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Reconsidering antipsychotic medication and elevated liver levels: My visit to Dr. P today
My visit with Dr. P was so-so, or okay, or interesting, depending on how you look at it.
We discussed my liver levels and why the heck they are elevated. I guess she’s just doing her job wondering if she should change my antipsychotic medication, Abilify, to something else. She notes that while I was not on any psych meds in July, my liver levels were okay, and now my liver levels are not okay. Also, she feels my thyroid med should be adjusted, and Dr. K, my primary care doc, wanted to hold off on it. But Dr. P says if we adjust the thyroid med, I might sleep better.
Right now, it showed up on the blood test that the TSH is high or low or whatever, meaning that the synthetic thyroid hormone I take should be tweaked. This is done purely by blood level. These thyroid meds are not psych meds. The thyroid is a gland, part of the endocrine system that controls many body functions. My thyroid shut down many years ago. This is quite common among folks that took Lithium and it’s not a big deal, or so they say. If your thyroid has shut down like mine has, and you don’t take the thyroid pill, you can get extremely messed up over time. Dr. P said this may be why I get cold easily.
Regarding the Abilify, Dr. P went down the list of antipsychotics and said they basically all get metabolized in the liver and can mess up your liver…gee. Lovely. She asked me about Haldol and I said I did not want to risk TD. She mentioned Risperdal and I said I cannot take Risperdal because this med gives me TD as well. Then she brings up Seroquel.
She’s got to be absolutely kidding me. Hate to use the word Evil but that’s what the stuff is.
Dr. P, the Seroquel caused the following:
It caused REACTIVE HYPOGLYCEMIA, which I still have.
It caused FOOD ALLERGIES to WHEAT and MILK, which I still have.
It caused me to more than double in size. Subsequently, I was discriminated against, not only by the general public, but even worse by the medical profession (I have a lot to say about this), I suffered low self-esteem and a knee injury. I was a shut-in for over three-months because I could not walk and paid $500 to people who walked my dog, because I couldn’t.
Then, the plot on the part of the docs that originally gave me Seroquel in large doses (year 2000) to get me to gain weight backfired and I had a relapse with anorexia nervosa and almost dropped dead.
No, Dr. P, no Seroquel, thank you. I don’t take weight-gainers. I know better. You don’t give them to people with a history of eating disorders, remember?
I told her I was walking a tightrope with paranoia, that I didn’t want to raise the Abilify dose and didn’t see stopping it as an option, either. But I sort of do see stopping it as an option…well, maybe. I told her I have to be very, very careful about how I think, that I can’t get too negative or it gets into the domino effect and turns into paranoia. I gave the example of how I get edema, and how that dominoes into feeling physically lousy and that “heavy” feeling, how I “feel fat” and don’t want to eat. I could say that I “trudge” instead of walk, and the bounce goes out of my step. People say that it doesn’t slow running, but of course, it does, because it’s like carrying a large canteen of water inside your body while you run and while you do everything. If you have edema, your body has actually expanded to accommodate extra fluid inside your body. This past week, my skin was stretched, cracked, and bleeding again. Old memories were bugging me and making me feel negative. This was bad breeding ground for paranoia. Yesterday morning, the edema had improved, and correspondingly, so did my attitude, and my running speeded up as well. I did my eight laps faster than ever before.
So Dr. P asked me when my next appointment with my primary care doc was, and I said, Tuesday. We talked about other stuff and she gave me anther sleeping pill to try. I told her about how the other ones didn’t work. I asked about the side effects of this one and she said, “Sedation.”
Well, gee, Dr. P, what else?
She said she is giving me a pediatric dose, and if we have to go lower, she’ll give me the liquid form. “Kiddie dose,” she called it.
They give this stuff to kids? Why?
I don’t feel very good about drugging kids. Well, never mind that. I just looked up this drug. It’s like, wicked addicting. Doesn’t exactly sound like something I want to take. Oh well. Should I even try it one night? I”m kinda nervous about popping this stuff.
“Brain Predators” You Tube, about kids taking antipsychotic drugs
http://www.youtube.com/watch?v=HGHB2qTdreQ
Thanks, John! I put a comment on there.
It’s so damn depressing seeing the kids line up at the “med window” for drugs. I saw them asking for their Seroquel. I mean, if you want an appetite increase and they tell you that’s why they are giving you the drug, that’s one thing. But they are lying to patients, telling them that drugs such as Seroquel and Zyprexa, which cause extreme weight gain in many patients, are for anxiety. It’s heartbreaking hearing the kids ask for more and more of these drugs. They have a calming effect, sure. Guess that’s what lures them in.
While they’re there on the unit, they will probably get hungrier, and maybe to the hospital that’s desirable. After all, the faster the kids gain weight, the faster the hospital can get them out of there and get the next patients in for fattening up. It all depends on weight. The hospital can use patient weight gain as statistics to show their “success rate” and that ensures their funding.
When these kids get out, and have free access to food, guess what’s going to happen? That’s right, one day, they will find themselves ravenous from the drugs. Then, the binge eating nightmare begins.
There was this nurse there that said she’d never lie to me. I believe this. When I told her how heartbroken I was over the use of antipsychotics in this deceptive manner, she did not argue with me. No, she did not deny it, and surely, if I’m totally off base on this, she would have said so.
By the way, my TD came back. It’s real subtle and my guess is that it won’t get any worse. It’s mostly in my thumb, believe it or not. Very strange indeed. I had it in my entire right hand about a year ago, maybe a year and a half ago, remember? It went away completely a month or two after I stopped the antipsychotics, cold turkey, last year. The reason I stopped them was because I didn’t give a damn. Anyway, it all turned out for the best.
A while back…you know, I never really thought about this….I had this thing in my toe. Like my toes were restless. I rubbed my left big toe against the one next to it repeatedly. I could not stop this motion. This was like 20 years ago. I had been on antipsychotics for five years. I rubbed the toes together so much that my left second toe is now deformed. Isn’t that weird? I’ll show you a photo sometime.
Thought for the day
I have many thoughts today. Here’s one.
There was a conference at my college on March 10th, that is, last month, on the Occupy Movement. I just found out that this happened. I hadn’t known, cuz I was wicked out of it for a long time.
The conference was held at Goddard College’s Plainfield, Vermont campus. I watched a slideshow recap of the event. I looked at the people’s faces. Many people were my age.
When I came home from the hospital at the end of February, there was a lot of snail mail waiting for me to open. Maybe there is some snail mail from Goddard about the event, around here somewhere, in a “to be opened” pile.
It is 2pm. I haven’t gone to the mailbox yet. I am scared to walk from my apartment, down the hall, through the lobby door, to the mailbox area, and back. Someone will see me, and say, “She’s fat.”
For years, I’ve been collecting my mail when nobody has been around. Much of the time, when I walk the hall for any reason, I LOOK BOTH WAYS. And then I decide whether to proceed.
The other day, they were sitting there near the door, staring at me, with their little eyes. Watching me like they were going to pounce. I didn’t know where to put my own eyes. Should I look straight ahead? Should I look back at them? Tsk, tsk.
One has her knitting. She doesn’t actually knit, she just holds it. The others sit there and stare stupidly. Get a life.
Sometimes, to tell them Fuck Off, I wear short sleeves, open my mailbox, and slide my skinny, skinny arm all the way down into the way-back of my mailbox.
I love watching them shake their heads at each other and mumble in their language. Yeah, fuck off you assholes.
I’m sure that at the Occupy conference at Goddard there was no height and weight requirement. I didn’t see a scale in that slide show. I didn’t see any banners advertising diet pills.
I saw, “REMEMBER CHERNOBYL.”
You know, I do. That was one heck of a long time ago. 1986. I was in the state hospital in 1986, just down the road from here. The place is closed down now, just a bunch of grass and stones that I know of. I’ve lived in this town since 1987. January, that is. Same phone number. Still.
I had a TV in April of 2006 and I saw the news about Chernobyl. I don’t know what I thought. Probably not much. I was wicked drugged up. I got rid of the TV long ago and a lot of the drugs, little by little getting rid of the rest of the drugs.
I’m now at 250 Topamax, 150 Imipramine, 150 Trileptal, 200 Lamictal, and 100 Synthroid.
Topamax used to be 300, and was 350 for a short while. Trileptal was 600. Lamictal was a whopping 600. It was a wonder I could even stand up straight. A year ago I also took the antipsychotic medications Abilify and Risperdal. I stopped these cold turkey with no bad effects. A year previously I stopped Thorazine. I had Tardive Dyskinesia, according to my psychiatrist, in my tongue and one hand. I am fortunate that I have stopped all antipsychotics just in time and no longer have these problems. I now no longer experience any hand or tongue movements. Usually, TD is permanent. I was one of the lucky ones for whom TD was not permanent. I have seen some very, very sad cases.
After the Chernobyl disaster, many people and other living creatures developed cancers and all kinds of diseases from the radiation that spread all around the area. People were born with Down’s Syndrome, Spina Bifida, and other genetic alterations due to this radiation.
I remember there was the Star Trek episode where this kid had some weird power. He was an adolescent. He was playing chess with Captain Kirk. I guess he lost, and then got mad. He turned his head and screwed his eyes funny and melted the chess pieces.
I picked up one melted chess piece. It was still warm, but cooling quickly. It would never be the same again.
You have to be careful what you say to kids about their weight, cuz you don’t know how they’re going to react. If something you say, no matter how well-meant, hits them the wrong way at the wrong time, they may never be the same again.
That’s why I’m scared to walk down the hall right now, walk into the rental office, and pay my rent.
I have checked my bank account and I the check won’t bounce. That’s not the problem. It’s those ladies in the office. The way they look at me. Up and down. I always plan ahead when I walk in there. Always. Plotting and scheming. Engineering what I am going to say to them as I hand them the check. And I wonder what they’ll say about me as soon as I turn, receipt in hand, walk out of there, and the door clicks shut.
I’m thinking, “Phew! I did it! Another month!”
Welcome to my life.
Trileptal reduction–dose cut from 600 to 300–it’s been over a week now–progress report
I’m okay with it. I’m sleeping fine. I’m definitely not manic. I am not having crying jags as I was before I got on Trileptal, nor am I emotionally labile. I am not having ups and downs. I am not going through eating binges. My eating is progressing about as you would expect. My commitment to improvement in that area has increased because of circumstances in my life that give me motivation to eat well and maintain a healthy body and mind. This has nothing to do with the Trileptal except that the lowered dose has improved my running ability, lessened my chances of injury, and has allowed me to run on the treadmill in addition to running on the track. So I guess it has a lot to do with the lowered Trileptal dose indirectly improving my feelings about my body–and, my ability to care for my body sensibly.
Let me explain to those of you just popping in out of cyberspace: Trileptal has the side effect of ataxia. It’s a common side effect. Ataxia is a weakening of the extremities, namely the wrists and ankles. You don’t notice it in your wrists unless it’s pretty bad, and in that case, you might have a little trouble typing, or you might drop things or have trouble lifting things. But weakness in the ankles means you “sway” while standing. It is noticeable if you put your feet together and hold your arms out in front of you. But for many, it affects walking. For me, it meant leaning on something while waiting for the bus, and needing to stand with my feet separated. It also meant–I know this sounds silly–feeling like I was falling over when I bent over to pick up Puzzle’s poops when we were out for a walk (Puzzle is my dog). Another thing was that although I could walk fine, my gait had changed. My feet were not aligned; they were separated considerably. I developed shin splints from walking. Eventually, I sprained my ankle! Eeks! It healed quickly. I was only lucky. When I tried to run, I found that I ran on my heels. I was completely unable to run on the treadmill. This would NOT do.
When I complained to my doctor–sorry to bore you regular readers, but I know that people google me and pick up these posts–my doctor said it was the antipsychotics, and told me, “Just stand with your feet apart!” No, Dr. P. No, no, no no. Without her permission, I cut the dose in half.
It’s been a week now. I have yet to tell anyone on my treatment team what I have done. I plan to tell Dr. P next time I meet with her. I’m absolutely fine, and the Trileptal is helping me just as much at 300 as it did at 600.
My medications are as follows: Risperdal 3, Synthroid .1 (for my underactive thyroid), Lamictal 600, Topamax 300, Trileptal 300, Abilify 20.
So you see, I’m on three anticonvulsants. I felt it was safe, therefore, to go down on the Trileptal with no ill effects. I do not have seizures. This was confirmed by the neurologist I saw a couple of weeks ago. Even though going down on an anticonvulsant can cause seizures anyway, I was protected by the Lamictal and Topamax.
Originally, I was put on Trileptal in January while at McLean Hospital for emotional lability and binge eating. Trileptal worked wonders for both. I wasn’t binge eating at McLean but I strongly felt the urge. You can tell when the urge is gone. It also helped with depression at the time. I do not believe it helps with depression now.
I was put on Effexor toward the end of my stay at McLean. Without Dr. P’s permission–this is the only other time I have done this–I stopped the Effexor. I had to do this because Effexor caused binge eating. It was a shame, because Effexor helped with depression, but it wasn’t worth it. As soon as I stopped the Effexor, the bingeing stopped–thank goodness–that is a Hell I do not want to go through again. Both times I have made these changes in medication without Dr. P’s permission have been on weekends when Dr. P isn’t available except on pager, anyway.
So right now I’m fairly happy with my meds the way they are in terms of my psychological stability. I do worry about my slight case of Tardive Dyskinesia in my right hand. It was worse for a while there. It has–believe it or not–lessened over the past few days. You could see it when I put my hand in my pocket. It is only in my right hand. It doesn’t affect my handwriting or typing or ability to perform any task. It is there when I hang my hand at my side. The doctor at the community hospital denied that I had TD, saying she didn’t notice a thing, and that what I had was not TD, but a tremor. No way. It is TD. There is no doubt in my mind of this. It lessened when we halved the Risperdal (this Dr. P and I did very, very carefully last year). Of all the “atypical” antipsychotics, Risperdal is perhaps the most likely to cause TD (I’m not exactly certain of this so don’t quote me on it).
The future of my meds: I wonder if someday I can lower my antipsychotic medication–the Abilify and Risperdal. I wonder how much the Abilify is actually doing at this dose, but I know how difficult it has been to lower Risperdal in the past. I have no desire to lower the anticonvulsants any further. I think all three are essential and are helping. I worry about the TD and want to speak with Dr. P about it–again–next time we meet. I will keep you informed.
For those of you bored by medication talk, I apologize. For those of you who are interested, stay tuned. There are tags for “Trileptal ordeal” and “Tardive Dyskinesia” on the sidebar that you can click on for more posts.
UPDATE: I lowered the Trileptal to 150 June 7th due to further “swaying.” At the time, I was not running because of a really bad knee injury. I couldn’t even walk without crutches. I figured the “swaying,” which had suddenly returned, was going to cause a problem on crutches, a danger in fact. I lowered the Trileptal by cutting the 600 tablets into quarters starting the night of June 7th.
A week later, I began some serious bingeing (on food). I had already gone through a period of bingeing on 300 mgs Trileptal, but hadn’t thought that this was caused by the lower dose. I just wasn’t thinking straight.
In between all this, my injury had been diagnosed as an arthritis flare-up. I didn’t even know I had arthritis in my knee, but it all made sense: I had fractured it in 1999 and at that time was told that this could happen. So I was advised by this specialist not to run or walk for fitness.
In other words, the treadmill was out. So last night, I did some thinking, and realized that I had made this promise to myself, that if the bingeing returned, I would return the Trileptal to its original dose. Trileptal stops the bingeing. No more treadmill = no necessity to eliminate “swaying.” I’ll live with it. I do not want to live in Bingeing Hell. Anyone who has an eating disorder knows this place. You do not want to go there.
So that is how the story went. Have a nice day.
I do not want to be seen
As it turn out, yesterday evening, as I was walking Puzzle, I was thinking that I couldn’t be happier, and I was hoping that I would remember October 2010 as the happiest month of this year (unless November and December were happier). I felt like celebrating. I walked with a spring in my step. Puzzle and I walked for about an hour and fifteen minutes.
Okay, okay, I admit I’ve been walking Puzzle an awful lot. I admit I’ve been exercising compulsively. I noticed it especially this morning. After our long walk yesterday afternoon, we walked another hour and fifteen minutes this morning, about all my bad knee can take. I think in the past week, we’ve covered over 15 miles. (Twice that if you count the fact that I see double.)
What I mean by exercising compulsively is not the hours walked or distance covered, but how I walked. Like this morning. I felt like I had to walk those extra blocks. When I put on Puzzle’s leash to go out, I felt compelled to walk as far as I could. I felt that I was walking not to give Puzzle exercise so much as to burn calories. Nonetheless, we had a blast.
In a way, I know one reason why we did it. I was kinda pissed. Over something really, really stupid, some little interpersonal thing that has nothing to do with anything really, just my friends who left me back in early August, a little thing came up that hurt my feelings. I don’t know why I let it do that. I should just let them go, but I continue to let these little things bother me. So I exercised compulsively. I suppose there could have been worse things I could have done. Lots worse. I could have bought a bottle of booze and gone drunk driving, and to make things worse, I don’t have a car, so I would have had to steal one (or a license–so watch out, world).
Okay. That was one thing. Then I came home. Paced. Couldn’t get that little incident off my mind. I wanted to work on my Nano outline but I was too distracted. So then it was time to have breakfast with Frank via Skype, and I told him what had happened. We both agreed that it would be best to just let it go and not let it affect my eating.
So I did my best. Meanwhile, I was trying to stop my tongue from coming out of my mouth while I ate. This, I had thought, was a bad habit. I had thought I needed to break the habit now that I was eating in front of someone. Bad habit? Wrong-o. It is Tardive Dyskinesia. If you haven’t heard me talking about Tardive Dyskinesia before or don’t know what it is, look it up. I tried to stop my tongue from coming out of my mouth while eating and guess what? I couldn’t stop the “habit.” It just won’t stay in. Not only that, but my cheeks feel tense all the time, and I seem to swallow and tense my mouth. This has just started today, though the tongue-while-eating habit has been going on for a while. I just thought I was licking my lips to get food goo off of them.
This might be from lowering the Risperdal, and if it is, then it is temporary and will go away. On the other hand, it could be from having taken Risperdal, a long-term effect, and it could be finally manifesting itself, and it may never go away. In other words, my dears, this could be permanent. Here forever. Lip-smacking, tongue-sticking-out, etc.
I will never, never, never eat in front of my mother again. Never. She would come up with the nastiest things to say. I know her. Too well. In fact, I don’t even want to see her ever, ever again. I don’t want to be seen.
I don’t want to be seen. I don’t want people to see me smacking my lips and tongue. I want to cover my mouth the way I want to cover my skinny body. Maybe I should cover my mouth with a bandanna, just tie it around my head. Now, there’s a thought. Or wear one of those masks people wear to keep their germs from spreading. I am so afraid to eat in public, like at a restaurant.
“It.” That’s what I’ve been calling it all day since it started. “It.”
Okay, more bad news. As they say, adding insult to injury. I went to my T’s office to tell her all this, and she tells me the clinic where she is working is going to close December 2nd. Great. Just great.
Long pause. Or there would have been a long pause. But there wasn’t.
My T said that she was applying to work at another clinic, and was expecting to get the job–probably–and that I could see her there. It is on the bus line, right on the bus line, a different bus, a longer commute, but very accessible to me.
I am truly honored that she chose to continue working with me. She is “terminating” with almost all of her clients that she presently sees.
Why me, I wonder? I guess she has her reasons. I did not ask.
So we’ll see. She should hear from the new clinic very, very soon. All I can do is hope that they accept her. They are waiting for references, and I told her that she could use Puzzle for a reference. My T said, “But she’s only a dog.”
Only? Only?
I told my T that Puzzle counted, because she wears handmade sweaters from Yours Truly. I suppose, then, we’ll be getting some calls soon. Or at least Puzzle will.
Adjustments
As it turned out, I slept four hours last night and felt rested. Not good. This can be a sign that mania is coming on, or it can lead to mania. So I have to be careful. I didn’t want another night of it. I don’t want another night of it tonight. I will take Benadryl to help me sleep, but it only lasts four hours so I don’t know how much it will help.
I put in a call to Dr. P. She does not check her messages on weekends. I had to have her paged. I would have waited until tomorrow, but I felt that this couldn’t wait another night. If I was going to start a new dose, I wanted to start it as soon as possible and pick it up from the pharmacy today.
Long story made short, and skip this paragraph if talk about medications and dosages bores you: Dr. P made two adjustments. She raised my Abilify to make up for the lowered Risperdal. Abilify and Risperdal are both antipsychotic medications. My Abilify dose went from 20 to 25. I told Dr. P that I thought I might be able to tolerate 25. She also raised my Lamictal to stop the binge eating. I binged today and two days ago, and I found the bingeing so horrible and so alarming that I felt that something had to be done about it immediately. Dr. P to the rescue. My Lamictal dose went from 500 to 600, but I was a little uncertain about this in Dr. P’s message, so I’ll have to get her to clarify tomorrow.
Yes, some people who binge eat can be helped with medication. I am living proof of this.
In fact, if I had a choice between the following pills:
A pill to stop binge eating
A pill for depression
A pill to make me rich
A pill to keep my home clean
A pill for mania
A pill for anorexia
A pill to make me feel better about myself
A pill to keep me alive for 100 years
Yeah, I’d choose the pill for binge eating and throw away the rest. Really. Even if it meant dying at 75 instead of 100. Because to me, a bingeing life is not a life worth living, so what would be the point of life till 100, anyway? If I was in a fire and had to rush out of my house, and had only one med to grab, surely, I would take the Pill for Binge Eating.
This was the reason, back in 1981, that I started taking meds in the first place. To stop the bingeing. My first med. Thorazine. Thorazine, my friend. It didn’t stop bingeing, but it did help me. Still, I had read the research that Imiprimine helped people with binge eating. This was brand new research and I wanted in on it.
Imiprimine didn’t do jack shit for me. Imiprimine is an antidepressant and it made me worse.
And so on. Pills and more pills. But the original purpose–to stop the bingeing–was always in the forefront of my mind. Please, please let there be a pill for this. I knew this was chemical. I knew rats could be chemically induced to binge. And if this was the case, I thought to myself, bingeing could be started and stopped chemically.
This totally goes against all current theories of binge eating as “coping mechanism.” Even my own therapist says my theories are crap. But why, then, does medication work so well for me for binge eating, and therapy do absolutely nothing? There’s got to be something to this.
At any rate, I feel like I’m being batted around in a batting cage right now. This way and that. Lowered this. Raised that. Not knowing what’s going to happen next, or how I’m going to feel, how much sleep I’m going to get, or what’s going to happen with the dangerous side effect called Tardive Dyskinesia (see previous posts) which seems to have worsened today.
You could say I’m pretty discouraged. Devastated by the binge eating I did Friday and today. I don’t feel particularly guilty, but I do feel deeply ashamed. I didn’t eat all day yesterday. I don’t want to “trade” eating disorders, one for the other, and go from Anorexia Hell to Bulimia Hell. You know, it’s just one easy step, when you think about it.
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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available from Chipmunkapublishing–click here to access. To read more about it at my home site, click here.
Not wanting to die: Day Five — news and ramblings
I went to see Dr. P on Thursday, and told her about my life. She listened and believed me. She didn’t even grill me on what I had eaten. She’s happy for me. I guess she can see the hope in me. Or I hope she can see the hope in me. I showed her a photo of myself at my lowest weight, and asked her to compare it to myself sitting there in her office, two pounds heavier. Yes, it’s noticeable when you are this skinny. She did that annoying thing that I hate: typing everything I say into her computer. She started doing that when they started some sort of new computer system at the hospital.
We didn’t only talk about my eating disorder. I have a wiggle in my right hand that has been getting more pronounced. At first, it was imperceptible. But when I traveled to Ohio, my dear friend noticed it several times, and now, Frank notices it over the webcam. So I told Dr. P about it, and explained that it was worsening. She asked me many questions about it. Is it in just my right hand? Is it a trembling? Can I stop it at will? Does it interfere with activities?
Yes, it’s only in my right hand. No, I’m not trembling. It only happens some of the time, and it doesn’t increase under pressure or when I’m emotional. It seems to happen when I’m not paying attention to it, or when I’m more relaxed. Like when I’m talking to someone I know, or when I’m casually waiting for a bus. And as soon as I’m aware of it, I can stop it. It doesn’t interfere with typing or handwriting (I’m right handed). Or at least not yet.
Dr. P said the Dr. P equivalent of a swear word. I think the word was “cricket.” She said it not once, but five times. “This is Tardive Dyskinesia again,” she said. “And you’re right–it’s from the Risperdal. We have to lower it.”
Tardive Dyskinesia. This is the same debilitating condition you see in people on buses and on the streets, people with facial tics, tongue movements, torso movements, movements of their limbs or jaw. This condition comes from antipsychotics, whether these are the “traditional” antipsychotic medications or the “atypicals.” Both can give you Tardive Dyskinesia. And it’s permanent. Once you get it, you’ve got it. It doesn’t go away, even after you stop the drug.
I began to get Tardive Dyskinesia in my tongue a while back. We decided that it was most likely from the drug Thorazine. We stopped the Thorazine. It seemed like a snap to taper off of it at first. It must have taken me about six weeks altogether, but I got off of it. My tongue was vibrating a little bit, and I feared that it would turn into an out-of-the-mouth horrific tongue movement that would handicap me for life. Getting off Thorazine, thankfully, stopped the tongue vibrations before they could turn into anything worse. My last Thorazine pill, 1/4 pill, was June 10.
In July, I had a reaction. It was pretty bad. I had rapid-cycling mood swings, and if a mood swing was particularly dramatic, it would cause an eating binge. The bipolar ups and downs were so bad that I would swing into 45 minutes of full-blown mania, then within 12 hours I would be so depressed that I had trouble even moving around and walking. Add to that a periodic binge-fast cycle, which I kept secret, and I was in for disaster.
Dr. P to the rescue: As soon as Dr. P became aware that I was cycling, she knew that the cause was the Thorazine discontinuation. She tried raising my Risperdal,an antipsychotic, from 4 mgs a day to 6. This didn’t quite do the trick. We raised my Lamictal, a mood stabilizer, from 375 to 450. Dr. P said this wasn’t likely to help, but it did. She then raised it to 500–and kept it there. We lowered my Risperdal to 5 when I noticed excessive thirst. Then, it seemed as though my medications were finally okay, and I was stabilized.
With this news of Tardive Dyskinesia, it looks like Risperdal, the medication I’ve long relied on to keep my moods stable, will have to be discontinued. What will this mean? What next? Will I be okay without it?
Thursday was the first day of lowered Risperdal; yesterday was the second. And last night, sure enough, I binged. I slept a few hours, and then woke up at 4am, sobbing. I haven’t eaten all day today. I’m not hungry or tired, just numb right now, exhausted emotionally from the ups and downs I experienced earlier today.
Frank, I feel like I’ve failed you today. I’m in such turmoil over my eating right now, over my body, over the weight I’ve gained, the new flesh on my face and all over my body (though a lot of this is probably my imagination). My clothes feel tight and I hate it. But at the same time, I simply don’t want to be wicked skinny anymore. I’ve had it with “the A word”–Anorexia. I need to get my periods back. I need to get warm this winter. I need my clothes to fit. And most of all, I need for you, Frank, to eat.
And who am I, starving, to tell you to eat? Who am I to talk? What right do I have to tell you to eat more, when I haven’t had a bite to eat all day? Aren’t I being the same cheater that I hated so much in the past? Aren’t I the same cheater that ate and drank six pounds’ worth of crap to get the scale to read a number that would keep me out of the hospital? Aren’t I cheating the same now as I did when I lied to my T at every session I went to?
Probably not. Because as they say, “This too shall pass.” As they say, “Tomorrow is another day.” Maybe tomorrow my attitude will straighten out, and I’ll feel better about my body and about eating. Maybe tomorrow I’ll dare to put food into my mouth. I am still growing. We are still growing. Let’s leave last night and today and just go on.
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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available from Chipmunkapublishing–click here to access. To read more about it at my home site, click here.
Medicine time
I went to see Dr. P today. I told her I was doing “not so great,” and that I was having moodswings. Highs and lows, and an underlying depression I couldn’t shake. I haven’t been depressed like this for five years.
She’s adjusting my medicine, saying that this may all be from having stopped the Thorazine last month. I tapered off Thorazine because I had been developing Tardive Dyskinesia. The taper, from 600 mgs to off Thorazine entirely, was very gradual, and entirely successful, or so I had thought. My first day of no Thorazine was June 10. The moodswings started July 6. About a month.
I can’t go back on Thorazine, because the TD will come back. TD is permanent. I was very, very lucky that I was able to rid myself of it by getting off Thorazine, but going back on it after getting off of it is asking for trouble, according to research. I no longer have TD. I no longer have extreme trouble with sunburn. I no longer have a dry mouth. These are wonderful things.
So Dr. P decided to raise one of my other antipsychotics. I take two other ones, Abilify and Risperdal. I told her not to raise the Abilify; doing so will make me binge. So she has raised the Risperdal from 4 mgs a day to 6. I am not thrilled about taking this amount of medication, but I suppose if it helps, it helps.
If this doesn’t work, we will raise the Topamax. Topamax is a medication given for migraines and seizures that is also a mood stabilizer. I find it’s pretty good for depression and bingeing. However, I question the necessity of a higher dose. We will see.
Tardive Dyskinesia Update and Good News
As it turned out, my Tardive Dyskinesia was getting worse and worse, bad enough so that people were noticing. My tongue was making my jaw move to the point that people assumed that my teeth were chattering, and said, “Gee, you look very cold!” or something to that effect. Or they gave me strange looks on the bus. Perhaps, also, the TD was getting into my jaw, but of this I am uncertain.
Well, Dr. P and I decided finally that it was time to lower the Thorazine. Because of insurance (jeepers!) I am only allowed the 200 mg size of Thorazine, and I can’t cut them in half, so I am taking 400/600 every other day. It’s working out okay, but I suspect it’s too soon to really draw any definite conclusions.
However, the good news is this: The TD has nearly stopped. Whereas previously, it went on all day long, just about all of the time, now it is happening rarely, and not as violently as to make my jaw move at all. In fact, I got no TD on Saturday until around 7pm. I phoned everyone I had on my speed dial and told them the good news! I was so excited! The sad part was that most people haven’t a clue of the magnitude of this event, but I couldn’t contain myself. I was bubbling over with joy.
Here are my previous blog articles on the growing problem I was having:
https://juliemadblogger.wordpress.com/2008/10/03/tardive-dyskinesia/
https://juliemadblogger.wordpress.com/2009/06/14/thorazine-update/
Contained in these articles are links to further information on TD. Here’s another You-Tube I found:
I will not be able to raise the Thorazine back to the previous dose of 600. Bringing the dose back up will worsen the TD. It so happens that this is the tendency with many patients. So this has been a decision I have made based on the fact that I have been stable for a long time.
I have been hoping to get off Thorazine entirely.
One problem I have noticed is that I have an increased sensitivity to caffeine. I can drink tea but a strong cup of coffee jazzes me up, and makes me uncomfortable. This is simply something to take note of. If I have to drop coffee altogether, I will be very sad. But I do like tea.
My hair, Part 3
It seems that I have very little hair remaining on my head. When I mentioned my thinning hair to my sister-in-law last Passover, she suggested that I have it cut. How dare she! Despite the fact that it was a well-meaning suggestion, I took offense, and was sorry I brought up the topic in the first place.
Here is a recent photo of me. You’ll see what I mean:
It doesn’t show in the photo, but I still have my wonderful braid. So what am I complaining about? I am happy. I have my mental health. I can walk. I can talk. I don’t have Tardive Dyskinesia–it looks like it isn’t going to get any worse than just a little tremble in my tongue. I will be graduating with my MFA in Creative Writing on JULY 12, 2009. I am 50 years old and my body is only falling apart a little bit, not a lot. I have the second half of my life to look forward to. I just found out I’m GETTING PUBLISHED AGAIN – details soon! So what is the big deal about hair?
Here are the other articles I have written about my hair:
http://blog.juliegreene.name/2007/02/12/my-hair.aspx
This Hunger Is Secret 