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

Sunday, October 04, 2015


I know I'm not posting here anymore but I need to.  At the rate I've managed to shut this thing down maybe I'm not meant to do that.  Although it is still the plan.  When/if I ever feel better.

I feel so weird right now.  For months I've been a depressed lump with no energy and nothing but sadness.  As recently as Wednesday I felt that although I'd started laughing about once a day and was told my speech was improving I was just not getting better and all the bad things in my future plan with Dr. Brain were going to happen.

Then I honestly just let my junk food cravings take over.  I've just been getting my appetite back and it's still limited to a few things and a lot of it was junk. Once I ate a bunch of junk I had more energy.  Not surprising since I've had a lot more chocolate that I should and there's caffeine in that.  Since I'm not used to caffeine enough crappy low-caffeine chocolate still seems able to affect me.  So not good.  But self-limiting as the candy will be gone soon and I'll be back to healthy food.

I don't even known if it's the food.  I tend to think it is because this seems to be anxiety.  I've gone fro not being able to stay awake to having trouble falling asleep yet have no other real signs of mania except a lot of fast thinking about what I'm worried about.  I still am very low energy; a shower and getting dressed is a huge ordeal.  So the depression continues to rage on.  But it maybe is a little different.  I'm not going further than that because in 10 months I've thought wrong too many times and I know perfectly well that the med situation makes really having something big happen not so likely.

The med thing is scaring me.  I don't know what to do.  I know that I am 100% maxed out on everything I'm taking.  The next step logically is to try a tiny, tiny bit of lithium, mainly because the difference between this episode with its' psychosis and duration and the years of other episodes has been that I was always on lithium before.  But because of my toxicities it will mean really watching closely for my level to go even close to a normal level.  And I am concerned about taking away my ability to take advil as that's my best bet for most migraines when they start since they never start at home where I can take my triptan.  Driving is my biggest migraine trigger and if I can't pop advils I'm going to be taking a lot of norco which isn't so great.  We have to talk about that.

But if I don't try lithium then we're left with the 2 brand new anti-psychotics, neither of which is approved for bipolar depression and neither of which is necessarily the most ideal med for me.  There are 3 others I haven't tried because 1 I did try but not long enough (Latuda), 1 interacts with Seroquel and one is the active metabolite of risperdal which causes my blood pressure to skyrocket.  I keep wondering if I should find a way to shell out the several hundred dollars to get one month of one of those just to be sure before we get more drastic.  After some trial time I could go on patient assistance if it worked.  But I don't want to waste money if they are unlikely to work.  I need to talk to Dr. Brain about that possibility.

And then there is ECT which I still don't know if I was accepted to do (and if this little boost of anxiety will negate that) or clozaril, the drug that requires weekly labs and can have some side effects ranging from annoying to deadly.

Or maybe I need to try to change Med D plans to one that covers another MAOI and just hang in there until January.  If that's even possible.  I can't price programs until the 15th.  

I worry about money.  If I am re-admitted to the hospital before Oct. 27 I don't have to pay a 2nd co-pay so if we are doing ECT or clozaril it is financially beneficial to choose that at my next visit in a couple weeks.  But those are both enormous decisions.  Which means that I probably will be delaying admission and my medical debt will be increasing.  By a lot.  Every admission costs about $1200 plus some assorted dr fees.  ECT will have more although I'll just hit my medicaid spenddown and that will be the end of that.  

I just feel like I am at a place where there is no good decision left.  I've been on 68 cocktails now, without counting the hundreds of dose changes.  It is reasonable that there is this looming NOTHING LEFT thing.  That's been coming for years and we've barely stayed ahead.  It sucks enormously that Medicare makes name brand meds so ridiculously expensive.  If I get one month of one of the meds I've not been on that's more than 10% of my income gone just for one med.  Granted if my hospital allowed samples it would work a lot better but still.  Sick people should be able to get newer, better meds.  Because in reality I still have meds I CAN try.  But they are likely to just cause EPS all over again.  Very likely.  And I'm not willing to do that 8 or 10 more times just to have tried the remaining very old meds on my list.

I also feel like I'm running against the clock.  In November SAD will hit.  With nowhere to adjust my anti-depressant.  Or mood stabilizers.  My light helps but only if I'm stable enough for it to not trigger cycling and I don't know that it has ever taken care of the problem without med adjustments too.

I'm overwhelmed and yet I feel like I should be so happy because I'm not the same as I was Wednesday.  But I'm not sure how much that word I'm not saying this is; it's maybe some but it's also maybe just being masked by anxiety.  And possibly chocolate.  (Which I've really not had that much of today, I'm exaggerating.  Yesterday yes, I had way too much.  Today, not that much).

There is so much I'm missing because of being sick.  I haven't seen my older niece in well over a month.  I NEED to see her.  The baby I've seen but it's been several weeks and she has really started talking since I saw her.  But it's hard because the older girl is in school all day every day now and getting up to go see her on weekends is so incredibly hard when I am this tired. Until earlier this week I was sleeping constantly.  Then about Wednesday or Thursday I started sleeping a lot less but still have no energy for anything big.  And she is noticing.  The last time I saw her was right before I was hospitalized and she noticed both that I was sad and that I kept staring off into space.  Which is a lot to explain to a 5 year old.

There's just so much.  Dr. Mind keeps telling me I've been sicker.  I'm sure that's true but treatment has never been so scary.  And because I don't remember the other times it doesn't seem like this isn't as bad as it gets even though I have vague memories of other times that I was.

I just don't know what to do.  I can't wait to see Dr. Brain again.  But even she only has so many answers at this point.

Thanks for listening.  Now maybe I can sleep without extra meds.

Happy.  I remember feeling that once.

Thursday, September 24, 2015

Current status

I haven't updated here in a long time and while I still intend to take this down the depression has to go first.  So here's the story for now.  Yes, I am still severely depressed.  The hospital got my meds back to where they were when this episode started.  It wasn't enough.  After some confusion with Dr. Brain last week I saw her Monday.  We have a complicated plan.

She contacted my inpatient dr. to see if I am a good candidate for ECT (shock therapy).  I am rather hoping this is possible because it is something new and not medications. But there is still trickiness; we have to have some med to go on when the treatments are done that will hold me and keep me from just winding up back in the hospital for more ECT.  

For right now we increased Emsam to the absolute highest dose.  So now I'm on a strict MAOI diet which is weird after being able to be fairly lax with it for years.  I'll know if that is helping in about a week, so about Monday.  So far I've slept all day the last 2 days since increasing it.  I don't think  it's related.  

There are 2 new anti-psychotics on the market and Dr. Brain is checking into whether one of them might be helpful.  One of them I discovered last night has a high risk for the same problems I just got over so it's probably out.  The other is a derivative of Abilify which I had problems with when I was on it years ago.  So she has to figure out if the same risks exist for it.  Getting off Seroquel is one plan because it doesn't seem to be as effective as it once was.

If all that fails then I will go in the hospital and come off Seroquel and go on the last resort medication, Clozaril.  It's a big deal to go on that one; every week for 52 weeks blood has to be drawn and you get 7 days worth of medication after the labs are checked.  So it's a big commitment just for that and some of the side effects can be scary beyond the one requiring the blood draws (which is that your immune system can tank and you can get really sick if not monitored).  I am terrified of this drug but I'm also terrified of what it will do to me to keep trying and failing meds.  That makes me feel so very hopeless.

So I'm not sure what else is going on.  Dr. Brain thought she'd know about ECT yesterday to tell me but I didn't get an answer.  So either the hospital dr. didn't answer her or she ran out of time because today was Yom Kippur and she'd be off work for that.  I'm not even clear whether we'd go for ECT now or at what point in that plan we'd try that.  I know she wants to avoid the side effects (memory loss) if we can treat this otherwise but it's no secret that there aren't a lot of options remaining.

So the status right now is increased Emsam and something else will happen soon.Which is a lot better than waiting to see if my body would stabilize itself after the hospital made a lot of changes really quickly.  It did not.  I understand why we had to do that but oh the wait was awful.

9 months of this.  I don't even remember feeling good anymore.  And now I need to go change my patches and set my alarm to see Dr. Mind tomorrow.  Because I will forget and then everything blows up.

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.

Thursday, July 30, 2015

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.

Tuesday, July 14, 2015

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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Wednesday, June 24, 2015

Good thing my favorite color is green

I still am liking loxapine.  But I had the dose increased and I am so nauseous for several hours every night.  It keeps me awake although I'm still asleep much earlier than before I started it.  

When I was initially on it the nausea passed after a few days so hopefully tonight will be better than last night.  I am not about to give up on this because it is working.  But it really is hard to take it knowing that I'll feel bad afteward.  I take it with food and last night tried taking it with MORE food but that didn't help.  I'm only on 20 mgs which is a tiny dose.  But it will work out.

I also finally figured out, I think, why I was so much worse this episode with psychosis.  I've never had a bad episode since diagnosis without lithium.  Last year after I was toxic and had to stop it I had an episode that responded quickly to a Seroquel increase and then I had a long time I was grieving/just sad about my brother but I hadn't had a bad episode that didn't respond to immediate med changes in a while.  This was the biggest difference in anything that I'm aware of so I'm pretty sure that it is connected.  Lithium always was good at helping me, I just had too many toxicities.  I guess it did even more than we knew.  I'm anxious to talk to my drs about this.

But that is over at least.  No psychosis for almost 2 weeks now and that is a blessing I hadn't truly understood before.  Before now psychosis has been intermittent and inconsistent and this time it was everything but those things.  Loxapine seems to have squelched it though even with my tiny dose.  So hopefully 2 antipsychotics makes up for no lithium although I suppose I won't know this until I have another episode.  The depressed phase of this one has hit so probably another couple of months before I'm over it fully.

I'm still not back to life as usual, mainly because of nausea and sleeping off the new dose of medication.  But it will get there eventually and I'm glad for that.

Wednesday, June 17, 2015


I know it's been forever.  It's been just too much to write with the paranoia, the agitation, the hallucinations, the sleeplessness.......I was in a very, very scary place for a while.  It was so bad that Dr. Mind told me I should go to see Dr Brain prepared to be admitted.  He has been really worried about admissions and that's come up a lot the last while.

Last week I started a new med.  It is actually a very old anti-psychotic.  Almost nobody uses it anymore and it's hard to find anything about it on the internet.  Most of what is out there just says the same thing that is written about all old antipsychotics. But occasionally you find that this one is a little different in that it turns into a kind of antidepressant (but not something exactly accepted as an antidepressant) on the way out so it has an antidepressant effect and Dr. Brain felt I needed that.  I was scared of it because old antipsychotics can be really scary and this one that nobody uses seemed especially scary but I am actually loving this med.  It's improved my sleep (I need a dose increase and sleep will be much better), it has stopped the psychosis as far as I can tell (nothing for several days but I've not been out of the house much), and I've lost 3 lbs in a week because it takes away my appetite.  I'm on 10 mg and you can go up to 250 so it also has a ton of room to grow.

So the risk of hospitalization is down to low again barring some weird problem and I'm feeling so much better than a week ago that I don't have words to describe it.

I still plan to take most entries on here down but I'm not really at the place where sitting and doing that sounds like fun.  I am going to keep some posts up and leave posts about loxapine up because I'd like to help someone else looking for anything about this drug besides the same generic profile.

So that's my story.