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In desperation last night, because the music was so loud and unbearable, I took a PRN, Haldol 5mg. I knew I’d regret it at least a little today, because it would make me feel subjectively dull and that I'd be immediately unable to read. (Why is this? Well, first of all, it does something to my eyes so that they feel antsy and jump around and I can't keep them on any one word, but also it deadens my interest and motivation...or else it doesn’t stimulate them as Zyprexa does, which, mind you, I stopped.) The reason I decided to take it was that I knew all last year I had no problem with hearing music and that was when I was taking Haldol regularly. Also, Haldol was the one thing we stopped just before the music started. I thought, I might as well give it a try, though 5mg probably wouldn't make much difference, seeing as my usual dose was 15mg.
Well, I woke this morning, expecting nothing to have changed...but right away I noticed something weird: no music! I figured, okay, I just got up, it’ll start soon enough...But it didn’t! Okay, a little comes through once in a while, but only a bit, and very low and ignorable and intermittent. I am amazed. It has to be the Haldol, what else could it be? Only yesterday I heard the music so loud and insistent that it played right through our reading and lecture yesterday at Hartford Hospital/Institute of Living! Why would it just stop spontaneously today? No, it's the Haldol, that's a reasonable conclusion, I think. I know it looks obvious. I just have to convince myself of that.
But... again, it was also the Haldol that today prevented me from reading, just as I feared it would. This was the first time I had trouble in several months, ever since getting off the Haldol finally in February or March. My eyes were going nutty and I couldn’t get my mind to want to fix on anything...Until I impulsively took a teensy dose, 2.5 mg, of-- yes, you guessed it, ZYPREXA! An hour later, my eyes were fine and I could read again and felt motivated to. And still no music. Wow! Now is that a good solution or what? The only thing that might still upset the apple cart, but is not necessarily a problem, is: will the tiny dose of Zyprexa (cf normal dose of 10-15mg and my old dose of 35mg) cause weight gain? I’m willing to test it...carefully. Today at least I am not eating more than usual and don’t feel overly drawn to the fridge after having taken just the one pill, so that is a good sign...I will try this again tomorrow and see what happens. If it works consistently, I'll ask Dr O about it, though I know I should have gone through her to begin with...But to he** with that. I had to do something immediately.
But this regimen means I'd be taking four different antipsychotics...at tiny doses but it seems kinda crazy...I really don't think the Abilify 5mg adds anything or ever has, so I'm gonna ask to be taken off that. The Geodon is my mainstay, so I have to stay on that. The other two are just kinda tweaking things, so I guess that's okay, though I am unhappy about the idea of taking so many drugs of the same class. It really is necessary, and they aren't redundant. Each does something different, as I've so clearly pointed out.
So ends the long saga of my mysterious music, I trust and believe. I hope it never again becomes such a problem. Thanks to the many who wrote e-mail or commentary encouraging me. I really appreciated it.
The following are the lyrics to the songs, so to speak, the messages from the singing voices:
"The Police hate you, Wagner, police hate you, Wagner, police hate you, Wagner, for that." Last night, it was "Police hate W, Police hate W," but today it is clearly, "you, Wagner." I haven't been told what "that" is. I think I am supposed to know, but I'm trying not to, and trying not to speculate...
"We're coming, we're coming, we're coming back!" Ditto for who the "we" means. Tho' I suppose it only means the voices themselves, which is stating the obvious.
"Regarding this one, pray remove!" I fear they want me removed here. Note that this time I am "this one" in contemptuous third person, lowercase, whereas when they wanted to blame me a few days ago, I was The One in second Person uppercase, who had a Duty to do...
"Awful will our anger be, awful, awful, awful, awful!" mmmmmhh. Dunno what to do with this last one esp. repeated in many voices, single voices, sequential and harmonic, in many tunes and tones, sounding like like an opera or classical piece that focuses on one line as a repeated theme, changing it but keeping the words the same...Don't know how to describe what I mean (don't know classical music or the words used!) but I hear the music so clearly and wish I could imitate it to sing it! Now they are repeating all of the above lines in a frantic jumble of lyrics and melodies...Still later: After that final burst, they quieted a bit and subsided to a single muted theme without words, for a while at any rate.
Now I realize I'd better say something about not believing them, or Paula-of-the-lengthy- comment-fame and Dr O will worry...So, okay, I understand the above is not real, that it is a description of musical hallucinations that only I hear, no one else. But, I want to say, I DO hear them, and everything I say is the truth otherwise, is fact. How could it be otherwise. It is factual experience, even if no one else experiences it! How can you say it isn't? I could transcibe this music and make it "real" music if I knew how. If I were "mad Schuman," I would do so, as indeed he did, "channeling" Schubert! How can anyone say his music wasn't real??? Or that mine isn't? Just because it is unpleasant for the most part? Maybe if I could transcribe it, and thereby get rid of it, like catching a poem instead of letting it boil over in my head, I'd not mind this phenomenon so much...But I don't write music and don't believe this stuff is very good, not worthy of writing down, so it goes on festering and worrying itself into a bigger and bigger crack in the LP (can a crack in plastic fester? Oh, my mixéd metaphors!) Anyhow, you get my drift, I trust?
But I was talking about reassurance and I can do that: I assure them and all who read this that I am not going to listen to the messages I am given by these lyrics, no matter what they might tell me or command me to do, or seem to. I have made that commitment -- to staying alive and I intend to do so, and that includes all acts that so much as contain a possibility of threatening it. No, I can't always keep in my head the complete certainty that these voices are not real, not in the sense that they are ME...But I can refuse to listen. I hope that is enough to reassure you, cuz it is the best I can do.
After a near starvation diet of no more than 700 calories a day this past week, and no more than 1200 in general, I have gained 12 pounds since I started taking Zyprexa. In fact, despite that attempt to lose weight this week, by means of a drastic diet, I actually gained 4 more pounds, incredible as that might seem...So while I am not by any means overweight, yet, I am stopping the Zyprexa NOW, before it becomes the problem that it evidently is going to be no matter what I do or how little I take (or eat).
This is really a terrible situation to be in, because despite the constant and absolutely unceasing music no matter what I do, I had just started reading again, and had even renewed a couple of magazine subscriptions, thinking I'd turned a corner and would be able to read them...I don't think the Abilify will help as much as the Zyprexa does in that regard, alas, though I won't give up hope just yet...I guess if I find I can't read once again, I'll have to return to books on tape and Audible.com books...But there is something about the experience of reading a book that listening to one just can't match, though it definitely has its own merits.
One of the reasons I HAVE to stop the Zyprexa, whether or not I want to, is directly related to the weight gain (but isn't the weight itself): it's the risk that if the voices -- command hallucinations -- return, they will have ammunition to use on me that I will fully agree with ("Fatso" "What a lardass!" and so forth) and if they decide to order me to do "something" (dangerous to myself) about it, I may in fact feel so terrible as to act on what they say...That's the real danger. However much I don't want to take up space in the world, and don't have a right to, it's that very real danger that militates against my staying on the drug. I must stop taking it now, before I reach the point of anyone having to worry about my safety.
The en masse voices are singing God Bless America, a youth chorus with a men's choir, repeating it patriotically over and over for the last ten minutes... now they've switched to a Gospel hymn I don't recognize...Now it's I Gave My Love a Cherry in four or five part harmony but not quite finishing the piece before starting all over again so that the ending is never reached and the song has no point; parts get stuck too and repeat ten times or more before the record can get started again, the record being what's coming from the bedroom if it isn't actually a choir in there or the walls...Or a DJ playing a record (I don't think a tape or a CD can skip which is why I think it's an LP), it's also an old old song, not likely to be on CD...Sounds now like two competing songs, but it could be an attempt at polyphony with messages, two different lyrics going along with two different melodies! Polyphony and polylyricism! Now they are just doing tuning up tones, in preparation for another concert, the instruments too are tuning up...a reprieve for a while. Maybe I can read now for a bit...?
Later: While I was playing around with fonts here, they were singing the same oldie goldie folk song, with 3 men talking to each other in the background, no words distinguishable but ominous sounding, as if they were conversing behind the screen of the singing on purpose so I wouldn't be able to hear what they said...
Later again: now they've segued into singing or chanting, really: One, you're the One, you're the One, do your duty! One, you're the One, you're the One, do your duty! Duty! Duty! Do duty! Do Duty! Do do do do do Duty Duty Duty Dooty Dooty Dooty! Doooooooty d'ty d'ty d'ty d'ty d'ty d'ty d'ty d'ty...It has devolved into gibberish as they just play on that word and torment me. I don't know exactly what my duty is, but I know the "One" was capitalized, which doesn't bode well for my duty being something easy or minor...
They just started talking, singing, in pig latin, saying words like oomay and ootay and oozay (moo, too, zoo) which make no sense either as English or pig latin...Not to me at any rate...One man is talking in a monotone to the others, lecturing them, or is it me, is he lecturing me? I can't quite tell, it's all inside the wall, so the words are muffled and I can't pick them all out...He has a certain authority, though younger than I am, maybe thirty-something but he's not the deep-voice whose orders can't be disobeyed...I haven't heard him for a long time, though I've thought I heard him singing with the basses. But I don't think he sings, so I must have been wrong. If I heard him I'd be in deep s---
Wait a golddanged minute here! What am I talking about???? I forgot, I forgot, I forgot completely for almost the whole afternoon...Sheesh...They aren't real, Pam, they aren't even "out there." They are inside your brain. Your brain is causing you to hear things. They are hallucinations, and only that. There are no LPs being played by a DJ in the wall or in your bedroom. There is no deep-voice guy who has to be obeyed, nor yet a younger guy who doesn't... Something is irritating a part of your brain and triggering impulses of neurochemical activity that your mind interprets as hearing real sounds -- voices -- and naturally it wants to know why, so it has confabulated a story to make the voices have a reasonable explanation, however nutty the explanation might seem to someone else...OOOhhhhhh
Okay, so my brain tells me, through some neurochemical glitch, that I am "hearing" voices that are talking to me, when in fact that is false, what the brain is telling me is not true. Though I do "hear" them, it is my brain that is conjuring the false sound of sounds, not my ears actually perceiving sounds...No sound waves actually stir the tiny hairs inside my inner ear or impinge on my ear drum. In fact (I suspect) my auditory cortex may not even be involved at all (though scientists may not yet know whether this is true or not). My brain creates the feeling/perception that I hear these voices and my mind creates the story (the DJ in the wall playing LPs) to explain the feeling to myself, to make my experience jibe with the world as I know it...
So Okay, then, that's all the music is, that's all the singing is, hallucinations, irritating and upsetting, yes, but only because I forgot for too long that they were just my brain playing a trick on me. Now that I know that, they may still distract me, because I can still hear them, but I don't need to worry about what they are saying, because it doesn't matter. Whatever they say it is unimportant because I understand it's just a hallucination, which would be silly to listen to or take seriously.
Phew! Almost got caught there, almost, but not quite. This stuff takes so much work, and you've gotta keep on your feet, keep thinking, keep your ears and eyes and mind on alert all the time. Few people appreciate how hard that is, how utterly exhausting...I've gotta stop here in fact, because I've worn myself out. I wanted to write some about the Zyprexa and my ambivalence again, but that will have to wait till tomorrow or whenever I next write (if I remember). Anyhow, thanks for listening to this verbal spew.
I went to the grocery store by myself the other day, the first time I've done that in quite a while. To the observer, it was a successful foray, in that I went, I shopped, I bought and came home with food for the refrigerator. But the entire trip was an exercise in performance art...
What do I mean by that? Well, what I mean is that I was aware, from the moment I first approached the store, from the moment I stepped out of the car and was seen by another person, that I had no right to be there as me, that was the rule. But if I playacted being someone else, I could "pass" and would be allowed in. So I took on the identity of a permitted suburban shopper mom, squared my shoulders (only figuratively) and marched right in...Actually, I slid a cart inside sideways so as to take the least room and got out of the way as quickly as possible. To buy fruits and vegetables I held my list up and pretended to be clearly preoccupied with it, definite about what was needed, and never vacillated about my choices...I knew if I were wishy-washy and dithering, my cover would be blown and I'd be ejected from the store...Just doing this, and yet managing to get what I wanted, and making decisions that I hadn't already made on the list, took an enormous amount of energy...It was all I could do not to talk out loud about it, that's how close to the surface the strain was.
Eventually, it got to be too much, I couldn't be the supershopper mom any longer, and so I had to leave the produce aisle, finished or not.
I headed elsewhere, anywhere else with few other people...There, the discount aisle is not crowded, let's try it, browse the sales items. But someone enters the aisle just behind me and I realize it is a man who was just in the produce aisle and he has followed me here. I wonder what he wants. I stop to look at the discounted Gator Ade. He stops too, looking at Big Bag Chips. I move on and shortly after he does too. What is he going to do? What does he want? I'm not who he thinks I am, I'm not the super shopper mom he saw back there...I push my cart quickly to the end of the aisle and instead of rounding the corner into the next aisle, I head all the way across the store, crossing lines to the cash registers, heading towards Dairy.
When I finally get there, I look around in trepidation. Phew! He isn't there! If I need anything in the rest of the store, I'm going to have to skip it now. Nothing is going to get me to go back to the aisles.
In dairy, I picked up half and half and then, with the help of my list again, pretending I was the super shopper mom again because for her it was acceptable, I picked up several cartons of low calorie dairy deserts. Now, the frozen foods and I would be done.
At the cashiers, I started to bag my own groceries to be helpful, until a man in a wheelchair came up and groused that I was so impatient, couldn't I wait a single minute? Then the popsicles, sugarfree because I'm trying not to gain weight on Zyprexa, came down the conveyor belt: "I can tell someone has a lot of kids!" he said with a strange look. I knew he knew...But I was not going to tell anyone. "Yes, I have three," I said. "Ah, so that explains it--" My face was stiff and I was nearly in tears by this point, but super shopper mom had to get out of the store intact or else...I finally was allowed to leave. I pushed the cart through the parking lot...But where was the car? It wasn't there...It wasn't...Where was it? I couldn't remember where I'd put it...There I was in the middle of a half empty parking lot with groceries under a sunny sky in early spring and I couldn't find my car! (I know, it's beginning to sound funny, but it really wasn't...the whole shopping trip had been completely hair-raising and a totally exhausting and debilitating effort...I had only just managed to keep myself together.)
I did finally find the car and get home safely, so I can end this story on that happy note. But it is not anything out of the ordinary for me. There are all sorts of rules like that, rules that force me to be someone else, or do various things, or buy certain items...various tasks to toe the line in order to pass the test and be acceptable and allowed in...Otherwise, I'm talked about and stared at and hated and evicted eventually...So on and on it goes. More another time. This is all I have the energy for now.
The voices are back, I'm afraid, though I refuse to listen to them. That is, I ignore them if they order me around. No, I can't help being distracted by them, but I don't need to actively pay attention -- and there's a big difference between the two. Right now I can't tell you what they are saying, as they have retreated to the background while I'm writing about them. But just before I started this they were exchanging commentary about me -- deep male voices, a whole group of them pounding and pounding in my ears -- repeating over and over about how I was too old and fat and evil and stupid, one insult after another...I heard it all, yes, but I refused to listen in the sense of taking it in and believing it...Or I'm trying not to, which is the best I can do, since I refuse to take another pill or increase the ones I already take to try to get rid of them altogether. I can read, finally, and I don't want anything to upset the delicate balance that allows me to do so. As with defying the Zyprexa-induced appetite, I figure it's a matter of self-discipline, and I'd better get used to applying it as well to the voices, as they aren't going to go away otherwise. What else can I do?