This is the latest in a series of blog posts highlighting consumer experiences taking B3 vitamin supplement Nicotinamide Riboside “NR” (FAQs) (Reviews). Though scientific studies are ongoing, NR is believed to impact people in many different ways (see list of “Categories” on the right side OR below on mobile). Our first consumer anecdote came from Chromadex CEO Rob Fried HERE. The latest comes from Mark who suffered from Epilepsy. His story is remarkable (please consider sharing your own NAD+ supplement experience below):

From Mark Molinaro (who posted this story as a comment HERE. He also confirmed the story via email):

“About 8 years ago I was out to dinner with some people and upon adjourning we descended a staircase leading back to the parking area. The woman above me on the staircase lost her balance and as I turned around to help her she fell forwards propelling us both to the pavement. She landed on my chest and I landed on the back of my head and the impact of her weight and my own resulted in several subdural hematomas, damaging areas both in the posterior of my brain from the impact itself and the anterior from my brain ricocheting of the front of my skull.

Up to that point I was a pretty high achiever, gifted, and still am but the brain injury left me with anosmia, phantosmia, sleeping difficulty, mood swings, minor cognitive challenges and persistent neuropathic pain.

The beginning of my recovery was slow; it took me a month for example to be able to walk to the mailbox for the first time. I enlisted the help of some great professionals at Emory’s neurological department and a cognitive behavioral therapist but brain injuries are tricky; no one can tell you how recovery will proceed and what further complications you might encounter. I was well aware that many people with brain injuries develop epilepsy over time and four years later I had my first myoclonic seizure.

Over time the seizures became a little more frequent, a little more intense and a daily occurrence. The triggers were everywhere – certain wavelengths of light, sounds, movement – airports, grocery stores, restaurants all now were toxic to me. I couldn’t leave my home without having a seizure, and even staying at home was little assurance against having one. I was pretty far along in my recovery and felt pretty good but epilepsy was a huge setback for me.

Each seizure took the same tack; several hours of pre-seizure brain fog, my gate would slow, I’d find it hard to use my fingers and it would become difficult to speak and think as my brain was on fire.

The seizures themselves were fairly benign looking. I did not lose consciousness nor were they the classic convulsive type. My left upper torso would repeatedly and visibly torque compressing my left lung in the process. There would be pretty loud, forced exhales followed by equally sizable inhales. My head would involuntarily rock backwards and my jaw would twitch. My world revolved around seizures and more specifically avoiding them. As a person who prided themselves on achievement this was not the life I wanted to live.

My Neuro at Emory prescribed Keppra – one of the first drugs epileptics get put on and the drug many immediately want to get off due to its side effects. The most prevalent side effect is intense anger – they even have a word for it – Kepprage. I’m a 250lb guy, already angry with my situation, going through cognitive behavioral therapy to deal with it and wrapped a little tight to begin with so I declined to take Keppra and looked for alternatives.

I’m a pretty good researcher and took full advantage of my inability to sleep by reading study after study on Pubmed and learning about the experiences, successes and failures of other people similarly afflicted. Blue tinted glasses helped as did noise-cancelling headphones, cannabis and near-infrared light therapy. But even with all that and trying to avoid triggers I had seizures daily for the next several years. I can’t adequately express how terrible my life had become.

In September of 2019 I was listening to a Joe Rogan podcast featuring Dr David Sinclair. He spoke about longevity and the impact of NAM+ and NMN. I’ve been working with a longevity doctor for over ten years so any product in that space is of interest but after doing a bit of research I determined that TruNiagen would be superior to NMN and took my first dose, 1000mg on October 1.

I really wasn’t expecting anything and I certainly wasn’t expecting my seizures to subside but they in fact did.

Neuropathic pain has also diminished significantly.

I’ve since altered the dose to 1200mg orally and 150mg via iontophoresis daily and I’ve been seizure-free every day since my first dose of TruNiagen.

As difficult as it was to describe the toll seizures took on me it is even more difficult to describe what TruNiagen has given me back.

I have my life again. All of it. And that’s why I thought it important to weigh in here.

I don’t know how exactly how Nicotinamide Riboside (NR) is making this happen; it would take human studies to fully understand the mechanism. That would take years and people with brain injuries and epilepsy don’t have the luxury of waiting for the “how” especially when the “what” is available right now. People need to know.

Hopefully my experience with TruNiagen will help someone”

Related:

  • You can find an update on Mark’s condition HERE
  • FAQs on the Potential for Treating Neuropathy with Nicotinamide Riboside “NR” (Link)
  • Please share your own NAD+ supplement experience using the form below. Others will undoubtedly benefit.
  • NAD+ boosting supplement NR (FAQs) (Reviews)
  • We’re on Twitter @RaisingNAD

—————

SHARE your own NAD+ supplement experience: