Crap

I've been on loxapine, a typical AP, for about 6 weeks now. I've had muscle rigidity since early on and confirmed EPS diagnosis for 2 or 3 weeks. I am on 1 mg of cogentin and valium at night. I'm supposed to be trying to get off klonopin at night and just take 5 mg of valium (or more with permission) but the valium doesn't work until too late and then it works too well and I sleep all day, making the cycle worse. The last few days I've had less valium but took klonopin. Last night I cut the klonopin dose in half and took the valium. I had a little more trouble falling asleep but nothing terrible.

My pdoc thinks that some of the EPS will go away if we can lower my Seroquel dose which we're planning to try in 3 weeks. She wants me on the dose I'm on for a little bit to make sure I'm done with most of my episode.

The rigidity was always worst in my jaws. They hurt so much until I got the valium and cogentin going. I've had some weird stuff going on that I thought might be oral movements but I couldn't tell; it was like I was grinding my teeth but my teeth didn't hurt. The last 2 nights I wore my bite guard and that helped some but just made it pretty obvious that my tongue and lips are moving all the time. So the EPS is there now too. I'll be taking all the klonopin and valium again and will try to find a way to get the full dose of valium in while still being functional but I'm so fed up.

This med works well but it appears that I can't go up on it any more and I can't increase my AD because they seem to be interacting and since I'm on an MAOI the interaction affects my blood pressure and could be dangerous if it is too much. Having nowhere to go with dosing on 2 meds, one of which is the AD I've been on for 6 years at the higher dose so presumably will need the higher dose once SAD season hits, is a problem. Having yet another med that works but can't be adjusted much is a huge problem. One benefit of this stuff is a huge range of doses and I apparently can't do that.

And the last time I had oral movements on a med they got worse until I was constantly sticking my tongue out and had to go off it. If this become visible or more sore from rubbing I'll have to reduce my dose and that means probably reducing my feeling better since I started really feeling better about 2 days after starting this dose.

I'm scared and I am sore and am so frustrated with meds. I have so few options left and EPS is a bigger risk with them so being more likely to get EPS, which we already knew before I got it on this drug since I've had it several times, and I really am tired of worrying about this but until we find a med that is safe I have to worry about it. I'm so tired of meds being hard.....I swallow the pills, it seems like that should take care of it.

Meds... sigh. If only we didn't need them!

I hope things get worked out for you, med-wise, soon.

you really seem to be struggling, I really feel for you and I wish I could make this go away ... I also "clenched" my teeth, not ground with the stiff jaws and probing tongue ... I got mine "after" I started tapering down geodon, it also ruined my sleep , .... I still have the tongue thing and my sleep still sucks going on 7 months now ... these meds are going to kill or cripple us all I swear ... I will be praying for you ... I wish you peace as best as you can find ...

You should read Anatomy Of An Epidemic

The scary thing is that I'm not sure there is "worked out". If I come off this the list of remaining meds has even more scary side effects and an equal or greater risk of EPS in some form. When akathesia risk is super high the med is out b/c I've had that badly several times, once landing me in an ER and once IP for a week. I'm heading for Clozaril if we don't find something soon. I should get another trial of Latuda but b/c my hospital doesn't let drs get samples without a specific patient and situation in mind getting the samples I need for a trial has turned out to be tough, tougher than my dr says it usually is because of changes in the drug rep who has little incentive to spend much time on my hospital since they don't allow the reps without all kinds of permissions and restrictions. (Which I greatly appreciate most of the time; I know my dr is deciding based on her own ideas, not just the drug fresh in her mind from lunch, consciously or unconsciously. But I do miss samples...).

But I'm also just down tonight trying to handle this because I'm hurting, the oral motor stuff scares the crap out of me because of what it was like the first time (and that time the place I was contracted to work decided I was on drugs and asked my company to remove me and never let me back in their doors, rejecting all offers of as many drug tests as they wanted and explanations that I was on medication causing the problem and had stopped it but it would take time to leave my body). I also know the oral motor stuff if visible completely freaks out my mom and understand why.

Geodon was what caused the bad problems for me the first time. It was my first AP I think.

I did get a new script for cogentin that was written to take it twice a day so tomorrow I'll try that. I've been taking it all at night which seemed to work fine but maybe it will work better if divided. I don't know. My pdoc wants to keep the dose of it as low as possible because of side effects.

When I went on my AD, Emsam, it was like magic. It started working and kept working and nothing bad happened. I just want that again. The next drug on my pdoc's list is another she's not prescribed in a long time and I read that it has been taken off the market since she prescribed it. I don't know what happens after that drug. Perphenazine I think and then I'm through most of the typicals she's said were ok so I don't know if that means clozaril or if it means trying something that might be less effective.

I mostly just don't want to lose ground. I'm finally feeling pretty good. 7 months of episode is enough and I know it's still there waiting if the dose is lowered.

Sorry, I'm just babbling about this because it scares me and I know my pdoc can't do much until I see her again unless things get worse than they are and things are worse today because I lowered with my klonopin and valium doses yesterday. I'm still needing a lower valium dose tonight but that dose seems to be enough with the klonopin. I hope.

Well it looks like things may be changing soon. My mom was able to see the oral motor movements today. I didn't tell her I was having them to see if she'd notice them because I know if she noticed then they were significant and not just muscle twitches that were annoying me. She not only saw it, she saw it from a distance. So I emailed my pdoc and need to leave her a message to please check the email as well. I hope she's not on vacation. I didn't get a vacation response so that's a good sign but she usually goes about now. I asked to try either another med for this (propanolol which I only can take b/c loxapine is increasing my blood pressure) or to go ahead and decrease the Seroquel now instead of in 3 weeks. I'm scared she'll say I have to go off loxapine since it is causing this and already I'm boxed in on the dose of it and the dose of my AD which will need to go up with SAD season in just a few more months.

This is not good. This stuff is the closest typical there is to an atypical. It doesn't cause weight gain; I lost 5 lbs. I no longer crave carbs like Seroquel causes. It's not sedating. It's an easy med except for the EPS.

I don't swear much but this is making me really want to start.