Epilepsy Talk
What part of your epilepsy do you hate most? | November 2, 2024
You might find my answer trite: But I HATE falling down and walking into glass doors, walls, anything you can think of.
And my special talent is falling UP stairs.
My legs are a mess, I’m limping along, but refuse to give up.
Compared to others, I know I’m very lucky, but the concussions really stink.
And the anxiety never goes away.
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12 Comments »
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About the author
Epilepsy Talk 
Hello 👋.
hmmm?
what socks 👀 🤔 about Epilepsy?
a) it ain’t going away…
b) going to sleep 😴 💤 knowing that this could be the last night 🌙 on earth.
c) joints out of place, blood, etc.
d) *** Advise (impractical and totally useless)…from people who Never had a Seizure..!!
I often ask 👋🤔; is this what you do…for your Seizures?
***99% response***:
They don’t have epilepsy….many have *never even seen* a seizure….or could tell i had a seizure right before their faces….Fascinating??!
But, they have knowledge ✅️
Wishing all Peace and Real Prosperity 🙏 ✨️ ❤️
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Comment by R Stroud — November 2, 2024 @ 11:05 AM
You know R, I do agree with you. Ignorance is dangerous.
On the other hand, I believe in their heart of hearts, people would like to help, if they only knew how.
Instead of a seizure being a freak show, it should be an opportunity to go out of ourselves to help one another.
It’s not brain surgery. (Pardon the pun.)
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Comment by Phylis Feiner Johnson — November 2, 2024 @ 12:01 PM
I dislike the need to be placed on a restricted diet to avoid triggers, concussions and memory loss. There are many things I dislike but these are the top three.
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Comment by debharley55 — November 2, 2024 @ 11:14 AM
Deb have you considered the Modified Atkins Diet?
I find it the most user friendly.
Although it’s referred to as “MAD”, the Modified Atkins Diet is really the best of both possible worlds.
This modified version of the popular high-protein, low-carbohydrate Atkins Diet can significantly cut the number of seizures in adults and children too.
Offering a new lifeline for patients when drugs and other treatments fail or cause complications.
It’s a less restrictive, higher in protein and carbohydrates, a dietary therapy for epilepsy for those who would otherwise use the Ketogenic Diet.
So far, it’s been used and researched for the past five years with outcomes similar to the Ketogenic Diet.
Recent data has also suggested this valuable new therapy leads to a rapid seizure improvement when effective.
It’s not exactly know, how ketones reduce and eliminate seizures, or why the diet works for some and not others.
Researchers are especially interested in why some remain seizure-free after discontinuing the diet.
Further research is needed, since the Modified Atkins Diet has only been used since 2004.
But it’s promising to note that clinical research did show that about half the patients experienced a 50 percent reduction in the frequency of their seizures by the first clinic visit.
About a third of the patients halved the frequency of seizures by three months.
Side effects linked with the diet, such as a rise in cholesterol or triglycerides, were mild.
In general, the Modified Atkins Diet is recommended for: adolescents, adults, and younger children with difficulty staying on or starting the Ketogenic Diet…families with limited time…those lacking financial resources to cover the costs involved with the Ketogenic Diet…and patients at centers with limited dietitian support.
Good news: The Modified Atkins Diet doesn’t deprive you of rich foods like butter, peanut butter, mayonnaise, oils, cheese, bacon, eggs, hamburger, and whipped cream.
The diet doesn’t cause people to become overweight, and overweight people often lose weight.
But daily supplements are necessary to replace vitamins that are missing in the diet.
Suggested vitamins include: Vitamin B-1…Vitamin B-2…Vitamin B-3…Vitamin C…Folate…Vitamins D…and Vitamin E.
Check your multi-vitamin to see if ALL of these are included..
Although there are considerably fewer side effects than with drugs, the Modified Atkins Diet for seizures can cause dehydration, constipation and, occasionally, kidney and gall stone complications.
Side effects can also develop in those who are unable to digest large amounts of fat.
As with all treatments, initial evaluation and careful monitoring by a neurologist, and a nutritionist are all mandatory.
We do know that the Modified Atkins Diet for seizures is as effective, less restrictive, and far easier than the Ketogenic Diet.
It’s an inexpensive alternative treatment option with few side effects that often works when all else has failed.
And that is good news for all of us who have tried previous diets and given up hope or even the strict discipline.
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Comment by Phylis Feiner Johnson — November 2, 2024 @ 11:46 AM
I agree with Atkins diet but I also must avoid process food, MSG, Dairy and gluten. It’s complicated with dairy allergy and gluten intolerance .☹️
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Comment by debharley55 — November 2, 2024 @ 11:53 AM
I agree about Modified Atkins Diet but mine have to be dairy-gluten free. Also no process food or MSG. I am allergic to dairy and gluten intolerance due to IBS. Gets crazy
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Comment by debharley55 — November 2, 2024 @ 11:59 AM
Concealed stigmatization by (former) friends and potential employers.
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Comment by Jeffrey Lee Hatcher — November 2, 2024 @ 11:30 AM
That hurts the most.
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Comment by Phylis Feiner Johnson — November 2, 2024 @ 11:37 AM
The side effects to the medication – any med I’ve taken since starting off with 100mg of Tegretol over 30 years ago. Since then, the very best I’ve felt was 2 weeks after brain surgery. Which was a total of 4 straight weeks without taking medication for my epilepsy.
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Comment by Stephan Escabar — November 4, 2024 @ 3:45 AM
So you’re between the devil and the deep blue sea. Which is better/worse?
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Comment by Phylis Feiner Johnson — November 4, 2024 @ 8:14 AM
The headaches and the damage I do when I bite my tongue , lips and cheeks
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Comment by Royvickie — November 4, 2024 @ 5:24 PM
Sometimes I feel like Swiss Cheese!
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Comment by Phylis Feiner Johnson — November 4, 2024 @ 6:56 PM