7 Percent

Tremors and TD are different. Tremor is light shaking TD is total involuntary movements.

Thanks, Guiness.
This is what I was thinking, but I can be wrong anytime.
I appreciate your input.


WC

Thanks, Lefty!

You and others have suggested this appeal to the drug company. I did call her last night to fill her in on suggestions.

Unfortunately, her TD has not gone away w/o the med. The only other remedy she was offered was to go back on the med.

I appreciate your input.


WC

Thanks, Jennifer!
Yes, TD is truly sad.

Thanks for mentioning your success with patient assistance programs.

I do intend to always be good friend; so thank you!
This friend is one of the most compassionate people I know.
This is a nightmare for her.


WC

For anyone wondering some of what TD looks like, here is a video:

https://breggin.com/antipsychotic-dr...ter/td-videos/

There are other videos available online.
Search: Tardive Dyskinesia video


WC

I try not to fear meds. If we all feared getting this and that we'd never try anything. I know that's part of the reason people never go on them or quit, though. Some fears are more justified than others. I'll admit that I would be quite hesitant to go back on a few medications I've taken in the past, but haven't completely ruled out some others I have taken and had stopped. Sometimes a second try on a medication is surprisingly better than the first try. Though sometimes not.

What I ask myself is "What was worse, the worst of my illness or side effects from this or that?" The answer is my illness, by far. Of course I've never had TD, but I keep that fact in mind --that I've never had TD and there is a large enough chance I won't to suit me.

Thanks so much BirdDancer.

I would like to add:

I have used neuroleptic meds off and on for 30 years and I have, so far, no TD. Each time, I have needed the various meds, I have had to make a choice as to whether or not to take the risk. Each time, I have chosen the med. I had, each time, made an informed choice.

Not everyone has had the luxury of an informed choice, unfortunately.

My friend had no idea this could happen to her, which feels like a huge betrayal to her. She is very upset with her pdoc, of course.

While I don't want to feed into fear, I do think it's important people have an opportunity for informed consent.

I feel more comfortable with my choices because I have gone forward with neuroleptics with informed consent.


WC

I just watched the video you posted. I had no idea it was so awful. I did not realize the involuntary movements are so continual.
I understand the need for medication but full disclosure of side effects is very important too. We all deserve to make a fully informed decision (when able).
I truly feel for your friend. I am just learning through this thread and wish I had advice/info to offer.

I have fought ap's for this exact reason ... but nothing was helping the depression so on abilify ... my pdoc is going up very slowly just for this reason ... every time I get a muscle twitch or shake I almost panic ... but so far ok ... but it is a real concern ...

they (pharma) make millions (billions) off us and I guess they will one day have a pill for td ... because they are creating a market for it ... just needs those numbers of patients to be cost effective ...

I do wonder if there was a pill to end all diseases and maladies would they ever tell us ... I say no ... hate to be so cynical ... but am I right ...

i sometimes wonder if i should see about a slow dosage reduction, maybe one day a transition off...if not off psych drugs completely, then off onto less toxic options, even if that leaves me with more "symptoms." thing is...

these drugs are -very- widely used in foster homes, juvenile facilities, jails, prisons, nursing homes, and...of course..mental hospitals, public and private alike. and...

there's some research that shows that the lower status one is, the more likely one is to be prescribed neuroleptics, and then at higher doses, too. so, an affluent white man might end up on a low dose or none at all...an impoverished, non-white, disabled woman might end up on involuntary injections of Haldol at a high dose.

not that the drugs are evil or psych people are all out to other people, but...the tranquilizers are also used for Oppositional Defiant Disorder, severe personality disorders, and...in anaesthesia cocktails, to reduce nausea and make the sedatives and pain killers work better, at lower doses...

question for --me, myself, and I-- (LOL) is: do I want to be on such a drug/"medicine" indefinitely? and im kinda thinking...nah, not so much...

Maybe I’m strange but I find this conversation really interesting as opposed to scary. Knowledge is power.
I’ve seen so many patients with TD and non psych conditions.
I dunno. I don’t like the amount of diseases and meds I’m on. And I don’t like how unwell I am with no meds.
Anyhow I’ve decided to be content for this week. My alternatives ain’t pretty.

Thanks for contributing!
I also find this exchange interesting.

It's a reasonable way of handling things, one week at a time!
Thanks so much!

WC

I developed TD after being on the highest does and max frequency of Invega sustenna (the injection) , I was on it for 5 years till I started getting the facial movements. It was frustrating but my doctor noticed it fast, she was going to reduce the dose slowly but I ended up just going off it because I was scared of it becoming permanent. It took several months of being off it but it eventually went away

I watch almost half of the video.
I think I have some of these TD movements that I chalked up to restless leg syndrome. I have that at night some times and also at the theatre at times. IT is very uncomfortable and I just can't sit still.
Karen noticed it when we were at the jazz concert and I said I hope I did not bother her. She said no but she did notice it.
I never thought it could be TD. It only happens occasionally. Then again I get it when on the computer so long in the evenings. It comes and goes thank goodness.
bizi

Thanks, Wild Coyote!

I agree that far too often doctors give inadequate to no information about the medications they put patients on. Too often patients must take the initiative to learn about them themselves. It's a shame that often a pharmacist may be the first person that asks if there are questions. Often patients even forgo even that opportunity.