Nutrition for seizures

[Suman]

Folks,

Came across this link in Diets for Epilepsy. Wondered if anyone had an experience with this, do share if you have.

http://nutritionforseizures.com/research/

Thanks much,
Suman

 

[Nakamova]

Hi Suman --

I took a look at the site. I suspect that some of the information may be of interest, but I would caution that not all the advice it provides is appropriate for everyone with epilepsy. Epilepsy and epilepsy treatment are not "one-size-fits-all" propositions. What works for one person may have zero or even negative results for someone else.

Some of the posts are problematic for me. For example, http://nutritionforseizures.com/why...nd-may-even-be-damaging-for-some-individuals/ is somewhat misleading, starting with the headline and including this phrase: "Taken from these findings, I can’t help but extrapolate that the Modified Atkins Diet would create similar levels of risk." No scientist would make such a vague and unsupported claim.

I have no quarrel with people discussing what has worked for them or their loved ones, (after all, that's one aspect of CWE). But the nutritionforseizures website needs to make clear the context and the limitations of the speculative information it offers, especially because it is a for-profit site pushing lab tests, supplements, and "nutritional coaching."

 

[masterjen]

When dealing with problematic seizures it is very easy to fall into the "if ABC worked for that person, maybe it will work for me/my child/spouse" trap. It is SO important to try to be as objective as possible, and carefully scrutinize the presented treatment in terms of the basis for making claims. Always ask yourself if the treatment has sound medical research (and not just testimonials) to support the claims of successful treatment, and is it safe for you/your loved one. And of course, as in the case of your mentioned website, be very wary of any website that stands to benefit financially from proposed treatments (as Nakamova points out).

 

[Suman]

Thanks Nakamova and Masterjen! Your inputs and thoughts are valid!

 

[Topcat]

I take a multivitamin and D. Apparently many people with epilepsy are deficient in that.
plus I take a vitamin B complex since I have always heard that is good for people who have seizures. Plus I take more salt.
Once a moron nurse practitioner told me that I drank TOO much water. I live in Phoenix AZ. it hits 115 (and higher) here regularly.
I didn't argue with her that the Trileptal was causing low sodium levels not the water.
People used to (maybe they still do) take salt pills when they are working out in the heat. I know I did at times back when I still could work.
My PCP physician was horrified. He started to tell me not to quit drinking water. I told him that I knew not to quit drinking it but that I didn't want to argue with the nurse.
I hope she got better training before she killed someone.
I must be doing the right thing because it's on my chart and no Dr. has ever told me to stop.

I see that there is something about Trileptal and water here: https://epilepsytalk.com/2015/06/07/sodium-and-seizures/ And I see that someone fro this this Forum responded 2 years ago.

 

[Andrew]

vitamin Dependent Seizures

Just wanted to share this with you: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789384/

I have had a genetic test and 'PNPO Deficiency' has been confirmed. I have now been using vitamin B6 to control my seizures - many different types - for over 46 years and a multi B complex tablet since 1990.

Also just want to remind you that these conditions are RARE.

My story can be found here.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**