Diet Drama

[edepew151]

Okay, so when I moved 3 years ago, I went into a serious depression because I hated the new place. I gained about 50 pounds and my seizures started going nuts. My doctor told me losing the weight might help with the seizures, so I started trying all these diets. A year went by and I found the Atkins diet, which helped me lose 30 pounds :woot: but then I couldn't lose any more. So, I started trying more rigorous diets, but every single one of them really messed wih my epilepsy. My last diet was a juice diet this past week, and I literally was walking around by holding myself up on furniture because my legs kept twitching. My head throbbed all the time, and I was having petite mals all day. I finally caved and quit the diet on Friday, but I am still feeling the effects of it, having to take naps often and such. I had a serious meltdown when I quit, because I'm just so tired of feeling like a failure whenever I try to do this. BESIDES the Ketogenic diet, does anybody have any suggestions?

 

[qtowngirl]

well, depends if you are looking for the diet to help seizures, or to help weight loss.
i def don't recommend the 'juice'... for either reason. taking the meds we do we need more nourishment than that, i can totally see why you became weak and shaky.
as for weight loss i can only recommend what i know myself works... i lost 120 pounds this way.
-drop all refined carbs. ALL. no white anything (pasta, rice, bread).
-no baked goods as they are full of refined carbs and fats.
-nothing with sugar, if you need stuff sweetened, such as tea, use honey.
-no juices, eat your fruit whole. lowest on the glycemic index is apples, also try berries as they contain a ton of nutrients and fibre. apples are great in a blender with plain yogurt, honey, and pure oatmeal.
-no chips or crackers (pure flax/whole wheat crackers are ok in small quantities).
-no nuts (they're great for you but are SO high in fat).
-have most meals a simple chicken or fish (not cooked in oil) with steamed veggies and lots of salads.
-boiled eggs are a great snack - lots of protein, miniscule fat, and no carbs.
-as many raw veggies as you can handle - the only one to keep to a minimum is potatoes. and NO dip!
-no junk such as pop or candy - pure sugar that may as well be a pound a piece.

...now, don't freak out i know it sounds like alot, but if i can lose that much weight in 11 months time (1/2 hr walk daily as well)... it's worth it. if you only want to lose another 20 or 30 pounds it will be a piece of cake (pardon the pun). after doing it long enough it becomes a lifestyle, and a very smart choice in that. i haven't gained any of the weight back and that was 10 years ago
mind you, i do like my chips, and the odd piece of chocolate, but those are now a 'treat' to enjoy once a week or so.

 

[Nakamova]

Special diets can potentially help reduce seizures, but they don't work for everyone. It depends a bit on what your triggers are. The diets that help with epilepsy do so NOT because they help you lose weight, but because they remove particular foods that are problematic or triggering for you (like gluten, additives dairy, etc.), or they cut down on carbs (like the ketogenic or the Modified Atkins).

You want to avoid anything extreme and anything that will expose you to your particular triggers. Some diets can set you up for sugar crashes, low blood sugar, dehydration, electrolyte imbalances, or nutritional deficiencies -- all of which can potentially be triggering. The right diet for you is one that is balanced, and doesn't make your seizures worse.

When you were on the Atkins diet, did it help with seizure control? If you were successful on it before, you might want to give it another shot. But it may be worth doing so with a registered dietitian to help. More info here: http://www.atkinsforseizures.com/

 

[qtowngirl]

yes avoid sugar crashes by eating whole fruit daily and not things that say 'contain fruit.' that's aka as 'contains sugar and some fruit.'

 

[edepew151]

I did the Atkin's Diet for about a month, and then I suddenly was having grand mal seizures every 2 days (I usually have them once a month). When I made an emergency appointment with my neurologist, he said it was most likely the diet and told me to stop. I thought it was odd that it took a whole month for the diet to affect me, but I just did as he said and never thought about trying again. I actually really like the sound of your diet, gtowngirl, and I think I'll give it a try. I have TONS of produce in my fridge left from the juice diet, so I'm going to start right away. Thank you SOOOO much guys!!!

 

[qtowngirl]

yeah, not a great idea to cut carbs and ADD fat. it's a balance of whole foods, without refined foods and very little saturated fat. it's actually not as hard as you'd think.
sorry to hear edepew, i've heard both good and bad about the atkins, but not good coming from those with E.

 

[Nakamova]

The Atkins Diet can help folks with epilepsy, particularly absence seizures, but it's a modified version of the diet. It helps to have someone supervise your transition on to it. http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults

 

[valeriedl]

To loose weight one time I became a vegitarian. I still ate dairy products and ate eggs. This was before I had epilepsy. I did a good bit of exercise too which probably helped a good bit.

After I had epliepsy I still didn't eat meat for about 6 years and it didn't effect having seizures at all. One day I just got really hungry for chicken and started eating meat again.

Alot of different meds can cause weight gain and loss too. There was one med I was on that I pretty much had to force myself to eat because I was never hungry. Another one I was on I ate almost everything in sight, even waking up in the middle of the night and eating half a gallon of ice cream (no lie). My neuro took me off both of those meds and changed them to other ones, I'm sorry but I don't know what they were.

One main thing that really helps loose weight is exercise. I was walking a mile a day 4 or 5 times a week and I lost a ton of weight. I started having really bad back problems and I had to stop doing it about a year and a half ago and now I've put on a ton of weight. I had back surgery last month and haven't had any problems since so I've started walking again. Hopefully by summer I'll beable to fit back into my skinny clothes again.

 

[KarenB]

edepew, it sounds like your recent seizures may have been from your blood sugar spiking from juicing the fruits and veggies, as you've probably already guessed.

Fruit is ok in moderation, but, as gtown mentioned -- whole fruit. I avoid fruit juices and dried fruit, because even if sugar isn't added, it's a lot of fruit sugar in one serving.

I wonder, when you see your neurologist, does he/she generally do blood work, and does that include a fasting blood sugar? And if so, was your blood glucose at normal levels?

High blood sugar levels are associated with seizures, especially sudden spikes.

Carrying extra pounds can also cause blood sugar levels to creep up. I gained an unwanted 30 pounds in 2010-2012 when taking care of both my dying Mom and my disabled son who was having a lot of seizures at the time. I didn't have time to exercise much, and wasn't eating right. As a result of the extra weight, my blood sugar went up into pre-diabetic levels. I've lost 2/3 of the weight and brought blood sugar down by 17 points in the past few months by eating pretty much as much as I want, but eliminating sugar, making sure about 90% of the carbs I eat are either in the form of veggies & fruit, or beans or whole grains (so I get a lot of fiber). I also reduced grain consumption (for instance, instead of having 1 cup of white rice with a meal, I now have 1/2 cup of brown rice).

LOW blood sugar can also induce seizures. This may be why you may have experienced seizures after one month on the Atkins Diet, because the diet would have been gradually lowering your blood sugar, and you may have gotten too low.

It sounds like you may possibly be having a lot of fluctuations in blood sugar levels, and this may be triggering seizures. You might find it helpful to track your own blood sugar levels at home to see if this is what is happening. You can buy a blood glucose meter at your drugstore or Walmart. I would suggest starting out by checking your blood sugar every morning when you first wake up, before eating or drinking anything. Optimal blood sugar levels are between 70 to 90. Over 100 is pre-diabetic. If you start getting into upper 120's with fasting blood sugar, that's diabetes.

You could also try checking your blood sugar 1 hour after meals and 2 hours after meals. I can't remember what the levels are supposed to be then, but you can probably find that somewhere online.

And yes, the Modified Atkins Diet is indeed a successful treatment for seizures -- the Ketogenic Diet has done wonders for our son, who had intractible seizures and little response to any meds. However, it MUST be done under a doctor's care, and one of the things they have you do is check your blood sugar levels regularly at home.

 

[cazzy]

i heard bad things about atkins diet

 

[Bernard]

Have a look at the LGIT diet. My wife is using a modified version of it (not as strict on the total carbs - she mainly limits sugars and simple carbs) and it works for her.

 

[KarenB]

Bernard -- that sounds like a very sensible eating plan. It's actually pretty much what I'm doing, except that I eat more carbs -- about 150 a day (but they are all high fiber carbs) -- and I think probably less fat. What I'm doing is pretty easy to stick to (I have almost no will power at all).

I can see why the LGIT diet would be good for seizure control. It's probably not reduced enough in carbs to put someone into ketosis, but it might. However, in my opinion, there's probably a number of reasons WHY the ketogenic diet works, and some of those reasons may not mean one actually has to be in deep ketosis.

Simply taking sugar out of one's diet can eliminate seizures or significantly reduce seizures for a lot of folks. I had such a sweet tooth, I didn't think I'd be able to do that, but I gradually began reducing sugar, and now I'm almost completely sugar free. One thing I noticed is that when you eliminate sugar, it takes away a lot of the hunger cravings.

Also, removing gluten (wheat) from diet helps a lot of people with seizure control. If one just eliminated sugar and wheat, that would cut out a whole lot of calories, would reduce total carb intake, and help with weight loss or maintenance. I pretty much have taken wheat out of my own diet - - I don't think I have any problems with gluten, but my rule is that all grains have to be whole grains, and most bread that's labeled "whole wheat" is only partly whole wheat, and often has more refined flour than any other ingredient.

 

[MaeDae]

diet, by all means, I need to find a good one. I've tried them all and they worked for a short period. I was trying to donate a kidney to a friend and went on a rigid diet because they would not do the procedure until I lost at least 45 lbs. Well, I did, unfortunately, she received a cadivars kidney, they cut her liver and she died, thats another story, any hoot, about 6 months later I started having issues with my bowels and stomach, turns out I had gallstones as big as quarters, 6 to be exact. I was told by my dr, that it was due to yoyo dieting. So, all dieters be careful, talk to dr/nutritionist about diets that are best for you and watch for changes is bowels etc. I use to wake up out of my sleep to vomit and my stoole turned white. That was the first sign that something was going on with gallbladder, which is now removed.
I also need to diet, Im going to try smaller quantities, less fat and less sugar along with excersing. I'll keep you posted. To date: my bmi is 42 (obese), I weigh 274lbs, my goal is 185 because of my giant size frame (70 inches tall and very large boned) which I get from my father.

good luck to all that dieting!

 

[qtowngirl]

yeah karen about the wheat (gluten)... wondering if any of you have ever been tested for celiac disease? it's an inability of your body to properly process gluten. my doc did the simple blood test on me years ago to rule it out as it is also known to cause convulsions. it's a good test for anyone to take, whether already diagnosed with E or not - always a relief to take one possible cause off the list

 

[KarenB]

Jonathan was tested for Celiac Disease before he went on the Ketogenic Diet. The blood test came back negative. However, I've since learned that there is a somewhat high number of false negatives with that test. Jon's Epileptologist has said that if Jonathan is ever weaned off the Ketogenic diet, he should still avoid wheat products. But I think we'll be on the Keto diet for at least another 2 years (just completed 2 years). Like with seizure meds, most doctors want you to be seizure free for at least 2 years before weaning. We got one seizure free year, then relapsed, and now the clock is ticking again at 1 month seizure free.

 

[Lovetorun]

How do you deal with having multiple seizures daily? I only have them once a month and they still scare the eff out of me..

 

[Lovetorun]

This is interesting! I'm doing something very similar except I'm not supposed to be eating a ton of fruit because it makes your levels shoot up and down apparently. And I've been eating a TON of nuts haha guess that's my problem

 

[qtowngirl]

How do you deal with having multiple seizures daily? I only have them once a month and they still scare the eff out of me..

like anything, you just do. i've had fear-based partials for 19 years and it's been so long they've become a part of me, don't know who i am without them.
it's a matter of the right doc, taking your meds properly, consistent tests, and much, much perseverance. it's not like we have a choice b/c we didn't do something to bring this on.

 

[Lovetorun]

Wow... It's funny well not funny but interesting because I keep saying I don't want it to define me but it's like it comes up in conversation always when I first meet people but not meaning to. But you're right... we have to just deal and keep going because they're happening whether we like it or not. I try to stay as healthy as possible and do the right things but right now they just keep coming. Are you feeling any better?