with keto
keto for seizures it not just total carbs, it's a 3:1 or 4:1 ratio of fat:(carbs+protein)
you don't have your diary open, so I don't know what kind of a ratio you are eating, but my first suggestion would be to increase the ratio - if you are currently 2.5:1 or 3:1 go to 4:1
My macros as they are now would calculate out to a 3:1 ratio.0 -
cstehansen wrote: »@swezeytba - I can certainly understand the frustration, but first in 60 days vs 10-20 a year is still not bad.
Although not doing keto for seizures, I am a research nut who goes down rabbit holes frequently, so I have read up on this a fair amount. What has been stated above about being even lower in carbs than most need to be as well as being lower in protein than most of us need to be are things that have come up at least a few times.
Also, regarding Alzheimer's and Parkinson's - which I know is different, but are also brain related - there seems to be effectiveness for many to supplement with either MCT (C-8 in particular) and/or exogenous ketones.
According to pretty much all the experts (Phinney, Westman, etc.), the requirements for reaching optimal ketosis are very individual. Although 20g works for most, there are some who need to go much lower and some who can get away with higher. Dr Naly mentioned in a recent podcast that he had assumed he was in ketosis for years but then when he started regularly testing realized he was cycling in and out and was not able to maintain consistent ketosis without supplementation no matter how low he went with carbs. His issue has to do with extreme IR.
I'm kind of with you there.....I've done a lot of online research as well. My protein is currently @ 65 grams per day. Part of the problem is not knowing if that is low enough...Not sure if a dietitian or nutritionist would have those answers for me...
My current macro for carbs is 16 grams. If I do happen to go over that it is never enough to go over 20 grams usually only 1 or 2.
Since I was going for a therapeutic (nutritional) ketosis I went ahead and purchased the Ketonix breath analyzer and have been tracking my breath acetone levels. Here again comes the problem of not knowing exactly what levels I need to be in. Per their website as long as my reading is in the yellow range I should be in nutritional ketosis and I have been there since about a week after I started testing....Was in the green range prior to that which was considered the low end of ketosis.1 -
And 243 grams of fat daily? @swezeytba0
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And 243 grams of fat daily? @swezeytba
You know that is weird.....It isn't that much...It's only 108. My thinking was that since my macro percentages are 75/20/5 that my carbs + protein = 25 and fat @ 75 would be a 3:1 ratio, but the grams don't calculate out that way at all......0 -
Check out the GKI, glucose ketone index.
This is a method of measuring a glucose to ketone ratio to determine if you're in a therapeutic range of ketosis. It is recommended for people using keto for epilepsy or cancer or other serious medical condition to aim for a GKI of 2 or less.
With me eating less than 5g carbs a day but protein averaging around 80g, my GKI the one time I checked it was around 3 I think... I actually can't remember. I just recall it being close to therapeutic but higher... I would have to lower protein or use MCT oil to raise ketones further to achieve the lower GKI.
https://optimisingnutrition.com/2015/07/20/the-glucose-ketone-relationship/
Directions in how to calculate it are in the article but you measure blood ketones and blood glucose st the same time and divide the ketones by the glucose in mmol to get the GKI.
You don't get the maximum therapeutic benefits without achieving a lower GKI.
I suspect either supplementing ketones with a high C8 MCT oil every 3 hours or so or reducing protein would be required to get there.
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Have you listened to the Ketovangalist podcasts? Brian Williamson got into keto because his son has epilepsy. I just listened to episode 86 and also see episode 66 deals with epilepsy. You might find some nugget to help you, or maybe another resource to investigate. The website is https://www.ketovangelist.com/
Best of luck to you.3 -
And 243 grams of fat daily? @swezeytba
You know that is weird.....It isn't that much...It's only 108. My thinking was that since my macro percentages are 75/20/5 that my carbs + protein = 25 and fat @ 75 would be a 3:1 ratio, but the grams don't calculate out that way at all......
I had a sneaking suspicion. You are eating sightly over 1:1. 108 grams of fat and 81 grams p/c.
3:1 is extremely high fat. For every 3 grams of fat you have you can only have 1 gram of combined p/c. That's why everything you read says these diets are so hard to stick to. My math indicated you must have about a 1300 calorie diet? You need ~123 fat grams and 41 combined protein/carbs to be close to 3:1. I could be off so someone feel free to correct. Additionally with only 41 combined protein/carbs, you can see where that will be pretty low protein and input from a Registered Dietitian is advised.
Especially since you are on medication and keto is an adjunct at this point.
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Adding: Therapeutic ketogenic diets are calculated on grams not percentages though most of which I have read indicates 3:1 generally equates to ~87% of your calories from fat.
I'm currently 2:1. _~140 fat grams, ~70 grams of combined p/c for about 1500 calories. For MFP purposes since I have the free version, I have fat set to 80%, protein to 15% and carbs to 5%. It calculates out reasonably close to a 2:1.0 -
And 243 grams of fat daily? @swezeytba
You know that is weird.....It isn't that much...It's only 108. My thinking was that since my macro percentages are 75/20/5 that my carbs + protein = 25 and fat @ 75 would be a 3:1 ratio, but the grams don't calculate out that way at all......
I had a sneaking suspicion. You are eating sightly over 1:1. 108 grams of fat and 81 grams p/c.
3:1 is extremely high fat. For every 3 grams of fat you have you can only have 1 gram of combined p/c. That's why everything you read says these diets are so hard to stick to. My math indicated you must have about a 1300 calorie diet? You need ~123 fat grams and 41 combined protein/carbs to be close to 3:1. I could be off so someone feel free to correct. Additionally with only 41 combined protein/carbs, you can see where that will be pretty low protein and input from a Registered Dietitian is advised.
Especially since you are on medication and keto is an adjunct at this point.
Yes...definitely....That low of protein would be hard to sustain. It would not be advisable to start a diet like that without some sort of medical advisement.
I guess technically I'm really more in line with the Modified Atkins Diet which is one of the three alternative diets used to treat epilepsy per the Epilepsy Foundation Website other than the fact that there is not protein restriction with that plan and I was trying to restrict my protein levels (or so I thought).
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And 243 grams of fat daily? @swezeytba
You know that is weird.....It isn't that much...It's only 108. My thinking was that since my macro percentages are 75/20/5 that my carbs + protein = 25 and fat @ 75 would be a 3:1 ratio, but the grams don't calculate out that way at all......
I had a sneaking suspicion. You are eating sightly over 1:1. 108 grams of fat and 81 grams p/c.
3:1 is extremely high fat. For every 3 grams of fat you have you can only have 1 gram of combined p/c. That's why everything you read says these diets are so hard to stick to. My math indicated you must have about a 1300 calorie diet? You need ~123 fat grams and 41 combined protein/carbs to be close to 3:1. I could be off so someone feel free to correct. Additionally with only 41 combined protein/carbs, you can see where that will be pretty low protein and input from a Registered Dietitian is advised.
Especially since you are on medication and keto is an adjunct at this point.
Yes...definitely....That low of protein would be hard to sustain. It would not be advisable to start a diet like that without some sort of medical advisement.
I guess technically I'm really more in line with the Modified Atkins Diet which is one of the three alternative diets used to treat epilepsy per the Epilepsy Foundation Website other than the fact that there is not protein restriction with that plan and I was trying to restrict my protein levels (or so I thought).
This extreme ratio is probably why the carb level for therapeutic purposes is frequently so low to the point of nearing 0 is just to allow for enough protein to maintain lean mass.2
