what to do??

[higgsbosom]

So I have a dilemma. I've been on C/L, and it's been causing some dyskinesia/twitches/dystonia, whatever it is. Doc added amantadine, which I've been on for a week now. Hasn't done a thing. Today, I tried taking nothing, and no dyskinesia/twitches/dystonia, and I don't feel much different than I do when on the meds. Anyone else experience this?

[park_bear]

Completely quitting C/L suddenly can result in neuroleptic malignant syndrome which is something you do not want to get. So I would resume my normal dosage for now. If you want to get off of it, tapering the dose would be in order.

With that said, did C/L ever do anything for you? It is strictly for symptom relief, so if you're not getting any benefit there's no reason to take it, aside from the foregoing.

Also it would be useful for us to know how much you're taking and how long you've been taking it.

[higgsbosom in reply to park_bear]

C/L never did much for me. I never took it religiously, meaning 3x/day, until recently, which has been a couple of months, maybe. I was diagnosed 5 1/2 years ago, and took it like once a day, for the most part, for a long time.

[park_bear in reply to higgsbosom]

Since you're not getting any significant benefit and it is causing significant adverse effects I would just taper off, or back to the one dose per day. With the short duration of use and relatively low dose you are much less likely to get the neuroleptic malignant syndrome. Nonetheless I would taper instead of quitting all at once.

[higgsbosom in reply to park_bear]

The problem is I get the adverse effects even with one a day.

[park_bear in reply to higgsbosom]

Does one a day do anything for you?

[higgsbosom in reply to park_bear]

Not really

[higgsbosom in reply to higgsbosom]

The only thing so far that helps my dyskinesia/whatever it is is lorazepam and gummies

[park_bear in reply to higgsbosom]

There is especially no point in continuing if you have to take diazepam and gummies to counter adverse effects of something that is not helping you to begin with.

[docjleonard55 in reply to higgsbosom]

I was taking C/L three times a day also, and didn't think t was helping. SO, I tapered off with the OK of my MD. I was OK for 6 months, and then suddenly had a crisis. For a week I had whole body tremors, had terrible anxiety, and fell out of bed twice with RBD. I got back on it and asked for C/L ER from my doctor. Even with taking that only twice a day, it balanced me out, and without the nausea caused by regular C/L. Maybe worth a try?

[higgsbosom in reply to docjleonard55]

You mean stop for a long time? You stopped for six months? Did you take anything at all?

[docjleonard55]

No, I meant to try the C/L ER. Also I took Amantadine during those 6 months, It was the first med I was given and helps with the stiffness.

[higgsbosom in reply to docjleonard55]

Oh, I misunderstood. I'm already taking C/L ER