Loxitane continued

It's been a few weeks since I wrote about the EPS.  With Cogentin and valium I have pretty much eliminated the muscle pain.  But I'm still having issues that may be deal breakers.

I went back to my normal dose of my Emsam (MAOI) last week and during dinner my face flushed deeply.  I finally took my blood pressure and instead of my usual 103/64 it was 135/84 or something like that.  It shouldn't interact but that is what an MAOI reaction looks like so it probably was and so I had to cut the Emsam back down to 6 mg.  Which is fine now but won't be when SAD season hits and that is coming soon.  But that was just something to discuss with Dr. Brain later.  She wanted me to come down on the loxapine because I was still having muscle pain but because it was working I asked if I didn't complain until I saw her if I could stay on the dose and then in a month we had already planned to lower my Seroquel dose.

That seemed to be working until several days ago when I realized my mouth had movements that I couldn't control.  Mostly my tongue is constantly moving (it stops if I think about it but starts before I even have it back in my mouth) and my jaws are making small chewing movements.  I left it alone to see if anyone noticed from the outside and yesterday my mom did, from a distance.  And since the inside of my mouth is getting pretty chewed up and visible oral motor movements are pretty much my one thing I won't tolerate (and I think it is a bad thing that must be stopped or it can turn into tardive dyskinesia, permanent uncontrolled movements) so I emailed Dr. Brain who said she doesn't want me to suffer with EPS and I can lower the Seroquel now  and will start another med (ironically a blood pressure med) in a few weeks if this doesn't calm down.  I know what the reality is; I'm getting close to failing this drug.  I'm terrified of that; the other typical anti-psychotics are not pretty.  Loxapine hasn't been bad except for the EPS which is just something I'm more prone to getting for whatever reason.  But hopefully lowering my Seroquel fixes my brain chemistry and everything will be fine again.  Dr. Brain is on vacation so if it isn't then I'll be dealing with another dr which I dread the idea of.  

So, for now, great drug, big problems handling it.  Very disappointed because I am feeling better and hate the idea of losing that.

Loxapine update

I have been on loxapine for about 5 weeks now.  I really like it.  It is so different than Seroquel; it's not super sedating, it doesn't make me crave carbs (the opposite in fact), it works fast and then is out of my system, and I'm not aware all the time that I've taken it.  It is weird that I can feel it in my system through the time I've taken it until it is at peak concentration 4 hours later (the side effects are present then and then dissipate); I've never had a drug I could feel like this.  I am on 20 mg and we're aiming for 30-40 mg to be my dose we hope.  20-60 is normal.  Normal dosing is divided and I am taking it all at once because I'm not good at taking meds more than once per day and I have Seroquel to keep things level during the day so just having the added meds/sedation at night is better.

There is one problem and that is that I am having some EPS (extra-pyramidal syndrome).  Essentially there is more of some of the brain chemicals than my brain wants and this is the reaction.  You have to be really careful with this reaction because it can lead to some scary and permanent issues or a situation where the vitals become unstable and dangerous.  I've had it before on drugs much less likely to cause this so it was kind of expected; I had a prescription for treating it from the day I started the loxapine.  The problem was that I missed what was going on.  In the past EPS has been uncontrolled oral movements (my tongue flicking in and out like a snake all the time) or akasthesia which is the feeling that you have to move all the time without stopping.  I was hospitalized with that a few years ago and was afraid that would happen again since I've had it on a few drugs.  So far so good though.

What did happen was muscle rigidity.  My body has just HURT for weeks.  I kept explaining it away though; my back hurt from bending over my sewing.  My legs and feet hurt because my shoes weren't right.  My jaw hurt from grinding my teeth.  Etc.  And then suddenly Friday I realized that I wasn't just in pain my muscles were tight.  So I took some extra klonopin and nearly immediately things relaxed.  I took a big dose of valium that night and most of my pain has been gone since with a little more valium or klonopin when needed.  My jaw is still very sore and the muscles are kind of spasming.

I saw Dr. Brain today and she did a test and so we have a baseline to watch and she changed meds around.  I started Cogentin tonight, which is a med that helps with the rigidity and any other movement disorder symptoms I might get.  I'm going to be changing my nighttime benzo to valium if I can find a dose that gets me to sleep but doesn't knock me out so that I get the benefit of that too since it also treats the EPS.  And I'll monitor and we'll watch and wait and hopefully the Cogentin will fix things and I'll be tolerating this well and without pain.  I sure wish I'd realized that the pain was this before it got to my feet. That hurt so much and I kept putting the blame on my shoes because I'm still working on finding shoes that I like and that meet my very picky requirements for shoes right now with the ankle still recovering.  They must be supportive, have a thin sole so I can feel stones and things that I step on, have a wide toe box, and look ok to wear in public.  It's hard to find shoes that meet these requirements and so when I thought I'd found a pair a month ago I was thrilled and then when they started hurting so much I thought I'd wasted another chunk of money on shoes I couldn't wear.  But I was wrong and so glad to be.

Now I just have to get all the med changes done in the next few days while still maintaining the schedule I had set up ahead of time.  I have to not be too sedated but be sedated enough.  That's a fine line I do not enjoy dealing with.

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