The End

It has been a year since I posted here.  I waited that long to be sure that I was ready to stop.  I am sure.  Nearly 11 years ago I started writing here and I just don't think I have much more to add.  I thought I might at some point because life is different now.  I started Clozaril last February and am more stable than I've been in a long time.  But when I started feeling better something happened that surprised me:  I wanted to be more private and have felt that God has been leading me in that direction with a number of decisions I've made lately.  I can't really explain it but blogging about my life is no longer attractive.

I will leave the blog up.  I've removed some posts and will continue to search for others that I don't want to have up forever.  I am turning off comments after I post this.  What I am leaving up is for archival reasons only; I do believe I have a story to tell but the telling is over at this point.

Will I ever blog again?  Maybe.  If so it will be under a different name.  Master of Irony is done.

Thank you all for the support over the years.  I'll miss you.

Copyright 2006-2017 www.masterofirony.blogspot.com

2016 plans

I am sick with bronchitis and a sinus infection and while I'd been getting better tonight my breathing got a lot worse and I'm back to feeling like I did 3 days ago. And the treatments for that make me agitated so I guess I'll start 2016 out with an explanation of what is coming for me.

We gave lithium a shot.  After my levels were drawn after a week on it I emailed Dr Brain twice asking if I could go up some since I knew my levels were very low since I had no side effects.  Unfortunately she didn't get the emails and I forgot to call as well as sending the email.  So when I saw her just before Christmas she at first seemed to be planning to try another month on lithium.  Which was very much not what we had agreed to in November; at that time I'd said that I wanted to try lithium but if I wasn't doing better by the time I saw her it was time to just give up and do Clozaril because I'd taken about all I could.  So because my moods are out of control I cried and had a very hard time explaining myself but finally did.  And then she changed what she'd said about going on it.

Originally she'd said I'd start tapering the Seroquel and go to the hospital when I couldn't handle it and then they'd get me off and start the Clozaril.  But this time she first started talking about doing it much more slowly at home with decreasing Seroquel while very slowly increasing Clozaril.  But after we talked about that for a while she paused and said that the other option which would be very hard but which would allow monitoring and get the whole thing over faster (and would make the hospitalization definite instead of waiting for 6 weeks to see if I could make it) would be to go in and rapidly get off the Seroquel and then start the Clozaril.  She said I'd feel horrible for a few days but then the worst would be over.  I much prefer that to weeks of withdrawl (although I'll still deal with it for weeks anyway but the Clozaril will be kicking in faster to help with the mood part of it.  Physically it can be pretty awful too.  So I'm doing this with no real expectations of how I'll feel because it's not common to rapidly come off so much, but accepting that I am likely to have my moods everywhere (she told me that) and quite possibly I'll also be physically ill.

The plan at this moment is that she'll be back from a week off Monday and should get my current levels then.  I think I'm supposed to call and tell her that it is still not working.  She has contacted all the drs at the hospital since the dr on the unit I go to left and she didn't know who would be covering when I was admitted and they are changing off by week so really need some agreement about how to handle this anyway.  So theoretically some plan has been developed and once she hears from me she'll tell them and I believe then we just wait for a bed to open up.  I'm not completely clear on that but she did say she thought I'd go in between the 4th and 11th. I'm not holding my breath with those dates (ok, yes I am) because she gets distracted sometimes and coming back after being off for a week she'll be swamped but hopefully by this time next week I'll be in the hospital and feeling very ill.  I just want this over with.  I'm tired of feeling lousy (my sickness isn't helping and my family dr tells me this can last 3-4 weeks; the sinus infection is responding to antibiotics but the bronchitis is not and he says that's been common).

I hate the idea of going into the hospital with the need for breathing treatments and steroid inhalers.  It won't help my mood while I go through this and it's a complete pain to deal with b/c the nurses aren't allowed to give the meds so respiratory therapy comes and it seems like it is always a bad time.  Breathing treatments have to be done sitting in the hall while everyone can watch b/c of the tubing and need for an oxygen tank.  Which is just weird and not something I want to do 3-4 times per day.  But I learned the hard way not to stop the treatments until I am sure my lungs are clear.  So we'll see.

Otherwise I'm just grouchy.  My current diagnosis is severe mixed episode and that is the definition of grouchiness and mood swings.  I'm all over the place and that was before the asthma treatments.  I am usually mixed but don't get severe all that often.  I think my supreme grouchiness and inablity to explain myself to Dr Brain led to that one.  

Anyway, I doubt I'll update from the hospital because I'm going to restrict myself due to not necessarily being in control of what I'm saying.  I'll try to post when I know when I'm going in. We'll see what happens when I'm there.  I will get any comments posted though so if you want to say hi it would be appreciated although I won't be responding in all likeliehood so please don't think I'm rude.  Just going through  a lot, especially if this stupid bronchitis continues.

69 and 70

It's been a long time since I wrote here.  Not much has changed.  I've put in a lot of time waiting and hoping for samples of one of the new anti-psychotics but that didn't happen.  I did not want to be in bad shape for Christmas when I knew it was probably going to be a rough one as my brother was recently sentenced.  (Which is a whole other post in that he got off very easy and I've been very upset about this).  It's another one that is a big change for everyone and my being extremely unwell or in the hospital wasn't going to help anyone.  So the deal was that I added a very low dose of lithium to my meds (that's cocktail 69) and I see Dr. Brain Monday and we will plan for tapering off Seroquel/admission to complete that and go onto clozaril.  

The reality is that I've done everything in my power to avoid the clozaril.  It is supposed to be a very effective drug but can have some nasty side effects, the worst of which is death.  So for 6 months you have to have bloodwork every week and you only get your week's meds after that bloodwork.  Then it's every 2 weeks for 6 months and after that monthly.  They are checking to be sure your immune system doesn't drop off, which has killed people.  It also has excessive saliva causing nighttime drooling and potential bedwetting as side effects.  You can imagine how exciting those things are.  

I dread the whole thing.  Coming off Seroquel will be hard.  My body is used to it and has tolerance and there will probably be some withdrawl effects.  Apparently I may also have to come off Klonopin and that will DEFINITELY have withdrawl.  And while they will start the clozaril in the hospital it is a drug that you go up slowly on so Dr. Brain already told me I won't be feeling good when I come home from the hospital.  

If things work on the schedule I have in mind (depends what Dr. Brain says; I'm trying to get a few more therapy sessions before I go and I think she's off for a week anyway) I'll definitely be spending my birthday in the hospital.  

I will try to update when I know more but this is the current plan and there isn't anything that should disrupt it.  We agreed in November that I could manage one more month and that was enough of this.  And since I've been having hallucinations and some more extreme paranoia lately that's just another sign that I need to get onto an anti-psychotic that is fully working for me.  I've handled this episode for 11 months.  I think that is enough and obviously it's not going to be all better without drastic measures.  So I will be glad to get through that part of my life.  This is my 40th birthday and I want a small party (family) and so have already told my mom that I still want to do it but when I'm feeling better so maybe a birthday party in March. Please God let me feel better by March.....

Anyway, I have done a bunch of sewing tonight.  My goal was to finish except for final touches one huge project and to cut out 2 small projects.  I got the huge one done, just needs a seem fixed and something else fixed.  I had a pattern all ready to cut out the other and my cat sat on it and got something gross on the pattern.  So I really need to go crawl around on the floor and make another pattern so I can cut out the 2 doll blankets for the girls.  I'm becoming very aware of how little time I have to finish my goals for sewing.  I've done 2 enormous projects (patchwork picnic tablecloths) and both are ready for me to check seams, repair a couple places, wash and iron  and wrap(yay!).  So that's probably tomorrow. But I'm also making doll blankets for each niece and hope to make them a 2nd smaller blanket for tiny dolls they already got from their great-grandma (and b/c I bought fabric to make a blanket for the baby and then it wasn't enough so I need to use it somehow) and then I have to finish one pair of pajamas and make 2 more.  So I have a busy week ahead.  Which is good.  I can't read a book or follow a movie but sewing is automatic and repetitive so I can do it and it feels a lot better than aimlessly reading the internet or playing solitaire which is the thing that I can do better than nearly anything else.

 

68

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.

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.

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.

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.....

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.

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.

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.