Any guidance?

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KayNowayJose
KayNowayJose Posts: 138 Member
Hello ladies and gentleman! ;-)

Okay, so I was supposed to have an appointment with a nutritionist yesterday to discuss this diet option, get my metabolism checked and get a referral for my thyroid to be checked but she cancelled on me the last 24 hours (! how unprofessional ! ) saying she didn't feel she could help me...(although we had already talked on the phone I did appreciate the honesty). Well, I have epilepsy and ended up having four absence seizures yesterday. Ironically 2 days before I celebrated it had been a whole month since I last had one :-P. I'm on 3 seizure meds, and they are not under control...I need more help. I do have more appts set up, but the thyroid test is almost a month away and then it will be hard to tell how long the dietitian/nutrition appt will be after that (that doctor is to refer me). Although some may argue it may not be safe for me to not attempt to take this into my own control until then...I honestly think when doctors have 1-4 month waiting periods, and my seizures are THIS bad, I can't sit here and not do anything. I need to start something/educate myself...see if SOMETHING makes a difference. So here I am.

Any tips, guidance, books, tools, advice that would be beneficial would be so very much appreciated.

Replies

  • Avansilee
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    I've heard of keto for epilepsy - I do it for weight loss and migraines myself, but I got started by browsing the keto forum on reddit! Reddit is a grab bag of strange in and of itself - but on the right hand side of the page linked you can find lots of great resources under the 'Useful Links' section!

    http://www.reddit.com/r/keto

    There's lots of information on the health benefits of keto, as well as resources on where to get started and example meal plans and shopping lists!

    Also check out the different 'subreddits' like /r/xxketo (female keto'ers!) and /r/ketorecipes (self-explanatory!).

    I dunno where you are in your research, but a good place to start is the keto calculator to find appropriate macros (http://keto-calculator.ankerl.com/). I think the high fat part of keto is what helps with brain-related health concerns like migraines and epilepsy, so you'll wanna pay attention to those!

    Also, I've found pinterest to be another amazing resource, especially for recipes and inspiration! Just put in the search term 'keto' and you'll find hundreds of dessert and dinner ideas!

    ..sorry if this is all stuff you already know! I'm relatively new to keto myself, but I've been migraine free for over a month and lost 20lbs. That's good enough for me! Good luck! Feel free to add me!
  • KayNowayJose
    KayNowayJose Posts: 138 Member
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    No, oh my goodness, thank you sooo much! I truly do appreciate it :-)

    Yeah, last night I went to cavemanketo? I think it was? And that gentleman had made a reference of doing 5% carbs, 35% protein and 65% fat so I figured I would try that my first day or so until i could research more. Really, I went over my carbs like crazy, and I still have extra protein and fat although I feel like I ate way more than I usually do (...I had increased my calorie intake assuming I would need to with the extra protein and fat?...) but I'm still not at 1,100 calories, in starvation mode! So, I still need to eat.

    But seriously, thanks for the resources, I want to make sure I am doing this RIGHT. Especially with how things have been recently.
  • Rei1988
    Rei1988 Posts: 412 Member
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    Maybe this person could help? http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/
    or this? http://ketocuisine.com/

    I'm keto for weight loss & other health benefits so i have no experience with keto for epilepsy. Do a lot of online research & always get a second medical opinion. Hope you get the help you need.
  • kiramaniac
    kiramaniac Posts: 800 Member
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    If you search over on reddit for keto and epilepsy, there are quite a few threads on this, and a fair number of people following the diet for their epilepsy. Maybe make a post over there, or even private message a few individuals.

    The reading I've done suggests that keto for epilepsy may not be the same as what we do for weight loss. Something like, 3-4 g fat for every G protein and carbs. But, most of the info is on keto for kids, not adults.

    Good luck!
  • KayNowayJose
    KayNowayJose Posts: 138 Member
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    Thank you guys so much, I spent well into bed last night reading all of that. Practically fell asleep on the couch :-P

    I have an odd question, maybe something I'm doing wrong, maybe something normal...?

    Well, I've found that with epilepsy the fat ratio is supposed to be the highest...so that is what I am aiming for, but i don't have this perfect yet.

    BUT, I have noticed that I have been under 1200 calories by a major amount for the idea 400-700, and felt satisfied all day long, so just looking for stuff to eat within the meal plan and eating to not be put into starvation mode.

    I was considering maybe some sorta protein bar, or something. Because honestly feel FULL.

    Any tips? Or food changes? I believe my diary is open.
  • MechanicalCritter
    MechanicalCritter Posts: 44 Member
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    Some people do tablespoons of olive oil to up their calories. I think it sounds nasty. I do olives and cheese with almonds and pepperoni's. I don't worry about calories so much anymore, I just try and make sure my carb intake is under 20g a day. The rest will fall into place. I hope keto can help you. Seizures are scary.
  • KayNowayJose
    KayNowayJose Posts: 138 Member
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    Thanks for your response dear, I appreciate it. :-)

    And yeah, that tablespoons of olive oil thing sounds horrible.

    I did go to the grocery store and bought some of the very things you were talking about, nuts, cheese, and pepperoni. AND Greek yogurt :-)

    And I think I am going to take your advice on that, because really, I find myself just eating to hit a 'magic safe number' and increasing my carb intake as I get closer.

    And fyi, you strikingly look like Kate Winslet in your picture :-P
  • MermaidTX
    MermaidTX Posts: 352 Member
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    Thank you guys so much, I spent well into bed last night reading all of that. Practically fell asleep on the couch :-P

    I have an odd question, maybe something I'm doing wrong, maybe something normal...?

    Well, I've found that with epilepsy the fat ratio is supposed to be the highest...so that is what I am aiming for, but i don't have this perfect yet.

    BUT, I have noticed that I have been under 1200 calories by a major amount for the idea 400-700, and felt satisfied all day long, so just looking for stuff to eat within the meal plan and eating to not be put into starvation mode.

    I was considering maybe some sorta protein bar, or something. Because honestly feel FULL.

    Any tips? Or food changes? I believe my diary is open.

    Your diary isn't open ATM but if you're keeping your carbs really low, your appetite will become naturally suppressed. It took me a while to get used to seeing really low calorie days but I finally just accepted that it's OK to not eat if I'm not hungry.

    Sometimes I have a protein drink made with almond milk & heavy whipping cream to keep my protein & fat up if I'm hungry enough for that.

    Getting more fat is fairly easy. Cook with coconut oil, olive oil, or butter. I use coconut oil in my coffee (other folks like "bulletproof coffee" with coconut oil & butter all whipped up). I put butter on my steamed veggies. Sour cream on omelettes that were cooked with a little butter. Creamed spinach instead of plain steamed spinach is good!

    Oh and there's fat bombs! Those are awesome for getting more fat!

    The initial hurdle for me to eating more fat was getting over all the years of "fat is bad for you" & "fat will make you fat". I'm way past that mental block now & really enjoying how delicious food is on a keto diet.

    Also, back when it was all I could do to eat 1000 calories a day, I made sure to keep up my electrolytes (salt, potassium,magnesium) because I couldn't eat enough to get them from food. This really helped prevent headaches & leg cramps. I'm usually eating more than that now, but I still take potassium or the leg cramps come back.

    Lots of people don't count calories because their appetite drastically changes. I track on MFP because I want to keep an eye on my calories & my macros. I'm just one of those that needs to "see" what my day is like & watch my carbs really closely.

    I wish you all the best in getting control over the seizures!
  • KayNowayJose
    KayNowayJose Posts: 138 Member
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    You're right, it wasn't open, woops!

    Thanks for the idea of using nuts in shakes as well, I oddly didn't think of that. My fiance and I pulled out the blender earlier and cleaned it so I can use it...this cutting out fruit thing has honestly been one of the hardest parts and I think a shake with just a few berries will help any sweet tooth and my fruit fix.

    And that mental block you're talking about is what I'm going through now, we bought butter today, like legit butter...when I never use any. I really honestly never eat any of the stuff I've eaten the past few days. SO its been an adjustment. I'm glad to know that somebody else went through it in a non celebratory fashion and is now eating proper keto meals.

    I'm sorry, I have no idea what you mean by fat bomb?...hahah.

    I too think I'll continue to track to make sure I'm doing things right. Especially since I'm just starting out.

    And thanks for your response, and thank you for best wishes, I value the support.

    I feel reassured about the calorie thing it coming from the two of you.
  • kiramaniac
    kiramaniac Posts: 800 Member
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    The Ketogenic diet for epilipsy is discussed in "The Art and Science of Low Carbohydrate Living" by Phinney and Volek in Chapter 19.

    I strongly recommend reviewing this chapter (really, the whole book is awesome - but for you, this chapter is especially important). There's some info on the standard Ketogenic Diet for epilipsy and how that is conducted (90% fat, 8% protein), and even supplements that are recommended. They also discuss recent use of "Modified Atkins Diet" (MAD) which is much simpler and is having similar successful results. MAD is what is now being recommended for teenagers and adults.

    You also may want to check out "The Fat Fast Cookbook". There are a ton of great recipes that are all 80% fat. I've made more recipes from this cookbook than any other that I've purchased - and I've never actually done a fat fast!
  • KayNowayJose
    KayNowayJose Posts: 138 Member
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    Aw, thanks so much, you just made my night :-)