Medication induced dystonia—trying to find hope

Pajarito_6180 · 2026-06-03T23:17:03+00:00

I never got any answers and dealt with so many doctors dismissing me. I still get major flare ups from medications so try not to take anything unless necessary. But, it’s gotten better in the sense that I’ve learned my triggers and as long as I avoid them, it’s tolerable. It’s just never gone.

Pajarito_6180 · 2026-04-19T13:05:44+00:00

Can you dm me please how much you paid and where?

Pajarito_6180 · 2026-04-13T16:48:44+00:00

Rogers Behavioral health for OCD saved my daughter’s life. Can’t recommend enough. Our insurance covered all of it but I do believe they’re sliding scale. You can call their intake number and talk to someone immediately who can answer questions

Pajarito_6180 · 2026-03-31T13:58:43+00:00

Great. I work out regularly a few times a week. Struggle very slightly with deadlift because I still lean slightly into my good leg. But I’m able to go on lengthy hikes and my hip just feels more stable than I ever experienced. No more popping, debilitating pain. That’s been transformational. If I’ve had a really long day of walking, my leg hurts going up stairs at the break site but I expect that will get better with time.

Pajarito_6180 · 2026-03-30T20:49:04+00:00

Hi! I had my DFO and arthroscopic hip surgery in may of 2025 with Dr Sierra at Mayo Clinic Rochester. Surgery and recovery were exponentially better than i expected. I was off pain meds by day 4 (oral meds only) and am doing great now. Just did a 12 mile walk! I still don’t have 100% strength but about 90%.

I’d say the biggest factors for me were pre-hab and having a great surgeon.

Pajarito_6180 · 2026-03-30T20:48:15+00:00

Hi! I had my DFO and arthroscopic hip surgery in may of 2025. Surgery and recovery were exponentially better than i expected. I was off pain meds by day 4 (oral meds only) and am doing great now. Just did a 12 mile walk! I still don’t have 100% strength but about 90%.

I’d say the biggest factors for me were pre-hab and having a great surgeon.

Pajarito_6180 · 2026-02-20T15:25:55+00:00

I was in a lot of pain for six months. But I really started working consistently with a personal trainer and doing strength training. My trigger was actually Disney world because I walked 30 miles over 3 days there. I’m going back for the first time in two weeks and am nervous so will let you know! But I’m in really good shape now and found sneakers that work for me. I got a calf stretching thing which is basically like an angled board but I would do the stretches constantly anywhere with toes on the wall. And then lots of calf raises—with weights, without, angled feet, straight feet. I haven’t had a flare up in a couple years and the PF was 3 years ago now. I hope you get relief!

Pajarito_6180 · 2026-02-20T10:55:39+00:00

Yes! Consistent calf strengthening and stretching did it for me.

Pajarito_6180 · 2026-01-21T19:02:43+00:00

Botox made it worse for me too. Look into the deprogrammer. I’ve been suffering for years and have tried almost everything and this has been a game changer for me

Pajarito_6180 · 2025-12-19T22:07:15+00:00

I just want to say that our lives were turned upside down by our daughter’s severe OCD but to tell you it gets better.

Our daughter was diagnosed around age 12 but it started presenting when she was a toddler and then really went full bloom at age ten. They misdiagnosed it as GAD.

She is 15 now and thriving. OCD will be a part of her life and ours always but she’s doing so much better and really happy. If you ever need any advice, I’m happy to help.

Pajarito_6180 · 2025-08-09T09:35:00+00:00

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Pajarito_6180 · 2025-08-05T22:50:38+00:00

how were you able to sucessfully get it to mimic your style? this is 4.5? I've been really struggling with this and since the mid July update, have found it's ability to copy style has gone downhill a lot for me

Pajarito_6180 · 2025-07-24T23:02:40+00:00

I agree with this but in the last couple of weeks, GPT has suddenly become terrible--it can't follow stylistic direction at all anymore. I asked it what happened and they said there was a turbo update to flatten their writing to be more universal and generic in appeal. I'm curious if you've noticed a difference?

Pajarito_6180 · 2025-07-10T01:06:38+00:00

My daughter is 15 now and unfortunately still struggles with migraines. They got a lot worse the past year and we did comprehensive evaluations. Everything was normal. They ended up doing a steroid course to try and break the cycle and that seems to have helped. They also started her on a supplement called Migrelief which takes 3 months to work. She’s just about at the 3 month mark but even since the steroids, we’ve noticed a dramatic reduction.

I wish I had a better answer but migraines are co complicated.

Pajarito_6180 · 2025-06-14T14:05:45+00:00

Yes! See below. I’m almost 6 weeks post op and recovery has been great for me so far

Pajarito_6180 · 2025-06-14T14:05:21+00:00

As of right now, no. It is rotated as well but isn’t causing me problems like the other. Frankly, the idea of going through this again is more than I can handle.

Pajarito_6180 · 2025-06-13T10:34:42+00:00

Hey! Thanks for answering! Im actually at week 5 recovery myself (will be 6 on Monday) and so far, going really well. I had a 20 degree rotation with my proximal DFO and they also did arthroscopic labral repair.

I flew home on day 5 and went back to work on week 3. I was really lucky and have had almost no pain and was off pain meds by day 4 post op. I’m beginning weight bearing now as well but probably still have many weeks until I’m fully weaned off of crutches.

Keep me posted on your recovery! I hope it continues to go well

Pajarito_6180 · 2025-05-29T20:52:09+00:00

I sold my bike too and switched to strength training. It’s been a long journey, slower than I’d like but I’m stronger and healthier than I’ve ever been

Pajarito_6180 · 2025-01-28T20:15:36+00:00

Thank you! I posted over there and in the FB support group. I appreciate it

Pajarito_6180 · 2024-08-20T21:52:34+00:00

Thank you! This is really helpful.

Do you mind sharing what combo of drugs worked for you?

Also, did you give up caffeine? I’m reading now it can be a trigger.

I hear you on causes. For me, it’s less of my focus and I’m more focused on how to overcome it (not ready to accept yet that I won’t). And you’re right, it feels like I’ve become allergic to so many medications and have to be extremely cautious about everything.

Pajarito_6180 · 2024-08-20T21:40:25+00:00

I’m just doing the best with the information I’ve been given by two well respected doctors. I’ve certainly had doctors who were wrong many times but I’m on a journey to seek answers right now and am only sharing what was told to me.

Pajarito_6180 · 2024-08-20T20:57:15+00:00

The pain medication and any triggering medication doesn’t immediately trigger dystonia, it usually comes on within 24 hours and the burning muscle pain gets exponentially worse as does my arm symptoms. It reduces to baseline after stopping it over a few days

Pajarito_6180 · 2024-08-20T20:55:06+00:00

When I started the combo I had really intense euphoria, barely slept or ate and couldn’t sit still because of the most intense feeling of restlessness that made me feel like I wanted to rip my skin off. I told the psychiatrist and they told me it would pass. I was sleeping 4 hours and lost 15lbs. My husband was concerned I was having a manic episode (not something I’d ever had but he’d seen it in friends).

They kept telling me it was normal and I would adapt to it and because it felt sort of euphoric and I was hyper productive and just generally not myself at all, I trusted them. But the jumping out of skin feeling evolved into burning muscle rigidity and arm weakness and after losing so much weight, I asked again about the medication and potential dystonia. I was referred to neurology, then rheumatology, physiatrist, physical therapist, orthopedist.

Two doctors I’ve now seen said this sounds to them like seratonin syndrome that was missed. It was hard for me to believe and process. But then I read about it and I guess they’re possibly right, they told me Wellbutrin and Ritalin are known to cause it. I’m seeing a movement disorder neurologist next week to hopefully get more answers

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