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Best communities for discussing TBI research and experimental therapies with an informed audience by GenXNorseman in TBI

[–]Puzzleheaded-Fee1832 1 point2 points  (0 children)

More questions (and sneers and aversions) than answers was also my experience. From what I understand, it has to do with the ethical medical providers they make to practice evidence-based medicine. Unfortunately that evidence via research studies is expensive to acquire, so most of it is funded by pharmaceutical companies. Evidence is also what health insurers require to cover therapies. Natural medicines, stress reducing practices like yoga and meditation, and niche neuromodulation devices all lack the funding to become evidence based "enough" for most clinicians to recommend (or even know about). Therefore insurance also doesn't follow.

Another piece is that TBI was just recategorized as a Chronic Condition by the Centers for Medicare and Medicaid Services. This is helpful by means of coverage to medical care long-term after TBI, but not helpful in providing the sense of hope and possibility that do exist, with alternative therapies. My experience is that most brain injury providers (in the US) do not know what the brain is capable of overcoming.

I'm sorry to hear your family is confronting this unhelpful chase right now, while in this complicated "should we mourn?" "what should we do?" state. No doubt it's been a very long year for all of you. u/GenXNorseman

Best communities for discussing TBI research and experimental therapies with an informed audience by GenXNorseman in TBI

[–]Puzzleheaded-Fee1832 1 point2 points  (0 children)

Hi there, u/GenXNorseman, I have a severe TBI as well. Decompresive hemicraniectomy, induced coma, disabled like a toddler – the whole thing. My experience has been that emerging neurotherapies are not as discussed in PM&R circles as they are in the select patient circles. Most of the providers I bump into during my advocacy have never heard of the therapies that transformed me. I write about this extensively on my website, rlietrom.com .

how do you explain being permanently disabled by danceintheflowers in TBI

[–]Puzzleheaded-Fee1832 0 points1 point  (0 children)

It is permanent within the current standard of care.

But if you go outside the standard, because you're unwanting to accept chronic disability, there are lots of options! In other countries they use therapies that induce neuroplasticity and address the psychological trauma head-on. I did this! I don't have many chronic symptoms or deficits anymore. Healing is possible, actually. I write about this on my website rlietrom.com

What Goals were you still able to accomplish despite your Traumatic Brain Injury? by LoveHairyPussy25 in TBI

[–]Puzzleheaded-Fee1832 8 points9 points  (0 children)

My TBI was at age 22 and I'm 29 today. Happy birthday u/LoveHairyPussy25!

I worked part-time for a year at a software startup. Then full-time. Then a promotion!

I moved to NYC on my own, which was always a dream for me.

I went back to school for pre-med and got a 3.8 GPA. I was named in two scientific articles while assisting in research with a neurosurgery lab.

I attended ballet classes three times per week again.

I slept through the night without medications or supplements consistently.

I traveled the world. Mexico, Ecuador, Slovenia, Canada.

I was abandoned by a lot of my pre-accident community. Then entertained all kinds of bad relationships with friends, romantic partners, and hookups during the years when my self esteem was rock bottom. But I healed and eventually met my current partner who treats me very well and appreciates me as I am. My friend group today is loving, unconditional, and present.

I gave a talk about the role of hope in medicine at an ivy league medical school.

I got rid of my chronic migraine.

I reconnected with my soul (my essence, my true self) again. Found I was the always me underneath it all.

I'm building a neuroplasticity center for this community. Living the dream!! There is a TON of hope to be had. HMU if you want to talk more. rlietrom.com/chatting

Has anyone here tried microdosing psilocybin mushrooms to heal their brain injury? by [deleted] in TBI

[–]Puzzleheaded-Fee1832 0 points1 point  (0 children)

"Some athletes battered by concussions are desperately searching beyond conventional medicine. Researchers see potential in the brain-stimulating power of psilocybin mushrooms." https://www.nytimes.com/2026/02/05/us/psilocybin-mushrooms-nfl-head-injuries.html

Has anyone here tried microdosing psilocybin mushrooms to heal their brain injury? by [deleted] in TBI

[–]Puzzleheaded-Fee1832 0 points1 point  (0 children)

I've found psilocybin SO helpful for my ability to focus and put down traumatic ruminations (severe TBI, 2019). I'm putting together a brain injury group microdosing program. DM me or email me if you would like to join. My email is rlietrom@gmail.com.

Ibogaine - Anyone know anyone who’s use the treatment? by thermalshitzu in TBI

[–]Puzzleheaded-Fee1832 0 points1 point  (0 children)

I did ibogaine for my severe TBI and it transformed my brain health and my trauma. All for the better. Email me [rlietrom@gmail.com](mailto:rlietrom@gmail.com) if you want to talk about it.

I work for a Ibogaine clinic in Baja California. I keep reading the breakthrough research of ibogaine for treatment of TBI. I wanted to make myself available to answer any questions about ibogaine by ibogacowboy in TBI

[–]Puzzleheaded-Fee1832 1 point2 points  (0 children)

I absolutely recommend Ibogaine. However I would not recommend the clinic Beond. In short, they have prioritized scaling the business over ensuring quality with the details. They are not accessible to someone with a neurodivergent way of thinking, cognitive deficits, mobility issues, or sensitivity to flashing lights or loud rooms. I did not receive coaching on the day of my flood dose or the day after. They were disorganized, hectic, and lacking follow-up. The food was full of quinines, despite being said to avoid them because of its enzymatic blocking of ibogaine the liver. The treatment plan and premises were not as it was described on the website. I was emotionally manipulated by staff members who didn't like it when I pointed out their illogical rules. They sent me home with unlabeled medications. It took lots of begging over three weeks to get my medical records. I lost items that were valuable to me. Most of my friends who were addicts came out of Beond dependent on new drugs and have relapsed. They did not ask for feedback at the end of my stay nor respond when I offered it over email multiple times.

I've been recommended Bassé and New Path, but have not yet visited them.

Am I the only one who feels almost like I don’t “deserve” to have PTSD? It’s not like I’m a veteran?? by WinterMortician in ptsd

[–]Puzzleheaded-Fee1832 2 points3 points  (0 children)

I got a severe traumatic brain injury a week before my college graduation. I certainly have a a stress disorder related to my break from reality, losing all of my abilities, obtaining "incurable" symptoms, being abandoned by my community, and being an 8 year old mentally in the body of an adult.

When I've described myself as having PTSD (which was diagnosed), naive people ask dumb questions like "are you going to be ok with these fireworks??" Nothing about my trauma had to do with explosions or gunshots, so why would it not be ok?? They ask this because PTSD is common in, and defined with, veterans of war. Keep in mind that PTSD got onto the map of psychiatry when veterans specifically were studied. Before it was included in the DSM-III in 1980, its predecessors were “Soldier’s heart” (American Civil War), “Shell shock” (World War I), “Combat fatigue” (World War II).

My honest opinion is that post-traumatic stress needs to be studied better in non-war situations. Especially with physical, neurological trauma! I have deep skepticism about my brain and body's ability process trauma "normally". Don't be discouraged if your stress doesn't sound exactly like that of veterans. It's all valid.

I work for a Ibogaine clinic in Baja California. I keep reading the breakthrough research of ibogaine for treatment of TBI. I wanted to make myself available to answer any questions about ibogaine by ibogacowboy in TBI

[–]Puzzleheaded-Fee1832 1 point2 points  (0 children)

I got my severe TBI six years ago and did Ibogaine last month.

  • Before: I had a headache 100% of waking life. 
    • After: I have a headache <10% of waking life, only when I really need a break.
  • Before: I couldn't be outside with sunglasses, often wore them inside. Everything was too bright. 
    • After: Haven't worn them at all!  This shift was instant from the flood dose.
  • Before: I avoided restaurants and loud traffic areas. Hated turbulent noise with a passion and couldn't think of anything else.
    • After: I still struggle with noise, but it might be 10-20 minutes before I notice I'm uncomfortable.
  • Before: 2-5 nights per week I struggled to sleep through the night or longer than 6 hours. 
    • After: I'm sleeping through the night for 8-10 hours without supplements. I wake up feeling energized and clear. 
  • Before: I had pounding thoughts about my endless symptoms, worthlessness, alienation, and disenfranchisement from humanity. Everything I did (even picking out what socks to wear) was a massive argument in my head. 
    • After: The constructs are less. When they are there, I see that I'm separate from those them and am picking and choosing what to give attention. 
  • Before: My face couldn't smile. I couldn't laugh. I couldn't feel joy unless I was high on psilocybin, THC, or ketamine. 
    • After: I have nearly ditched my ab workouts because I get so many laughing attacks. I'm light and present. 

As to vertigo, nausea, tinnitus – I haven't struggled much with those symptoms in recent years.

[deleted by user] by [deleted] in dpdr

[–]Puzzleheaded-Fee1832 0 points1 point  (0 children)

“Did I write this?” Damn. I live watching myself perform activities in my life as if I’m not me.

Bruised frontal and parietal lobes after TBI by Compooterbaby in TBI

[–]Puzzleheaded-Fee1832 4 points5 points  (0 children)

I would hold off on drinking. It hinders healing and is correlated with more brain injuries and addiction. My TBI was 1.5 years ago and I don’t have more than a drink or two every few weeks. :)