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Monthly Archives: April 2013

Mis-diagnosis of a man already on the edge

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It has been several weeks (maybe a month) since I have posted a blog; for all practical purposes it seems I have fallen off the face of the earth. In fact, I have done just that. In March I posted a blog entitled ‘To sleep, perchance to dream’ in which I described a sleep disorder that had been plaguing me. The disorder, as I’d explained it, was right as I am about to fall sleep one of my hands, feet, arms, legs, elbow, neck, whole body, etc. twitches, awakening me. This goes on all night. Seriously, when I try to go to sleep, the moment my body relaxes, I twitch and am fully awakened. To say ‘this sucks’ is truly an understatement, but what’s worse is/was the treatment I received from my primary care physician, a doctor I’d seen only twice previously for an unrelated matter. This self-important asshole didn’t listen to me; I told him what I was experiencing and he concluded (after a brief, basic neurological assessment) that I was bi-polar. This was all in my head, he told me. Possibly I needed a medication called Seroquel, something to even me out. I probably ran around like a maniac for several days, he postulated, excited and hyper, and then I’d crash and become slow and unresponsive for the next few days. No, I told him, that was not the case. Sure it is, he said, ignoring me.
Now, I’d already been prescribed trazadone and lorazapam from an urgent care facility, meds I was taking for sleep at the time of that visit. I’d gone to them, desperate, after four nights without sleeping, and they were kind enough to listen and give me something. I took the meds, slept, and made the appointment for a week later with my doctor (the soonest I could get in). The disappointment I felt when he told me it was psychological was profound, but by that point the efficacy of the two drugs were vastly reduced so I wasn’t thinking as clearly as I should have. In other words, I believed him. Two days later, after having not slept at all, I decided I needed some tests. I called an MRI center and made an appointment. I couldn’t get in without my doctors referral, of course, so I then called his office and asked to be referred. I admit I was doing things backward, but what the hell, I didn’t know the procedure. I’ve been gifted with having good health the majority of my life. There was a definite learning curve going on. After waiting all day, a game of cat and mouse (me chasing after them, they answering my questions elusively, implying that it was all right, that they would fax over my info but not doing so) I called the clinic and they told me to come in, that my doctor’s office promised to send the records. I was on the table when the doctor’s office called and said they refused to refer me. Crestfallen I left, and his male nurse called me. He told me that we all get twitches right before sleep and I just had to learn how to relax. He recommended I do deepbreathing excercises, acupuncture treatments and take medical marijuana. I was so distressed and muddled that I took him up on all three. I made an appointment for acupuncture (not knowing if my health insurance would cover it or not-they don’t, it turns out) and went there the next day and got my medical marijuana card to the tune of $50. I then purchased $180 worth of liquid THC, edibles and a smokable that was supposed to knock you out cold. After one application I discovered smoking was out of the question; it made the twitches 100 times worse. The liquid THC was no better; it made me drowsy but couldn’t get me past the twitches like a prescription sleep aid. At my own best judgment I decided not to eat the brownie. Disappointed anew, I found another doctor online and made an appointment to get a second opinion. I picked a doctor based on how quickly he could see me, not on his credentials, and for this I paid dearly. It turned out he was an even bigger ass. Without anything other than a brief physical assessment he decided I was suffering from depression. The twitches were all in my head, he told me, and I should seek the care of a psychiatrist. I left his office with mixed feelings; I’d been doing everything the doctors told me to do: I’d done the MMJ, I’d had the acupuncture (only one treatment, all together I;d do two) but still nothing worked. I still had the trazadone (I’d stopped taking the lorazapam when I got down to ten pills because I didn’t want to get addicted and then run out, having read that even two weeks use could cause dependency. Whether that’s right or not is irrelevant; my doctor and the other doctor made it clear they wouldn’t prescribe it to me again, in fact most likely thought I was there seeking more of that particular drug) but it was only working sporadically. I mixed it with benadryl, liquid THC and melatonin, and some nights it still didn’t work. So I went home, got online again, and found a psychiatrist nearby that had availability within the week. Meanwhile, my primary care physician offered a service to his patients that was quite convenient, an email service through his website. Utilizing it, I contacted him and told him I’d gotten a second opinion and that the other doctor didn’t think I was bi-polar, that he thought I was depressed, and I’d made an appointment to see a psychiatrist. In the meantime, I ventured, was there anything he could prescribe for me to help me sleep because the trazadone was wreaking havoc on my system, giving me monstrous diarrhea. He got back to me, said he wasn’t surprised about the other diagnosis, said there was no need to see the psychiatrist, that he could handle my psyche meds himself, and proceeded to prescribed mirtzapine, another anti-depressant in the same class as trazadone but much easier on the digestive tract. I looked up the drug, read all the information about what a wonderful aid it was to sleeping, and was briefly excited…until I tried it. He prescribed a 30mg dose, one I’d find was quite heavy for what I needed. Throughout the entire ordeal I’d researched every diagnosis, every drug. Mirtzapine, I found, was more active for insomnia at lower doses, a quarter of what he recommended. At lower doses it wasn’t an anti-depressant, it was an antihistamine. But the drug was hit or miss; one night it would work, the next it wouldn’t. And the way it made me feel the next day made it entirely worthless. I felt washed out, dizzy, depressed. After four days I contacted him via the website again and told him it didn’t work, that I needed something to fight my symptoms (the twitches), not the side-effect (sleep loss) and he pulled Restless Leg Syndrome out of the hat this time. Gone was the bi-polar, out with the depression, now I had RLS! Ordering no tests to confirm, telling me we could do a sleep study but it would be a terrible inconvenience, he prescribed ropinerole, a medication used for Parkinson’s and RLS. Desperate for anything to work, I decided I’d give it a shot. This decision was made on a Friday, and I couldn’t get the medication until Monday, so I had the weekend to research it. Long story short, by the end of the weekend I was convinced that this was not the right medication, not only because I had none of the symptoms of RLS, but that the side-effects (it would take a week to start working, I couldn’t take any other sleep aids with it, Omeprazole contradicted its efficacy, and it could potentially cause ‘sudden sleep onset’) weren’t worth it. I drive over forty miles a day for my job; the last thing I needed was to fall asleep behind the wheel while doing seventy on the freeway. As it turned out, getting this medication and seeing the psychiatrist fell on the same day, and for that I am entirely grateful. She did a psychiatric evaluation, to which I answered the questions as honestly as I could; I left out how utterly depressed I was simply because the reason for it was the sleep loss and the mis-management of my care. By the end of all her questions she determined I definitely was not bi-polar and that I was not merely suffering from depression. She actually did what the other doctors didn’t: she Googled my symptoms and found links for ‘hypnic jerks’, ‘sleep starts’ and ‘myoclonic twitches’. Reading some of the posts that described in detail what I was telling her, she decided that she would prescribe Lunesta. To say that I was thrilled is being trite; I was nothing short of ecstatic. Finally, a REAL sleeping pill, not a fucking anti-depressant with somnolent properties. I almost kissed her. She gave me some samples and it worked like a charm. At the risk of this blog post being waaaayyyy too long, that unfortunately is not the end of my story. Turns out my health insurance wouldn’t cover Lunesta because it wasn’t available as a generic so I had to get Ambien. For some reason she’d prescribed Lunesta in a 3mg dose (the highest) but Ambien in a 5mg dose (the lowest). The Ambien didn’t work for sour apples. I needed to take four Ambiens, two benadryls, two droppers of liquid THC, and two melatonin to get about four hours of sleep, and sometimes I even added a trazadone. By this time I was truly at the end of my rope. I was suicidal (don’t tell the shrink, she’d have me committed). I was faced with a very tough question: call my parents and ask for their help or kill myself. In the end the choice wasn’t that hard; I called my folks. Anyone who has read this blog knows I am a pet-sitter/dog walker. I’d been carrying on throughout this whole ordeal and none of my clients were aware of the difficulties I was going through, yet meanwhile I was growing more and more despondent. When I was overnight pet-sitting I felt as if I was drowning, trapped. I was anxious, panicked, unable to think what I was going to do next. One morning I was walking a dog I’d been pet-sitting over the course of the week and I found myself plotting my suicide, my method, the note, the day…and that was when I started making phone calls. First I cancelled all of my up coming overnight pet-sitting jobs, then I cancelled all the up-coming visits, and next I cancelled with all of my regulars. I then looked up my health insurance, checked on my out of state coverage, then called my Mom and Dad. Within two hours they had a flight home for me (California to Wisconsin) for the following week. My clients were bummed, but understood that it was for my health, for my own good. Before I left I saw the psychiatrist and she was kind enough to prescribe Ambien CR (12.5mg strength) and a client of mine gave me two weeks of 3mg Lunesta. Between the two I figured I could hold on for a while longer.
As I am writing this I’ve seen a doctor in Madison, Wisconsin, and he was quite surprised at what my primary care physician had done (diagnosing me via emails with no tests, as well as the dose of the ropinerole: 2mg’s when the drug starts at .25mg’s). With his help I have an appointment with a neurologist that specializes in sleep movement disorders and will hopefully be recommended for a sleep study in which they will do a polysomnagraph (a sleep EEG). Via this test it will prove conclusively that the twitches are real, that this hasn’t all been in my head. Hopefully from there they will offer a solution, a treatment that won’t just mask the symptoms. Throughout all of this I’ve realized that the sleep medication suppresses my central nervous system, stopping the twitches. When the medication wears off, they come back. At first I thought the medication was just knocking me out, getting me past them. I’ve had this for so long I’ve been able to study it, to see how it works, and what works on it.
This has been a long ordeal, and presently I am losing money (in more ways than one: I have to pay out of pocket for the acupuncture, probably for some of the tests, I am not working, I’m paying rent for my place and I’m not there etc. etc. etc.) but at last I finally have some hope. My family has been very supportive and with their help I’ve been doing much better as I while away the time until my appointment in three weeks (yes, the neurologist can’t see me until May 20th). I’ve also been doing nothing to promote my novel The Gyre Mission: Journey to the *sshole of the World and I haven’t posted a blog in a month. So, if anyone reads this, please buy my book. I really need the freakin’ dough! Peace!

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