I guess I wanted this to be easier

I have wanted to be off of Zyprexa since about almost as long as I have been on it- after about 3 or 4 weeks I got tired of being so numbed out and tried to go off of it, with a resulting hospitalization as I got agitated during withdrawal. Subsequent attempts haven't been any more successful.

This time I got impatient, I went too fast. I have to go up a little, be slower to go down. I have too much at stake. I have to function. I have a life. Zyprexa has made me obese. It is doing bad things to my brain, as does any antipsychotic. But it is damn hard to stop. Much harder than klonopin or adderall.

If I can't concentrate enough to do my notes at work- this is not sustainable. Forget how I feel... as if I could. But I can't get myself fired. I have to take my Zyprexa, for now. At 5mg, I was concentrating pretty well on Zyrexa. Any higher and it was definitely bad news, but at 5mg I seemed to do okay. I can only hope that at 5mg it is not doing too much damage.

I want to stop thinking about meds. I want to just live. All this thinking about meds makes me feel more like a mental patient, not less. Normally, I really don't think about it all that much anymore. I am just different- I do feel that. How can I not when I live in this family-centered town and I am about the only person my age with no husband, no children? Of course I feel different. Even without my past. But different is just different.

What I was hoping that my "mood disorder" would become like my hypertension. I take meds for it, it is controlled. I don't go around thinking of myself as someone with hypertension, although I know that I am. Twice a year I see my doctor, she adjusts my meds if necessary- tells me to exercise more, lose weight, and I am on my way.

I know that at times meds made me worse- but I blamed that on bad doctors. I was thinking that, perhaps, I am "doing well" now because of my meds, just like my blood pressure. But now the evidence seems to be that, for most people, the meds worsen long-term outcomes. And I don't know what to do about that. It seems like I need to do something.

There has always been a part of me that wondered, to what extent am I doing well in spite of my meds, not because of them.

And who really knows.

Struggling Today

I have been depressed and out of the the past two days, and very tired. Last night I actually got out of work early, but was too tired to go to my support group, and I needed to go. If my fellow "crazy people" won't understand what I am going through with medication, who will? And I need to talk about it, but there really isn't anyone to talk to who understands.

I think I need to take a break from going down any further. My irritable bowel syndrome is really bad again. My concentration is shot, I hardly wrote any notes at work in 2 days. My sleep is broken. My mood is going south. I have constant headaches.

But I'm not going back up. I am not giving in. If I go back up on the Effexor, I'll need another blood pressure medicine- I'm already maxed out on my ACE inhibitor. And there is no way I am going back up on the Zyprexa. If I have to hang out on 2.5mg for a while before I can get off of it, so be it, but I'm not going through this again.

I want to get away. I want to go backpacking. I don't know when that will happen, I don't have any time off until May. Maybe Sunday I will go hiking. But that means not doing a bunch of other things that need doing, and not studying. Still, I think I have to go.

How long to taper?

So far so good on the Zyprexa decrease. I have had some problems sleeping, but not as bad as in the past. I have had some mood swings, but not too bad either. I had about two days of depression, and now I am just moody. No irritability, no signs of hypomania.

Two nights ago I gave in the insomnia and took a full 10mg of Ambien- I normally only take 5mg- but, as usual, the cognitive side effects were too severe and I really couldn't do any paperwork before lunchtime. So no more, it is better to be sleep deprived.

I do feel more alive. Like parts of my mind are starting to wake up. It is subtle, but it is there.

But it is also scary- the thought of going completely off of Zyprexa. Of all the meds I currently take, that is the one I have been taking for the longest, my guess is about 12 years. And in those 12 years I managed get myself off of disability, get a Master's degree in OT, and work for 8 years as an occupational therapist. But it is easy to confuse correlation with causation. And I really think that in those 12 years, I just wasn't so miss-medicated so as to make me manic and rapid cycle. Really, the depressions have continued to a large extent. But positive experience has built upon positive experience, and work has really been what has made me better. And, I feel like I should be further in my life than I am. Things are still very hard.

As predicted, my therapist is not too happy with me reducing my meds again so soon. But she says that she will support me.

She asked me what I am going to do about my other meds. And I told her that I don't know- at least for now. Ultimately, I want to get off of whatever I can get off of, but my priority has always been the Zyprexa. I'm not sure if I am doing this in the right order- maybe I should get off of the antidepressant first- but I do take another mood stabilizer.

Work is going well. But I am not studying like I need to be. I am too consumed with this, with meds. I hate this. I don't want to be thinking about meds all of the time- and yet, how can I not be, when I am learning how much of what I assumed to be true about them is actually false?

Interestingly, I may find a reason to stay on my antidepressant that has nothing to do with depression! Since I lowered my Effexor, my irritable bowel syndrome has been acting up. It really wasn't too bad though, until today, when I had to keep running to the bathroom at work. But then I started wondering, are antidepressants any better for IBS than depression in the long run- maybe they don't work for that either? And I am just having withdrawal effects.

If I had any doubts...

If I had any doubts about wanting to get off of the last bit of my Zyprexa, they are gone. There is a new study out in Psychological Medicene (an online journal) showing that schizophrenics, as well as people with psychosis due to mood disorders, do much better if they go off of their anti-psychotics. It is there at 2 years, but over time, the effect is much, much bigger. If this effect were a drug, everyone would want it.

The authors say, the people who go off of their meds had a higher premorbid status, and a more internal locus of control. Basically, what this means to me, is that they identify less as psych patients. But still, medication is considered so fundamental to the treatment of psychotic disorders- you would not expect to see this. Not fewer relapses, more periods of remission with no meds.

There was a time I thought I had made my peace with my 5mg of Zyprexa that I was down to. OK, it will take years off of my life. But it is about quality of life, not quantity of life, I told myself. But if it is not even making me better!

I have tried to go off of it before, of course. First because it made me numb. Then because it made me fat. And then when I read about antipsychotics shrinking brain volume- I decided I really had to get off of it. Which, I guess tells you my priorities. You can make me fat, but don't make me dumb!

But in the past, I never properly understood that what I was experiencing when I tried to go off of it was a withdrawal effect. I thought that the insomnia, the mood instability, and often the irritability that followed just proved that I really was bipolar, and really needed the drug. Afterall, my experience with mania had been so severe- although I think that it was all medication induced.

But I am far away from the mania now- years away- that I don't fear it anymore. And I know how to control it, anyway. Going back on tegretol will do it, if I have to. And in the short term, I can knock it out with Zyprexa if I have to. Things won't get out of hand. The short hypomania's that I get, even though sometimes they are mixed and unpleasant, I can handle. Worst case senario- I go shopping. But I don't spend enough even when I do that it is worth medicating myself over. And sometimes I have fun!

I am getting off of Zyprexa. I just don't know how fast. I have been at 2.5mg for a few days, less that a week. I should probably give it a little more. And I should probably call my psychiatrist for some 2.5mg pills so I can cut them in half.

One thing that scares me about going off too fast- besides my normal withdrawal effects. There is this one blogger who says that to withdraw from Zyprexa can itself cause more damage to the brain and body than staying on it, because of all of the things that Zyprexa affects via some of its non-D2 receptor binding. And I don't know what to make of this. So I am taking lots of anti-oxidants, and hoping for the best. But I think slow is better, when it comes to getting off of this- even if I'd like to do it faster.

I Need Sunshine!

We have had a string of cloudy days, and my mood is feeling it. I feel dead and lifeless. If I had feared being agitated after going down on the Zyprexa, especially in the springtime, it hasn't happened. In fact, I have been able to sleep, and I spent most of the day in bed.

Sometimes I wonder if I should move to Florida, or at least somewhere south of here. The problem is, I don't really like heat- especially not combined with humidity. And I have family in the Northeast, which is keeping me here for the moment.

It took me a while to figure out the seasonal component to my illness. I don't even think they had light boxes during my first hospitalization for depression during in the mid-1980's. No one talked about SAD. It would be a decade or so before I read about it, and realized, that is what I have! And no wonder I seem to spend every December in the hospital.

I actually had a therapist who tried to convince me that I found the holidays traumatic and depressing, and that is why my depression would always break through whatever meds I was taking each winter. So I wouldn't have to see my family. And I knew she was crazy.

For years, I would dutifully go to a therapy for a year- and then generally change therapists after that year (which seemed a respectable amount of time), because I didn't find them that helpful. There are some exceptions- I did have 3 therapists who were helpful, and I only left because I moved.

When I started working again 8 years ago, and lost Medicare, and had private insurance- I tried going to therapy a couple of times. But the in-network therapists that I tried weren't that great, and I didn't have the money to go out of network. Some were actually atrocious! And I gave up on therapy for a while.

But when I moved here, I realized I was very isolated, and could use some support. After trying two in-network therapists, my parents are now paying for me to see someone privately. I feel bad about this- I make a decent salary- but I also have a lot of debt, and it would be hard for me to pay myself. Not impossible, but hard. Especially if I want to do things like have a gym membership and have a personal trainer once a week.

I like her. I do find her helpful, although it is hard to say how. Perhaps she is just social support. She does talk a lot about mindfulness, which I like- but I can't go the whole way to DBT, of which she is a big believer. DBT is just too complected, and actually seems to add more layers, making me less mindful in some ways.

During my years on disability, DBT was recommended to me, and I dutifully found a DBT group at a local hospital. I cut myself at the time- so the doctor said that this was the thing to do, in terms of research. Nowadays, they would call it evidence based medicine. But you have to look at the individual.

I was deeply depressed at the time, just out of the hospital, on disability, and I didn't know if I would ever be able to go to school or work again. I wanted to be a functioning adult human being, but I didn't know if that would ever happen. And so, I didn't know if I wanted to live.

It seemed to me that DBT was nothing but a string of coping mechanisms- ways of getting through the moment, but with no promise of function (how can you study when you are having a tea ceremony?). I didn't want my life to be one long string of coping mechanisms. I didn't know if I wanted to get through the moment. My distress was existential.

So I hated DBT. And I hated the rules of the group. And I also was very out of it- and inappropriate, in the sense that I had no idea where other people were coming from, and that some people where finding it helpful. I was totally self-focused at the time. And I managed to get myself kicked out of the group. They decided to enforce a rule with me that they did not enforce with anyone else- that my psychotherpist had to be at the hospital, and she was not.

I should never have been admitted to the group, I was just too depressed. So my view of DBT is probably unfair. And in fact, I really can't remember anything I learned from the group!

So I pick up little bits of it from my current therapist, like "opposite action," and it is like learning them for the first time.

Am I Going to Stick it Out?

I have been trying to decrease my Zyprexa again. I am now cutting my 10mg pills into quarters. Previous efforts to get below 5mg have always failed, I have always given in to the insomnia and mood instability that followed.

But Thursday night I decided now is the time to do it. I had a bad day after a string of good days, and I knew it had nothing to do with meds. It had to do with coming down from good things, it had to do with a rainy, cloudy day and not enough sun, and who knows what else. But no change in meds. And Thursday night, I knew that I was not going to get enough sleep because I was going to a support group that gets me home late, and I can never go home and just go to sleep, and then I have to get up early to be in at work by 8am. So this was the time to do it.

I went down to 2.5mg. I strangely slept! None of the insomnia I usually get- but I went to bed late. Woke up in a decent mood even. And then had a good day at work. I could concentrate, I felt good. But sleepy.

Friday night I slept again, no problem. This is the way to do it, be sleep deprived. I don't know why I am not having insomnia this time around otherwise. But I woke up depressed. And started to panic. I had a session with a personal trainer at 10:30 which I barely made it too, I was late and almost in tears. But I made it. And afterwards, I feel better. But still, a little down. Not like I have felt most of the week.

But it is only day 2. I can stick this out some more. Especially if I can sleep.

When I decided to go down on the Zyprexa this time, for some reason I just knew that I could do it this time. Don't ask me why. I think because it is spring. Spring is always a good time for me.

My therapist won't be happy with me. She actually gave me the advice that I should give it a rest for a little while with the meds- that I have been so bad recently, and now I have been better- just let things ride for a little bit. And it seemed to make sense at the time. Although I told her that I couldn't guarantee more than a week...

I didn't even last a week!

What she doesn't understand is that I don't know if I can do what I need to do in the coming year on the meds that I am on. I need to be studying for this certification exam. It is a lot of studying. I need my mind to be clear. And I need my drive back. I really think that I have lost a lot of my drive on these meds. It was so clear to me- I was in graduate school when my meds were changed, and suddenly I couldn't get things done on time, suddenly my drive was gone. OK, my obsessions were a lot better too- and I haven't been hospitalized on these meds- but that is a hard bargain.

So she says, maybe I shouldn't be tinkering with meds during this year when I need to be studying- but that is precisely why I am tinkering.

Good Things

This past weekend I was out of town, going to see my niece baptized. She is 3 and a half months old, and even though I just saw her two weeks ago, she is different. More social, more smiles.

His wife's family was there, and they had lots of friends there. And I was just the aunt, just my brother's sister. An occupational therapist. I wasn't this crazy person with this crazy past. I was regular. It was great.

And my niece was great. I am too old for motherhood,realistically - and it was something that I told myself that was not an option for a long time. I didn't even know if I could take care of myself- let alone a baby. And I thought I would go crazy off of my meds while pregnant. So when I did internet dating, I didn't even look at men who wanted children.

So being an aunt will have to be it. So far, I am loving it.

Good Numbers

120/70. That was my blood pressure at my doctor's office today. I was in for a blood pressure check with my GP after some really bad blood pressure readings, like 150/100, and some changes to my blood pressure medicine. Off of hydrochlorothiazide, increase on my ACE inhibitor. But I think just as important was my decision to decrease my Effexor XR. I used to take 450mg, and at that dose it frequently causes hypertension. Now I am down to 300mg. My pulse is down too, and that tends to run high.

I actually went down faster on the Effexor than planned. I had hoped for a full week on 375 (I was cutting a 150mg tablet), but I only gave it 4 nights because I was running out. My health insurance company had decided to once again require pre-authorization for my prescription, and it took almost a week to get it. By Sunday night, I had to cut down to 300mg- and I thought I had a pill tucked away for Monday morning. But of course I didn't, I had already taken it- so by noon on Monday I was in Effexor withdrawal hell.

During lunch I slunk away from work and ran to the pharmacy to buy a few pills, paying out of pocket. And as soon as I got them, I went and took one- thinking, the only difference between me and a heroin addict is that I expect my insurance company to cover my drugs!

Since then my insurance company has agreed to cover my prescription, so all is well. Except that my new prescriprion is for the generic Effexor capsules, not the tablets that I had been getting. The tablets I could cut, which made it easier to go down on it. With the capsules, I can't do that- so, if I want to go down further, and not go down 150mg at a time (and I don't want to do that), it will have to involve my doctor.

Some people would say that it should always involve my doctor. But I have really gotten to the point to where I feel my psychiatrist is the person who I go to when I can't figure it out for myself. When I get stuck. And it does happen. But then again, I recently haven't been liking his suggestions. Abilify, lithium, no thanks. When you are depressed enough, you will try anything, though. And when you are depressed enough you can't think that well for yourself. And that is how I got on the Abilify for a while. That is how I almost got on lithium again. Lithium is in again. It was out during the one time I could have used it, when I was really manic, and no one would put me on the right mood stabilizer. But I've been really depressed on lithium, so even if it is in, I don't really think it is a great drug for me now.

But also, my psychiatrist keeps saying that if I go on lithium, I might be able to get off of Zyprexa. I don't think that the reason that I can't get off of Zyprexa is that I need lithium. If I do need more mood stabilization off of Zyprexa, I'll cross that bridge when I get to it. I can't get off of Zyprexa because when I try to stop taking it I can't sleep. And unless lithium is a really good sleeping drug, it isn't going to get me off of Zyprexa.

Sometimes I wish I was an alcoholic

I guess I should explain that one.

If you are an alcoholic, the cure is simple. Don't drink. I don't mean that it is easy. It can be very difficult, but the principle is simple- don't drink. Plus, there are AA meetings on every night of the week in lots of towns.

With depression, it is far from simple what I have to do to be recovered. And depression groups are hard to find. And I'm sure the AA crowd is a lot more fun!

I think alcoholics have better words to use, too. They go for rehabilitation, not to mental hospitals for "stabilization." They are "in recovery." And what the hell is stabilization, anyway? Why would I ever want to be stabilized, especially when I am severely depressed? I want change. I want growth. I want something different than what is.

Alcoholics go for treatment to get off of alcohol. Depressed people go for treatment to go on medication. And when we want to go off our meds, it is not considered part of our recovery.

Having Some Much Needed Down Time

I am not doing much this weekend. I need to do laundry, hopefully that will happen. And maybe I'll actually do my taxes. But really, I have been taking it easy. I have needed this. Last weekend I was out of town, very busy all week. I am someone who needs a lot of down time, I have learned that about myself. I think that it really contributed to this depression- travelling so much over the holidays, being so busy. Plus the seasonal thing, despite the light therapy, winters are never easy. And being so busy I just got more behind at work, so more stress. There were a lot of things contributing to this.

2 nights back to 5mg of Zyprexa, where I was before all of this started. And I seem fine with it mood-wise, but sleeping is not good. But I am being stubborn- I had been taking ambien on a regular basis, something I stopped on the higher dosages of Zyprex. I would really like to not go back on it, so I am going to hold out for a little while longer. Spring is a really bad time for me to try to go off of a sleeping medication, but I am trying anyway.

Next weekend I am out of town again. My niece is getting baptized. So I get to see her again!

There are some good things in my life. Along with some not so good things! But you know, meds will not make those bad things go away. I just have to deal with them.

A bumpy ride, but things continue to improve

I'm having a lot of ups and downs, but things are generally improving. In fact, I have an i-phone app to track my depression, and two days ago I finally made it into the mild-moderate category for clinical depression (having started in severe clinical depression territory).

Meds definitely got me through the worst of it- but having a supportive boss, a good job, a new niece- all these things definitely helped too. And now I am trying to wean myself off the last of my Zyprexa increase back to the 5mg I had been taking prior to all of this. That is what I took last night- and didn't sleep very well, but did sleep some. I've managed to get off the ambien while on the higher dosages of Zyprexa, and don't want to go back on it if I can help it.

I'm also trying to decrease my Effexor. It hadn't been my highest priority, but my blood pressure is up, and I might have to add another blood pressure medication. I don't want to do that. I take a very high dose of Effexor, 450mg, and high dosages of Effexor can cause high blood pressure. I have had 3 days of 375mg- cutting back on my night-time dose (cutting a pill in half). The first two days I woke up depressed, but it passed. No physical withdrawal symptoms, which is good. Today I woke up with no depression.

I hate thinking about meds this much. But I'm still trying to figure it out, so I guess I have to think about it. Especially if I want to be on less medication.

There was a time when I left it all to my psychiatrists to figure it out. It didn't work out too well for me! I was in and out of hospitals and on tons of meds. But perhaps I have bad psychiatric care to thank for making me more proactive about my own care, and realizing that I am my own best expert.

This is not going to be the year that I can try to do too much with med reduction. I have to be studying for a certification exam that I am taking at the end of the year on top of full-time work, it is going to be a very difficult year. If I can get down to 5mg of Zyprexa and maybe 225-300mg of Effexor, I'll be happy. Or so I say now...