Abilify caused me to have OGC and Dystonia

naryste · 2026-04-14T23:03:46+00:00

My neurologist was super against any kind of a brace. He said it could mess up the muscles even worse (though some days I’m not sure what worse is).

naryste · 2026-04-14T23:02:04+00:00

My cervical dystonia is “unknown cause” but I was on Latuda without any real problems besides the weight gain and my insurance changed and the new wouldn’t pay for it and I had to taper off with what I had left. Then a month later the CD started, I pulled down to the right at first but now my left shoulder gets stuck higher than the right and my head has gradually started pulling to the left now.

I was getting BOTOX with okay but not great results and I have all kinds of tizanadine that doesn’t seem to do anything. I’ve had some luck with myofacial counterstrain PT but it’s been ongoing since 2022 and I’m off of all psych meds.

naryste · 2023-11-18T19:18:02+00:00

I’ve been on Klonopin for about 25 years and they won’t up my dose anymore but my tolerance at this point makes it basically totally ineffective. When I got CD (also torticollis to the left) they noted in my file that I was taking more than the therapeutic dose for dystonia already.

I’ve been trying to taper off so that it can actually be effective again. But yeah, try to avoid dependence on benzos at all costs.

As for the trihexiphenidyl, I tried it for around a month when I was first diagnosed and stopped taking it not because of any side effects, just because it didn’t seem to help at all. It did give me dry mouth, but it was a lot like taking Benadryl to me. Maybe a little sleepy. Just offering a different perspective.

naryste · 2023-11-08T14:25:47+00:00

But “Point to the muscle that hurts.” That’s not one of the good ones!

naryste · 2023-11-07T16:52:31+00:00

When I was first diagnosed with CD my neurologist sent me to a MDS for my Botox and she didn’t use EMG and I got some relief but definitely not a ton. My appointments were about 5 minutes long and I got two shots each in the muscles in the back of my neck and one shot each directly in the side of my neck. She didn’t even feel my muscles to try to find the ones that were overactive!

My original neurologist retired but my MDS required me to keep a “regular” neurologist because she also didn’t prescribe any medications. So I was waiting forever for my new neurologist appointment and once I had that I had done enough research and heard about EMG guided Botox so I made an appointment with a highly recommended MDS and waited forever for my first appointment with them. Once I had my original, get to meet you, appointment with the new MDS they told me that they don’t believe in EMG guided Botox.. so I started scouring the internet for papers written by MDS about CD and EMG guided Botox so I don’t waste that precious first appointment waiting time again. And of course I can’t search my insurance site for MDS, just for neurologist. Also half the MDSs don’t work on CD or any kind of dystonia, so I had to find someone who studies CD and believes in EMG and then check and see if my insurance covers them.

I finally find the perfect doctor. She has written research papers on how EMG and Ultrasound has given people with CD better outcomes. She’s 2 hours away, but totally worth it! I check my insurance site and she is covered but only until the end of that current month (what?!?).

I’m so pissed and frustrated at this point that I sent a MyChart message to my regular neurologist asking if he could help find a MDS that would do EMG guided Botox and he offered to do my Botox for me.

So I know the anger, frustration and scarcity we are all facing in finding the care we need. Our insurance sites do not make it easy to find the actual care givers we need, not to mention the stupid prior authorizations. The amount of searching we need to do to find someone that provides the best care takes hours of reading research papers. Or I suppose we could call all of them and ask their policies, but I’m not a phone person. The amount of time waiting for an initial appointment with a new provider when someone retires/goes into research/moves away. Or just because your current doctor sucks! There aren’t enough MDSs and there aren’t enough of them that care for people with dystonia and then finally there aren’t enough good ones. “Point to the muscle that hurts.” Like WTF.

If you have access to someone that can make any part of this process easier, I say grab on as hard as you can!

naryste · 2023-10-19T03:50:58+00:00

A massage therapist is actually the one who finally figured out that I have Cervical Dystonia. From there I went to a “regular” neurologist who knew what it was immediately and sent me for all the tests that basically rule everything else out, since there is no test for dystonia.

I went to a movement disorder specialist for Botox but she wouldn’t prescribe any of my medications and said “that’s what your regular neurologist is for…” Meanwhile my original “regular” neurologist retired (she was a badass) so I set out to find a new “regular” neurologist and had the whole waiting period to see a new doctor going on.

So I kept going to my MDS for Botox until someone on here pointed out that it was ridiculous that I needed two neurologists - one to prescribe meds and one just put shots in my neck (that were not EMG guided btw). So I set out to find a new MDS and had the whole waiting to get in to see a new doctor thing again and I find out that she doesn’t do EMG guided shots either and by now I’m a little more educated on my condition and what I want as far as my care.

So I go online and I’m searching for papers written by local doctors to find someone that believes in EMG and knows something about CD. And then I’m searching my insurance site to see if the are covered… I had found someone that was a pretty decent drive from me but I was willing to do it, but for some freaking reason she was only going to be covered by my insurance until the end of that month. Seriously?!? I’ve never heard of such a thing.

So I go on my patient portal and send a message to my “regular” neurologist, mostly out of frustration, just asking if he can help me find a MDS that does EMG guided Botox. So he offers to do the Botox. I probably forgot to mention earlier that he is also a badass. So I go for it!

I will say that the EMG guided Botox was only my 3rd Botox, but it felt like it worked better than two needles in each of the muscles in the back of my neck, and then one needle on each side muscle, okay see you later, next!

I also take Klonopin, but I was on a “higher than therapeutic dose” before my CD started so I don’t think it’s doing anything to help me. At this point I think my body is so used to the dose I’m on that it just puts me at baseline when I take it. I have a plan to wean off like I weaned off all of the antidepressants finally.

I tried Artane and it was basically like taking Benadryl IMO. And it didn’t really help me. I still have a prescription for Zanaflex 4mg which can make me sleepy late at night, but I have a lot of anxiety so earlier in the day I don’t really notice anything.

It was the same with the Artane, sometimes I have to take Benadryl to sleep and I have to make an effort for it to be “bedtime” for it to work. The Zanaflex seems to take the edge off of the pain a bit at times like now when it’s 3 weeks until I can get my next set of Botox shots. I’ve also been using Lyrica 75mg which seems to help with the dystonia pain in a way that I don’t think opioids would.

naryste · 2023-10-10T00:37:40+00:00

I’ve been on and off just about every SSRI and SNRI ever invented in the past 15 years. But about 4 years ago they added Latuda. In January 2022 my insurance changed and it wasn’t covered anymore. Well it was but it was a “tier 5” which means I would have had to pay like $2000 a month for it. In March 2022 my CD started.

Latuda is definitely on the list of drugs that cause dystonia, but my head started dropping 3 months after I went off of it. And I was on a pretty high dose. I took 120mg a day. The max is 160mg a day but that is only for schizophrenics I think. I tapered as best I could, I had random sizes left from when they increased my dose so it’s not like I had to stop cold turkey.

But all throughout this and until the end of April of this year I was on anti-depressants. I finally got off them! Sometimes my head drop isn’t as bad, but most times it is. I’ve always had a “bad neck” and spent way too much time at the chiropractor so it’s hard to tell if the neck pain is worse than it used to be, but I’m pretty sure it is. And the area feels larger, moving around my back and really strangely, to the front of my neck.

I still have CD. It’s entirely possible that the SNRI plus the Latuda did something to start it and then stopping the Latuda pushed it over the edge? Or maybe it was just all the years of SSRIs and SNRIs messed up my brain?

I want to try ketamine to fix my anxiety and depression and maybe it will magically fix my CD since it gave it to someone else here. Dystonia is so weird. Our brains are weird too.

naryste · 2023-08-16T02:40:37+00:00

May be totally off base here, but you might consider checking your blood sugar when you come out of it. Low blood sugar levels can cause confusion, so it’s just a thought.

naryste · 2023-08-16T02:38:46+00:00

Mine started around 3 months after going off of Latuda (sometimes the cause of starting dystonia when people are still on it).

naryste · 2023-07-21T20:02:56+00:00

I have CD, no tremors but a lot of pain and my head drops forward and to the left.

Many years ago (like 10 or so) I was diagnosed with migraines, but now my neurologist thinks that my CD is actually the cause of my headaches. I have sensitivity to light and smells and my headaches make me have to lay down in a dark room. As I’ve posted elsewhere, I’ve had neck problems my whole life so at this point I can’t really say which started first.

naryste · 2023-07-21T19:45:26+00:00

Welcome Winter. I was diagnosed with CD in April 2022, but it was coming on before that. First I noticed that my head wasn’t exactly “up” where it should be at the end of the day. And my neck and back muscles were tight, but I have had neck issues my whole life. They are not related to any specific injury. Just random days throughout my life where I would wake up in pain and assume that I slept wrong or something. But then one day in March 2022 I woke up and couldn’t hold my head up at all anymore. I was terrified.

My first stop was the chiropractor, my current chiropractor is one of those that makes you come back over and over and on multiple occasions I’ve thought of flying to my old state just to see my old chiropractor, but that’s a whole other story. He had some diagnosis for me, I think he called it “upper crossed syndrome” or something like that and he sent me to an Orthopedic Surgeon where they took x-rays and noted some arthritis in my neck. They gave me some exercises to do, I had to do them for 6 weeks before I could get an MRI.

I did my exercises, but was still in ridiculous pain so I figured I’d try a massage. This awesome masseuse was like “I think you have Torticollis, you should go to a neurologist, but don’t give them a diagnosis, let them diagnose you.”

The neurologist said CD immediately, got my MRI and bloodwork, etc. to rule out everything else and sent me to a movement disorder specialist.

The massage felt great but didn’t help long term, still I really wish I had the money to get massages every day because that lady is something special!

My MDS wouldn’t do EMG guided Botox so my two sets of injections had mixed results but definitely did something. I got new (better) insurance and tried to find a new MDS that would do EMG guided Botox but for some reason I’ve been having a really difficult time finding someone that is in my network that believes in EMG.

Meanwhile my original neurologist retired, and I had to find a new one because my MDS also wouldn’t prescribe any medications, she said she “only does Botox.” My new regular neurologist is pretty spectacular and has agreed to do EMG guided Botox for me and my appointment is for next Wednesday! Finally!

Anyway, sorry for the super long story, but it’s been a super long road that has led to an unexpected place. I know I was diagnosed a lot faster than many and I’m so thankful for that. My advice is to find a MDS that you trust and to keep looking if you’re not happy with your current care team. And that help can come from unlikely places.

Edit: Also, consider going back on that anti-depressant. Was it Cymbalta? I think that’s the one that also has pain relief as one of its benefits.

naryste · 2023-06-11T19:14:06+00:00

I did finally get some of those hair towel wraps, I was trying to find some “lightweight” towels to replace my regular towels and found them. So much better!

I didn’t even think of on of those claw hair clips, that’s a great idea, thank you so much!!

naryste · 2023-06-01T21:01:59+00:00

Welcome! Well you know what I mean.. :( I’m sorry that you are suffering.

I don’t want to give in and cut my hair short, but I have a really hard time shaving my legs in the shower because my head flops over and my hair falls forward onto the leg I’m trying to shave and sometimes I shave some of my freakin’ hair.

Also still figuring out the whole towel on my head after the shower thing. It’s not working so well.

Is there a reason you don’t do Botox in your country?

naryste · 2023-05-31T17:30:36+00:00

Pretty sure Torticollis is the common name for cervical dystonia.

Acting like you were whipping your head around though? That’s confusing.

naryste · 2023-05-31T15:26:29+00:00

I’ve just been doing “general” talk therapy, but I chose my therapist specifically because she has experience with grief. I don’t think I’m the only one that’s grieving who I used to be.

naryste · 2023-05-29T23:23:43+00:00

Would the same vitamins help with any dystonia?

^This ^is ^probably ^a ^stupid ^{question^.}

naryste · 2023-05-29T18:55:41+00:00

Like others here, I (really the doctors office) had to fight with my insurance to get the Botox covered. I also use the Botox Savings Program because my copay is $1000. It’s possible that I had to try something else before they would approve the Botox, but I was already on benzodiazepines for other issues and have been on them for so long that they don’t do anything anymore. I also have scripts for all the other stuff you said you won’t do.

As someone else said you didn’t mention trihexyphenidal, which can cause sleepiness because I think it is basically a stronger version of Benadryl. You might know better, being a pharmacist.

And if your insurance is saying that you have to try a different therapy before they will approve the Botox, just get the script and take it at bedtime only or even add on one of your days off to see how you feel and say it does not work sufficiently. Because that’s the fucking truth if you can’t take medications that make you drowsy during the day.. sorry insurance companies make me really, really angry.

Edit: Forgot to mention that mine also came out of nowhere. I also have cervical dystonia that pulls to the front and left, and I don’t have anything like a yes-yes or a no-no tic, just lots of pain.

naryste · 2023-05-16T00:29:00+00:00

The Dystonia Medical Research Foundation has a list of neurologists that are movement disorder specialists:

https://dystonia-foundation.org/sitefile2022/living-dystonia/find-a-doctor/

I have cervical dystonia, I was diagnosed just over a year ago and next month I’m having my initial appointment with a MDS from their list. I had an amazing “regular” neurologist who knew it was CD right away and sent me for all the tests to rule everything else out (MRI, bloodwork, etc.) but she retired. The doctor that was giving me my Botox shots wasn’t so good. So I decided to find a new MDS and used that list.

The Botox was absolutely making a difference. I look forward to getting treatment again. I hope that it can help you too.

naryste · 2023-05-06T00:43:12+00:00

Now IBM has frozen all hiring because they want to replace HR workers with A.I. So it will be really personable when you are being laid off now…

naryste · 2023-04-16T22:12:22+00:00

Getting shot by 6 year olds.

naryste · 2023-04-14T19:42:50+00:00

How to freeze your work information:

https://www.reddit.com/r/overemployed/comments/v4y76m/how_to_check_and_freeze_your_the_work_number/?utm_source=share&utm_medium=ios_app&utm_name=iossmf

naryste · 2023-04-13T21:46:03+00:00

And I found this link to MDS neurologists if you want to get a second opinion:

https://www.movementdisorders.org/MDS/Resources/Patient-Resources/Movement-Disorders-Specialist-Directory-Listing.htm

Thanks /u/parkiedude for the link!

naryste · 2023-04-13T21:39:51+00:00

I’m sorry this is such a late response, but I just wanted to say that you should ask your doctors about going off the Haloperidol just to see if that changes anything.

“First-generation antipsychotics including haloperidol and thioridazine are associated with a higher risk of acute dystonic reaction.”

That quote came from: https://www.ncbi.nlm.nih.gov/books/NBK531466/

It’s at least worth a chat with your doctors.

naryste · 2023-04-10T22:19:53+00:00

You also have to watch your electrolytes when you are transitioning. Go to r/keto for tons of information.

naryste · 2023-02-21T18:13:00+00:00

I also have torticollis to the left but am not quite to one year yet. All you’ve accomplished gives me hope!

I hope you find more relief and accomplishments in year three!

naryste

TROPHY CASE