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Creatine Benefits for Epilepsy

Posted by Chris Gautier OR Santosha @santosha, Mar 28 6:39am

Good Morning Everybody!
Recently, while researching creatine for another purpose, I discovered some medical studies regarding its potential benefit for epilepsy patients. Is anyone familiar with it? If so, have you spoken with your neurologist about it and could you share your experiences? I take creatine usually on days of much body workout, such as tennis. My doctor said it is safe to use.
Thank you!
Chris (@santosha)

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Chris Gautier OR Santosha | @santosha | 1 day ago
In reply to @cathy5161 "As far as peptides, I've been working with an "expert" in California. He has developed a..." + (show)
@cathy5161

As far as peptides, I've been working with an "expert" in California. He has developed a protocol specific to my situation. Mine is complex, given both the epilepsy and a rare autoimmune disease involving GAD65. Actually came to Mayo in August for 2 weeks for a second opinion on the GAD65.

Have not started peptides yet. Intend to. Research strongly suggests that they can help in mutiple ways. Neurologist okayed it.

Wish I could find a knowlegeable gatekeeper for all the experimental western meds for GAD65, my 3 autoimmune diseases, supplements, non-Western protocols. Integrating eastern and western approaches. Not sure one exists. Still looking. Will be incredibly expensive since insurance won't cover.

Cognitive decline and brain damage is my biggest concern.
Any comments welcome!!!

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@cathy5161
Thank you for sharing that additional information about your treatment plan. I would be genuinely interested in hearing about your experience once you have begun this treatment.
I have often wished for healthcare providers who skillfully blend Western with Eastern medicine approaches. Unfortunately, as one candid doctor confided in me, a troubling divide still exists in the medical community. Conventional health professionals often view integrative approaches with skepticism or dismissal, while many integrative health professionals reject evidence-based conventional treatments outright.
The real tragedy is that patients, who could benefit from a combined approach, find themselves caught in the middle of this professional dispute. Instead of receiving the best of both worlds, many are forced to choose sides or navigate these separate approaches on their own.
Have you also had those experiences yourself?
Chris @santosha

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Chris Gautier OR Santosha | @santosha | 1 day ago
In reply to @lisalucier "Here is some information from a preclinical study of creatine as an anticonvulsant published in Frontiers..." + (show)
@lisalucier

Here is some information from a preclinical study of creatine as an anticonvulsant published in Frontiers of Neuroscience journal in 2023:

- Potential role of creatine as an anticonvulsant agent: evidence from preclinical studies
https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2023.1201971/full
A key couple of sentences in the abstract for this publication are:

-Currently, limited evidence mainly from preclinical animal studies suggest anticonvulsant properties of creatine; however, the exact mechanism remain to be elucidated. Future work should involve larger clinical trials of creatine used as an add-on therapy, followed by large clinical trials of creatine as monotherapy.

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Hi @lisalucier
I finally had a chance to thoroughly review the scientific paper you shared with us. What a fascinating read! The research presents some truly compelling insights that I hadn't encountered before.
Thank you so much for taking the time to share this valuable resource with our group. Your contributions help us stay informed about the latest developments.
Warmest regards,
Chris @santosha

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Chris Gautier OR Santosha | @santosha | 1 day ago
In reply to @dannoyes "@cathy5161 @santosha I would strongly caution anyone considering creatine supplementation for epilepsy. If possible, I’d recommend..." + (show)
@dannoyes

@cathy5161 @santosha I would strongly caution anyone considering creatine supplementation for epilepsy. If possible, I’d recommend discussing it with a specialist — ideally a Mayo Clinic neurologist. While creatine deficiency syndromes (CDS) are only tangentially linked to epilepsy, that connection alone is enough to make me careful about introducing anything that could potentially affect seizure thresholds or brain chemistry.

Over the years, I’ve had neurologists recommend everything from GABA supplements to CBD and even Ketamine. However, my experience at Mayo was dramatically different. Within a short time, they pared everything down to only the antiseizure drugs (ASDs) they deemed essential — and eliminated everything else.

It was eye-opening. Whereas many other neurologists seemed eager to recommend pills or supplements — often creating more problems than they solved — the Mayo approach was focused, disciplined, and grounded in evidence.

I’ve realized since that, as much as I want my epilepsy to be “fixed,” chasing solutions through ancillary treatments had become a crutch. It gave me the illusion that I could somehow force improvement, rather than working with what is and striving to live better from that foundation.

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Hi @dannoyes
Thank you for sharing your experiences.
For sure, we must be cautious with supplements and non-conventional treatments, which are often marketed as miracle solutions to our health challenges. I have made it a personal rule to discuss everything I take—even homeopathic remedies—with my neurologist before adding it to my regimen.
My current doctor has a Chinese heritage. Given that Traditional Chinese Medicine represents one of the world's oldest medicines (second historically only to Ayurveda), his cultural background seems to have fostered a greater openness toward integrative approaches.
Chris @santosha

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dannoyes | @dannoyes | 1 day ago

I am so glad you have a great provider. I wish I had known ahead of time how important this would be in my care. You are very fortunate,

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