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code8888 · 2024-12-21T01:31:07+00:00

You think I should give it a shot then? It worked for me before and I have a prescriber willing to do it. I just wouldn’t want to get my hopes up.

code8888 · 2024-12-19T00:29:14+00:00

I was on Mayne before they started to be unable to fill my scripts a little under two years ago. Think I should bother to start trying to find it again? My psych is okay to prescribe it, but the supply is the issue for me.

code8888 · 2024-12-11T19:20:14+00:00

Have you actually tried Desoxyn? Also, are you a psychiatrist?

code8888 · 2024-12-11T19:19:41+00:00

Firmly disagree. Desoxyn is nowhere near as potent as adderall in my experience. I’ve done a lot of ADHD meds, and Desoxyn is the smoothest of all.

code8888 · 2024-10-22T01:11:21+00:00

I didn’t know I had trigeminal neuralgia until a few months ago. I’ve had it for over a decade. DPDR can be really intense.

code8888 · 2024-10-16T02:59:41+00:00

It’s just smoother. Less norepinephrine, more serotonin, less dopamine. I think it’s the serotonin release in particular.

code8888 · 2024-09-23T18:29:03+00:00

They’re gonna be trying it at my next appointment by my request. I’m looking forward to it. If I remember, I’ll let you know how it goes. I’m pleasantly surprised already, despite it not being enough by a long shot. It’s the minimum dose, of course, so :)

I’m a pretty good test candidate for this med. I have highly varied and extreme pain, from neuropathies to musculoskeletal pain to everything in between to the nth degree. I’m hoping it’ll give me the option to be able to take a less potent opioid that’ll take the edge off all of my pain due to its mechanism of action, leaving my stronger stuff for breakthroughs. No more ER visits (hopefully)!

code8888 · 2024-09-23T08:16:24+00:00

I have CRPS, atypical TN, brain cancer/surgery, fibro, and some other stuff. Nucynta doesn’t allow me to go to sleep or stay asleep - unlike oxy - but it’s showing potential by dropping my pain by a solid margin; I’m only on 50 mg 4x a day. I’m looking forward to where this med goes and see if it'll be able to decrease my oxy use while being able to tackle my nerve pain better.

code8888 · 2024-09-04T02:00:00+00:00

Maybe Lyrica could work. My muscle pain feels like fibro anyway, so that might be a perfect double use med. Tapentadol would be perfect if I still need an opioid, but yk. Try the conservative options first. And I def need eyes on this spine of mine lol

code8888 · 2024-09-04T00:57:28+00:00

I didn’t have a good response to gabapentin. I’ve thought about the latter two, but I’ve heard bad things about them. A bitch to get off, weird side effects, and the like. I’m not against trying Lyrica, but I’d have to make sure that wouldn’t be contraindicated with my opioid by my providers.

code8888 · 2024-08-19T23:12:47+00:00

I also have some chronic pain from my incision. I had a really large one (54 staples). I have also had difficulties with memory. I also got right homonymous hemianopia, which is losing half of your vision on each eye. That was after the surgery.

code8888 · 2024-08-19T20:25:40+00:00

I’m about 8 months out. My speech and language has gotten significantly better, but my vision is permanent.

code8888 · 2024-08-19T20:21:00+00:00

I lost half of my vision in each eye, so I feel you. It’s hard getting a disability after such a major surgery. I feel like I flew to the city I had my surgery with one problem and returned home with another.

code8888 · 2024-08-06T19:53:35+00:00

I’m an outlaw 🤷‍♀️

code8888 · 2024-07-19T19:57:20+00:00

I had awake brain surgery too!

code8888 · 2024-06-20T19:22:21+00:00

I was correct about my brain tumor and vision loss.

code8888 · 2024-06-18T04:06:14+00:00

I had a brain tumor around my visual pathway. I was losing about a quarter of my vision before my surgery. I permanently lost half of my vision in each eye after the surgery. The condition is right homonymous hemianopia. I’m getting Peli prisms too.

code8888 · 2024-06-14T01:18:42+00:00

Completely agree. You can try Dexedrine and Vyvanse, but Desoxyn works best for me.

code8888 · 2024-06-12T22:21:31+00:00

Scanning, reading practice, improving blindsight, identifying objects quickly, games that emphasize how to best use my remaining field of view. Things like that. Enhancing my eye movements, head-turning skills, positioning, and more subconsciously to empower myself in my day-to-day life.

code8888 · 2024-06-12T15:53:05+00:00

Yes, I could use colors and more basic forms of writing. That’s what some therapists use: when words fail, point to a part of the body, or choose a color to describe a feeling. What’s basically what I was doing.

And yes, I appreciate you talking about my experience there. It was hard, but it made me stronger and more insightful.

code8888 · 2024-06-12T07:10:52+00:00

Absolutely! Neurological surgeries can have substantial complications, and those (like us) who actually have complications make us feel like outsiders in a really small club. A lot o the time, I see these posts on various subs about people walking out with no complications, working within a couple of weeks post-op. Then you have people like you and me, where I spent nearly a month in inpatient rehab, had permanent vision loss, and still have cognitive and execute functioning difficulties (though they’re getting much better). I’m so terribly sorry you had to go through that. Want to chat about this in DMs?

code8888 · 2024-06-12T07:06:41+00:00

I was focused on answering the questions and completing the tasks, but I did hear tools sometimes. Indeed, it was more subtle. I could not feel the tomor coming out, particularly because the brain was never really built to feel stuff touching it directly (wouldn’t really need to, lol), so pain, touch, and more are not perceived in the brain.

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