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

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.

Copyright 2006-2015 www.masterofirony.blogspot.com

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

Loxapine

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.

Saturday, May 30, 2015

Not gone yet

I'm not gone yet. I'm just unable to write at the moment.  I can but it takes forever and I make a lot of mistakes trying to make sense.  So I'm not doing it much.

I'm not well enough to do anything with the blog just yet.  Right now it is a fight to stay out of the hospital.  I've had so many times I've had to fight symptoms and do things but it turns out you can't control psychosis.  And I have psychosis.  Dr. Mind is pretty concerned.

I'll be back at least once more.  Who knows maybe I'll stay.  I doubt it but I have had so much horribleness going on that I can't make decisions.

Thank you again for the kind comments and understanding.

Friday, May 15, 2015

Changes

I have had a lot of time to think lately.  I'm still not sleeping very well although I am responding to my meds and doing better slowly.  Right now the big issues are that I always get manic in June so I need to get stable and hopefully avoid that and I'm still not tolerating my antidepressant except at a very low dose so I am at risk of crashing hard although everyone is watching to hopefully catch that if it starts.  I hate the side effects of the very high dose Seroquel (it makes it so that I have a great deal of difficult urinating and that is quite painful unless I wait until my bladder is so full there is no choice which is also not comfortable, plus I just don't feel good on it.)  But it is helping and my mind is slowing down enough to think.  I'll catch up on emails soon, I promise.  I saw Dr. Brain and once samples have been obtained (it's a process due to Cleveland Clinic policies) I'll be trying Latuda again.  I am hoping that it can take some of the need for Seroquel away and that I might get down to a dose that gives us options if I get sick:  raise Latuda or raise Seroquel.  Raising Seroquel is simply not an option I can tolerate any more of.  So hopefully adding a little more medication will help me function better without a lot of bad side effects.  I tried it once before without side effects but I was such a mess at that time I didn't give it a fair trial. 

I've also made a decision.  I have been blogging for 9 years and 5 months exactly as of today.  I think at this time I have said everything that I am going to have to say that is new and different.  I've loved blogging, it is great to share a story and press a button and know that people everywhere might be reading it and that maybe I've helped someone.  But that's 25% of my life.  There will always be ups and downs and episodes but they aren't going to change much.  Therefore if this blog isn't boring already and I think it is, it is certain to become so.  There will be family issues but honestly I'm not comfortable posting them online, especially with the nature of what is coming up in my life.  And so I am going to end this blog.  It will be sometime within the next 2-4 weeks and my plan is to take down all but a few posts.  Those will be left for anyone who stumbles into it to see and I will keep writing but not actually posting anything new.

I've appreciated all the support I've gotten over the years and it has meant so much that you have come and shared my mixed up, difficult stories, whether for a month or for years.  I hope that you will consider emailing me from time to time.  I don't check that email account all the time but would love to see more than junk mail when I do.  I haven't gotten to know many of you over the years and would feel privileged to have that chance.  At the same time I totally respect your privacy as I hope I always have.

I will miss this.  But it's just time to move on.  I've posted less and less in the last year with the only change being when I have felt bad and that's no fun to read.    I suppose there is always a chance I'll come back.  But I think my time is about up here.

More information to come as I figure out exactly what I'm doing, what I'm leaving up and how obnoxious it will be to get to the point that I am down to only those posts.




Sunday, May 03, 2015

Still here

This blog will be going private at an updated date of June 1, 2015 depending on my mental health stability at that time.  Please watch here for details.

I am still here.  Still struggling.  Mostly it isn't quite as bad.  Sunday night I got 75 minutes of sleep so my mom took me to see Dr. Mind.  Since then I've been getting enough hours of sleep although sometimes a little broken up.  One day I thought I was starting to get depressed, which will happen eventually because I'm on so little antidepressant but by that night I was manic again.  It's frustrating.  But it is not as severe as it was and the psychosis is gone which is really good.  I did increase my Emsam last night so I'm not sure how tonight is going to go.  So far not looking great but I had a migraine today and slept a lot so that may be the cause as well.  I do seem to be almost at the point for my 2nd dose of valium. 

Not a lot going on.   I sprained my $50,000 ankle Friday which was scary.  It seems to be ok but is still a bit sore.  I may wind up going to see the surgeon just to be sure I didn't injure anything.  I didn't do anything except take a step backwards on even pavement so what happened is a bit of a mystery but it turned under just like it used to which was bad.

I've been through a lot of stress with my Anna cat.  She had UTI symptoms and had pulled out all the hair on her belly to the point of having skin damage.  So she went to the vet Monday and despite my better judgment I let them do a bladder tap.  Something in that process hurt her arthritis and she screamed and screamed.  I wasn't in the room but it was awful.  After that she just shoved her head in my armpit and wanted me to hold her that way.  My back is still sore.  So she got antibiotics shot for both the skin and urinary infections and I was told that usually she'd get a steroid shot but her kidneys really couldn't handle it and if we have to do that I'd have to accept it was quality of life over quantity and keeping her last months comfortable.  This became completely ironic since I got her home and the first night she let me hold her and calm her.  After that for days she cried if I picked her up.  And being held hurt her a lot.  So I called and asked for pain medicine yesterday.  Her vet (who I'm not so sure about anymore after the horrible bladder tap; I think she is very young and it is hard to accept that I'm letting death occur naturally without a lot of intervention when intervention is available but not right for my cat) had given me this glucosamine stuff to sprinkle on her food but she avoids that food.  The other vet looked at her chart and said she'd have to have labs before she could have that medicine.  Before I realized that the medication in question was glucosamine I had done a search and found grain free glucosamine treats for her.   And I did a ton of reading and don't know why the other vet was worried about her kidneys as there is little evidence of a problem if any really.  Plus she is not going to hurt.  So the treats will be given without guilt.  She's really much better today and yesterday.  The wound is healing, she has climbed on my bed to wake me to feed her, I can pick her up and she purrs.  I am so relieved; I was afraid this was the end.  But Anna isn't going to give clues.  We've been down the "almost time" road before.

The other thing the vet wanted me to do was give her Advantage.  The other cat is very allergic to fleas and is on it.  If there were a single flea in this house I'd know from him.  Plus Advantage says to not give to sick cats or cats who have had seizures, both of which are Anna.  The vet probably doesn't know about the seizure as it was many years ago and she felt it was safe but I decided not to do that unless I find a flea or evidence of one. 

And that's been my week.  Cycling, mania, exhaustion, and anxiety over the cat.  Also Medicaid but I'll spare you that story aside from it would be SO NICE if  calls were returned. Granted they finally did try after my 3rd message in a month but I missed it and they didn't leave a message with the answers.  And then they didn't answer when I called back and didn't return my call.  So I have no idea if I have Medicaid or not right now.  Lovely.





Copyright 2006-2015 www.masterofirony.blogspot.com

Sunday, April 26, 2015

Update

The blog will probably not go private May 1.  I still intend to do that but before I do I want to find a way to merge the MOI Med List blog with this one and right now I don't feel well enough to figure out anything.  But it will go private so watch here for updates.  Maybe the new goal should be June 1, just to keep that easy to remember?  

So a lot has changed.  I talked to Dr Brain and because I needed something immediate and I can't afford even a week of Latuda (it would be about $200 for 7 days) that's not going to work right now.  So she increased my Seroquel to 1500 mg, an incredibly high dose.  However she says I can stay on it that way for some time if I need to.  I'm also back on valium pills because she thought maybe the alcohol base for the liquid was causing problems.

So far I've gotten between 5 and 8 hours of sleep each day.  It's never been consecutive but usually I wake up for a while and then take a nap.  I'm much less sedated than I expected which is probably how strong the mania is.  

IT is working somewhat.  The better sleep is really good and really important. Dr Brain said that's the thing to worry about right now.  Tonight is a bad night and hopefully soon I'll be calm enough for my 2nd dose of valium.  Last night I didn't need the 2nd dose at all.  The voices are quieter now although my thoughts are still racing terribly.  I usually wake up feeling quite depressed and by afternoon am manic and it increases until I pass out.

I was completely off Emsam for 3 days.  I put 1/3rd of my usual dose on tonight and will wear it 12 hours then it will be off 12.  We're doing that very cautiously as I don't need added agitation but I don't need to crash into depression.

Right now I'm safe from the hospital if I keep improving.  That is very good.  I was pretty scared that was coming.  

It's still really hard.  This is the worst I've felt in a long time.  It's so hard to function at all like this.  But I am getting some sleep and am not totally knocked out so that's good.

Wednesday, April 22, 2015

Getting worse

I'm on more valium now and getting less sleep.  I'm more manic than I've been in years.  I'm mixed as usual really but the mania is so bad that it's all I know most of the time.  Last night I pretty much didn't sleep.  I dozed through the morning (interspersed with awake times) and then slept 2.5 or 3 hours this afternoon.  I woke up wired and am still wired at 2:30, an hour after the valium.  I actually probably wasted my chance in a way because I was too agitated and got up and cleaned a bit.  It's almost like the valium is adding to the agitation although I don't think it really is.

I'm trying to get hold of Dr Brain to see if I can try Latuda again.  I tried it a few years ago and felt it helped for a bit and then didn't.  But I was SO SICK then, just off a lithium toxicity where the hospital messed up all my meds, I was starting to come to terms with not being able to work anymore, I'd tried to go back and failed, I was suicidal, and Dr. Brain was off work and not there to bolster doses or whatever might have helped.  Latuda is a really good drug for a lot of people and certainly the safest add-on left to me.

But first I have to get to Dr. Brain. I sent an email with a fairly desperate subject line and she didn't answer.  Maybe she's off work, maybe she didn't get that far in her emails, who knows.  So now I have to call her secretary and have her tell her that I'm in bad shape.

The only way I can do Latuda is patient assistance and I'll have to have an exemption b/c I have Med D.  Usually that's not a problem as long as I send a letter explaining the cost of the drug versus my income.  But it does mean that if we agree on this it will still be a week or so before I have any.  I can't imagine another week of this but I guess that's a bridge to be crossed later.  Maybe I can buy a week's worth or something.

Overall this is just bad.  Even my mother commented that she's afraid I'll wind up in the hospital.  So am I.  Everything is upside down and horrible.  I should be seeing Dr. Mind again this week, I know I should because I honestly can't tell if my thoughts are THAT fast or if I'm hearing some voices mixed in.  I think it is voices mixed in because rapid thoughts aren't usually mean to me.  Voices are.  I forgot to call to try for tomorrow. Thursday I'm going to see my brother and that's more important.  I feel urgent about that so I'm going with that feeling.  And they are closed Friday.  So Monday it will be.  

I am perseverating on avoiding the hospital.  It's a hard place to be when manic and I don't want to add the cost onto my medical bills from my surgery, a big chunk of which is still going through the system.  Medicare is being obnoxious.  They've paid for anesthesia and PT but not the surgery that came between the two.  They've paid for casts but not the surgery that required them.  It's bizarre.

I just want to go to sleep and wake up feeling good.  Somehow I think that's unlikely.

Monday, April 20, 2015

Been a while

This blog will be going private around May 1, 2015.  Please read here or email at masterofirony@gmail.com for details.  I will post details before going private although that may be delayed due to severe episode.

Sorry I haven't been on in a while.  Things are really bad.  I'm in a full-fledged mania with so many thoughts racing through my mind that trying to get words out and to make sense is very hard.  I've not had much sleep and went 39 hours with only 1 hour of sleep one day last week. 

I am using 2/3 of a patch each day to try to decrease agitation and have liquid valium to allow precision dosing of that.  The stuff tastes terrible and so far hasn't done a thing.  Tonight I'm going to increase my dose by a tiny amount.  I got the script Monday but didn't get the med until Friday because it needs prior authorization by my insurance.  That still hasn't come through but I just paid for it because I needed it badly and it wasn't much more than I'd pay with insurance anyway.  It so far has not gotten me to sleep any earlier although it works just like the tablets were and eventually it knocks me out so that I sleep into the day and that just makes it harder to get up the next day. 

I'm really barely functioning right now and am beginning to fear that a hospital stay is in my future.  I know Dr Brain has one more med tweak to try (Depakote, a drug I loathe, but only a tiny dose she promises.....I know how that goes though.  It doesn't work at low doses so we try it and I wind up on a ton because that's what it takes to work at all.  I'm really opposed to that but there are few options).  After that I don't know what happens but it's not something good.

I hoped this was all exacerbated by my thyroid.  I had all the symptoms.  But it's fine.  Apparently complete exhaustion and hypothyroid share a lot of symptoms.  Still waiting for the rest of my bloodwork but it shouldn't show anything relevant.

I don't know how to make my head stop being so loud.  It feels like my head is stuck in a very loud barrel.  I'm not reacting normally to things.  Something actually said I'm just numb.  A commercial makes me cry.  There is no logic or even any explanation for how my mind is working now.

So that's about it.  I'm feeling pretty horrible, trying to remember I've survived this and worse before and utterly failing.  So tired I can't explain it.  And feeling like a robot who needs to take her pills so she's ready to take nasty liquid valium in a couple hours.  When it probably won't work but at least it's a try.  I hate that this stuff isn't working like it used to.  It's made agitated times so easy in the past; I took it, slept about 8 hours and was fine.  This time it seems to think it is a sleeping pill and sleeping pills do nothing but upset me.


Copyright 2006-2015 www.masterofirony.blogspot.com