Complex Partial Seizures and Protein shake

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Hopper

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So, first of all, hello everyone! I'm new here. I'm 22 years old. I've first noticed my CPS when I was 8 and they've continued to be part of my life until I was 16. That's when I've had last seizure. I also had tics, which were presented both with and without CPS. They were happening randomly.

So, fast forward to year 21. I was taking 1000mg Depacote and 200mg Lamictal. My doctor decided I should stop taking meds. I got off Lamictal and most Depacote.

So, we're in present, year 22. I am currently taking 300mg Depacote. Tics are sometimes, very rarely present, but no CPS. I started going to the gym and I would like to take protein shakes. I know there are some ingredients in protein shakes I should avoid, can you tell me which one?

Thanks in advance!
 
First off, hello and welcome to CWE!
My initial question is why do you think there is something in your protein shakes you should be avoiding? Do you have food allergies or food sensitivities? If so, then you can ask your family doctor for testing to identify any food allergies you have.
There are no specific food products or chemicals in protein drinks that "all" people with epilepsy have to avoid. Some people can have seizures triggered by too much caffeine or MSG, but I've never heard of protein shakes containing either.
If you are worried about additives in protein shakes that you buy, make your own! You can find many recipes online for high protein home made shakes that would be far better for you than most commercial protein powders and pre-mixed shakes.
 
The things I would avoid are too much sugar, fake sugars like aspartame, caffeine, MSG which often hides under sneaky labels such as "natural flavorings", plus any fake coloring. Manufacturers have also been known to add caffeine "look alikes" such as guarana or matte. Avoid anything that touts its "energy boosting" properties.

I agree with the idea of making your own shakes. I keep frozen fruit, mostly bananas from my trees, on hand. Blend frozen fruit with some coconut cream and whatever (real) flavors you like such as vanilla, cocoa powder, cinnamon, nutmegs, etc.. You can add a few ice cubes if you want too. Nut butters are also a good addition if you want a higher protein content along with eggs and whey powder.
 
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I've heard that L-Glutamine and Creatine can be harmful to people with epilepsy. L-Glutamine because a lot of anti-epileptics work by blocking glutamine receptors in brain, and extreme amounts can overpower the medicine. And creatine should be avoided because of risk of dehidratation.
 
Hopper, you might enjoy the website of one of the CWE members here. His name here is "dogtorj" and his website is Dogtorj.com. He's a veterinarian named Dr. John Symes who has had some excellent results treating feline and canine epilepsy. He focuses on eliminating the glutamate and aspartame from the modern diet.

Evidently there never was such thing as epilepsy in dogs and cats until we brilliant humans started feeding them grain based "foods". Now it is a huge problem.

The four major "food" groups that he eliminates are gluten grains, corn, soy, and cow dairy products. These things are often found in shakes in the form of corn starch thickeners, corn syrup sweeteners, soy protein, and of course milk in one form or another. Also eliminated are any fake flavorings/colorings. They often promote "weight loss" shakes that keep the calorie count down by using aspartame as a sweetener.

He advocates switching to goat milk if you really like your dairy products. I use both goat dairy and coconut milk. I find the natural sweetness of whatever fruit I'm using to be plenty in my shakes.
 
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Hi Hopper!

You're right to be cautious with supplements of any sort -- either because of what's on the label, or because of what isn't on the label.

Generally speaking, the protein in the shakes (in the form of whey or soy) shouldn't cause seizures unless you are allergic to either of those ingredients. But often the shakes contain additives that can be tricky for people with seizures disorders.

L-Glutamine can definitely be problematic for people with epilepsy. The body converts L-Glutamine to Glutamate. And Glutamate is one the neurotransmitters that EXCITES the brain. A similar thing can happen with MSG (which also converts to Glutamate), and with aspartame (which converts to aspartate, another excitatory neurotransmitter). If you have a lowered seizure threshold you should avoid the L-Glutamine supplement, or at least proceed with caution when using it.

Creatine is less directly linked to seizures, but there have been some reports of folks seizing while using it. And it can have general health consequences that may lower your seizure threshold if you are already vulnerable: Short-term side effects = nausea and diarrhea. Long-term side effects can include kidney damage, especially in those with kidney disease. Some anti-seizure meds also stress the kidneys, another reason to steer clear. Creatine has been also linked to muscle cramps, strains, stomach problems and dizziness, and it can cause dehydration by interfering with the body's ability to sweat.

Since you are still experiencing tics, you might might want up your consumption of foods that contain potassium and magnesium, since those nutrients play a role in relaxing muscles. Try blending your shake with bananas, yogurt , spinach or avocados and/or adding those foods to your diet. :)
 
The point Dr Symes is making about both soy and cow dairy proteins is that they are high in glutamate. Those excitatory neurotransmitters.

Nak makes a good point about making sure you get your electrolytes. That's another good reason to use coconut milk or water in your shake making. Cocoa powder is also a good source of magnesium.
 
I'm also new. Planned on posting a (brief as possible) background. I'll keep this reply even more brief - but there was a tidbit in my experience that relates to protein / supplement shakes.

I seem to have developed some allergies/intolerances in the last 6 months. I believe it's related to glutamate excitability as my GABA are almost certainly in a bad state (longer story).

All of this is tied up with GI issues that caused me to lose a lot of weight. There were numerous incidents in the first few months where I ate something with dinner, or had tried supplementing during the day with Ensure drinks. I would end up crashing into bed 15 minutes later, sometimes seeing stars, tinnitus, and then sleeping. Doctors never thought much of this. More recently I was having better success with Boost rather than Ensure.

Also turns out the most recent dinner experience where this happened was with food containing marked MSG.

Long story short, I think my GABA problem was kindled via propofol for a colonoscopy last week. I had two consecutive mornings after the procedure where I ate a small breakfast, a boost drink, and a VSL3 probiotic and wound up with even worse versions of what I experienced before. Felt unwell, tinnitus, the epigastric rising sensation, then went to bed. Had what appeared to be simple partial seizures where the lights were nearly out.

Yesterday I had some parmesan with dinner and woke up at 1AM with tinnitus and very on edge.

So in summary - yeah, be careful of the ingredients. In my case I think I'm having glutamate issues and last I checked were completely reproducible by ingesting a bottle of Ensure. Now they're so bad I may be having an issue with VSL3 (strong probiotic).
 
Thanks everyone for responses. I think I'll buy some blender like NutriBullet and make my own natural protein shakes. My health is far more important than being muscular.

I drink big amounts of milk and eat dairy products, so I don't think I have issues with glutamate (in moderate quantities). Idk what would happen if I would take protein shakes, I won't risk it.

By the way, I am really happy I've found this forum, because I don't have any people in my life who understand me, so big THANK YOU from me :)
 
There are a few members here who do a lot of working out in a gym. The wording of your post suggests you are relatively new to working out. One thing I've learned is that for me overdoing a workout can bring on seizures as much as 12 hours later (weird, I know, but has proven to be the case at least 90% of the time). You may benefit from increasing the amount of time you sleep the night before a workout day, to make sure your body doesn't get too worn down. Avoid your other potential seizure triggers, like alcohol, caffeine, excessive gaming, etc. as a workout can be regarded as a stress by the body and lower your seizure threshold. Be sure to keep yourself well hydrated through the workout, make sure to have some carbs in your pre-workout shake (protein prior to a workout is not going to give you energy for the workout unless you will be training that day for a very long period of time). Post-work out is where you want to add in the protein, for healing and repair.
Enjoy getting fit and healthy; I sure do!
 
High Hopper,

I work out and drink casein and whey protein shakes + added L-Glutamine with no negative effects on my seizures. I consume between 100 and 130 grams of protein in drink form per day depending on how much protein I have eaten.

Most protein mixes are now sweetened with sucralose and or acesulfame-K. No artificial sweeteners make my seizures worse so these do not bother me.

High protein diets do require generous amounts of water so drink plenty.

Exercise also does not cause my seizures to get worse, but caution should be taken, since a seizure could happen any time and passing out under a heavy bench press would not be fun.

The only thing I have noticed protein wise that makes my seizures worse is soy protein. I guess the isoflavones mimic estrogen and make my seizures worse since my seizure are controlled hormonally making elevated estrogen's dangerous for me.

What has no effect or a bad effect on my seizures could be a very different story for you.

If you are going to build muscle remember you build muscle when you rest, not while in the gym, allow adequate recovery time after workouts and ride the wave of continual natural growth, oh and a six pack is made in the kitchen, it's all about the nutrition, you cannot out exercise a bad diet.

Good luck to you.
Peace,
Frink.
 
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@masterjen My doctor said the same thing, that overworking can induce seizures. I work with very low weights, and I try to listen to my body, whenever something feels like too much for me, I either stop, or reduce weights. I drink a lot of water during the workout, and afterwards.

@Frink I'm really happy that I hear that, since I've heard a lot of bad experiences with L-Glutamine.
 
I used to work in a vitamin/ health food shop and I know of the protein powders that contain many ingredients and different amino acids. You can buy more natural ones especially if your goal is not to build muscle. I use a pea protein powder most days that is also alkalising so good for digestion with very few ingredients.
 
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