Just diagnosed with TD

I just got home from seeing my pdoc. She diagnosed me with tardive dyskinesia. I have mouth movements that I came to realize were abnormal when someone on the boards posted about their own experience. I also learned that what I thought were tremors in my neck are from the TD, as are some of the grasping motions in my hands that I also attributed to tremors. My pdoc is reducing my Saphris by half and is starting me on benzotropine. She wants to start me on another TD med, but she wants clearance from my movement specialist to treat me first.

For those of you who have this, how bad is yours? How bad will it get? Does anyone know what to expect from this? I’ve tried reading things online, but I’ve only found information on how one gets it, not much on how it will progress or if it will progress.


I think @cbbrown might have it. Maybe she’ll have some insight when she comes online.

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For what it’s worth vitamin b6 helps in addition to whatever your doctor prescribes.


I got diagnosed with TD about two to three years ago. I didn’t have the mouth movements but my hands tremor. Its lessened since getting off haldol.

But when I was first diagnosed with it my pdoc at the time refused to lower the doses of the antipsychotics. He just put me on benzthrophine. It doesn’t help.

I also heard from one of my old doctor’s nurse high lithium levels can cause tremors but mine were always low or a little elevated at times.

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My neck movements started when the lithium was added.

Thank you, @everhopeful. I will go get some B6.


@cbbrown Do you still take APs? I want to get off Saphris. We are reducing it, but I want off of it. I just don’t know which is worse - the sza or the progression of TD. I don’t want to keep taking Saphris only to have the TD spiral out of control and regret staying on the Saprhis.

WIth my neck tremors as bad as they are right now, I wouldn’t hire me for a job because I look like I’m so messed up (I know people aren’t supposed to discriminate, but they do), especially since I have to give a reason as to why I left my last two companies so abruptly. That reason was medical. It won’t look good, even though I won’t give specifics. I had a really good plan in place for getting back to work. I feel kind of hopeless right now. I am scared.

When you say you have neck tremors, I can help but think you might be experiencing a mild dystonic reaction. If that’s the case, Benedryl or a generic equivalent can help. My personal experience is that it’s better to take 50 mg in the morning and then take it again before bed or whenever you take your night meds. If you try to take it as a PRN after the tremors occur, sometimes it won’t work for hours or even at all, even when you increase the dose. When I had a bad systemic reactions and the oral Benedryl wouldn’t work, I would end up in the ER for a shot of it.
Benedryl is a legal over the counter anti-histamine. You can get it anywhere.
But I’m not a doctor, so it’s probably best to talk to your doctor before you try anything

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Thank you, @eighteyedspy23. It is definitely worse in the evening. I know that I am allowed to take Benadryl because I take it for migraines every eight hours for three days in a row almost every week. I will give that a try tomorrow. :slightly_smiling_face:

Do you know if it’s tardive dyskinesia or tardive dystonia? Just because I always thought benztropine can make established tardive dyskinesia worse.

I have mild td and they give me benztropine. They’re pretty insistent that I take it even though I’ve read on the internet that it doesn’t work for td.

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I think benzotropine helps with stiffness but 99% sure it makes the movements of TDworse. Maybe it’s a balancing act?

i have to echo @anon20613941, cogentin and similar meds can have some unwanted effects for tardive. i can’t remember exactly what, maybe making something worse but i really dont know so take that with a grain of salt.

saphris is known for a high incidence of extrapyramidal symptoms, but cutting the dose in half may actually make the issue worse, at least in the short term. so don’t be afraid if the movements get worse, they may do that as the antipsychotics can sometimed mask td symptoms.

i think i have undiagnosed td, its a major reason i cut my abilify dose in half. and it has gotten better some, so there is hope for you too! though i still suffer from some involuntary movements in my mouth and jaw.

i hope you a good recovery! hopefully this thing sorts itself out for you!


I think most people who go through the med carousel wind up having a run in with TD… And I think most get relief from it.

If you’re diagnosed then hopefully they’re planning to move forward with treatment.

Thank you all. I feel better now. I will watch out for the benztropine.

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actually, your pdoc knows best when it comes to the cogentin, it can treat tardive dystonia which you may have, but can worsen tardive dyskinesia

She also wants to put me on some other med, but I don’t know the name of it. She wants approval from my movement specialist. I am thinking of going off the Saphris altogether, but I am scared to. My paranoia was really bad off of it. Have any of you had success on clozapine?

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Do Topamax, Latuda, Buspirone, or Diazepam contribute to it?

I have violently coarse tremors in my head, neck, and right arm and hand when I go to do my hair in the morning and in the afternoon. My pdoc prescribed benztropine for it and it works somewhat well. Could this be TD? My pdoc called these “intention tremors”. Are they related to TD?

When you say you have neck tremors, are they when you are at rest when they occur or is it when you go to do something that they occur? In other words, are they resting tremors or intention tremors?