Sleep Starved: A site by insomniacs and for insomniacs who are looking for something new…
Mar
5

Drugs

fukitol1.gifMany of us have drug horror stories. We also have horror stories about doctors who’ve been too cautious or too careless in prescribing to us.

Some of us work out happy relationships with a particular drug, find a drug or a combination of drugs that works and keeps on working.

All sleep medications affect the sleep cycles; none gives “natural” sleep. All have next-day effects on memory and coordination. Some leave hangovers; some accumulate in the system, making the person become permanently drowsy; some are addictive.

Memory and coordination are the best documented side effects of the benzodiazepines. But there are others that are less well documented.

Ambien—though it works for me, as long as I keep the dose low and take it mainly in the last part of the night—has been associated with some pretty bizarre behavior, like sleepeating and sleepdriving.

I have a sense that the benzos and non-benzos and even Benedryl affect my vision the next day. When I’ve been in bright sunlight, then come in out of the sun, after doing something that speeds my heart and metabolism, like swimming or climbing the four flights to my office, I see a weird wavy effect off to the edge of my vision. It only happens after I’ve taken a sleep med. It’s hard to describe, something like the shadow a ceiling fan might cast against a fluorescent light; it strobes with my pulse. My vision is worsening alarmingly. I have a retinal wrinkle that puckers the visual field of my right eye so there are no straight lines on that side of the world. There’s also a “pseudo hole” in that retina that I’ve been told, grotesquely, to “keep an eye on”; and I do actually see it –on days after I’ve taken a sleep med— like a small, opaque contact lens that’s wandered off course, making a greenish dead spot; sometimes it zigzags across my line of vision.

Does anybody have anything like the effect I describe with vision?
Nobody knows what sleep medications do long-term because they haven’t been studied long-term.
–your sense of long-term effects on you?

Xyrem. Has anybody found this works for insomnia?

What I wrote about it:
After I was up an hour or so, came this amazing clarity. I felt so alert I hardly recognized the condition: I had a day writing unlike any I could remember, when the words, the ideas, the images just came pouring out, and the energy lasted well into the night (too well, in fact—it didn’t turn off). I had a mind not stumbling and sluggish and forgetful of what I was thinking the second before, but clear, searching, focused. I think the initial grogginess may have come from having slept so deeply: my body was in a state of shock from so unusual an experience. I now take it once, twice, at most three times a week, and not every day is like that first, but many days are. There are other things I like about it: it always works, unlike the benzos and non-benzos, which occasionally don’t grab hold, which leaves me facing the day both sleep-deprived and drugged. And it seems sometimes to leave me less hungry.

When I wrote that, I was more enthusiastic about this drug than I am now. I take it hardly at all anymore. The last stretch of the book, I was on leave of absence from teaching, I was staying at home, writing. Xyrem gave me a kind of sleep that gave me terrific concentration. But it doesn’t work so well when I have to respond to a lot of things coming at me—as on a day teaching. I also don’t like the way I look after I take it—pale and puffy (I’m having more problems with salt than I did a year ago) And it’s not working as well. If I upped the dose, it might, but I’d rather not. ( I only ever took 3.5 g, in the second part of the night.) I do still take it occasionally on days I get to stay home and write, but for everyday use, I’m back to Ambien. (No, I’m not on the take from Sanofi-Aventis.)

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33 Responses to “Drugs”

  1. chaser

    I am so happy to find this site, I was led here by an article in the Times. As for drugs, I have been taking trazadone almost every night for over 5 years. I find that it helps my sleep most nights (except right before my period when it can’t touch my insomnia), but I also know, viscerally, that it causes amnesia. There are brief moments through the night and when I wake up where I know that I have been up many times, but after that initial waking up moment I can no longer recall. Sometimes I am grateful for the sweet delusion that I have slept better than I actually have, but then when I have trouble staying awake, concentrating, and focusing my vision I wonder why… Thanks for this! I would love to know the effects of this drug on others.

  2. Tomoko

    I have just finished reading ‘Insomniac’, what a great book! I have bouts of insomnia from time to time and I’m definitely a night person which does not help. I would love to know more about SSRI’s and sleep. I’ve been on Lexapro for the past 4 months and I have never slept better. I still go to bed very late since I can do that with my schedule now, but on Lexapro I am able to fall into very deep sleep and in fact sometimes I sleep longer than I would like to! I also have very vivid dreams that I can remember quite well after waking up. I read somewhere that SSRI’s block REM, but shouldn’t I be dreaming less on Lexapro then? The only downside for me is that on Lexapro it is much harder to wake up, the ‘awake’ switch does not go back on easily. I tried asking my doc about the effects Lexapro has on sleep, but she just said it should help me get back to a healthy sleeping pattern, whatever that means. I guess going to bed at 3 or 4 am is the right pattern for me :-).

  3. birgit

    A drug used to help bipolarism and schizophrenia (sp?) is Seroquel. A side effect is sleepiness. I have been taking it for 2 and a half years and love it! My dose is so low my doctor doesn’t worry about it. Am I looking for something less serious? You bet. But for now, I don’t care as long as I sleep.

  4. marginal1

    Even though I suffered miserably for decades with insomnia, the first drug my doctor suggested was Elavil. This was totally unsatisfactory as my whole point was to be able to be ALERT during the daytime, and on Elavil I felt like a drunken sailor, minus the fun. At night it would succeed in making me very DROWSY, but did not quite flip the sleep switch. I was encouraged to “wait it out” and get used to it, but I could not afford to operate like a zombie any longer than two weeks.

    I’ve tried Ambien which was initially a MIRACLE. I woke up after my first FOUR SOLID HOURS of sleep on it feeling like I could now conquer the world! The sensation was short-lived as it became less useful each night.

    I’ve even tried XYREM, which was for years prior my “holy grail” remedy. Well, I did have some INTERESTING insights on Xyrem; among them an increased pleasure at musical appreciation (I sleep/rest to a radio turned down low all night). The first dose of Xyrem definitely sent me to the dead-zone (I would wake up aware of barely breathing a couple hours later), but the 2nd dose would NEVER get me back to sleep…would just nauseate me. So much for my FINAL SOLUTION.

    Today, I take clonazapam, which I’ve taken for nearly 10 years. I take .5 mg per night and have never needed to go up in dosage (it wouldn’t help). I still don’t get much sleep on it, but it sure beats next-to-none. For me, I think it works best when I take half of that .5mg a couple hours before bedtime, then the other half when I get into bed. I can usually get two solid hours, and then can go in and out (mostly OUT) of sleep until about 8 a.m. I very seldom go to bed before midnite, because I know I get even LESS sleep if I go to bed too early.

    Sometimes I add Benedryl to the routine, and that is about the only time I am aware of dreaming. In fact, sometimes I take it specifically for the entertainment value of dreaming, and also to add a little time to being unconscious. But it is not a helpful sleep aid, because it leaves me totally unreasonably groggy the next day. It’s a trade-off that I must be desperate to use.

    I do have visual problems and am not sure I can relate them to medications. When I was still trying to hold down a full-time JOB, I was so tired that I experienced the “strobe” type of effect on my vision in the evening. I’ve had visual floaters since I was a little kid (and also insomnia) and recently I experienced a huge mass of a floater that (when it ripped off from my retina) left scar tissue, so that my vision is now permanently affected with a blurry area in one eye. For myself, I don’t think these visual problems are related to medications, but somehow are a side-effect of chronic and long-term sleep deprivation.

    I had a doctor once who ALSO had insomnia, and when I asked him what HE used…he demured a bit, but then said SEROQUEL. So I AM interested in maybe pursuing that (as birgit mentioned), but am wary of “going there” yet. I woudn’t hesitate if I knew it would work for me.

    Since I no longer HAVE to work, I am currently satisfied with the klonopin. It at least puts me out (seems to flip that switch) reliabley and without need for an increasing dosage for at least a few hours every night. That’s a great improvement over what for decades felt like NO sleep.

  5. ashleyjg

    I do not remember what medicine-free sleep feels like. Growing up, I had no problems falling and staying asleep. I remember Saturday mornings when I would sleep in and feel so good when I woke up when I felt like it. I do not know how that feels anymore. I take Ambien or Lunesta during the work week and try and lay off those on weekends, when I don’t have to be at work. But on weekends, I usually take a Benedryl or a Tylenol PM. And I have to take 2 so it will knock me out. When I take those, I feel way hungover the next day. But it’s like someone else on this site said, it’s a trade-off we have to make sometimes. I can’t NOT sleep anymore. I have had to do it too many times, and I’m TIRED of it. Sleep is something we should all have. It is not something that should be afforded to some and not everyone. For me, Ambien works best, as far as getting to sleep, and the CR keeps me asleep. I usually feel the best the next day when I take Lunesta. It seems to be the best in getting up in the mornings.
    I hated taking melatonin. It really didn’t do anything for me.
    Has anyone liked Valerian root?

  6. ethyachk

    I’ve had sleep problems since I was 13 (I’m 29 now). I tried everything you’ve heard of and very likely several things you’ve never heard of. I tried a litany of drugs, each to no avail. Then I tried Seroquel. Overnight, quite literally, my sleep problems evaporated. I may not be getting natural sleep, but I am getting the best sleep I’ve ever experienced. The downside is that I’m slowly but surely developing greater immunity to the drug, so I am also in CBT trying to learn to sleep without the drugs. I’m so happy to find other people who have found Seroquel to work for them.

  7. marginal1

    ethyachk….Re. the Seroquel. Sounds like this has worked very well for you (until now). I’m always looking and hoping for a medication that somehow has minimal impact on next day’s awareness level! Did you wake up somewhat refresed on Seroquel, or at least better than on other meds? I’m interested for a daughter who is about to begin a career and I know she will need serious help with sleep in order to cope with the demands of a full-time schedule. She’s like me and I’ve never found anything that will both help me sleep and enable me to function for the totality of the next day.

    Thank you and so sorry to hear its effectiveness is beginning to diminish for you.

  8. joannemg

    I have tried several Rx sleep medications (I cannot take OTC meds due to high blood pressure).
    I had a terrible reaction to Lunesta. I am ashamed to speak of this but if it will help someone else…

    I took my first (and only) Lunesta, minimum dosage. I fell asleep then awoke and thought I saw an “intruder” in my home and being extremely frightened – heart racing, etc. I was afraid “he” would hurt my children. I don’t remember anything for a time after that but apparently I ran after “the intruder” and it frightened my children as they did not understand the nature of my distress and called my family, who came over. The next thing I remember is sitting at my kitchen table. My family claims I was talking the whole time they were there and my eyes were open.

    Apparently, I appeared “awake” to my family yet I remember nothing at all.

    I never took Lunesta again.

    My physician gave me Trazodone which seems to work despite the potential for hangover effect; however, if my mind is overactive enough at the time of taking it, I find it “fights” the effects of the drug and renders it useless. One thing I do not like about it is the nasal congestion and dry mouth.

    Restoril has helped me in the past but I am very nervous about taking benzodiazepines on a regular basis.

  9. sleepstarvedrob

    Mirtazapine has changed my life.

    I suffered with anxiety, a constant headache and insomnia for about five years. An initial two hours of sleep was all I could count on, each night. I tried lots of OTC and antidepressants meds with no help. Either they didn’t help or resulted in a vicious morning headache.

    Between all three conditions, I was left a very unhappy person.

    My first night’s sleep in years happened after my first dose of Mirtazapine. I took a half 15mg before bed and slept straight through! And NO HEADACHE! After a month, I am taking 15mg at night and loving it. The best part is it also got rid of my constant headache. It seems all three problems fed off one another. It’s amazing what a good night’s sleep will do. It has changed my quality of life and in turn, my happiness.

    The only caviat… as my doctor warned, I am always hungry! Seems the Mirt can put on weight. But heck, watching what I eat is easy compared to where I was!

  10. ethyachk

    marginal1:

    Seroquel, even with my slowly growing resistance, is still my magic sleep bullet. Waking up I almost always feel refreshed, but there’s a definite medicine grog that I have to fight through to really wake up. Normally a shower, brushing my teeth, etc, is enough to get me moving and functional. Even if I’m a little groggy early in the day, I’m so much more productive the rest of the time I doubt anyone minds. As this is the only medication I’ve ever used that actually got me to sleep, I can’t really compare it to any of the other drugs.

    sleepstarvedrob:

    I’ve noticed with Seroquel, as I increase the dosage, that my appetite increases as well. It’s getting a bit hard to control my weight, but sleeping is so worth it.

  11. jan

    I have just recently started dealing with my issue. I was in denial for years. I take 50 mg of Amitryptiline for starters. The reason I started with this one was the fibromyalgia. Lyrica and Neurontin did not help, but this med helped my father not to have arm numbness and tingling at night, which I think was keeping me awake. This does not make me sleep however. (It just makes me guzzle water LOL) Anyways, I take Estazolam 2 mg on nights before I have to work, so I can sleep 7 hours. I split this in half on nights before I’m off. Otherwise I’d never sleep a wink. I’m using older meds that are generic also due to cost. The doc and I conisdered lunesta, but the cost is too much.
    Do not take this new drug called Rozarem. It supposedly resets your internal clock similar to melatonin if you use it for 12 nights. You have to use it the entire 12 nights. I would have had to been totally off work to try this. The first night I did not sleep. Maybe a couple of 30 min. cat naps. It left an awful aftertaste and made me nauseous the next day. The doc said “well try it one more day.” Same exact thing. I cannot leave my job for 12 days to try to reset my internal clock. The 2nd day I tried this, I was so sick the day after that I had to leave work early and call in sick the next day. That’s when I started suggesting the amitryptiline since it helps my dad’s fibro and I already had the estazolam prescription. Now, I’m just not as afraid to take them. I used to only take the sleep med prior to a work day and didn’t sleep a wink the nights before a day off. So, all my days off were horrible. I could not drive 2 blocks safely.
    I’m so thankful to have found this book and site and to know I am not crazy.

  12. Kathy McGrath

    For the past three years I have been taking 10 mg. of amitriptyline and a quarter of a .5 mg clonazepam nightly. For the record I am a very small person (about 95 lb.), so a larger person would have to take more. I find that the clonazepam turns off the switch and allows me to fall asleep, while the amitriptyline keeps me asleep. I still wake up three to four times a night, but I do fall back asleep quickly. I have a very sensitive bladder so the amitriptyline also helps to keep me from waking up more frequently to pee. I do feel groggy for the first hour I am up, but generally feel energetic after that. I have tried dropping each of the medications seperately, but I find I don’t sleep as well. (NOTE: Prior to taking clonazepam I took Ati.van (Lorazepam), but my memory started to get really bad and I started to suffer from confusion, so my doctor switched me to Clonazepam and the memory problem has disappeared.)
    I have suffered from severe insomnia all of my life and I know that I absolutely DO need the medication. I have no quality of life if I don’t take them because I am too exhausted to funtion. My only concern with the medication is that I have developed problems with my eyesight (lots of floaters), but I don’t know whether to blame the medication or 40 years of sleep deprivation. I am going to see an opthamologist soon to get checked out and discuss this.
    Prior to taking this combination of drugs, I took Remeron (15 mg. nightly) for four years. It did help me sleep once I fell asleep, but I would get severe restless leg syndrome shortly after taking it. Then I would take shots of whisky, which was the only thing that seemed to calm down the RLS. After four years of that nonsense I switched to the amitriptyline/clonazepam.
    I live in Canada so we don’t have access to Ambien or Lunesta as they are not approved by our drug administration yet. I do occasionally take the sleeping pill Imovane, which I think is similar to Lunesta. I’m not crazy about Imovane because while it initially helps me get a good night’s sleep, it has a rebound effect the following night and keeps me awake (I feel hyper). So, I have to sacrifice one night to get another.
    I have taken SSRI’s like Wellbutrin and Paxil, but I find they give me headaches and an upset stomach. The same with Trazadone.
    For me sleep meds are like insulin for a diabetic–I just need them and I refuse to feel bad about having to take them.

  13. fromthebronx

    I am 61 years old and have not slept more than 3 hours in the last 30 years without the use of sleep meds or alcohol. I never slept well as a child but it became a real problem when I developed chronic asthma 35 years ago and started taking corticosteroids, the only medication that worked, so that I could work and support my family.
    I have tried every suggestion, every remedy offered and still cannot sleep. This is the very first time I am talking about this much less write about it. The book, Insomnia, somehow, someway has propelled me to come forward. I have so much to say about this terror I carry within me. It has affected every aspect of my life.
    I am just so tired of being tired all the time…………..

  14. ginnis

    I have had insomnia since the age of 8 or 9. In the last 5 years I made 2 attempts to acquire ambien or a similar medication. The first time, the dr diagnosed me as depressed and was unwilling to prescribe ambien, but wanted me to start taking Prozac. I really do not have the symptoms of depression. When I asked my primary care, she prescribed an anti-anxiety medication instead of ambien (trazodone I think). I told both physicians that I was not depressed or anxious but I just needed more sleep. Addressing sleep is so simple and straight-forward, but I think they assumed my intent was to obtain psycho-tropic medications for recreation use. Now I am afraid to tell doctors that I have insomnia most of the time, because I do not want them to think I want drups for recreation use. A sad situation.

  15. HeatherM

    Beware– I’m going to vent, everyone. I’ve just got to get the initial frustration out of the way since I’ve never had anyone ever really understand my “problem.” Here goes:

    Have trouble eating? Doctors can help. Have trouble walking? They will help (and, of course, they shoukd help). Have trouble breathing? Again, help is on the way! Seeing, hearing, etc? They will help (or, at least, they will TRY, honestly try). But sleeping? Nope. Obviously, I’m doing something “wrong” that I can control if I really try hard enough! So many of these doctors have wished that I was depressed or had sleep apnea (one can’t experience “apnea” if one never falls asleep). Whenever they find out that I just don’t sleep, they sort of just shut down. There’s this “glazed” look they get, like “oh, um, sorry, don’t let the door hit your butt on the way out of my office…” One of them suggested that (and he was serious) that I “take warm bubble baths, listen to classical music, and use scented candles”… How condescending and misinformed these doctors are! Why would I go to the ER after six straight nights of ZERO sleep? I’m talking about fully awake, fully conscious torture… And this shmuck talks about candles?

    So, yes, ginnis et al, I DO know what you are talking about with the drug-request situation. I do not like to drink (maybe a glass of wine once every three months or so), marijuana is overrated (except for cancer patients’ pain), and Vicodin does NOTHING to me or for me, but if I ask for Ambien or Valium or for real sleep help, I’m treated like an addict most of the time! I don’t want or need anything else, except for sleep meds because they are the only remedy for this torture.

    My suggestion is to “doctor shop.” I know that it is the dreaded recourse for most, but you have to go to many insensitive, ill-informed doctors before you find one who really understands that extreme insomnia is real and is not your fault.

    Not sleeping at all is very rare and I have never met anyone like me, so if I seem frustrated, I am and I am venting. However, all of your suggestions have been helpful and I’m going to do my research and take these suggestions to my wonderful doctor. She is a rare find, someone who will listen and who believes me and who will talk to pharmacists about my rare need for more meds than most. Again, you have to kiss many frogs before you find your prince, and it will happen if you do your legwork. And you have to try many different meds before you find one that fits you. We may have very similar sleep issues, but we are all unique in the way we metabolize meds, so we resign ourselves to the fact that we must become subjects of science experiments and try many different remedies before we find one where we can function semi-normally.

    Ambien works best for me, lots of Ambien, unfortunately. I don’t get the next-day crazies or any side-effects other than a high tolerance. I rarely sleep-walk “eat” and I normally sleep-clean the house if I do experience side-effects. NEVER do I drive. I think that whatever your normal abnormal inclinations are, you will experience them on Ambien. People who drive drunk or desire sex with strangers (these are rare individuals) could end up doing this on Ambien. These people are giving Ambien a bad name and are making it harder for those of us to get a correct dosage of it who think it is a godsend! Here’s what happens most of the time I take Ambien: I go to sleep… Once in a while, I’ll do the dishes or eat a bowl of ice cream and not remember doing these things. But I don’t even let the cat out or go near a door or phone anyone, much less drive on it.

    Rozerum does nothing for me. I hate it. Every doctor wants to prescribe it to me, though. Why? Because it sucks! Lunesta? It works, but it feels like I’ve been licking toads all night when I wake up (not that I lick toads!). Trazodone? Clogs me up and I can’t breathe; plus, you must take it with food. It makes me feel drugged, not sleepy: there’s a difference. Restoril? Did nothing. I was awake all night. Advil/ Tylenol PM/ OTC sleep aids? I could take the whole bottle and I would not sleep a wink. I get a very dry throat, though. Melatonin/ Lavender/ Passionflower/ Valerian Root? Awake, fully.

    We all need real help, not lies and false promises, and, most of all, no more prejudice!

    Thanks for reading and understanding…

  16. LeeEllen

    I LOVE Ambien! If I could take it every night, I would. Once, I did take too many and I did sleepeat. However, I realized it the next AM and corrected the dose; no problem. Regardless, I would still take it every day, if I could. When you could still (legally) buy drugs online, I bought Ambien 90 at a time. It was heaven! I was able to sleep EVERY night, with no problems. I never have hangovers or slow responsiveness. However, loss of sleep causes those very symptoms.

    I do have restless leg syndrome. I finally found a doctor who would (at least) give me a prescription for Mirapex. I thought that would help. Honestly, I still have restless leg syndrome and it has not helped my sleeping patterns one bit. I doubt that I will spend the money to keep taking Mirapex, but I would spend LOTS of money to get Ambien every night.

    Some nights I can manage to(finally) go to sleep, but I awake at 2 or 3 in the morning and cannot go back to sleep. I HATE IT! I used to have terrible night terrors, but on Ambien, that all went away. My biggest problem is, of course, I cannot go to sleep until 1 or 2 AM. I still have to get up at 7:30 to go to work. Benadryl, Tylenol, long baths, warm milk, “relaxation” exercises, going to bed early, going to bed late, getting up early, getting up late, lavender, turkey, herbal remedies, even acupuncture – NONE OF IT WORKS! NOTHING works like Ambien!

    I completely agree with the previous writer. If you ASK for Ambien, the doctor is ready to report you the Feds! Last year, I had to take massive doses of steroids for a serious inflammation in my foot. It didn’t matter how much the steroids helped my foot, it wreaked havoc with my sleep. I had to BEG the doctor for Ambien. She said, “That is not a usual side effect.” I replied, “Well, it is with me and I haven’t slept in FOUR days! YOU HAVE GOT TO HELP ME!” When I grabbed her collar, I think she got the message, but it was only a VERY short term prescription.

    There is a “me too” drug on every ad on TV. “I saw that drug on TV and (me too) I think I have that disease. Please, give me some Pill-X.” No problem; the doctor is happy to give you the remedy. If I had heart disease, they would give me any number of medications – gladly – for the rest of my life. If I had high cholesterol, I could get an endless supply of Statins. If I had asthma, I could find a cure on every street corner, but sleeplessness….? Too bad! Sleeplessness IS life threatening! WHY can’t I get help?!

  17. So, here it is just before midnight and, although I am exhausted as usual, instead of preparing for sleep like I ‘should’ be able to do, I am responding to this blog, and I have no idea why, except that I heard Gayle Green on NPR today and desperately wanted to visit this site to express my sincere thanks and appreciation to her. Insomnia has ‘plagued’ me for decades. Or, more accurately, attempting to force my body clock to conform with the demands of regularity, has consistently led to nothing but failure. But society is relentlessly unforgiving. Consequently, I am “self-employed”, incapable of earning even a poverty level income, despite always having been an honors student, a Cum Laude university grauduate, the holder of a J. D. degree and a practicing attorney for more than 23 years. I abandoned the legal field many years ago. My mind is as tenacioulsy curious as ever, but I simply cannot work on society’s schedule.

    co the question of medication, Currently I am taking approx. .5 mg of sublingual melatonin when I manage to get myself to bed. I read for about 30 minutes or so, take the melatonin and turn out the lights. This ‘routine’ produces sleep, and if I could take advantage of its effects by sleeping for about 9 hours, wake up and be active for approx. 3-4 hours and then sleep again for an hour or so [it varies, of course], I am sure my body would be much happier. Problem is, there are only a few hours of each day left into which to attempt to work, answer/return phone calls, shop, exercise, etc. In other words, it’s an impossibility. Insomnia is serious, chronic and politely ignored by the rest of society. Whenever I hear someone say ‘take care of yourself’, I have a mixed reaction of anger and laughter, knowing that they have absolutely no insight into the debilitating nature of this condition, and knowing that in this society’s structure, it is IMPOSSIBLE to ‘take care of myself’.

    So, I am in hopes that I will occasionally have the time to read other posts and perhaps be able to respond from time to time. Maybe we’ll begin to bring about some changes, at least a recognition that this is very real and extremely disabling.

  18. HeatherM

    Yes, I also found out about this yesterday after my husband ran into the house, yelling, “Hey! You HAVE TO turn on NPR. It’s YOU: your insomnia!” So now I’m here with all of you. I will admit that I have a mostly “hate”-relationship with the Internet. Generally, I think it’s a time-suck, but I haven’t been able to stop reading and posting ever since I heard that there are others as ill as I am (yes, “ill,” “sick,” not “crazy”).

    What I have noticed is that we all have nasty cases of chronic insomnia, but there has been another overwhelming characteristic about every other post on this site: we are very good writers, very articulate. Usually, I do not like to post much or read much online because the writing drives me crazy because it’s so bad! I teach English so I see errors all the time, but there are so few here.

    The burning question: Does our relationship with words make us more prone to this severe type of insomnia?

  19. Ruth

    Thank you Gayle, for Insomniac. Can’t wait to read it. I very much appreciate how you have focused attention on this misery so many of us have suffered in isolation.

    I’ve had insomnia since my teens. Or a weird sleep pattern anyway. I couldn’t go to sleep until about 3, then needed to sleep until noon. I was lucky that my parents, one of whom was a psychoanalyst, allowed me to sleep in whenever I needed to so long as I did the work and kept my grades up. When it came time to graduate, it turned out that there was a state law saying that you had to have attended school more days than you had been absent, no matter your grades, and at first they were not going to allow me to graduate. My father intervened and they gave me my diploma.

    It was not so easy after college (avoiding morning classes). Law school was a killer (couldn’t avoid morning classes). Eventually I found my way back to my original coping strategy, by being self-employed, but this was after many years of struggling to work in pretty high pressure jobs on little sleep. I used benedryl and alcohol to try to keep on a regular sleep schedule.

    I find that I’m a person who can’t feel good and function really well on less than 8 hours a night. I’m 61 now and I’m astonished to realize that I denied to myself how much my life was made to fit around my sleep issues. I’ve had a wonderful life–I’m not saying that–but as much as I thought constantly about getting enough sleep I would never have admitted even to myself the degree to which that need ruled my life.

    A few years ago, for the first time, I went to a neurologist to see what he could do for me. I had a sleep study (useless, as per Gayle’s comments) but he was sympathetic, took it seriously, and offered me Ambien or valium. I had been using valium off and on for years for situations when I had to conform to the world’s expectations of when the day begins (I had a prescription from a friend who is a doctor) and it worked so well for me that I opted for that. I find that even 1/4 of a 5 mg. valium works most of the time. Sometimes it has to be 1/2 or a whole one. I start small, then work up. I can sometimes sleep without anything, but not often. I find that I can usually tell if I’m going to be able to fall asleep.

    I know that one shouldn’t take the family of drugs that valium is in for long periods, but I don’t know really what the risks are. It works so well for me I’ve been reluctant to find out.

    The neurologist also recommended melatonin which I take as well. It doesn’t do much for me if I’m having insomnia but I take it anyway, feeling it can’t hurt, and that maybe it helps keep my sleep cycle in sync a bit.

    I’d be very interested to know what anyone knows about dangers associated with small dose valium (diazepam) use. My doc allows me about 20 5 mg. every 3 months or so. By the way, I wake up feeling great. If I wake during the night I go right back to sleep.

  20. TOG

    What do you do when you can get to sleep but wake up at 1 or 2 or 4 am? I don’t want to take Ambien (the only script I presently have) ‘just in case’. I do wake up every night and I do not sleep well ever, but I guess I’m always hopeful plus I am afraid of getting hooked on pills. I’m hooked on my IPod for listening and returning to sleep but I would so love to sleep deeply through the night.
    Also, with Ambien, I need a lot of hours–9 or 10, in order not to feel weird in the morning and worry about being able to drive to work and function well. I”ve tried melatonin–still use it and sometimes drink Bedtime Tea with valerian which seems to help but makes me get up in the night (sort of self-defeating).

  21. Lorelei1528

    I have DSPS (Delayed Sleep Phase Syndrome), which I have suffered from (according to my mother, as of course I don’t remember that far back) since I was three days old. I cannot remember a time when I could fall asleep ‘naturally’ before 4 a.m. Of course, I have been frustrated and angered all my life by those well-meaning but clueless idiots who advise, “just close your eyes and relax, and you’ll go right to sleep” (no, nitwit, if YOU close your eyes and relax, YOU’LL go right to sleep; if *I* close my eyes and relax, *I* will be awake until 5:30, and THEN I’ll go to sleep).

    The best option, of course, would be to shift my sleep patterns from 5 a.m. or so to noon (I experience sleep of normal duration and quality as long as I sleep during that time), but that is not currently an option. I work 9 a.m. to 5 p.m. daily. (I am, however, working on building up my freelance proofreading business with the intention of shifting my work hours to all night.)

    Currently, to allow me to work “normal” hours, I take 5 or 10 mg of Ambien each night. I have not experienced any negative side effects, other than what I call “buzzed e-mailing” (the equivalent of “drunk dialing”) which means that after taking my Ambien I do not sign off the computer quickly enough, and send over-emotional or silly e-mails that I regret the next morning. I also have made purchases on the internet (what my friends and family call “Ambien shopping”) about which I kicked myself the next day. However, I have never done or said anything while on Ambien that I did not remember the next day–only things that I regretted the next day. I equate it to be mildly intoxicated as opposed to blacking out.

    On weekends and vacations, I stop taking Ambien and revert to my normal sleep schedule, which is about 5-6 a.m. until 12-1 p.m. I have not experienced any symptoms of addiction; when I stop taking it for a few days or weeks, I immediately (with no lag period) revert to the exact same sleep schedule I had before I started taking it. Of course, my DSPS is chronic (25+ years now) and severe (shift/delay in sleep onset by greater than four hours from “normal” sleep onset times), which means that taking Ambien for an extended period of time is not going to “cure” it–just stifle it.

  22. Deeny Davis

    No one has mentioned Zyprexa. I know it’s not great stuff, but it was originally prescribed to me for anxiety at 2.5 mg, the lowest made. I was always a poor sleeper, but when I went off of zyprexa my insomnia became profound, worrisome, and acute. Now, I cut these pills in the smallest portion I can — usually in half and take that to get thru the night. I know it has bad side effects, but nothing else works for me and I cannot function after laying awake for entire nights in a row. My neurologist now recognizes the brutal reality of insomnia, and would like to read Gayle’s book when I finish with it. He is willing to work with me in any way to help the situation, but he admits to being stumped…except for chemical Rx’s. Someone earlier said they are not ashamed to use medicine, but I am. I continue to object to taking chemicals (that have many other effects on the body & mind) every single night. If anyone else uses zyprexa, please describe your experience.

  23. falasta

    The very first time I came down with insomnia was the weekend I had a devastating emotional breakdown and was diagnosed with clinical depression. The blessed psychiatrist who saw me that Monday morning knew the very first thing she needed to do was to get me to *sleep*. So she prescribed some sleep aids, like Ambien. The Ambien put me to sleep, but it made me feel nauseous and unnatural. Because such medications are also meant o be short term, she wanted to try something I could be on as long as I needed. Behold Trazadone! I know this medication seems to work for very few people, but for some reason it became my miracle. I take it thirty minutes before going to bed, and I’m actually able to *fall asleep*. So far, no one seems to know why I literally can no longer sleep without medication. But for the past ten years I’ve taken anywhere from 25-200 mg of trazadone whenever I need to sleep and it does the trick.

    Of course, the problem remains that it doesn’t work unless I’m actually *tired*, which is a whole ‘nother problem. But I can say that in my case, which I guess is rare, it saved my life.

  24. Temple

    I wonder if anyone else has had this odd reaction to Ambien. I took it on and off, especially while traveling, about 5 years ago. Then I began noticing that my stomach felt yukky the next day. I asked the doctor and pharmacist about it, and they said it was an unusual reaction. But I stopped taking it.
    Now that I am doing some traveling again, I have tried Ambien. It seems to work most of the time and only once did my stomach feel yukky the next day. I sometimes use 5 mg sometimes 10. Last Sunday I took 10, slept, and felt fine Monday. Last night I took 10 mg, slept well, but have had stomach upset and gas all day long.
    I would love feedback.

  25. Barbara B.

    I’ve been “hooked” on OTC sleep meds (doxylamine succinate under the Walgreen brand Wal-Som, same as Unisom) for over 25 years. Awhile back, I thought I saw something about someone suing Unisom over a heart valve condition related to this drug, but I am unable to find anything on the Web about it now. Have you heard anything about this? (Also noticed that Heath Ledger had this drug in his system when he died. )

    Haven’t read the book yet, but I’m going to order it very soon. Will read all the other postings too. You’re bookmarked!

  26. onceslept

    marginal1 said” sleep until about 8 a.m. I very seldom go to bed before midnite, because I know I get even LESS sleep if I go to bed too early.” Here may be a key for some. I’m not a morning person the whole circadian rhythem thing. I’m a teacher-have to get up at 5am -my internal clock is so out of sync! I too am on clonazapam w/ a twist of Lunesta, after a bazillion other drugs tried

  27. JeffW77

    My story: “Tired all the time” virtually my whole life. I first brought this up to an MD in 1982 when I was 26 years old. He gave me “the usual” advice about getting enough rest, enough exercise, eating properly, etc. I have had three sleep studies, in 1995, 1998 and 2007. The doctor who administered the 1998 study told me, in response to my question about data from the study, “You have a brain wave issue that appears to affect your sleep.” He did nothing about that issue. I was so desperate for a solution that I virtually begged him for a CPAP machine, figuring that my problem was breathing related. Well, I got my CPAP, but I don’t have a breathing problem, so the machine was an expensive failed experiment. In November 2007, I had my third sleep study. The brain wave issue was still there–alpha intrusions that keep me from falling into Stage 3-4 slow wave sleep. This doctor said “You are not getting deep restorative sleep.” I was ecstatic–happy that he found a scientific answer, so to speak. He prescribed Ambien. It worked GREAT for six months. I thought I was in heaven. An unfortunate side effect was aggressive behavior. That was dealt with after four months by starting on Lithium. Unfortunately, the Ambien became less effective after six months and virtually non-effective after six more weeks. The doctor did not tell me that Ambien is typically used for short term treatment, nor did he indicate that it would become less effective or non-effective after “x” months, nor did he explain “rebound insomnia”–inability to sleep while changing meds or stopping Ambien. No other meds have worked yet. I bought “Insomniac” today and feel like much of it is about me. I have an appointment Thursday with a new physician and hope to have finished the book by then. God Bless all of us who are afflicted with insomnia.

  28. Feelinghopeless

    I started with insomnia at age 37, was very healthy then I took some chinese herbs called Jin bu Han (banned in US since 1995) which damaged my liver to the point of near chirrosis. I am 55 now and have tried Trazadone, (worked for 1-1/2 yrs) Ambien (yuck) Sonata (bad) Doxepin (one night only,too hung over)antihistimes(usually only work 1-2 nights)Rozarem(no!). Then I entered a sleep study for a trail drug and in restrospect is was not a good idea. They found nothing physical but I did get hooked on Lunesta 3mg. For about 4 years it really worked great and I could keep up at work. However, I have become habituated and have not found a replacement. I was a caregiver to my parents for around 10 years, which was very stressful and have since lost my marriage, my home and my job, my earning power, my sanity it seems at times, and have a liver problem and very low immune system. I went off all the drugs 10 days ago and have slept approx. 1.5 to 3 hrs per night, it’s torture and no body in my life understands. I’m considering CBT and going away somewhere where there is no stress. Anyone have suggestions? Does anyone know is Ambine CR time release really works?

  29. Christina

    I have been taking Trazadone now for 2 years for sleep 50 mg before bed (a low dose). Suddenly, I am seeing double images on objects that move. This is the strobe effect, a side effect of the drug (called akinesia). I was so worried before I started doing research on the drug and discovered that this is a side effect. Hope this helps folks out there who suddenly experience this side effect.

  30. Glad to see I’m not the only long-term user….from listening to various docs/counselors over the years you’d think I was. Such reluctance to prescribe the thing that would actually help me, and such eagerness to get me on some antidepressant I didn’t need. Paxil withdrawal was an absolute nightmare…I’ll never try that again.

    In any case, I take something most every night, have for the past 4+ years. Usually 5 mg Ambien, though lately this is not enough. Sometimes I take Alprazolam .5 mg, as I am under the impression that this is a less strong drug that will be easier to wean off (true?) Occasionally I am feeling calm and happy enough at bedtime that I can take 2 Benadryls and sleep well, with less grogginess and a better mood the following day. Very occasionally, I go a few days sleeping 5-6 hours without any pharmaceutical assistance. A strong, foul-smelling cup of Valerian tea helped me for a while. Last night was an Alprazolam night, and today I feel a bit depressed. Always trying new things.

    I think all these strategies–including sleeping sparsely and with no assistance–take their toll. I would just love to know what it feels like to have real energy from sleeping 8-9 hours with no drug hangover. Maybe I’d actually enjoy my job! Stay in better touch with friends! Keep the house cleaner! Imagine that.

    I am grateful for the assistance of the kind, selfless people (tongue FIRMLY planted in cheek) at the pharma companies who have made it possible for me to sleep at all but I remain hopeful that someday I won’t need their help. I do wish someone would let the shrinks I used to see for insomnia know that it is a chronic condition of its own, not just a symptom of depression or anxiety, not treatable with SSRIs which they love to give out like candy.

    I don’t think my insomnia is simply a product of anxiety. I was gratified to see the article just posted about new research showing that we lack a neurotransmitter. But if it’s that simple, can’t we just supplement our diets with what it is we lack? I eagerly await more news.

    I wouldn’t say that I experience withdrawal from Ambien or Alprazolam. If conditions are right, I can go off them. If conditions are wrong when I try to go off, I won’t sleep–but that’s no different from my default state.

    Thanks for the great site.

  31. Shannon

    Someone on here commented that most on the site seemed to be extremely articulate and maybe our insomnia is related to being “writers” or a certain personality type. I noticed the same thing. I am a lawyer as are many people who posted here.

    I know this is not helpful to anyone in anyway, but it was a fascinating observation. Everyone on here writes very well, particularly given how tired we all are!

  32. ReneeI agree with your ambien thoery and I believe many others suspect it too, but they keep quiet out of fear of their own sleep aid being taken off the market. Everybody’s on it, including the lawyers, judges and politicians. I also have had a very bad experience with this incredibly dangerous, science-fiction like drug, and it’s taken me three years to get some semblance of a normal life back after the consequences for a totally non premeditated event. Glad I didn’t kill someone or myself as other ambien victims have. God save the ambien users.April 14, 2012, 6:14 pm

  33. Arg, you too!? I feel for you. One thing I’ve noticed, I’ve cut known staulmints and still not sleeping. Plus side, I can start drinking coffee again soon! But there are some foods that cause restless nights, as does gluten, but gluten can take several months to leave the system. Not giving up! And you’ll be the first one I share any new info with!

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