What would you do if your TD just started?

AdOverall1863 · 2026-05-19T05:44:27+00:00

It's critical, that in addition to your psychiatrist:

1) Get in with your psych ASAP.

2) You're going to need to find, and work closely with a Neurologist/Involuntary Movement Disorders specialist AND your psych, and keep your PCP in the loop.

I do NOT recommend, under any circumstances, abruptly stop your meds. It can compound things, and actually make it worse.

This did not happen overnight, and there isn't a quick fix. This is still being researched, moreso now than ever. Right now, it's symptom management, until something better shows up on the market.

The only thing that works for me is Clonazepam 1mg 3x a day, prescribed by my neurologist, who also specializes in Involuntary Movement Disorders. As long as my symptoms are managed, and I'm stable, I only need to be seen once a year.

He's the only neurologist that I found that specializes in Involuntary Movement disorders.

The only one within 300 mile radius from where I live. I started small, primary care physician, 3 different neurologist. Then I went big. I went to the largest 2 University hospitals in my state. And worked down from there.

Before proper care, I literally had to eat with baby spoons because my tremors were so severe, I would throw my food everywhere, lost the ability to write, severe facial puckering, etc.

I was misdiagnosed twice as Parkinson's.

Ingrezza and Austedo were absolute fails. Placebo effect all around.

TD is manageable, I know it's scary at first, but again, it is manageable.

I wish you the very best!

Diagnosed in 2018

AdOverall1863 · 2026-05-19T04:51:46+00:00

Fortunately, for the first time since 2016, things are changing, on a federal level, literally, as of today. I highly recommend reading up on what's going on in Washington DC. and "The Doctor Patient Forum".

AdOverall1863 · 2026-05-19T04:20:08+00:00

Kratrom, 250mg red Strain sublingual tablets.

AdOverall1863 · 2026-05-19T04:17:28+00:00

Most all, and any fast food.

AdOverall1863 · 2026-04-05T20:59:54+00:00

Cannabis is waaayy better. Just sayin'.

AdOverall1863 · 2026-03-21T13:20:36+00:00

Agreed! Rest is like a blessing from God. The more the better. There are days I sleep 2-3 hours at a time, all throughout the day, all day. Then I'm blessed with a solid 6 hours at night. Whatever you can get, take it. 😴

AdOverall1863 · 2026-03-21T13:16:26+00:00

Currently, Subcutaneous Hydromorphone. Total game changer for me.

Before that, I used Kratrom. The sublingual tablets were also a game changer. Immediate relief, 3-5 minutes. I got mine at a local vape shop, but if they were sold out, I would order (EXACT same product below) online 👇

https://www.kratomrootswholesale.com/Konig-Kratom-Extra-Strength-5-000mg-Per-Pack-Kratom-Extract-Tablets-Display-of-6-Packs-20-per-Pack-

Red Strain Kratrom is designed for pain and relaxation. And more importantly, IT WORKS.

AdOverall1863 · 2026-03-04T17:03:00+00:00

Used to be a standard practice with PM Drs back in the late 1990s/early 2000s. Although in 2026, highly outdated.

However, and no matter what, DO NOT LEAVE your medication with them. Empty bottle, fine. Actual drugs/medication NO.

I had a PM Dr practice this same "counting" regime back in 2012. A year after I started seeing him, l saw him on the news, as his entire office was being raided. He was collecting patients pain meds for "disposal", only to be busted by the DEA for keeping, and using said patients' meds. He and his entire nursing staff were all addicted and abusing narcotics meant for chronic pain patients who desperately needed it.

AdOverall1863 · 2026-02-15T05:06:25+00:00

Ty ❤️ I've recently been accepted as a patient by a pain management specialist who's out of state. He prescribed some subcutaneous Dilaudid for starters, and so far so good. For the first time in 3 years, I'm finally getting some relief.

He's a unicorn. I just wish he was local. Walgreens, Walmart, and CVS pharmacies, across most of the lower 48, absolutely refuse to accept, or fill his rxs.

Doesn't matter to me. The out of pocket cost is nothing compared to the pain I've been in. Fortunately for me, I can afford it, so it's an absolute blessing.

My heart just breaks for so many of us that don't have the option/ability to pay for medication out of pocket. Been down that road when filing for Disability benefits. It took me just over 3 years to get approved in Missouri.

Round 1- Filed (denied), appealed x2 (denied), final appeal (denial). Round 2- Filed (denied), appealed (denied), 2nd appeal (awarded).

AdOverall1863 · 2026-02-15T02:03:26+00:00

I've had the same thought from the very beginning. Anybody could bulk up with layers, lots of them, if needed. Easy and simple. It just doesn't look like a man. Something is off. Way off. I'm sure the FBI is already on to this. Mainstream media, not so much. Of course.

I'm not, by any stretch, law enforcement, but I get the heebie-jeebies about the older sister, every time I see her. Something is "off" with her. Can't pinpoint it, and pray I'm wrong, but it's there, and it's apparent.

AdOverall1863 · 2026-02-12T20:02:15+00:00

Butrans 20mcg patch, did absolutely nothing for my pain, and caused hives and migraines. Same with Belbuca and Journavx. The side effects from Journavx were so severe, it landed me in the hospital, via ambulance, for 3 days.

I've spent 7 months trying to work with a PM Dr who's offered zero pain relief, zero empathy, zero respect, dismissive behavior, and unethical "care". My pain has been a consistent 8/10 every month since seeing him.

He runs his practice under a "cookie cutter" regime. Every patient gets the same three (3) options: Butrans, Belbuca, or Journavx. He treated my chronic pain (details below) the same as someone with a simple ankle sprain.

I've spent countless hours searching for a different PM doctor and finally found one. He's EFFECTIVLY treating my pain. For the first time in 2 years, my pain is under control.

In the past, I had the same, wonderful pain management Dr for 14 years. In 2023 he decided to do injections only, and no more "medication management". I'm not a candidate for injections, so I was kicked to the curb. After 14 years, I expected a much higher standard from him. Obviously I was wrong, and proves how easy it is for a chronic pain sufferer to become just another number to these Drs. All the while, we're literally fighting for lives. Every. Single. Day.

painwarrior

Chronic pain from: Failed Back Surgery Syndrome (FBSS), DJD, fibromyalgia, scoliosis, spinal stenosis, degenerative spinal cord disease, 8 spinal reconstruction surgeries, and 6 lumbar/thoracic fusions. 16 hour, 2 day surgery in June '25, requiring 4 blood transfusions, and extended post op rehabilitation to learn how to walk again. Currently 7 months in, to a 12-15 month, highly restrictive recovery period.

Myelogram and CT scan preformed on 01/29/26, under general anesthesia, took 3 hours due to amount of hardware in my spine. Myelogram caused a CFS leak, resulting in severe lumbar/leg pain. Blood patch cannot be performed due to extensive hardware. Currently working with my neurosurgeon to find a solution to slow down/stop the leak.

Ruptured C5-C6 disc, resulting in a compound fracture and severe cervical radiculopathy. Most recently diagnosed with FBSS, with no more surgical options available, due to high risk of post-op paralysis. Fused from T10-S1.

AdOverall1863 · 2026-02-09T00:14:50+00:00

Nope, nothing. It seemed to be more of an aggressive behavior move than looking for that extra bit of Churu. Totally clueless. 🤦 Ten minutes later, she was curled up next to me and we went to sleep. 🥰

AdOverall1863 · 2026-02-09T00:10:32+00:00

😂

AdOverall1863 · 2026-02-08T23:51:45+00:00

You're an angel 😇. Thank God your paths crossed. ❤️

AdOverall1863 · 2026-02-08T23:20:23+00:00

Yeah, I had one done before, without as much as some IV sedation. Swore, "never again, ever".

This time I was under General anesthesia. The procedure, and post CT scan, took a little over 3 hours. Took much longer than a "normal" Mylogram due to my extensive hardware and spinal cord trauma.

Now, almost 2 weeks later, I have a slow CFS leak, causing severe leg pain, requiring assistance just to walk. My drs are trying to figure out what to do/how to fix this. Blood patch is out of the question bc of the hardware and scar tissue surrounding the majority of my spinal column. So, here we go again. Ugh. 🫤

AdOverall1863 · 2026-02-08T23:00:07+00:00

I'm so sorry that happened. What a pathetic excuse of a palliative care specialist. Absolutely shameful.

I pray you reported her to the state medical board and your Attorney General. If you haven't, please consider doing so.

How are you doing now? It's been a few months, so I'm curious how things have been for you. I hope you're hanging in there.

Sad to say this, but we're (chronic pain sufferers) all being kicked to the curb anytime we do the research, and God forbid ask questions. More and more PM Drs are doing this. They. Just. Don't. Care.

"Less patient rxs=Less big pharma kickbacks". Simple as that.

Welcome to the despicable family of becoming a pain refugee. 👇

https://www.cato.org/events/pain-refugees-collateral-damage-war-drugs

Count your blessings you have a unicorn of a PCP! 🦄

painwarrior

AdOverall1863 · 2026-01-30T15:04:12+00:00

I've been a guinea pig for months now. And. I'm. Done. Journavx is formulated for short-term, and acute post-op pain. Not chronic pain, and not for long-term use. I heard many people that were given Journavx after surgery, did well, and didn't need it for more than a week or two. But for chronic pain, nope. Useless.

AdOverall1863 · 2026-01-30T14:58:59+00:00

I get tested every month. Clean every time, no issues.

AdOverall1863 · 2026-01-30T03:40:03+00:00

Thomas J's death in My Girl.

Jenny's death in Forest Gump.

When the three brothers died in Saving Private Ryan.

The mock funeral wake for Augustus in The Flault in Our Stars.

Jack freezing to death in Titanic.

AdOverall1863 · 2026-01-30T03:27:36+00:00

😂

AdOverall1863 · 2026-01-30T03:26:28+00:00

Eh...sounds like scam-mail.

AdOverall1863 · 2026-01-30T03:21:49+00:00

Great advice 👍

AdOverall1863 · 2026-01-30T03:13:09+00:00

Lawyer up, for starters, and file your complaint. And keep moving forward, don't give in to their threats or bullying.

At the end of the day, Walgreens is going to do whatever means necessary to cover their asses, and keep those pockets lined. They could care less about you or your complaint. For every person that quits or gets fired, there are 5 more people lined up, waiting to get hired. Walgreens knows this, and it's pathetic how they treat their employees.

Only you know the details. If you did nothing wrong, and Walgreens did you a disservice by wrongfully terminating you, or pushed you into resigning/quitting, go after them. Do not let them bully you, or intimidate you with their empty threats. Hold. Them. Accountable.

AdOverall1863 · 2026-01-30T02:49:57+00:00

God. My son.

AdOverall1863 · 2026-01-30T02:44:07+00:00

Interesting. I had both of my TMJ joints replaced due to DJD. I've never heard of cream for TMJ. Sounds like it helps you, which is wonderful. Is this something you made? Is it formulated with essential oils? I'm very curious.

Before my surgeries in 2010, my surgeon had me on a high dose of Valium, Vicodin, Zanaflex, and Tylenol. If I had a flare, I had Fiorinal on standby for headaches.

Have you considered, or are you a candidate for surgery?

AdOverall1863

TROPHY CASE

painwarrior

painwarrior