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Been battling chronic insomnia for two decades, desperate.

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This topic contains 11 replies, has 6 voices, and was last updated by Martin Reed 6 days, 7 hours ago.

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  • #35916

    living_tribunal
    ✘ Not a client

    As you can probably tell by the time of this post, I don’t sleep well.

    The first night I stayed awake for a full 24 hours was before a hockey tournament in 6th grade. That night would change the rest of my life. After I realized it was possible not to sleep, I didn’t.

    Fast forward 15 years, I continue to average 5 hours of sleep per night. This isn’t 5 hours per night for a short period (3 months), this is what I just average all the time.

    Except recently.

    I’ve always used alprozalam to manage sleep. I sleep terribly with it but slept significantly worse without it. I was tired of using medication for sleep and told my psychiatrist I’d like to cut my dose in half.

    This was 5 months ago. I have been persistent on sticking it out this entire time with the lower dose/quantity but my insomnia continues to get worse.

    I’m now averaging 4 hours a night.

    For the last two months, I’ve been very dedicated to cbti. For a short while, I felt it working and was actually falling asleep when I got into bed. I really didn’t mind the 4.5 hours from the sleep restriction but being able to simply fall asleep made the world to me. Despite waking up within the same 30 minute window every single morning, even on weekends, and not getting into bed until 30min-1 hour before bed, I’m back to getting very very little sleep. I doubt I’ll even fall asleep tonight.

    I guess I’m curious as to what someone with life long chronic insomnia should do when cbti is not working? Insomnia is absolutely ruining my life and I’m desperate for sleep. I’m tired of taking pills (they just help me and consistently). I’m tired of losing focus for work. I’m tired of not being taken seriously by my psychologist.

    I would do anything to get 6 hours of sleep per night. Considering cutting back on my medication for 5 months did not help, I think I should go back to my normal dosage. I had been on that quantity for several years and while I didn’t get the most sleep, I fell asleep consistently.

    I think sticking with cbti plus my old dose will get me back to getting 5.5-6 hours of sleep and maybe more. Are there candidates who truly need medication for sleep? I just feel like I’m one of them.

    I’m about ready to give up and desperately need help.

    #35923

    Deb
    ✓ Client

    Check out The Sleep Book by Dr, Guy Meadows. He developed an alternative therapy for insomnia, which most people have never heard of. It’s based on something called ACT. You can also find information at his website. I have been successful in recovering from insomnia using this therapy. It’s more tricky than CBT-I though, because you have to learn to change your thinking. It’s easy to not practice it correctly and as a result, not get any better. This is when people give up. So it’s best to get help. But read the book first. it’s an easy read and it will open your mind to a totally new possibility.

    It’s also possible that you are not practicing CBT-I correctly. In that case, work with Martin Reed, the founder of this website, and he will help you do it right.

    #35944

    Edgar
    ✘ Not a client

    ” After I realized it was possible not to sleep, I didn’t.”

    When I discussed the possible causes of insomnia on another forum some 10 years ago, I used pretty much the same words. I said that in my case insomnia is not the result of anxiety, depression or anything like that, but the simple REALIZATION I made as a kid that we can interrupt and ruin our sleep with nothing more than our own minds. I still maintain that if a hundred people, healthy people, were asked to give the phenomenon of sleep some serious thought, 50 of them would come back as insomniacs.
    It is dangerous to think about sleep too much, and I admire sleep professionals who do this for a living and retain their good sleep.
    I first realized that I don’t sleep like other people when I traveled as a kid with my family to vacations in buses, trains, cars and saw that no matter how much I try, I can’t fall asleep and had to stay awake the whole trip. Later I found out that I struggle to nap during the day while everyone else seemed to nap whenever they could, for instance after school, and enjoyed their naps a lot (who wouldn’t)! This insomnia never really went away, just changed from sleep onset to sleep maintenance after I stopped fearing sleep so much. Now I fall asleep relatively easily, but have trouble staying sleep. I too sleep 4-5 hours a night,with no naps during the day. But with the help of pills I sometimes manage to pull 6-6.5 hours.
    I don’t have any real advice, only that I think you should stick to what works for you. If it’s pills, it’s pills. Anything is better than no sleep. As corny and dramatic as it sounds, no sleep really is no life. What made you tired of taking pills? What did your psychologist say about that and why do you feel they’re not taking you seriously? If so, can you change to another?

    • This reply was modified 2 weeks, 1 day ago by Edgar.
    #35946

    mb
    ✘ Not a client

    i was wondering if you could share what if any physical effects the chronic insomnia has had on your body.
    Do you have heart problems, high blood pressure ? do you think youve aged prematurely ?
    do you do any physical exercise during the day despite not being able to get any restorative sleep at night?

    thanks

    #35947

    living_tribunal
    ✘ Not a client

    Hey everyone, thanks for the replies. It’s nice to discuss this with others because there really aren’t many people who understand what chronic insomnia is like.

    If I get told to ‘read a book’, ‘take a bath’, or my favorite ‘do some meditation’ one more time…

    To answer your questions:

    Deb- I will check that out, I’m open to a lot right now. I do think I’m following CBT-I to the T however. I have woken up within the same 30 minute window every single day, no exceptions, for the last two months. I started off on not getting to bed until it was 4 hours before waking up. After doing that 4 days in a row, I moved that up to 4.5 hours, then 5. I was successful up until I tried to push for 6 hours of sleep.

    I decided to refill my medication which is certainly helping. I have gotten 5.5-6 hours of sleep, with no issues falling asleep (most important thing imo), for the last 3-4 days now and feel great.

    I’m beginning to wonder if I’m someone who just needs only 6-6.5 hours of sleep a night. It would explain why I have insomnia the night after getting 7. At least with 5.5-6 hours of sleep, I fall asleep consistently (with my medication).

    Edgar, I feel our stories and experiences are very similar. I too detest sleep. I’m a rather obsessive person with work. I get hyper-focused on anything I’m working on and find it almost a chore/waste of time to sleep. I think I have taken 2, maybe 3, naps my entire life. Sleep is just a tool basically for focusing, like food is for energy. I treat sleep like I do eating: get it over with and get back to what you were working on.

    You are correct in your statement regarding insomnia never really going away for those with chronic insomnia. There hasn’t been a night in the last 15 years for me where I didn’t take my sleep hygiene seriously as I know the potential consequences.

    I wanted to cut back on my medication for a few reasons: 1.) The obvious one, everyone says you shouldn’t do them long-term. 2.) When my medication is available, and I can’t sleep on my normal dose, I naturally take another. This leads to me being 1-3 nights where I don’t have medication. That’s when a bad night can take you off of your rhythm and put you back on a 3-4 month long insomnia bender.

    After my 4 month attempt at lowering the dose, I realized that I went about it incorrectly, or at least in my case.

    I guess I didn’t really consider my situation when going forward with this. My brain is impossible to turn off, it’s not stress or anxiety, it’s that my brain just wants to constantly solve whatever I last worked on. If people have to take medication their entire lives to manage chronic anxiety, maybe it’s not farfetched to think I too am a good candidate for permanent sleep medication.

    I was the one to bring it up with my psychologist surprisingly. I’ve been going to him for almost the entire time I’ve had insomnia so he knows my situation. He didn’t pressure me when I asked to go back to my old dose. I do think he doesn’t understand the severity of my insomnia though. I think when a chronic insomniac tells a normal person they don’t sleep well, the normal person translates that as maybe 2-3 nights a week of 6 hours of sleep. They don’t understand that you get 4-5 hours of sleep every single night for months on end. For me, this is always the source of frustration and hesitation for discussing/working with doctors on the subject.

    For point #2, what I plan to do going forward is if I have a bad night on my normal dose, I need to stick it out. I need to never take more to ensure there are no hiccups.

    As you all are all aware, it’s all about consistency with your sleep hygiene when dealing with this.

    MB, I don’t think I have any of those issues. Or at least not to the degree that they are noticeable. My entire family is filled with high blood pressure individuals. I also get low blood sugar very fast with my fast metabolism. Food plays a big part in managing my insomnia; i.e. the time I eat, what I eat, how often, etc.

    I lift weights 3-4 days a week. Even when I’m very tired I try to not let insomnia dictate what my normal schedule will be, and it sucks really bad. I still drink a cup of coffee, put on my sneakers, and hit the gym the best I can. There are many days that I just can’t though.

    I try my best :/

    What’s working for me right now:

    I think going forward, staying on my normal medication dose and sticking to cbti will normalize things. I’ve changed how I approach CBT-I the past week. I used to stick to the old template of gradually scaling up time in bed depending on previous success attempts. I now do this:

    Obviously wake up within the same 30 min window every single morning, no exceptions.

    Instead of determining a set time to get into bed, like CBT-I instructs, I now just watch tv on my couch downstairs until I’m very very tired. That is the time I go to bed. I hide all clocks so I’m unaware of the time. It’s simple, if I’m not tired, then I don’t need to sleep at that time. If I’m tired then I’m ready for sleep.

    I’ve found this has relieved a TON of the pressure on “ok, I did 4 nights successfully at 5, let’s go to 5.5”. I may only be getting 5 hours of sleep a night, I don’t even know! To be honest, I don’t care. I am falling asleep when I try to. If I’m only getting tired at 5.5 hours a night then that may be all I need. Maybe my sleep drive will build up to the point where I get 6. But I’m going to follow this for the foreseeable future, it’s working for me.

    Thanks for all of the feedback, questions everyone. It’s nice to discuss this with others. I’ve never done this before.

    #35969

    mb
    ✘ Not a client

    i sounds like youre doing relatively well , lucky for you
    can i ask what sleep medication are you taking and how long have you been on it?
    my doctor gave me zopiclone , but i can see he is reluctant to keep prescribing it repeatedly
    do you get the same reaction from your doctor ?
    i imagine people turn to cbt-i and acceptance therapy as there is no other alternative for getting help
    thanks
    mb

    #35973

    Edgar
    ✘ Not a client

    Hello again, living_tribunal.

    I wouldn’t say that I detest sleep, quite the opposite , I love sleep, I just wish I could get more of it. I hate the constant lack of sleep and especially nights with no sleep, which are, thank God, rare.
    You’re right about our brains unable to turn off. In my case it’s not because I think about some external problem or obligation in my life, but because my mind is always at least a little bit too focused on whether it will fall asleep or not.
    At least that was the case when my insomnia was mostly of the sleep-onset type. Now that my problem is sleep maintenance, I don’t really know what to think anymore.

    “what I plan to do going forward is if I have a bad night on my normal dose, I need to stick it out. I need to never take more to ensure there are no hiccups.”
    – Good plan, I hope it works. I’m in a similar situation and I manage to hold on till the next dose (though every time just barely). I sometimes take more than I should, but other times I don’t take any, so it evens out at the end of the month. They say we will all have to increase dosages in time due to resistance, but there are cases of people staying on the same dose for a very long time, why not hope we are one of those cases.

    I don’t like being without pills, THAT makes me anxious. 🙂

    Good luck!

    #35975

    whitelori
    ✘ Not a client

    Hello living_tribunal, You say you take alprozalam for sleep. Do you mind telling me how much you take per night? Do you alternate or take it nightly or just leave it on the nightstand and see if you need it? I do have this medication, but try hard not to take it as I know it is a drug that within 7 days of using daily, the body builds a tolerance. My doctor advised I not take it more than 3 times per week. I would say out of all the medications I have tried, this one works best when I am desperate. I honestly rarely get deep sleep! When I see someone say they get 5 hours nightly, I wish I could have that although I know that much would not be enough to feel good so I empathize with anyone who gets less than what make them feel well. I have tried ACT and some CBT-I. ACT right now is not working for me at all as I just lay awake there despite accepting, accepting, accepting. I like your idea of not paying attention to the time to go to bed. I often would feel so tired and ready to go off, but would instead wait as the program suggests only to be wide awake. I would rather not look at the time and focus more on making sure I get out of bed daily at the same time.

    mb – I have had chronic, severe insomnia since my late 20’s, and I am now 51 going on 52 in a few weeks. I’ve had two babies through it. For those who have asked about how it affects health, I am very healthy despite it. I am not overweight, low BP, and no health problems at all. I work out daily. The only thing now that I notice is skin laxity issues which I am not sure if that is more related to post menopause. I am told I look younger than my age all the time, but I do notice sagging skin. I am so desperate for change. Like all of us, I just want to put my head to the pillow and fall asleep like a normal person. It is my mind that keeps going and no matter what I do, acceptance, mindfulness, writing, reading, listening to music, etc., my mind will not rest. The feeling of sleepiness eludes me most of the time. I would love to one day come to this forum and say I have made some progress and maybe be helpful to someone for once. I appreciate all the posts here as I glean and continue to learn!

    #35976

    living_tribunal
    ✘ Not a client

    I take alprozalam. I’ve been taking it for about 6-7 years now for sleep. I take .5 mg a night, sometimes less, sometimes more.

    I’ve been seeing my psychologist for about 15 years and he’s known my sleep situation and that I don’t abuse my medication so he’s pretty understanding about it.

    I need a benzodiazepine specifically because my insomnia isn’t depression related or anything like that. I simply become too obsessive about my work and personal projects. I always have my greatest clarity for deep problems when I start winding down for the evening. I don’t want to let ideas slip so begin typing them up.

    My brain simply never wants to turn off and always wants to keep solving problems so I have to dumb it down. If I don’t, I could easily work throughout the night every day.

    #35977

    living_tribunal
    ✘ Not a client

    I of course have developed a tolerance but it’s still enough to always put my brain in the state it needs to be in to sleep. I don’t mind not having the super relaxed feeling, I just need to turn the dang thing off! .5mg has done that for the last several years.

    #35978

    whitelori
    ✘ Not a client

    That is exactly my problem. I think the sleepy feeling might return for me if I could get my brain in that state. You say you try to solve problems, and I would say I do the same and more. My brain also enjoy reviewing events, conversations, past or present all night. It is maddening. Mindfulness does not squelch it for me. I have tried so many times. My doctor is also understanding and probably wouldn’t mind me taking .5 a night. As long as I don’t go more than that. I’m like you and very careful about the benzos. Thanks for sharing. You said you skip sometimes. Do you decide that right when you turn the light out? Or do you attempt to go off and then if not, take it on the night you might skip?

    #36072

    Martin Reed
    ★ Admin

    It sounds as though you are doing well and you are making progress, @living_tribunal! It does sound as though you have a lot of concern about how much sleep you are getting from night to night and this may be making sleep more difficult since worry and concern activate the arousal system and this suppresses sleep.

    The thing about sleep is, it always happens in the end. With enough wakefulness, everyone will sleep. Another thing about sleep that’s good to know is that the body will always prioritize deep sleep and always provide you with at least the minimum amount of sleep you need to get by.

    When it comes to deep sleep, this is pretty much completely over within the first third of the night. So, if you are getting somewhere between two and three hours of sleep, then you are probably getting all of your deep sleep. This is why you are still here today, after 15 years of insomnia — because your body is giving you enough sleep.

    The challenge, of course, is how to get more sleep — and, ultimately, this is best achieved by removing ourselves from the process as much as possible. In other words, by abandoning any and all sleep effort. Instead, our goal should be to set the stage for sleep — by allotting an appropriate amount of time for sleep, by being active and engaged every day, by getting out of bed by the same time each day, and by getting out of bed when being in bed is unpleasant, for example.

    I think a key insight you have recognized is that going to bed only when you feel sleepy enough for sleep is really helpful! The clock doesn’t know when you are sleepy — so, if you are still following a sleep window, try to see the start of that sleep window as your earliest possible bedtime and only go to bed if and when you feel sleepy enough for sleep. Try to stick to a consistent out of bed time, though, to give your body clock a strong morning anchor.

    I am confident that if you remain committed to cognitive behavioral therapy for insomnia (CBT-I) and keep looking forward, you will continue to find success. This is a marathon rather than a sprint!

    I hope this helps.

    The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.
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