Meds I Still Need: Provigil (I know for sure)

I've been trying to reduce my meds, my dosages. I'm trying to see how little I can take. Of course I do it slowly, carefully. And if it doesn't work, I go back on it. So far I am off of Ambien, Abilify, and Wellbutrin. But still on quite a bit.

I've been taking 200mg of Provigil 2x/day. I wanted to go on it for my ADD- the conventional stimulants give me tachycardia, so they are now out. And I feel like the Provigil has changed my life. Plus it helps with my depression.

Of course, my insurance company would not pay for it. And, at the dose I take, it costs more than my rent. Buying it in America is not even an option, unless I want to live in my car. So I buy an unapproved generic from India. I've been doing this for a while with no problems. Well, this fall I waited until the last minute to order it- and then it never came. I waited and waited... and they said it was backorderred. And I didn't know where else to get it from.

So I got a prescription from my psychiatrist for 10 pills with a few refills, to fill here, until it came. And then I went to the hospital pharmacy to fill it, hoping that with my employee discount it wouldn't be so bad. But when they told me it would be 259 dollars for 5 days worth, I just couldn't do it. I walked away.

OK, I thought, I can do this some other way. I bought ginseng and ginko and choline and various brain-promoting nutrients. I allowed myself a second cup of coffee in the afternoon. And I have to say, these things did help some with my attention. Not like the provigil, but maybe 50 percent. But I had forgotten that Provigil also has an antidepressant effect on me. And within a week I was so depressed that I had decided that my life was over and was plotting my death.

I had just enough energy to drag myself to the pharmacy and fill the prescription. Within an hour I started feeling better. No, not all better, but some. It has taken me about 2 weeks to get reasonably back to normal.

Meanwhile, I had decided to try Nuvigil. My doctor thought it would be easier to try to get my insurance to approve this one, because the drug company is trying to get everyone on Nuvigil before Provigil goes generic, and they are giving insurance company lots of incentives. And even if I got denied, it would still be cheaper, plus hopefully I would only have to take it once a day.

Of course I got denied for Nuvigil. But then the Provigil came in the mail. I feel like ordering my next 3 months worth already, so that I will never run out again.

I got so depressed so quickly- it was really bad. Of course, I really don't know to what it extent it was a withdrawal effect, but I doubt it all was- I went off of the stimulants cold turkey a number of times without much trouble except a little fatigue and tremendous hunger for about a week.

The other drugs I know I need for my mental health are my Effexor (high dose), my thyroid hormone (and it has to be Cytomel, not Synthroid), and the birth control pill. My Zyprexa I've finally gotten down to 2.5mg, and I'm just too scared to try to go down further. I've never been manic since I started taking it. And as for my Zonegran- well, I suppose I should be on a mood stabilizer, especially if I ever want to get off of the Zyprexa. It is the one I have tolerated best, least side effects, and it even helps with appetite and depression. But if I do stay on the Zyprexa, maybe I don't need the Zonegran?

I am really the least medicated I have been in years. And having the least sedation/side effects. I am taking a ton of supplements- more about that later. So lots of pills to swallow still. But increasingly, fewer and fewer of them are conventional drugs.

A Sign of Spring

Finally something to celebrate this spring other than no longer needing my light box. My first pedicure of the year! I only started getting them last year, and I went the whole winter without. But this was the first warm weekend that I was finally home, so I walked over to the nail place in my flip flops and had it done.

For 20$, nothing else feels so luxurious. I'll make up for it somehow in my spending. I don't have my homecare patient anymore, and money is very tight. Extremely tight. I really need to get a second job, I just can't stand the thought of it. Not right now.

I weighed myself this morning- over the past year I have lost 30 pounds. Some of it is due to the metformin that my doctor put me on to help with my weight- it can help with weight gain from antipsychotics. And then it has been the no time to eat diet, and now the no money to eat diet! Occasionally I actually count my calories, but I haven't been very consistant with that.

Renewed

Back on my full dose of zyprexa, and with the increased daylight, my mood is working its way upwards. Out of the depth of depression, to somewhere it hasn't been in quite some time.

And then I spent my weekend at a continuing education course- one that I wasn't even sure I wanted to take- getting trained on a new stroke rehab device. And I am stoked! I am so ready to go out and start treating stroke patients again! Just when I thought I had maybe burnt out on stroke.

I have to admit, I've been looking for the "magic bullet" in stroke rehab ever since I started studying OT., and of course never finding it. I have my hope in NMES, CIMT, robotics, imagery, and now the SAEBOFLEX. They are all tools, and some of them help different people. Unfortunately robotics are still prohibitively expensive for most places.

I really think that to get the arm back after a stroke, you need to train like an athelete. It's a 9 to 5 job, at least 5 days a week. And yet, we get 2-3 hours a week of therapy with our patients. The question is, how to get them to take it home, to keep practicing. And these are all some ways to do it. To continue the therapy outside of therapy. But only for the right patient. Some don't have the time- they need to get back to their job. Some don't have the resoursces, the motivation, the concentration, the cognitive capacity.

And then there are always those for that, the stroke was too severe, the deficits are too severe, the arm just isn't going to come back in any kind of meaningful way.

But with the Saebo, I have something new to offer my patients. A new tool.

And now I can't sleep, despite an Ambien and a klonopin. And I have to get up very early!

"I still love you"

I got an e-mail last night from an old boy friend that was 4 words, "I still love you." You might think that is sweet or romantic. It has me angry and confused. It ended badly, and he owes me a big explanation, because he literally disapeared on me.

It took me a while to get over this, and to stop obsessing over what the real story was. I know I let my guard down with him and ignored too many danger signs- but I was in love and going with the feeling. I just wanted to go with it, just wanted to surrender to the experience.

In the end I don't regret it- and I miss the person that I was when I was with him. Where has she gone?

I don't think I've really been happy since I moved away from the city and took this new job. Even when I wasn't clinically depressed, I haven't felt joy. (And I've spent a good portion of it clinically depressed!).

I was miserable a lot living in NYC. But, I felt joy a lot too- well maybe not quite "a lot." But enough to make it worth it. I had enough moments when I would think to myself, I'm glad I didn't succeed in killing myself. I'm not having these moments.

Maybe I need a new job. Maybe I need a new man. Maybe I just need sex!

I've been in this really horrible depression this past week, but the past couple of days I am starting to come out of it- thanks to an increase in Zyprexa. Whatever is wrong with me, an increase in Zyprexa will usually fix it. Too bad about the side effects.

I think a return to internet dating is in my future.

Cycling

The seasons are changing, spring is coming. Plus some stress at work. And now, I'm cycling.

In the mornings I am so down, I hardly get out of bed. Then as the day progresses, I start to feel agitated and irritible, until I think I am going to jump out of my skin. The only thing that soothes me is driving- as long as there is no traffic.

At night, I don't want to go to bed. But with the help of Ambien, eventually I do. Only to start the whole thing over again the next day.

Stop being stubborn girl, raise your meds! I know what I need to do, I just don't want to do it. But I will, tonight, because this can't go on.

At least I know I don't have to do my light therapy anymore this year! I do it all winter. And then, late March or the beginning of April, my mood shifts, and I know that it is over for the year. Some years I get a few days of mild happy hypomania, but no such luck this year. I'm just miserable.

Back to Work

I'm recently back from a conference that was really good. Plus, it was really good to get away. Now the reality of getting back to work.

I had 3 days of work this week, and on 1 day we were 2 staff down. The rest of us had to cover the patients. It was a really bad day- I had two hours when I had so many patients stroke patients at the same time that no one got good care at all. That really eats me up- by the end of the day I wanted to quit.

Today was better, thankfully. And I have an interesting new patient- just about the most apraxic I have ever seen. When a patient is "interesting," it is never good for the patient. If you are a patient, you want your situation to be mild and boring.

I "only" stayed 1 hour late today- which to me felt like getting out early. We don't get any allocated time for paperwork, phonecalls, equipment orders, etc. We are expected to do this during treatment sessions, and then stay extra as necessary. But unless I have a very high level patient, I don't usually get any notes done during treatment time.

I'm in a complaining mood, so I'd better stop here. Healthcare is what it is. And I want everyone to get excellent care, and get all the care they need, and get better. And I don't want to have to put in long hours for paperwork. And I don't want to have to take a pay cut so that we can increase staffing levels or have dedicated hours for paperwork. I want the impossible.

Mostly I wish I could afford to work part time for a while. But that's not an option. Plus, I need health insurance!

Too much drama!

It was a very high drama day at work. Patients, families, fighting between patients and their families. Not good. By the end of the day, I felt like I needed a drink!

I don't like yelling or angry voices. And I can't stand meanness- although I have never figured out how to deal with it, whether it is expressed towards me or someone else. I stay calm, I say reasonable things, and I come away feeling like I was walked all over.

Assertiveness is something I am still learning. And with some people you have to be more assertive than with others!

Withdrawal or Relapse?

I'm lowering my antipsychotics a bit. I think I am having withdrawal symptoms. I hope I am not having symptoms of relapse. No paranoia, as I've had in the past. But I am not sleeping so well, I am anxious, I want to cry, and my heart feels racy. On the up side, I feel more awake and with it. This morning it was easier to get out of bed, it wasn't so much of a struggle. And I feel somehow more present. That veil that I feel is often there between me and the world is pulled back a bit.

Maybe the threat of tears, the anxiety, the insomnia, the racy heart, it is all transitory withdrawal symptoms. Or maybe some of it is here to stay. Maybe I have to take a little more bad in order to get a little more good. I'm okay with that, as long as the bad feelings are not crippling depression. But more tears, a little anxiety, I'm okay with that. Better than the numb I've been feeling recently. I just hope that the insomnia and heart pounding go away- that's no fun.

I've tried to get off of drugs before- and then got scared off by the withdrawal symptoms. But I'm doing it much more slowly this time- it seems like it is going to take forever! Then again, this strategy also means I spread out the length of time I'll be dealing with the withdrawal symptoms.

"Back in the day" before I was an occupational therapist, when I was in and out of hospitals- I used to get put in to hospital so my doctors could take me off, and then put me on, medications as fast as possible, and let me get every side effect in the book. And I would lie in my bed all day, too drugged up to attempt to go to the groups. I was a very bad patient. I always refused to go- even if it meant being locked out of my room. Until I got too bored- which meant I was feeling better. And then I would get into trouble for being too opinionated sometimes.

But now I say that I can never make another major medication change until I retire! I don't have a job where I can afford to not be functional, where I can be drugged up. What this has meant is that things have been added during breakthrough episodes, but we never want to take the risk of taking things back off. So over the 6 years I've been working, I've increased from 3 meds (an all time low), to 8. And that is just too much. So I'm taking the risk now of trying to get off of 1 or 2 things. And hopefully 3 by the end of the year. That is my plan, at least. And the best laid plans...

Disapointing News

There is a journal article in the February issue of the Journal of Psychiatry on rates of Tardive Dyskinesia with the Atypical Antipsychotics. And it finds that they are not much better than the older antipsychotics, as was previously thought.

I didn't read the whole article, only the summery on Medscape, so I don't know all the details. They do say at equivalent levels (presumable of D2 blockage). Perhaps the atypicals can be used at lower equivalent dosages? And did they look at Seroquel separately? There is some theoretical reason to think it might be better. I never understood why the other atypicals would be better.

We do know that the atypicals are less likely to cause short term extra-pyramidal side effects- and that was thought to indicate a decreased propensity for longer term tardive dyskinesia. But it doesn't. And, I have to say, that I had EPS side effects on Risperidal and Geodon (although not as bad as Haldol)

If this is true, we should be seeing an explosion of tardive dyskinesia among the non-schizophrenic, as the atypicals are now being used for everything from anxiety to mood disorders to insomnia. Where is it? Is it too soon for TD to have developed? Maybe these drugs haven't been on the market long enough. Or maybe this is just one study, and isn't the whole story.

The study did find that risk of TD with antipsychotic use was much more likely among the schizophrenic than the non-schizophrenic- I think previous studies had found the reverse. So I am a little confused.

But I am all the more determined to get off of my Abilify. That will still leave me with a little bit of Zyprexa. Maybe someday I'll get off it, but not soon I think. In the mean time I'll keep taking all my antioxidents and lots of vitamin E at night with my Zyprexa. I'm hoping they will prevent TD.

I wonder if this study will change prescribing patterns. I have long thought that doctors are much to quick to prescribe antipsychotics to non-psychotic people. I have met doctors who will not prescribe benzodiazapines, but they will put you on an antipsychotic for your anxiety instead- something I think is totally backwards.

It would have been nice if the atypical antipsychotics could be the new wonder drugs in psychiatry. I have not been manic since Zyprexa, it has been my wonder drug. But as time goes by, and I start to forget how bad it was to be manic, I start to wonder at what cost I take this drug.

Patients Who Break My Heart

I'm having a lot of these recently. A lot of late-state Multiple Sclerosis patients. One who is clinging on to indepedent living by a thread, and I don't know how much longer he can do it. And one who is so involved I am teaching her how to use a mouth stick. At home, she spends her days in bed. And a stroke patient whose vision is so affected that, while he might be able to go back to work eventually, he'll probably never drive again. And he lives alone. Lots of changes are going to have to happen in his life.

I am biased. When someone is approximately my age, it affects me more. I remember my first ICU evaluation. It was a woman with a devastating stroke, who was exactly my age. People my age aren't even supposed to have strokes! Or so I thought, before I went into this field. I had tears in my eyes as I did the eval, and hoped no one noticed. But she did amazingly well in rehab. The arm never came back, but she is walking and back at home with her kids and out in the community.

Working in this field grounds me. I often say that if I was a wedding planner, if I worked with happy people all day, I'd have to shoot myself! Instead, I am reminded daily that I have no monopoly on sufferring or difficulty. I can't feel too sorry for myself- although I have moments when I still manage to, but not many. Everyone has their own story, their own trials, their own battles, their own joys.

And I am inspired daily to see patients who manage to have good and productive lives despite considerable disability. I am constantly amazed to see how two people with the same level of physical disability live completely different lives, have different levels of handicap. There is a concept called "resiliance" that is being talked about a lot recently. How well you adapt and respond to adversity.

I think that depression is the opposite of resiliance.

Snow Day #2

OK, I wimped out. I made the mistake of watching TV news this morning, and of course they always have to play everything up. Dire warnings, don't go out unless you have to. Pictures of cars on the side of the road and accidents.

So when I called in to say I'd be late, and they told me that my first patient had cancelled, I decided I wasn't going in. Not for two patients, who might not even show up. So I gave word to cancel them, and I'm staying home. Thank God for the great office staff who actually made it in on time.

But it really doesn't look too terrible outside. Not good, but not a blizzard either. I've driven in worse. Why did I get all scaredy-cat now? Because I had many years of not driving while living in cities, I just went back to driving this past April. And I haven't done any winter driving in almost 10 years.

When I think about all the meds I was taking 10 years ago, I probably shouldn't have been driving at times- although I was very careful not to take certain meds before I drove. And then there was my manic driving, when I could not stay within the speed limit. I got 3 speeding tickets. Of course lots of people speed without the excuse of mania.

Now I am a much better driver, and much more comfortable driving. And not manic, and not taking any benzodiazapines. And I have a great little car, a Honda Civic, which I am leasing. I wouldn't want anything smaller, living in the northeast where I have to deal with snow occasionally.

So how to enjoy my snow day? I'm definately putting on my boots and getting outside. Maybe I'll walk to the chinese restaurant for lunch. And I'm going to study. I really have to study.

Snow Day

Today we had snow. I've lived in upstate NY, and life there just goes on, but here people aren't so used to it. I saw all of 3 patients today, and some therapists saw less. Yes, I work in outpatient, where patients have the option of coming. The inpatient therapists had a full caseload.

It was a fun day at work, very laid back. A lot of joking and playing around. A lot of catching up on some paperwork that really needed attending to. Plus were were told to call tomorrow's patients to reschedule or cancel therm- but 3 of mine are still coming in.

Tomorrow may be worse. The snow is supposed to continue all night, and the temperature is supposed to drop- the roads will probably freeze. But I have every intention of going in to work tomorrow. I don't want to take another PTO day for a snow day. I have 3 patients to treat, and paperwork to do. But I'm going in a little late, after my parking lot has been plowed and the roads are cleared.

I wonder if we jumped the gun with cancelling tomorrow's patients. Maybe it won't be so bad. Or maybe it will. Weather is just not an exact science.

So tonight I'm relaxing with a cup of hot chocolate and watching the olympics. The wind is picking up outside, and it gives me a cozy feeling to listen to it, dry and warm. I haven't been saying this a lot in recent months- but sometimes life is good. If only for a moment. What is life but moments?

Good Day at Work

I had a good day at work, a good occupational therapy day. I had enough patients, but not too many. Enough time to give my patients what they need. Good patient interactions.

I had a discharge today, one of my long-timers. Someone who has really come a long way- one of the people who reminds me why I do this. I'll miss her.

I think the day was almost all stroke patients today, which can be very intense. Plus I had one workmen's comp patient, and the case manager came today to observe therapy, which can be a little awkward. But I think it went OK.

This evening I am exhausted, but not from work. It is that time of the month, and when I get my period I always have 2-3 days when I get really severe exhaustion. I feel like I can't move. Usually it comes with depression, this time it did not. I just have the exhaustion. This is why I take the pill so I only get my pill every 3 months. I couldn't deal with this every month. I used to spend a lot of days in bed. Or, I used to get crazy every month. To say nothing about the cramps I get- but now I've discovered Aleive, and if I take it at prescription strength, I'm pretty OK.

So no, I didn't make it to the gym, or clean, or study hand therapy this evening. I just sat in front of the TV and melted into the couch. Until I finally got enough energy to get up and eat, and now to sit in front of the computer before I take meds and go to bed.

I hope I have more energy tomorrow. One of my co-workers is out, so I will have some extra patients, it is going to be a busy day. Not like today. I have a feeling I won't have so much time for giving my patients the individual attention I want to tomorrow.

When I am treating orthopedic patients, I don't mind treating more than one patient at a time. In fact, the idea of just treating 1 hand therapy patient at a time, all day long, sounds really boring to me. But most of my caseload is neurological right now, and I feel very differently about that. My neuro patients I do wish I could give one-on-one treatment for all of their sessions. Unfornately, most places don't work that way anymore.

The stroke patients coming to outpatient therapy are getting more and more involved, as patients get kicked out of inpatient rehab quicker and quicker. Many of them come to us and they can't walk, they can't transfer independently, they can't dress themselves, they can't sit unsupported- I am starting to feel like I'm doing inpatient rehab at times. And I just feel bad for the patients, because outpatient doesn't give them the intensity of therapy that they need. They need more- and we are their last stop.

Of course some patients will continue to improve on their own, after the end of therapy. These are usually the higher functioning patients. The patients who have less function, and can do less on their own, they are much less likely to make gains on their own- and more likely to decline after discharge from therapy.

Disabled?

I finished my taxes today using Turbotax. And with my dad's help, too. It was a little complicated this year because I moved from one state to another and changed jobs. Plus I did some home care work as an independent contractor.

Turbotax gives you a lot of prompts and asks you a lot of questions. At one point, it asked me if I am disabled. And I kind of wanted to say yes, but I kind of didn't. It is really a very good question. Am I disabled? Prehaps the better question is, "How disabled am I?" It isn't all or nothing.

When I clicked on the "learn more" link, it didn't sound like I qualify- or if I did, that it was going to help my tax situation any. But it didn't stop me from thinking.

I have been on social security disability. But for the past 6 years I've been able to work full time- although sometimes only hanging on by a thread. Really, there are times I don't know how I have kept going. It is my patients, really. When I have a patient in front of me, I can pull it together. I can do what I have to do. Now, the paperwork may start to slide when things get bad. It is not so compelling as patient care.

I actually have two disabilities. I have my mood disorder, and I have a learning disability, of some sort. I've been told I have dyslexia, ADD, and a variety of other things. But of course I don't have all of these things- I just have one brain that we try to put labels on. I just have a bad brain! I have bad brain syndrome.

What does it mean? It means I don't always know my left from my right and my handwriting is lousy. It means I am terribly disorganized, and constantly struggling with that. And mostly, it means that I am extremely slow with my paperwork. When the paperwork is not that bad, this isn't so much of a problem. But the worse the paperwork, the more of a problem, the more of a disability it is. So, long hours, but I manage.

And to the IRS, I am not disabled. I don't have any expenses that I can deduct due to my disability- although really, I think that my meds and therapy co-pays should qualify. And unfortunately, I owe a little bit to the IRS. And I owe one state, get a refund in the other. In the end, I actually come out a bit ahead.

But money is tight- and it is going to be tight for the next year and a half. Because I am going to be studying for the CHT exam- and until then I can't do a lot of home care or take a second job. But, I am going to have to do that in the future to pay off my debt and to save more for retirement. If I can just make it until then!

And I hope that this "disabled" person can study for and pass the CHT exam while at a job that is taking 10+ hours most days because of all the paperwork.

Comfortably Numb?

I read Medscape. It is a really good website geared towards doctors with the latest medical news. Recently, it referenced a recent article in the British Journal of Psychiatry, which found that people on SSRI's experienced feelings of detatchment, personality changes, and a decrease in both positive and negative emotions.

Wow. I love it when the doctors finally figure out what any patient could tell you.

But that made me think. And introspect. And in recent months, I think my level of numbness has increased- to the extent that I had really not realized because I was so numb. And I've recently added medications to deal with a depression. But the depression is over, it is time to come off these added medications.

I have no illusions that I will ever be medication-free. But I think that I really only need a subset of the meds that I now take- and I don't know which of those meds I really need. That's the problem. I can make my educated guesses, but in the end there is a certain amount of trial and error involved in seeing what I can reduce or get off of- and I need to function at a very high level to work. Therefor, there is this slow accrual of medication. Something gets added, and it stays there.

The last two medications I have added are Abilify and Provigil. I have to say that Abilify did really save me. I was having an exremely bad depression, I was about to quit my job I was so depressed. But the depression is over- and if I didn't need it in the past, I'm going to take the guess that I don't need it now. I'm feeling just too numb.

The Provigil I really hope is not contributing to the numbness. Because it is really helping with my concentration and energy. I have ADD, and can't take stimulants because they raise my pulse rate too much.

How is this numbness affecting me? First of all, I am a procrastinator. I need a certain amount of anxiety to break through this and actually get things done. I went on Effexor half way through graduate school for OT, after a suicidal depression. And after I went on it, I noticed that I was getting to class late and not getting assignments done on time- and not because I was depressed, just because I wasn't "inspired" to do things. I needed that anxiety.

I need strong emotions to function. And recently, I am not functioning at all outside of work. And it is no longer due to depression- I am not in mental anguish. Quite the opposite, I am just fine with sleeping all weekend and doing nothing. I need to not be OK with that.

So I am going off the Abilify, knowing that it is there if I need it, the next time things get bad (which they will, they always do eventually). I'm not foolish enough to do it overnight, much as a part of me wants to. I take 10mg now (5mg 2x/day), and I'm going to go off 2.5mg/week. Assuming the depression doesn't come back of course.

My depressions are so bad, they have taken away so much of my life- is it surprising that I'm willing to give up a little of myself to keep them at bay? That's the deal I made with the Effexor. The best antidepressant I've been on in some ways, but it also gave me the numbness. But not so much that feelings couldn't break through- it just took a little more.

But now I feel like nothing is breaking through. So I need to do something.

You may ask, did I talk to my psychiatrist about this, no. I'll tell him at the next visit which isn't for a couple of months. But he is very good about this type of thing. As long as I'm being responsible, he doesn't mind me adjusting my own meds. Warning: not all psychiatrists are like this! Some are real control freaks. And if you are not stable, or don't know what you are doing, adjusting meds on your own without talking to your doctor is a really bad idea.