Creatine Benefits for Epilepsy

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!!!

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.

@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.

@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

Wow - you hit the nail right on the head. "Instead of receiving the best of both worlds, many are forced to choose sides or navigate these separate approaches on their own". Boy, does that resonate. I have mainly relied on western medicine. There is not much else to try. Can't have deep brain stim or VNS since screwed up prior surgery rendered it unsafe to surgically implant anything. Left with participating in 2 new trials for new epilepsy meds. My neurologist on the GAD65 autoimmune side has nothing much else to offer. Everything from steroids, Cellcept, Rituximab, IVIG infusions, Actemra injections has failed, often with unacceptable side effects. No one (including Mayo) understands how or if the two diseases are unrelated, or it's a rare case of GAD65 autoimmune epilepsy. In any case, refractory temporal lobe epilepsy continues on its merry way and cognitive decline and brain fog are ever-present. Hence the turn to eastern medicine, which is little understood and all expensive gambles. I've tried Reiki, chiro, supplements, creatine, accupuncture, brain mapping, passive and active neurofeedback -- all to no avail. Still thinking about peptides, Chinese medicine, more investigation into thyroid and gut issues, non-inflammatory diet. IT'S EXHAUSTING and at what point do I stop seeking, and accept this is never going to change? And yes, I am trying to do this on my own. I cannot find an integrative doctor who understands this or thinks he or she can help and be a gatekeeper. Two very well-known integrative experts have turned me down due to complexity and uncertainty of my brain issues. Thank you so much for your post, and allowing me to share.

My pleasure @cathy5161
Navigating integrative or functional medicine in the Western world on our own requires caution, based on my experience. While there are qualified practitioners, unfortunately many charlatans exist. Both my mother and I once fell for questionable integrative doctors who charged more than our conventional physicians. Indeed, the protocol prescribed by this integrative neurologist I have been to in the past was exhausting, the same as your experience.
After these experiences, when an integrative doctor charges more than my neurologist, it immediately raises a red flag, prompting me to cancel. Fortunately, the hospital he in São Paulo (Brazil) where my current doctor practices is beginning to integrate conventional and complementary approaches, particularly for cancer patients. My father, for instance, receives Reiki sessions during his cancer treatment at this hospital. Though not curative, these sessions help him relax and improve his well-being.
Your post reminded me of some wise advice given me by my previous neurologist: "Let's try one thing at a time, otherwise we won't know what's working and what isn't."
Based on your last post, I feel you have had many experiences with functional medicine. Do you have any suggestions for identifying legitimate integrative medicine doctors and avoiding those who might be unqualified or exploitative?
Chris (@santosha)

I take Creatine every day. Hasn't seemed to help. My neurogist okayed it.

@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.