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DiscussionCreatine Benefits for Epilepsy
Epilepsy & Seizures | Last Active: Jun 4 8:14pm | Replies (19)Comment receiving replies
Replies to "@cathy5161 Thank you for sharing that additional information about your treatment plan. I would be genuinely..."
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.