I didn’t want to have to write this post, I really didn’t, but what the hell here it is: this month marks the year anniversary of my hypnic twitches. They began on March 12th of 2013 and as of this date (March 22nd 2014) they are still with me. Maybe I should buy myself a cake and celebrate.
When they started I didn’t believe they would stay with me for over a week, a month tops I’d thought. I went five days without sleeping when I finally sought medical help at an urgent care facility. The doctor prescribed Trazadone and it did not work so I went back and she gave me twenty tablets of 2mg Lorazapam. That did work, but the one pill dose stopped working after four nights and then I had to combine one Lorazapam with one Trazadone, one Benadryl, and one 10mg melatonin. After four days on this regimen I was shitting liquid every thirty minutes and realized I needed to see my doctor.
In previous posts I’ve talked about that whole fiasco, my doctor not believing I had REAL symptoms and telling me I was bi-polar and then throwing all kinds of pills at me that didn’t work. In all I saw six doctors (one of them a psychiatrist) until I was able to see a neurologist who finally diagnosed me with exaggerated hypnic twitches. I did a sleep study to the tune of $4500, and when I tallied up all I spent on the whole thing it was well over $10,000 in doctors, pills and lost wages.
The twitches were really bad for the first six months, so strong my limbs would literally fly up of their own accord just as I was falling to sleep. My arm, my leg, my whole body; and once they happen you are wide awake, lying there and thinking ‘what the fuck?!?’ The days of exhaustion that followed were grueling.
Of course when I did the sleep study the twitches went into remission; one thing I’d discovered about this wonderful medical anomaly was that it would go away for varying periods of time. Sometimes for a week, sometimes a month. When I did the sleep study it was in remission so the doctor didn’t prescribe any medication. It came raging back a week later with a vengeance from the grave, seriously, stronger than it had ever been. Then after two weeks it went away again. And went like this over the course of the summer of 2013 until I begged the neurologist for a prescription of Clonazapam, which he granted.
Fortunately for me that worked, and I only took it when I absolutely had to. As of this writing the first bottle of sixty pills (.5 mg tablets) lasted me seven months thanks to the twitches going into remission for up to three weeks at a time at some points.
As of the last two months I have yet to see a remission period like that, in fact have to take it at least twice a week (and am at the point where I am regulating it as such because after the initial prescription and two refills I can’t get more without seeing the neurologist and I have since moved from that city). I have the pills counted out that I can make it almost a year from today (48 days shy of a year) if I take four tablets a week. If the condition persists I will have to see a doctor and try to get another prescription for it.
The silver lining? The twitches have subsided to small spasms of sorts; they are no longer so hardcore, with my legs or arms flying up wildly. They are now little spasms in my shoulders or whole body, leading me to believe that they can eventually go away. But, even though they are reduced in strength, they still keep me awake. Large or small they still cause me to toss and turn as I struggle for that elusive sleep. Another blessing is that I am able to get at least four hours of sleep before they start; generally they come on at the halfway point of the night where they used to start from initial sleep onset and carry on through the morning.
This goes out to anyone suffering from this type of sleeping disorder. May you find some relief from this baffling neurological condition and hopefully you won’t have to persuade some narrow minded doctor that the twitches are real, that they aren’t something that is in your head. Clonazapam is the only thing that has truly worked at keeping these twitches at bay and trust me, I’ve tried a LOT of different medications. Ambien, Lunesta, Lorazapam, Xanax, Remeron, Trazadone, liquid THC, melatonin, Doxylamine, ropinerole, Benadryl…all of those have brought me some relief but none of them truly worked. Sleep is extremely necessary and when you go without it makes for an arduous day.
Category Archives: myoclonic jerks
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!
Ah, to sleep, perchance to dream…
That is a very famous quote by the illustrious (and quite venerable) William Shakespeare. And that dude knew what he was talking about, I’ll tell you what. Now, I’m only using that quote as a great opening line. All similarities end there. This post isn’t about him or any relation to that quote. Anyway…
You never know just how great sleep is until that day when, for some reason, you simply can’t get it. Some people suffer from insomnia, others from pain that keeps them from sleeping, but there is another condition that can rob you of sleep, one that really sucks because if it didn’t exist exhaustion would simply carry you away.
I’m talking about ‘Hypnic Jerks’, and when they become severe enough they are known as ‘Myoclonic Jerks’. The first is a seemingly innocuous series of muscle spasms that happen as you are about to fall asleep. Just as you are crossing the threshold into slumber land one of your body parts twitches, awakening you. This happens to a lot of people, maybe a couple times a night before they finally fall asleep. The second is a serious disorder that can cause real problems. Treatment involves tranquilizers or anticonvulsants. Bummer? Yeah.
Two weeks ago I developed these symptoms. One night (after a weekend of heavy partying-please, don’t ask. I’m not very proud of myself) I was kept awake all night long because of these Hypnic jerks. When I got out of bed the next day I realized I’d slept maybe an hour tops. This went on for three more nights until I sought medical help. I simply had to. With each passing night and no sleep I felt as if I was having an out of body experience. I didn’t trust myself to drive (yet I did, I had to) and I thought about Christian Bale’s character from the Machinist, about how he claimed to have not slept for a year. If I had to go a year without sleep I’d be dead fifty-one weeks prior to that, no f-in’ shite. It really sucked the big one. You know it’s bad when, at around three in the morning, you are thinking about what you might take the next night to get to sleep. Since the Benadryl didn’t work that night, I’d think, tomorrow I’ll try Nightquil.
The doctor at urgent care was kind enough to prescribe some strong tranquilizers, and at last I’ve been able to sleep, but here it is 14 days later and the Hypnic jerks haven’t gone away. I’d be lying if I said I wasn’t scared. I went to my regular doctor today and he said to stay on the med’s I’d been prescribed and in two weeks we’d reevaluate. The next step, if they don’t go away, is to get an MRI. Then we can see what is going haywire in my brain. Oh yeah, and I’m sure my health care provider is going to deny me coverage for the test; last year it was recommended that I get a CAT scan and my doctor’s office had to practically put a gun to their head to okay it. If I need an MRI, I’ll probably have to pay for it myself.
What, you ask yourself, does this have to do with pet sitting or promoting my novel? Well, I was pet sitting through the whole thing, so one of the houses I was staying at (the week I didn’t sleep for four nights) became a house of horrors to me. Each night I sat and listened to the same sounds; the rustle of the blinds from the ceiling fan, the breathing of the dogs, the newspapers slapping the pavement when they arrived around four a.m…Jesus, it was awful. I kept it together pretty well though, I have to say; I don’t think the dogs noticed anything unusual about me (except that I paced around and talked to myself a lot).
I am now at the point where I’ve had sleep almost every night for about a week (I say ‘almost’ because one night I tried to cut the medication dosage; didn’t work, I didn’t sleep), and I am feeling back to ‘normal’. Unfortunately, the sleep is ‘drug sleep’ so I feel sort of spacey throughout the day. I guess I am writing this because it just helps to write, to concentrate. I haven’t worked on my new novel in three weeks (since before this started) and I’ve only recently continued my promotional efforts.
To sleep, perchance to dream…I have another great quote, but the source isn’t as well-regarded as the first: ‘You don’t know what you got until it’s gone…gone…gone…
(Yeah, I still have a sense of humor buried in here somewhere. It’s stuck between the folds of a brain I am trying to call out of early retirement.) Peace.