I saw Dr. P yesterday and she said to me, “Julie, we’ve got to get you sleeping. This is priority.”
Well, I agree. In fact, if we weren’t seeing eye to eye on this one thing, I would sure not be going to her. The situation has gotten ridiculous at this point. I am exhausted beyond belief, having not really slept since August 2011, and now we’re into April 2013.
I guess most folks, when they are young, anyway, go to bed, sleep around eight hours, or more, I hear, if they are teens, and then get up and live their lives. Some people tell me that they get by on less sleep and they are fine. Everyone has their own way of doing things.
But around August 2011, I stopped sleeping pretty much. Only a few hours. And after that, it was rather scant. I am not obsessive about this, so I have not been counting hours or kept charts or even writing it all down. For me, that kind of record-keeping causes me to obsess over sleep too much, and worsens the insomnia. That was what happened when I went to a sleep clinic once. Well-intentioned people have begged me to go to this sleep clinic, but due to my horrible past experience there, I hesitate to return.
All I can remember is my very last session with this “sleep expert.” Wow, I am really laughing now. I sat across from him while he told me I had made great strides and a great accomplishment, and I was now finished with treatment there. He was in fact emotional over this.
Of course, if I had indeed progressed with my sleep in any fashion, it may have been a poignant moment. However, take a look at the other person in the room: the patient, me. I was sitting in my chair, my head bobbed off to the side. I was asleep.
Or sort of asleep. Awake enough to hear what he said, and tell myself, “This is bullshit,” and get myself some real help. I was ridiculously exhausted from the insomnia I was experiencing.
Due to the stress from the insomnia, I went through through a psychiatric hospitalization (a huge mistake) and even a brief day treatment-type experience over the summer (a complete waste of time). These therapist had insisted that I needed high-duty therapy to cure the insomnia, that I had a “coping problem.” Of course, I knew instinctively that they were wrong, told them to go to hell, and never went back.
No, there was nothing wrong with my sleep hygiene or any habits and I did not need these sleep clinic people to make me obsessed. No, I did not have a “coping problem.” About a week later, new doctor with a brain in his head a pair of eyes looked at my medication list and his jaw dropped to the floor. He said, “I can’t believe you have been given this stuff. No wonder your sleep has gotten worse and worse. Effexor is the main cause.”
Within two weeks, the entire lengthy ordeal with insomnia was solved, and I was sleeping soundly as I always did.
So now I guess it’s been a year and a half that I have had terrible sleep, sleeping only an hour perhaps at a time. I have to go through extreme effort to get any entrance into a sleep state at all. I do not believe anxiety or mania are the cause. It could be caused by nutritional deficiency. Most people with anorexia sleep poorly and have to take very strong pills to get any sleep at all, even for years after this so-called “recovery.” (I choose not to use that word due to its overuse and many misunderstandings about its meaning, and that’s why I put it that way. But I’ll get into this some other time.)
So, I went to Dr. P, more pills. I do not like taking pills one bit. For much of my life, I was medicated out of my mind. It was the side effects of the meds, and not anything to do with “illness,” that caused me to be a social outcast back when I lived in Vermont. Why? I guess some people felt sorry for me because I shook so much and had bad pimples. The pimples were from Lithium. They thought the shakiness was the illness. For a while, I could barely walk straight. I was sometimes heavily sedated. People just didn’t know that my slurred speech was not illness, but from the meds. I should certainly not have been driving.
They used to say, up to quite recently, that a symptom of schizoaffective disorder, a disease I supposedly have, is “flat affect.” However, more and more, they are discovering that this “flat affect” is caused by side effects of the medication the suffers are often prescribed. Take away the medication, and the patient again becomes lively and expressive.
No, I am not saying “get off your meds.” Just my observation. I do not have “flat affect,” and when I have had it, it has always been a side effect of a medication. I am very happy that I don’t suffer from it, because I am a writer and often have to read aloud before an audience. If I had “flat affect,” I sure would give a very, very boring reading. Believe me, I’m proud to say I don’t.
Okay, back to Dr. P. She’s told me a bunch of times that she’s not happy with where I’m at now, and wants me on a huge cocktail, saying I was better off loaded up with antipsychotics.
All I can do is look back on the Seroquel nightmare I went through, which included extreme weight gain and blood sugar problems, and the resulting backfire I have been through with anorexia nervosa, and am simply bawled over, and absolutely dread taking another of these pills again.
I had a near-miss with Tardive Dyskinesia. I was incredibly fortunate that I bypassed this horrible problem. It was a stroke of luck for me. My tongue was vibrating for a while and this was not my imagination. No doctor ever saw it, but it in fact was visible to others besides myself. Thankfully, reported this right away to Dr. P. When someone I know has symptoms of TD, I tell them to tell their doctor immediately. TD is not the same as akathesia. I well-trained doctor will not tell you it’s all in your head but will immediately take action and work with you. I weaned off the antipsychotic I had been on that was the cause of the tongue problem. The tongue problem is often the very first signal that TD is beginning.
Not much later, I began to have a problem with my hand wiggling. It was noticeable. This was only my right hand, and when I became conscious of my right hand, the wiggle would stop. My therapist saw it while I was in my sessions, in fact, the therapist I had back from 2008 to 2010. I would be speaking with her, and not realize my hand was doing this thing. She was a well-trained therapist and she was concerned, recognizing that this was no tic, of course, it was TD. By then, though, I had already noticed it myself and reported it to Dr. P. This, too, Dr. P explained, is another of those beginning TD symptoms that can turn into something worse if we did not take action very soon.
Risperdal, she said, was causing this. We tapered the Risperdal in half. It was my understanding that I would get off it it, but she left it at this half dose. I continued to have the hand wiggle, but it was less noticeable. One day, I quit the antipsychotics altogether, cold turkey. I have not taken Risperdal since. The sky didn’t fall in. The fortunate thing was that I no longer had any type of TD symptoms. I had escaped it all, just a stroke of luck.
Today, I speak like other people, without sounding doped up or slurring my words. I speak with expression in my voice. I do not have tremors and I do not twitch or have jerky limbs. I can walk naturally. I am so happy not to deal with pimples anymore. That embarrassment was many years ago.
I have been talked into Abilify on and off, but it causes insomnia. That is the reason I stopped it. Dr. P was kinda pissed, and has prescribed a variety of drugs since, including another antipsychotic, Latuda, and a bunch of addicting drugs to make me fall asleep, and now, Neurontin. I did not take the Latuda.
I think it’s a few weeks now that I’ve been doing really well, meanwhile. I have strengthened and empowered myself considerably, quite on my own. It’s not due to a drug, or any therapy, but my own inner strength and simple common sense.
See, I really had no choice. I am all alone in this world. Me and Puzzle. I had to get my shit together, or die, and that was it. No one was going to do it for me. In fact, there wasn’t even anyone out there to help, when you think about it. After being repeatedly turned down and refused, the hundreds of calls I made, and little “help” I did manage to receive being not helpful at all or downright hurtful, I realized that it’s not just me, we are all alone here. There is no magic in this world, no magical therapist, no person out there on whom you can rely to save your life except yourself.
I’ve been around a long time, and my experience is that if you think your therapist is God and you are relying on your therapist or some program to keep you alive, there’s a dependency problem. It’s a merry-go-round that’s very tough to get off of. The therapists that do this sort of therapy often get some sort of personal gratification out of these dependencies. I’m so happy to have gotten out of the merry-go-round. I fear this type of “therapy abuse” and I’m scared to go back into therapy for fear that I’ll end up with another abuser like the one I terminated with a year ago.
So there I was, with no therapist, no real guidance from anyone or anything except my own inner strength, intuition, gut, and survival instinct. I tried seeing a nutritionist but I found her unhelpful and certainly not worth the expense. I had seen one last therapist, and he turned out to be the worst dud you can imagine. Not really a therapist at all, though he had a license, I would not call what he did therapy at all. After three sessions, I stopped and never went back. People tell me I should report him, due to his unprofessional conduct. I think it will be empowering for me to do so. The two I’d seen before were totally ineffective. I just plain gave up. I signed up to get a therapist at Boston Medical Center, but if this one turns out to be ineffective, I know there is no obligation to keep on showing up. It’s not like you’re married to the person.
I guess I felt my way, rather blindly. This is what we all do, ultimately, and we do it alone. That is what life is. I told myself that I need to stop eating and drinking dairy food. I simply knew. Having made this move has completely improved my life. Setting up the new site and working on it, and redirecting myself in this manner has totally changed things for me. I feel a sense of purpose. It got me out of bed, for one thing, doing things. I went back to church and feel pretty good about that.
Not only that, but it’s been quite a while since I have done binge eating. This I am certain is due to stopping dairy. I am not telling anyone else to make this move, but I guess it was something that was helpful for me. After that, very gradually, I stopped doing the other nasty “behaviors” that I had been doing. No one told me to stop. No one was policing me. No one forced me to throw away my scale or bring it to their office or bring in any chemicals as “proof” that I no longer do these things. Heck, I am no elementary school child and I do not expect to be belittled in such a manner. I am happy to be free of coercion.
Of course, when I went to see Dr. P yesterday, she had no awareness that I am doing so well. Perhaps she saw a tired, middle-aged skinny lady with a dog who badly needed sleep. I was in a cynical, dark mood yesterday. It was sort of a downer day only because the day before was rather exceptional. For one thing, I’d been slapped with a huge bill that no way did I expect. I don’t want to get into it really, but it was all downright obscene and I had no way around the whole thing but to pay it off with my credit card. It’s one of those bad luck things that can happen to any of us. I didn’t ask for it and suddenly I’m in gigantic debt. Of course, I was already in debt, but now it’s unexpectedly much worse.
I don’t usually sweat it over money. But I guess I was under more stress than usual because this financial bad hit was combined with another event. Again, I’ll get into this some other time in more detail, but I was on a bus and was witness to a hate crime. I guess that’s what you would call it. The bus driver was not aware that it happened and could not have prevented it, so there is no reason to alert the T. No one was physically hurt. No property was destroyed. It was done with words and gestures. I have been riding the T in Boston since 1987 and have seen a lot of stuff. I will remember this forever, and I will tell you about it later. So let’s just say at the end of the day, I had myself a good cry. That was Tuesday. Then the next day the last thing I wanted to do was to go see Dr. P, but I dragged myself and Puzzle (she sure did not mind the trip) off to Boston to see her.
She knew absolutely none of this. We focused on sleep. We have only 20 minutes, after all, you can’t talk about everything. So really, she didn’t know how well I’ve been doing overall, and that it all had been overshadowed by an exceptionally unlucky day the day before. After all, I’d just come in from another long bus ride, and every time I get on a bus, I am reminded of this awful bus incident. I need time to process this, and allow it to heal, the way a bug bite heals, not instantly, but over time. I can remember these bugs that bit me, and write about the experience, making it into story. I’m very good at doing that. It’s better than scratching the sores, because then they will worsen.
So Dr. P again tried to tell me I’m better off very, very drugged up. But she also thinks that sleep is very important and that I need something that will knock me out. I didn’t say anything, but I’ve heard marijuana does a good job of that. Of course, I have no intentions of getting into that stuff due to the side effects and cost. I also know that acupuncture will knock you out cold. I have considered going back to acupuncture but am concerned about the side effects. I am also concerned that if I start, there will be no end to it. I want something short-term and I do not want to be going there forever and ever. It is too expensive.
My discussion with Dr. P was not a bad one. For sure, I didn’t act like an idiot. It’s nice not being doped up and I love using my quick wit to my advantage. As a matter of fact, Puzzle had a number of people in the waiting room entertained for about 20 minutes before my appointment began. I doubt Dr. P knew that I had been enjoying a lively discussion with another dog owner. She told me all about her dog. Another person in the waiting room shared an experience he’d had with animals. All because of Puzzle. Of course, this happens all the time when I have Puzzle with me.
On the bus ride over, I’d enjoyed helping out a foreign student by explaining what to expect this summer weather-wise here in Boston. Of course, weather is a fun subject if you are a New Englander. I enjoyed making a few jokes about our weather. In fact, she laughed. It was a fun topic, and I think I was helpful to her.
Again, Dr. P knew none of this, and only saw a tired, cynical, uncooperative patient sitting there, her fuzzy little dog in her lap. In the end, I got handed a prescription for Neurontin and a heavy-duty sleeping pill, Lunesta. She told me to try the Latuda and if it causes anything bad, to stop it. I told her I’d think about it.
So I went home, exhausted. I went to bed for a few hours. I didn’t really sleep. But I couldn’t even stand up or sit anymore because I was so tired. Anyone who has experienced severe insomnia knows the feeling. You can’t do anything but lie down. You are desperate for rest.
I got up later, figuring what the heck, I’ll fill the prescriptions even though they will do nothing. So Puzzle and I trekked to the pharmacy.
The pharmacist said that Latuda was brand new and they don’t really know the long-term outcome yet. He also said it wasn’t sedating to his knowledge, and he said it was not something that would knock me out at night. I did remember that Dr. P said I should take it with food. That means with a meal, not even at bedtime, like people take Geodon. She said it metabolizes more effectively that way. He said, “Do you really want me to fill this?” I love pharmacists, the way they are bold enough to question a doctor’s move.
I told him yes, please fill these prescriptions and we’ll see about all this. I pay a very small copay. But as it turned out, my insurance did not pay for the Latuda or the heavy-duty sleeping pill. The pharmacist said that they would have to contact Dr. P, or I would have to contact her to then get this Medicare Part D to pay for these drugs. I told the pharmacist it was okay to go ahead and contact Dr. P tomorrow andmeanwhile fill the one remaining, Neurontin. It was getting awfully late. Meanwhile, another person waiting for their drugs took interest in Puzzle, asked me what her name was, and we got into a discussion about dogs. I ran into someone I know from church. I joked around a little with him, then left.
We got home around 10. It was miserably freezing out, and I was exhausted beyond belief. I focused on doing what I had to do and getting to bed. I hoped I would sleep. Maybe a few hours. It’s better than nothing. A whole ton better. So I’m not sure which order I did things in. The neurontin bottle says, “Take one to three capsules,” and I didn’t know what to do. It didn’t say I had to start with one and build up. These are 300 mg capsules. I decided, rather randomly, to try two. I didn’t want to mix any of those benzos with it because I wanted to see if Neurontin alone would be sedating enough. The other meds I take, the Topamax (for binge eating) and synthroid (for my thyroid) are not sedating for me, though many folks find Topamax sedating.
The results? After I took these capsules, I guess they began to do something. I got Puzzle’s food together and then put it in the freezer for just a few minutes to cool it. I totally forgot about it and when I awoke in the morning, her dish was nowhere to be found. Puzzle had been polite all night and had not complained one bit. There was her dish, in the freezer, with her food frozen and stuck to it. I guess this can happen to anyone, but I think the Neurontin was making me dopey toward the last bit of the night.
I really should not have chosen to give Puzzle her ear medicine while I was “under the influence,” but how should I have known? Which ear is the left ear and which ear is the right ear? It was puzzling beyond belief but I am positive that I did it correctly. Not only that, but I had been assuming that Puzzle would be uncooperative about receiving the medicine. Naw, she was fine. All I had to do was pick up her ear (once I figured out which one was which) and squirt the stuff in. Done.
Then, I went to bed. I knew I was dopey, dopey, dopey. I had not felt dopey like this for a while. At least I was able to change into pajamas. I was rather delighted, figuring something might happen. At least not nothing at all.
I think I lay in bed, not feeling bad or good, just daydreaming and holding little Puzzle while she lay sleeping for about three hours. But I knew something was different. I noticed I had a stomach ache, an acidy feeling. It bothered me for a bit, then passed. It was not enough to get me out of bed. Then, I fell asleep. I don’t know how long I slept. In the middle of the night, I woke up smelling something funny, and asked myself if maybe the med had some olfactory effects, then realized that my nose was very, very close to Puzzle’s left ear. I laughed to myself, realizing that the odor was not something burning in the kitchen and not an olfactory hallucination and nothing to worry about. What I smelled was Puzzle’s ear drops. I know my sleep was on and off for the remainder of the night and I don’t recall when it was that I got out of bed. I can’t say it was great sleep but on the other hand, listen up.
It must have taken a half hour, maybe an hour, and then a few more hours to confirm it. It’s rather obvious now. Yes, it has happened to me before, and please do not tell someone 55 years old with 32 years first-hand experience in the mental health system that this is not possible. You could say I was markedly different when I woke up, and knew that this Neurontin is the right thing to do. I am pleased with the changes in myself that I have noticed throughout the day, and I plan to continue to take it. Yeah, I’m against chemicals and all that, but I’ve decided to take this plunge.
I phoned Dr. P with a question. I wanted to know if I should take three capsules tonight. I was just beginning this blog entry when she phoned back, and told myself that I should probably end this entry by summing up how that phone conversation went.
First of all, I told her how I’d slept in the afternoon, gone to the pharmacy, waited forever, come home late, took two, and so on, just like I’ve told you all. I asked her many questions about the side effect I have, in particular, the very slight dizziness I experienced today. I told her I had tested myself for ataxia, and I am not “swaying” when I put my ankles together the way I did when I took Trileptal. I told her I was quite relieved about this, because if I have ataxia it will affect my ability to use a treadmill and put me at risk for ankle sprains. I remember back then I was always afraid of turning my foot on a stone, as if I were 90 years old. I told her that for that reason, I felt the dizziness was not nearly as serious a concern as ataxia, but it was annoying. She assured me that most likely it is temporary and will go away after a week or two of taking this drug. It is really very minor. She said I could go up to three capsules tonight to improve my sleep. I agreed to do so, telling her it made sense.
I guess she noticed something. Something different in my voice or something changed. Maybe I sounded more organized, more grounded. Whatever she heard, something must have prompted her to ask the following question:
It was something like, “Do you still need me to go through with this insurance paperwork for the Latuda and Lunesta?”
In other words, she knows, too. I guess she decided she’s not going to push the antipsychotic.
Hey, Julie, victory.