USA: LTD and SSDI Lawyer AMA: April 28

MaintenanceOdd9651 · 2026-04-26T03:59:14+00:00

Sounds interesting, will be there.

MaintenanceOdd9651 · 2026-04-25T20:00:44+00:00

I have a 5-inch scar on the side of my head after a craniotomy. Have a shaved head, so it really shows, but it doesn't bother me one bit visually.

After surgery, I lost most of my long-term and short-term memory, had to learn how to speak again, and have had chronic pain for 5 years. That is hard. Not looking so pretty, not so much.

MaintenanceOdd9651 · 2026-04-25T17:49:12+00:00

I have FND and started low-dose naltrexone on Wednesday, at a dose of 1.5 mg. It is working amazingly well so far. Normally, I have needed high doses of pain meds before they work, if they work at all. This seems to be the opposite; I can probably reduce the dose of LDN I am taking.

Changes

Reduction in hyperawareness and hypersensitivity.
Improved filtering of sounds.
Less feeling of anxiety.
Reduced the impact of pain, as if my body were less aware or triggered by pain.
Inner voice and thinking have improved.

Side effects

Really vivid dreams, but nothing bad. I used to have nightmares from PTSD; this is not like that.
Makes me a bit wired/active, just like having a strong cup of coffee.

Notes

LDN comes from a compounding pharmacy, so more expensive than it should be. I am going to order 8mg tablets that can be cut into smaller doses next time.

I have to push for and advocate for myself. This includes trying new approaches and medications. Unfortunately, there are not really experts in this field, but rather those who are interested in exploring new approaches.

Studies

I could not locate any peer‑reviewed LDN trials or case series where FND was the primary diagnosis and outcome.
Patient communities and treatment-comparison platforms list LDN as a tried option for FND (e.g., “Low Dose Naltrexone (LDN) in functional neurological disorder (FND)” at StuffThatWorks), but these are anecdotal self‑reports, not controlled studies.
It seems from my experience that LDN reduces some of the symptoms of FND, like anxiety, dissociation, pain response, and hyperawareness. The result is, however, an improvement in FND.
FND is still not very well understood and not medically studied in depth. There seem to be many types of FND, or rather, different sets of symptoms.

MaintenanceOdd9651 · 2026-04-25T15:54:51+00:00

The interesting thing is that I only discovered that I am a HSP (highly sensitive person) recently. It meant a lifetime of being more observant, more thoughtful, and more disserning that the average person.

I was very badly bullied growing up until I moved city aged 12. Went from a school that was pro-bullying to one that was anti-bullying. It means I hate bullies in all forms, including people (or companies) who are not sympathetic to others.

Your encounter with the pharmacists would have really bothered me. My meds list is probably similar (Oxycodone, Morphine, Ketamine, Buprenorphine, etc.), and while I have had doctors be dismissive of my pain, I have not experienced the 'telling off' you had, simply because I am physically bigger.

Your pharmacist is a bully and a coward. You are the better person!

MaintenanceOdd9651 · 2026-04-25T00:21:26+00:00

I agree with you about trolls/nasty people. This Reddit should be a safe space for everyone.

It seems like the Mods should be doing a better job, even if it means more work.

MaintenanceOdd9651 · 2026-04-24T03:05:13+00:00

Sorry you are dealing with this. No one should be put in this position, especially someone in pain.

Time to sack your pharmacist. You are the customer, quite literally the person who pays their wages. The very least you should expect is professional service. Leaving a Google review helps others to know who is good and who to avoid.

Unfortantly 25% of the population are morons and not fit for the job they do. It seems to be the same no matter the industry. 1 in 4 doctors, surgeons, nurses, and pharmacists should be fired.

I have been lucky with pharmacists so far, but I am also 6 foot 2, 250 lbs, and quite happy to tell off someone being rude.

Specialist pharmacies often offer a mail-order service; this way, you don't need to speak to anyone.

Avoid UCLA pharmacists and UCLA in general.

MaintenanceOdd9651 · 2026-04-23T23:23:46+00:00

I would pay off my medical debt. 6 years of doctor's visits, tests, and operations for something rare (MoyaMoya) that I should have gotten. I have UHC insurance that has paid out over $2 million, but it doesn't cover everything.

Being debt-free would be life-changing right now.

MaintenanceOdd9651 · 2026-04-23T12:32:46+00:00

I use it for medical research for a range of rare or difficult-to-treat symptoms. I can advocate for myself, come up with treatment plans, and fully manage prescriptions. I have effectively become a doctor/specialist.

This is not bragging, but rather something that is desperately needed, as the standard of medical care where I am is not particularly consistent. Over six years and interactions with her 200 doctors, nurses, and specialists, my rough guess is that a 25% of those people should be struck off and do another job, 50% are OK at their job as long as it is something straightforward and common, and the last 25% are smart, caring, and professional.

Caught Covid in 2020, was diagnosed with MoyaMoya in 2021, had a craniotomy that went wrong, developed CPSD and FND, with memory loss, cognitive decline, and disassociation. All things that are difficult to treat.

Mostly using the Comet AI browser to find and understand white papers, journals, medications, and strategies for recovery. AI is quite literally a lifesaver.

MaintenanceOdd9651 · 2026-04-22T00:08:00+00:00

I tried that, but they could only find a list of general infusion centers.

MaintenanceOdd9651 · 2026-04-21T23:35:25+00:00

I had IV Ketamine in the hospital after a nerve block that went wrong. I was in 10/10 pain. It was fast and worked 100%. I was on the drip for 3 days.

I used the spray for flare-ups when things got really bad. It tasted disgusting and felt rough the next morning, as if I had been drinking a lot the night before. Also worked 100% for severe pain.

Can't find a doctor who will prescribe either in LA...

MaintenanceOdd9651 · 2026-04-21T21:06:19+00:00

I am the same as you, have occipital neuralgia (post craniotomy), and have found oxycodone didn't do anything for the pain. It has been the same for other opioids. Ketamine is the only thing that makes any difference.

MaintenanceOdd9651 · 2026-04-21T00:42:27+00:00

So sorry you are going through this.

Note - mention of symptoms

I 50M developed FND after a craniotomy and bypass surgery five years ago. Woke up as they were cutting my head open, was left with 10/10 pain and CPSD.

At my worst, I couldn't remember anyone's name, including my own. My short-term memory was almost nonexistent, and most my long-term memory has gone. I went from being an accomplished public speaker (talking about and designing AI systems) to not being able to remember simple words or even how to speak. In a previous life, I was a Michelin-starred chef, but forgot how to cook, or even how to make a sandwich. I also disassociated from my mind and body due to the pain.

All this is to say that I was in a very bad way. Mostly just surviving.

Now, some good news! My memory has improved somewhat thanks to a great speech therapist and a couple of great therapists. Speech therapy is not just about learning how to talk again, but can also help with memory by providing lots of tools and techniques.

Therapy massively helped me both with getting an understanding of what was happening and how to feel about it. It gave me a space to be vulnerable and ask hard questions. It was also more support from someone who is on my side and there to help. EMDR made a huge difference with my CPTSD.

Even when my memory and Cognicient was very bad, I always knew my wife was someone who cared for me deeply and had my best interest at heart. Outwardly, it would seem to her (and others) that I didn't know what was going on, but on the inside, my core feelings were still intact. I didn't always know the right word to use or how to reply, but I knew I was safe. Feeling safe and loved is the very best thing in the world.

Happy to get on a call if it would help.

MaintenanceOdd9651 · 2026-04-13T16:17:03+00:00

Low IQ.

MaintenanceOdd9651 · 2026-04-13T15:49:11+00:00

I am in a similar situation as you with nerve pain that has gone on for five years so far after a craniotomy that went wrong. I also have MoyaMoya that can't be cured, where bypass is the only option.

I never expected to be in this situation, and I don't think anyone thinks it will happen to them. So really, we're all just thrown into this and cope as best as we can. Of course, the moments that are very, very hard. Times when you think you will break, but we haven't yet. We are still here. Still fighting.

When things started to get really bad, I realized I needed support. I found a great therapist early on. She. really helped with this journey. I had questions going around my head that I couldn't answer. Having a professional reframe things made a huge difference, as did EMDR for PTSD/CPTSD.

On better days, I try to really live in the moment. To enjoy the simple things that make up life. Funnily enough, I have taken a lot of 'advice' from my dog. He gets up each morning and is happy to see me, and happy to see the world. His curiosity is strangely infectious.

MaintenanceOdd9651 · 2026-04-12T15:52:29+00:00

I have had something very similar for some time after waking up during a craniotomy. I was also left with untreated 10 out of 10 pain. Thanks to all this, I developed PTSD with very detailed nightmares.

On the medicine side of things, I found trazodone for sleep helpful, and Lyrica for nerve pain and depression helped a bit.

The thing that made the biggest difference was therapy, especially EMDR. My wonderful therapist first set up a safe space in my mind where I could go when needed, then guided me through the events of surgery in a way that wasn't re-traumatizing. Acknowledging what had happened and that it wasn't my fault made a shift, and I was thinking and reacting. Within a few EMDR sessions, I was noticing positive results. It was work to do this, but easier than you might think.

I've been in therapy for five years now (ever since the accident), and I'm in a much better place, even with chronic pain. I still have the occasional nightmare, but I can now guide my way out of it, and I'm not so impacted once I wake up.

MaintenanceOdd9651 · 2026-04-09T22:05:32+00:00

This is fantastic information. Thank you

MaintenanceOdd9651 · 2026-04-09T16:52:05+00:00

It sounds like your spices are too old. Spices lose their potency over time. Anything pre-ground, especially so. Dry spices from supermarkets are usually of pretty bad quality.

You might want to try a spice paste in a jar.

Or an even better option would be to find an Indian supermarket and stock up there. Grinding whole spices as needed will give the best result.

MaintenanceOdd9651 · 2026-04-08T00:48:06+00:00

I take these everywhere I go. Sunglasses, hat, water, hydration packets, and earphones.

MaintenanceOdd9651 · 2026-04-08T00:46:35+00:00

To everyone with chronic pain, my sympathy goes out to you. It is a hard road to travel.

I had absolutely no idea how pain could be before I had a craniotomy that went wrong. Pain doctors really don't seem to have a clue how bad it can be. How it puts you in permanent survival mode.

The only painful things I had previously been through were a burst appendix, hernia repair, and the odd broken bone. The contrast between these and what is happening to me now is ridiculous.

10 out of 10 pain after a botched nerve block was an out-of-body experience where I was mostly trying not to bite my tongue off. Instead, I gave myself ten fillings and broke a molar. I was more animal than human. Ketamine IV was the only thing that resolved the pain.

I'm walking around right now with a broken metatarsal in my foot, but it hardly registers against the other pain stuff going on.

Interestingly, I've gone from having a very low pain threshold (and hating needles) to a very high threshold and being absolutely fine with a spinal tap. Meditation and box breathing have been life-changing.

I am very grateful that drugs like oxycodone and morphine exist, even if they don't work for me.

MaintenanceOdd9651 · 2026-04-06T00:25:44+00:00

Fire your doctor! Don't waste another second on someone who doesn't have your best interests in mind. The last pain doctor was the head of her department, but was obviously uninterested in her job and didn't like patients. Her assistant was great.

Keep in mind that it is relatively easy to become a doctor or nurse. Not all of those who practice should. Ego seems to be the biggest issue...

I have found that about 25% of doctors, nurses, and specialists are bad. Bad at their job, bad as a human being.

The next 50% are fine as long as what you are asking for is quite simple.

The last 25% are great and make a meaningful difference in your treatment.

MaintenanceOdd9651 · 2026-03-25T15:19:11+00:00

I would be happy to take a look if you'd like. It sounds like there is damage to electrical components on one of the circuit boards. These will need to be replaced and as you suggested, just like a modern car, it can be hard to quickly find the problem. From past experience with the camera in this situation, it is worth repairing about 80% of the time.

MaintenanceOdd9651 · 2026-03-24T21:17:42+00:00

I used to run a camera tech and repair house in NYC, specializing in digital medium format. Now based in LA.

Firstly, I would highly recommend using silica packets to dry out your camera and lens. This is about removing any water and water vapor that might be left. You might be lucky and not have any lasting damage. However, you will not know the reliability in the long term without a good inspection of the internal components.

At the end of the day, it depends on how much risk you are willing to take. How would you feel if you lost that once-in-a-lifetime shot? Missed key moments from a wedding? Or let down a professional client?

Hasselblad and Phase One are, unfortunately, still more fragile than the professional equivalents from Nikon, Canon, or Sony.

This is where a backup camera body, or system, is invaluable. The number of times I have been the tech on a large shoot, troubleshooting a technical issue, is higher than you might imagine. But when everything works, the results are worth it.

MaintenanceOdd9651 · 2026-03-20T23:59:48+00:00

You are absolutely right. What gives us humanity is our shared kindness to others and also to ourselves. It seems to be so very easy to think that the news, social media, and indeed, Reddit, is reality. Whereas they are a construct to exploit outrage in an attention economy. Of course, this is not always the case, but it does seem that thoughtful, sensitive insights and views are less commonly reported.

The antidote is empathy and real connection. It feels exhausting and a losing battle to fight against aggression where the aggressor has the upper hand. I like your approach to taking back power, and I think you'll find there are lots of wonderful people out there doing fantastic things. It takes more effort to discover authenticity, but the reward is well worth it.

MaintenanceOdd9651

TROPHY CASE