Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, August 29, 2015

Loxapine the end

I got home from the hospital yesterday.  I wound up with a fast taper of the loxapine.  I spent 30 hours in the ER waiting for a bed (every psych bed in Cleveland Clinic was full) and getting meds Sunday night was tough and they only got 5 mg of the 10 I was supposed to have. Then Monday I didn't see a dr. for admission until midnight and the pharmacy was closed so I didn't get any.  Tuesday we agreed to just end the taper even though it was a harsh ending.

I am still feeling very depressed but I no longer want to hurt myself.  I'm home with the caveat that I might have to come back in.  The dr. said I should expect depression for at least another week, possibly 2.  My body has been through so much with the rapid loxapine withdrawl, a bunch of weirdness with my patch (it couldn't be changed for 60 hours with the ER and pharmacy being closed and then we were going to stop it and go to Nardil until I looked up what Nardil would cost out of pocket), increasing my Seroquel, etc.  So I guess feeling good may take some time.  In a few days my Seroquel can go back up and then I'll be on the same meds I was on when this started.  That scares me but it will be easier to add something later if needed and I needed to get out of the very dark place I was in first.  Adding another anti-psychotic isn't a good idea until loxapine's effects are gone.

My tongue is still moving weirdly but inside my mouth and there is no chewing motion unless I'm having spasms of the muscles in my jaw.  So that's better and in a few more weeks the rest should be gone completely after the last of the drug really works its' way out of my body and my body chemistry has had time to level out.  

So in time this will become my past and my present is taking care of myself the best I can and staying home instead of going back.  (I have a well-earned horror of spending more time in the ER any time soon.  I was there for an unusual situation but I don't ever want to do that again.  It was as good as it could be but 30 hours in a psych ER is a tough thing.  I no longer eat hamburgers because I had 2 of them cold and then refused to eat the 3rd.  So instead I had ham sandwiches that caused migraines and I didn't even care.

Anyway, loxapine is over with.

Saturday, August 22, 2015

Loxapine taper

I'm not handling this well.  I have so much less medication in my body than it is used to because my antidepressant and Seroquel doses are lower too and at home I can't increase those while tapering the loxapine.  The last week of the taper is now.  I will be going into the hospital Sunday to get help getting through the taper and hopefully onto some meds to help the horrible depression that has hit very hard in the last 2 weeks or so.

More later.....

Tuesday, August 18, 2015

loxapine-the beginning of the end

Loxapine worked very well for me.  Unfortunately it also isn't the right drug for me.  I wish that it was going to work out but the end is near.  I saw Dr. Brain today (after seeing Dr. Mind who was concerned enough to send Dr. Brain an email about me) and it's just not possible to stay on loxapine and so tonight I started coming off it.  Not only am I still having oral motor movements I am also depressed now, enough to get an offer of the hospital which I decided to not take.

The oral movements just won't stop even with lowering both the dose of it and the dose of seroquel.  Which means it is the loxapine causing it.  This week I am taking 20 mg every other day and 10 every other day and then next week will be 10 every day just to be sure that I don't have no side effects and feel good on that.  However it is very unlikely that will happen.

Since we have to know what changes the loxapine is making no other changes can be made until that it over.  Which means I am facing a couple weeks of probably feeling pretty lousy.  

I think that I'm going to get Dr. Mind to monitor the depression but I'm going to ask a question that came up at the end of the session with Dr. Brain and was only partly answered because we were over time and hurrying:  if the hospital can expedite what I'm going through I will go to the hospital next week.  This week I'm dogsitting and don't have anyone to step in for me.  I'm ok for now but worried if it gets any worse.  I don't want to go to the hospital but well, I've never been in the summer so might as well add to my collection?  Or get better as fast as possible.  This has gone on for 8 months now.  

We don't know what med we'll try next.  But if I fail one or two more I'll be going on clozaril which is the scary med.  If I go on it for a full year I have to get blood drawn every week to be sure my WBC is ok.  I only would get a week's worth of meds at a time and every week would have to have a new order until the next blood draw.  And I'd have to get off Seroquel before starting it which would be ugly and has the word hospital all over it.  It has potentially strong side effects but less likely to cause the things I've dealing with now.  It is the med of last resort and nobody wants to see that happen but I need to be on a med that works and the trick with clozaril is that it often really works.  I just don't want to be this close to having to take it.

And I am so tired....I've been sleeping 12-15 hours per day and today I had to get up for my appointments so I'm seriously tired yet not at all sleepy.  Lovely.

So that's about the end of it.

Tuesday, August 11, 2015

Loxapine update

The last time I posted I was reducing my Seroquel dose because I was having uncontrolled oral motor movements.  Unfortunately this continued and since Dr. Brain was on vacation I lowered my loxapine dose myself.  Which didn't work and then my mom and Dr. Mind started worrying about my flat affect (basically appearing to have no facial expressions).  So when Dr. Brain was due back today I left a message for her that it was continuing, I was concerned, etc. along with huge apologies because I know that it is awful when she comes back from vacation.

She called at 8:45 tonight, I think on her way home from work.  We decided to try to keep the loxapine by adjusting Seroquel and Emsam if possible.  So I'm lowering my Seroquel tonight and then will probably lower it again Thursday.  I see her Monday and that will probably be the final decrease to half the Seroquel I was taking 2 weeks ago.  

The trick is not bottoming out.  So far the flat affect is over-medication but it can happen from depression too and that would not be good.  So I have to be carefully watched for depression as I'm on less Seroquel but hopefully the same amount of medication overall.

There is no choice about this.  I have to stop the movements or I could develop TD (tardive dyskinesia) which is permanent uncontrolled movements.  No thanks.  I'm less at risk because this is happening while on the meds and not while coming off them but it is still a risk and still needs to be alleviated.   I have no desire to go through life visibly chewing nothing.

So it's a bit scary.  But my mood is ok and that's a good thing.  Some depression but there's fear and med changes involved and so it could be anything.

Off to buy my niece's 2nd birthday present.