Pain

99fairies · Jan 31, 2018, 12:05 PM

I have my side effect meds but they aren't touching my dystonia. I don't know what else to do. I'm out of options. It seems like all AP's give me dystonia. So do I live with no AP, or do I go through this hell everyday?

Jan 31, 2018, 01:15 PM

Cannabis? I know its touchy with bipolar but you can get it without THC.

Wild Coyote · Jan 31, 2018, 01:16 PM

I am sorry you continue to suffer.

I, too, was awake with dystonia/myotonia in my feet/legs last night. Very painful stuff.

WC

99fairies · Jan 31, 2018, 01:22 PM

I'm considering going off all my meds and take natural Stuff. I can't take these side effects anymore.

Guiness187055 · Jan 31, 2018, 01:25 PM

I'm sorry you are in pain. There as to be something that works. Going off of meds is never a good idea.

Jan 31, 2018, 01:31 PM

Quote:

Originally Posted by 99fairies

I'm considering going off all my meds and take natural Stuff. I can't take these side effects anymore.

Take my opinion for what its worth but I think that is a really bad idea. Having seen a glimpse of your down days I sincerely hope there is another option.

99fairies · Jan 31, 2018, 02:31 PM

I called my pharmacist and he said I was on a very high of Geodon. He told me to reduce it and it should improve the dystonia.

Moreta · Jan 31, 2018, 03:05 PM

FDA limit on geodon is 160 mg. I take 280 mg. Used to take 320 mg. Tried lowering some more last year but got depressed, so 280 is where i stay.

~Christina · Jan 31, 2018, 03:22 PM

There comes a time when you have to decide if a medication is doing more harm than good.. the inability for you to aquire your side effect med seems to get worse and worse, how can that daily, monthly struggle and all it’s stress inducing really help you ?

Sometimes less is indeed more.. is your Pdoc willing to really sit down and discuss your whole treatment plan one by one? Often meds get layered on and soon it’s hard to see what dose is good and what is bad. My heart breaks for you, you are going through pure hell most days.

99fairies · Jan 31, 2018, 03:42 PM

I'm considering The oil with no THC in it. I freak out on regular weed, but without the THC I think it's a good idea. Thanks SadGirl for the advice.

Jan 31, 2018, 03:51 PM

Quote:

Originally Posted by 99fairies

I'm considering The oil with no THC in it. I freak out on regular weed, but without the THC I think it's a good idea. Thanks SadGirl for the advice.

CBD oil is used for so much. I use it for anxiety. It doesn't get me high at all.

99fairies · Jan 31, 2018, 04:04 PM

I'll bring it up with my Pdoc and see if I can get a rx.

99fairies · Jan 31, 2018, 07:54 PM

I'm skipping my geodon tonight to see if that takes care of this hell.

99fairies · Feb 01, 2018, 01:51 AM

No eating, no sleeping. Gotta get rid if this pain soon. It's not a pretty picture when I cant sleep.

99fairies · Feb 01, 2018, 05:59 AM

It's almost 4 am here. I have not been able to get any sleep with this f*cking pain.

99fairies · Feb 01, 2018, 06:03 AM

No point in fighting it anymore, I'm gonna go make some coffee and just start my day now.

UpDownAround · Feb 01, 2018, 08:47 AM

I'm with Christina; you need to have your pdoc look at your whole regimen and hear about the side effects. It sounds like a different approach is warranted. I don't have a lot of faith in natural remedies. Some do work and become accepted medicines, but I assume you mean ones that are alternatives to accepted medicines.

99fairies · Feb 01, 2018, 11:39 AM

I have talked to my pdoc and therapist about the dystonia. We thought it was from the invega, so I quit that and switched to clozapine, but we thought that was causing the pain, so now I'm on Geodon and I still have dystonia. Doc says I've tried every side effect med available. And it looks like all AP's give me dystonia, but without an AP I go bat shiit crazy.

Guiness187055 · Feb 01, 2018, 11:58 AM

What about trying typical AP's?

99fairies · Feb 01, 2018, 12:05 PM

Like what? give me some names of the meds you're talking about.

Guiness187055 · Feb 01, 2018, 12:48 PM

loxapine, thorazine, haldol,Navane

99fairies · Feb 01, 2018, 04:55 PM

The only one I recognize is the haldol and it was brutal for my back and neck pain. It seems like the older the drug, the higher risk for it causing dystonia. Just my uneducated guess though.

Wild Coyote · Feb 01, 2018, 05:13 PM

Quote:

Originally Posted by 99fairies

The only one I recognize is the haldol and it was brutal for my back and neck pain. It seems like the older the drug, the higher risk for it causing dystonia. Just my uneducated guess though.

I've had the same response to low-dose Haldol. I did not respond that way to some other "typical APs (trilafon, moban). I have had problems with dystonia with a number of drugs though. I've just started a community thread on this because I am also having problems with dystonia (this time in my feet/legs, hands/arms). I hope to learn more through info sharing, assuming others have encountered dystonia in some form at some time.

I am sorry you suffer with this, too.

WC

99fairies · Feb 02, 2018, 12:22 AM

The pain tonight is at a 10. No idea what to do. Last time I had dystonia this bad, I became very self destructive. I don't want that to happen again. I just don't think I can go on like this.

Wild Coyote · Feb 02, 2018, 09:44 AM

(((((( fairies ))))))

I hope you can find relief.

WC

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