u/19thCenturyHistory

(Don't think this violates the rules)

This is a followup to my post expressing downright horror about the possibility of NDT being discontinued. There is apparently a bill introduced that would help protect those taking it, as well as a petition to sign. I've contacte my rep and this is what I wrote:

I urge you to please vote yes on H.R.8630 - PEAT Act of 2026, protecting access to natural dessicated thyroid. I've taken Armour Thyroid for 6 years, after my hypothyroidism tanked my mental health and synthetic options failed, after several attempts. For some of us levothyroxine and liothyronine just don't work and natural desiccated thyroid does. There's a misconception that people want to take this because it's "natural." I did not want to take pig thyroid, nor did I want to pay the high price for it, but I needed it. I would love to be able to take the synthetic thyroid meds, but they just didn't work. I cannot express to you enough how much this improved my quality of life.

Here's how to find your rep: https://www.house.gov/representatives/find-your-representative

Here's the bill: https://www.congress.gov/bill/119th-congress/house-bill/8630/text

Petition: https://c.org/PDzyxGqMd9

Long story short-had Botox for head neck pain before and it worked. Took a break to see if something else would help by itself, and it didn't. Started Botox again and I am on third round this time (the first time I had it, the first round worked), which gave only slight relief, but also gave me weird sensations like my muscles were twitching/shifting. Now some of the problem areas are inflamed. Anyone have anything similar? I'm reading it could be too low of a dose, but have a call into my doctor, who I do trust, but this is crazy.

Long long story short:

Nerve pain and inflammation in neck, head, shoulder and back. Unable to lift my arms or move without getting headaches, dizzyness and throwing up. It's been 4 years and I have the upper body strength of an 80-year-old.

I did every procedure possible and ended up with Botox, which helped me keep my head up when things got really bad. I then got a spinal cord stimulator and when we finally got the right settings, I was free. I had my life back. Then I wanted to see if I could go without the Botox. I could just get it again if I needed to, right? Welp, it's looking like not so much. It's only day 9, but it feels different this time. My head and neck are really irritated. It's like I'm going backwards.

Yes, I know it's early, but I have chronic pain ptsd from having procedure not work and this time things are taking longer and feeling worse. I'm so anxious.

The point of this rant is that I had relief and let it go...and the self-hatred is intense. And I'm watching everyone else go about their lives. It's summer number 5 that I'll be stuck. And the self-hatred.... I feel like an a**hole. I had relief and then it was gone. I just needed to type that "out loud".

-Fear and loathing in NJ

Thinking of you all, and hoping your day is sucking less.

How many days does/ has Botox taken to work for you? And what did it feel like after the treatment, before it started to work?

Anyone get a weird sensation? Kind of like muscles shifting. This was mild the first two rounds but now it's super intense and making my head feel compressed. I've been through a lot and I'm terrified it's going to make it worse. It's only been 5 days, so I need to give time. No horror stories please.

TL;DR: Has anyone experienced gradual increase in symptoms, then relief?

I have migraines/tension headaches, neck inflammation and dizzyness so bad that I'm disabled. In the fall I had relief with a spinal cord stimulator and Botox. I decided to see if the stimulator would work without the Botox. So I could just get it again and have the relief back, right?

I'm (only) four days in to the third round, but things seem to gradually be getting worse and the sensations that I get after a treatment are way more pronounced. I know some people get worse before they get better, but the thing that is concerning is the gradual part.

Anyone have the same experience? I'm so traumatized from things getting worse or not working over the years that I'm catastrophizing. I also hate myself so much for letting my relief go. Who the f*** does that??